Christmas is hard time for lots of people, myself included.
For me, it's a reminder how alone I am in the world. I have very very few friends here partly due to my health and having to remain mostly homebound. I have my dad and love him, although most the time I feel like the love is a perpetual one way street. It's a similar situation with two of my brothers who live across the province - I can love them, but due to their disabilities, they don't really seem to have the ability to 'love' anyone in return. And as most of you know, I really haven't dated at all since becoming ill in my early 30s, so there is no partner in my life, and no children, and likely there never will be.
Also, in the last two years I lost my mom and my closest Aunt (in August). I realise it's completely selfish, but sometimes I feel like these two women were the only people left in the world who really loved me. On the one hand, this makes me realise how lucky I was. On the other hand, sometimes since they died I feel adrift in the world, like without their maternal love I've lost my anchor - yes, even at my age.
Back to the holidays, given it's a time when people get together with friends and family, it makes me feel my lack thereof. While my father appreciates some celebrating I would have to make it all happen myself as he is unable (whether that's cooking, decorating, gifts, whatever). Then there's the fact I'm ill/weak/colossally fatigued not to mention there is no one here outside of my dad to celebrate with. My roommate is not very keen on the festive aspects of holidays, works a lot this time of year, and I don't want to force my dad on her.
My energy is pretty low right now and the POTs is bad (I am having a really hard time tolerating standing) - I just don't have it in me to make much happen on my own. That said, I love some of these things, they are worth the crash - cooking, baking, decorating, lights, etc. but it feels pointless to do them when there's no one to do them for but me.
Can you tell I feel blue? I was watching Simpson's the other night and they were making fun of people who read a certain series of popular children's books (which I do) and I think the line was "adults whose lives are lonely and pathetic". Sums me up to a T. Hopefully my black mood doesn't ruin the holidays for anyone around me (e.g. the dog) - I guess that's one good thing about being alone a lot.
Monday, December 18, 2017
Sunday, December 10, 2017
Orthostatic Intolerance - tilt table results.
Well I finally (7 mo after the test) got my OI tilt table results. It's interesting because the specialist wrote the report like he'd seen me and I actually never even met him. Perhaps he went off the notes that the technicians wrote?
Not surprisingly, I was positive for POTS - "the patient had a positive tilt table test response for postural orthostatic tachycardia syndrome with severe orthostatic intolerance". They also did what's called a catecholamine level and a beta adrenergic hypersensitivity test both which were normal. The report about my symptoms during the test was mostly accurate however there was no mention of my excessive sweating (perhaps this is normal for someone with POTS and not worth mentioning).
Recommendations - nothing new - increase salt and water, drugs (Florinef or midodrine and a Beta Blocker) all of which I've tried unfortunately. Since I wasn't able to speak with him I wasn't able to explore other drug options/ideas which was one of the main reasons I went. I'd would have also really liked to have asked someone about my bouts of extreme air hunger/breathlessness - sigh.
He also mentioned in the report that I should enroll in an exercise program (he obviously doesn't get M.E. and exercise intolerance) as well as CBT. I was unaware that CBT was a treatment for POTS, not sure how one would think themselves out of tachycardia when the cause is positioning/being upright? As it is, I force myself to be upright until I have a blackout/vision loss, tremors/shakes, extreme weakness, and my feet turn purple and hurt, on almost a daily basis. I also exercise very gently as much as I can without inducing an M.E. crash (which entails gentle occasional walking). Unfortunately I can't do anything cardio vascular without major repercussions.
Anyways, my NP and I have decided I will try a very low dose BB again and see if I notice any difference, otherwise, I'm calling the whole thing a write-off except the fact that I now have the diagnosis.
On other life topics - my course is over and I'm in the midst of marking. It is going agonizingly slowly and I'm hoping grades aren't due at least for another week. I look forward to being done for the fall. Getting some gifts off to family and helping my dad do the same is truthfully, more than overwhelming.
I did create a holiday card this year which I'm sending off to some select friends. It turned out okay so I'll share it with my readers and say - HAPPY HOLIDAYS.
Not surprisingly, I was positive for POTS - "the patient had a positive tilt table test response for postural orthostatic tachycardia syndrome with severe orthostatic intolerance". They also did what's called a catecholamine level and a beta adrenergic hypersensitivity test both which were normal. The report about my symptoms during the test was mostly accurate however there was no mention of my excessive sweating (perhaps this is normal for someone with POTS and not worth mentioning).
Recommendations - nothing new - increase salt and water, drugs (Florinef or midodrine and a Beta Blocker) all of which I've tried unfortunately. Since I wasn't able to speak with him I wasn't able to explore other drug options/ideas which was one of the main reasons I went. I'd would have also really liked to have asked someone about my bouts of extreme air hunger/breathlessness - sigh.
He also mentioned in the report that I should enroll in an exercise program (he obviously doesn't get M.E. and exercise intolerance) as well as CBT. I was unaware that CBT was a treatment for POTS, not sure how one would think themselves out of tachycardia when the cause is positioning/being upright? As it is, I force myself to be upright until I have a blackout/vision loss, tremors/shakes, extreme weakness, and my feet turn purple and hurt, on almost a daily basis. I also exercise very gently as much as I can without inducing an M.E. crash (which entails gentle occasional walking). Unfortunately I can't do anything cardio vascular without major repercussions.
Anyways, my NP and I have decided I will try a very low dose BB again and see if I notice any difference, otherwise, I'm calling the whole thing a write-off except the fact that I now have the diagnosis.
On other life topics - my course is over and I'm in the midst of marking. It is going agonizingly slowly and I'm hoping grades aren't due at least for another week. I look forward to being done for the fall. Getting some gifts off to family and helping my dad do the same is truthfully, more than overwhelming.
I did create a holiday card this year which I'm sending off to some select friends. It turned out okay so I'll share it with my readers and say - HAPPY HOLIDAYS.
Thursday, November 23, 2017
Cognitive Fog and another Disappointment.
When I first became ill with mono, that very first first week, I felt like my brain was swollen. It wasn't a headache, it was simply overwhelming pressure. The sensation was potent and constant. I also had what is commonly known as brain fog. I used to describe it like having cellophane wrapped around my brain. I could think, but I had to think through this layer of pressure and filminess. My thoughts took longer to form, words were difficult to find, information took longer to process.
Interestingly, I see my father who has mild cognitive impairment struggling with these same things.
While at first these cognitive issues were ever present, slowly over time I had periods where they waned. After a few years, these periods of relief lasted longer, and eventually my cognitive issues became infrequent. How else could I have pursued a masters and then a PhD mostly from bed?
Now, I only have problems if I drive, or am crashed. However, right now I am having problems, real problems. I think it's because I work my brain hard for hours everyday. I read, write, process, teach, assess. The last few days it's not that I can't think, but it's taking so much time to process, to find a word, to write a paragraph. If I push through I even start to get spotty vision (like right now). I need to rest my brain...I have three weeks to go, I hope I can manage to facilitate the rest of this course well.
As to the disappointment the community (M.E.) faces this week, and that I mention in the post title - the phase three Rituximab (drug) trial from Norway is negative. That the drug made it to phase three was both hopeful and validating for many of us. Unfortunately, once again, we are left without even the promise of treatment in the far flung future (finding and testing a drug takes mass amounts of funding, which M.E. doesn't get, and then years and years to go through trials once a candidate is identified).
If Rituximab had proved effective not only would there be an option for treatment (someday), but it would have highlighted possible specific mechanisms and pathways of the disease and validated it's biologic immune dysfunction within the medical community.
Anyways, given how hard it is to write, that's all I got today. Sorry about my absence lately, part time work is all I can manage. Overall my health has remained pretty steady (outside the brain fog) which is something to be thankful for. I hope you are all AWAP.
Interestingly, I see my father who has mild cognitive impairment struggling with these same things.
While at first these cognitive issues were ever present, slowly over time I had periods where they waned. After a few years, these periods of relief lasted longer, and eventually my cognitive issues became infrequent. How else could I have pursued a masters and then a PhD mostly from bed?
Now, I only have problems if I drive, or am crashed. However, right now I am having problems, real problems. I think it's because I work my brain hard for hours everyday. I read, write, process, teach, assess. The last few days it's not that I can't think, but it's taking so much time to process, to find a word, to write a paragraph. If I push through I even start to get spotty vision (like right now). I need to rest my brain...I have three weeks to go, I hope I can manage to facilitate the rest of this course well.
As to the disappointment the community (M.E.) faces this week, and that I mention in the post title - the phase three Rituximab (drug) trial from Norway is negative. That the drug made it to phase three was both hopeful and validating for many of us. Unfortunately, once again, we are left without even the promise of treatment in the far flung future (finding and testing a drug takes mass amounts of funding, which M.E. doesn't get, and then years and years to go through trials once a candidate is identified).
If Rituximab had proved effective not only would there be an option for treatment (someday), but it would have highlighted possible specific mechanisms and pathways of the disease and validated it's biologic immune dysfunction within the medical community.
Anyways, given how hard it is to write, that's all I got today. Sorry about my absence lately, part time work is all I can manage. Overall my health has remained pretty steady (outside the brain fog) which is something to be thankful for. I hope you are all AWAP.
Wednesday, November 1, 2017
Watch Unrest.
My life is busy. Too busy.
Lately, I often feel overwhelmed. I'm happy for my work (the online course), I'm happy that I have my father in my life, but I'm also sick with a disabling chronic illness. I wish there was a happy medium.
I'm doing too much to the point where I collapse in mental and physical fatigue almost daily. (That said, I haven't relapsed). But given how much I've stressed and stretched myself this past 12 months, I decided not to take on any work this winter, so there is a light at the end of the tunnel. I just need to power-through and try to enjoy the next 6 weeks of 'busy' as best I can.
Then it's back to more rest/time but also the accompanying poverty that goes with it, not to mention the issues with low self esteem that plague me when I'm not working.
But I'll get to the point. I'm writing this post for a reason. I watched the documentary UNREST. If you haven't watched it, watch it.
If you are a non M.E. friend, I think you will see pieces of my story in there. The time early on where I was so sick, dizzy, weak and exhausted you watched me lay down in a dog bed at our friend's party. The time you had to help me walk because my legs gave out after I thought I was well enough to go for a walk/hike. The times early on where I had to crawl to the bathroom (although I don't think anyone saw me those times), or where I couldn't make it up a set of stairs.
The movie's not completely overwhelming, I thought it would be; it wasn't. It's about M.E. but it's also art. It's a story that needs to be told and it's told well. There are small moments of beauty in it. There are even a few moments of humour.
On the other hand, it's not a "light" watch. It's about the lives of people who suffer severe illness and yet have been mostly dismissed by doctors and society. I cried.
I felt jealous at times of the support Brea obviously has (both personal and medical). But then I guess she wouldn't have been able to make the movie had she not had this support.
I'm going to buy a bunch of DVDs and give them to friends... It's such an important story and it's done so well.
Have you seen it? What did you think?
Saturday, October 14, 2017
It could be worse....
While I come here to Bit*& and complain, to share my struggles about how awful and frustrating it is to be disabled by a mostly invisible illness, I also acknowledge that as M.E. goes, I am only moderate. My life could be even more restricted, even smaller. I've experienced this during my worst relapses.
These days, I am out of bed or off the couch for sometimes 3 or occasionally 4?! hours a day, I leave the house multiple times a week much of this due to my father - appointments, errands, needing to run over to his place etc., and now that he's lost his licence there is the driving! It's not a lot of driving but for someone who crashes from driving, it sometimes feels like self abuse.
While I 'manage' these outings, (in the 1-2 hr range) they are often crash-making. Between my online course, day to day living, and being my dad's administrator, I find the stress often builds to anxiety levels. Were I not doing so much, I'm guessing I would alternatively feel isolated and bored.
Instead, I am busy, often pushing through horrid sick symptoms (lightheadedness, brown-outs, malaise fluy ichiness, air hunger, and colossal weakness and fatigue) while trying to work, errand etc. I find myself feeling desperate to the point of wanting to just get my life, this misery, over with. I sometimes wonder if any "healthy" would put themselves through this in order to maintain some functioning in the world. Still, when I consider the alternative, I still choose to push through (e.g. I love feeling like I have a job, I love being there for my dad).
While my life is about constant physical suffering, worse lately because I'm so busy, I have friends with M.E. who are much worse off, some of them completely home-bound, two of them completely bed bound. Despite the general lack of awareness of how devastating an illness this is, that it's not about 'being tired', we are a certainly a disabled bunch.
I came across this today and kept nodding my head.
https://www.washingtonpost.com/national/health-science/i-live-with-disabling-illness-and-chronic-fatigue-it-has-taught-me-to-ask-for-help/2017/09/22/513a0cee-972b-11e7-b569-3360011663b4_story.html?utm_term=.2fd425d883e9#comments
This woman tells her story and what it takes when you are chronically ill to sometimes ask for help. I love the analogy of how it's like drinking mud from a puddle lol!!!
Asking for help when you're ill, in my experience, is awful. You expose yourself, make yourself vulnerable. You put yourself at the mercy of your friend/family member etc. And while these folks might offer "how can I help? or let me know how I can help?" from time to time, it's never anything specific throwing it right back into the disabled/sick person's court. The author encourages the sick person to be specific, but I think it goes both ways. It's the same when someone is grieving after a loss, the "advice" out there these days is that it helps a lot if you want to help, if you can offer something specific.
I very rarely get offers for help these days. Partly, I don't really have any good friends besides my housemate in this town. My housemate/friend S. often helps doing little things like letting the dog out to pee when I'm crashed on the couch, saving me those extra steps. While she also does some bigger things (shovels snow, mows the lawn, buys groceries) sometimes it's those little things that mean the most. My dad very sweetly offers to help from time to time, but now that he can't drive there's little he can do.
I like the statement/acknowledgment in the article about how adult life is hard. Sometimes it seems like it's pretty much drudgery whether you are sick or not.
This week is a reading week (break) at the U, so I was able to get out in the canoe for the second time? this year. The fall colours were amazing. Thankfully (for me) there are the occasional moments of beauty and joy like these. While I was out I felt like my heart/spirit was soaring. Although given the mercilessness of M.E., I am still paying.
Do you ever ask for help?
p.s. for those with M.E. who have a chance to read the article I shared a link to above, you will be happy/excited to know that in the comments someone posted an easy 'cure' for M.E. - finally (note my sarcasm).
These days, I am out of bed or off the couch for sometimes 3 or occasionally 4?! hours a day, I leave the house multiple times a week much of this due to my father - appointments, errands, needing to run over to his place etc., and now that he's lost his licence there is the driving! It's not a lot of driving but for someone who crashes from driving, it sometimes feels like self abuse.
While I 'manage' these outings, (in the 1-2 hr range) they are often crash-making. Between my online course, day to day living, and being my dad's administrator, I find the stress often builds to anxiety levels. Were I not doing so much, I'm guessing I would alternatively feel isolated and bored.
Instead, I am busy, often pushing through horrid sick symptoms (lightheadedness, brown-outs, malaise fluy ichiness, air hunger, and colossal weakness and fatigue) while trying to work, errand etc. I find myself feeling desperate to the point of wanting to just get my life, this misery, over with. I sometimes wonder if any "healthy" would put themselves through this in order to maintain some functioning in the world. Still, when I consider the alternative, I still choose to push through (e.g. I love feeling like I have a job, I love being there for my dad).
While my life is about constant physical suffering, worse lately because I'm so busy, I have friends with M.E. who are much worse off, some of them completely home-bound, two of them completely bed bound. Despite the general lack of awareness of how devastating an illness this is, that it's not about 'being tired', we are a certainly a disabled bunch.
I came across this today and kept nodding my head.
https://www.washingtonpost.com/national/health-science/i-live-with-disabling-illness-and-chronic-fatigue-it-has-taught-me-to-ask-for-help/2017/09/22/513a0cee-972b-11e7-b569-3360011663b4_story.html?utm_term=.2fd425d883e9#comments
This woman tells her story and what it takes when you are chronically ill to sometimes ask for help. I love the analogy of how it's like drinking mud from a puddle lol!!!
Asking for help when you're ill, in my experience, is awful. You expose yourself, make yourself vulnerable. You put yourself at the mercy of your friend/family member etc. And while these folks might offer "how can I help? or let me know how I can help?" from time to time, it's never anything specific throwing it right back into the disabled/sick person's court. The author encourages the sick person to be specific, but I think it goes both ways. It's the same when someone is grieving after a loss, the "advice" out there these days is that it helps a lot if you want to help, if you can offer something specific.
I very rarely get offers for help these days. Partly, I don't really have any good friends besides my housemate in this town. My housemate/friend S. often helps doing little things like letting the dog out to pee when I'm crashed on the couch, saving me those extra steps. While she also does some bigger things (shovels snow, mows the lawn, buys groceries) sometimes it's those little things that mean the most. My dad very sweetly offers to help from time to time, but now that he can't drive there's little he can do.
I like the statement/acknowledgment in the article about how adult life is hard. Sometimes it seems like it's pretty much drudgery whether you are sick or not.
This week is a reading week (break) at the U, so I was able to get out in the canoe for the second time? this year. The fall colours were amazing. Thankfully (for me) there are the occasional moments of beauty and joy like these. While I was out I felt like my heart/spirit was soaring. Although given the mercilessness of M.E., I am still paying.
Do you ever ask for help?
p.s. for those with M.E. who have a chance to read the article I shared a link to above, you will be happy/excited to know that in the comments someone posted an easy 'cure' for M.E. - finally (note my sarcasm).
Friday, October 6, 2017
I'm exhausted
My life is exhausting.
Being sick for 15 years with no treatment options (aka hope or medical support) is exhausting. Taking care of my octogenarian father while ill is exhausting. Teaching (even online) while ill is exhausting. POTs is exhausting. Talking, walking, doing the dishes, taking a bath, figuring out what to eat, driving my dad on errands...it's all exhausting.
I'm exhausted.
Being sick for 15 years with no treatment options (aka hope or medical support) is exhausting. Taking care of my octogenarian father while ill is exhausting. Teaching (even online) while ill is exhausting. POTs is exhausting. Talking, walking, doing the dishes, taking a bath, figuring out what to eat, driving my dad on errands...it's all exhausting.
I'm exhausted.
Monday, September 18, 2017
Battery Drained
I'm in bed trying to rest enough to recharge my battery. I just read a fellow sufferer's analogy that having M.E. is like having a battery (e.g. capacity for energy) that only ever charges to 20%. Really that's pretty much it although maybe mine hits 30% sometimes?
Anyways, right now I'm at -10% so I'm trying to rest enough to get some charge back. Last night I was so weak I couldn't stand up for more than seconds without my legs giving out and I couldn't comb my hair. I was so weak my arm muscles were shaking/tremoring typing. Pretty bad eh?
Today I'm maybe a tad better but feel awful and fluy and viral and still quite weak. Hence it's 2pm and I'm still in bed in pjs.
I've been working online at my online course and doing errand/appointments with my dad. This has been enough to tax me past my limits. And despite the fact that I'm not sick on purpose I still lay here feeling disgusted and disappointed with myself.
Anyways, right now I'm at -10% so I'm trying to rest enough to get some charge back. Last night I was so weak I couldn't stand up for more than seconds without my legs giving out and I couldn't comb my hair. I was so weak my arm muscles were shaking/tremoring typing. Pretty bad eh?
Today I'm maybe a tad better but feel awful and fluy and viral and still quite weak. Hence it's 2pm and I'm still in bed in pjs.
I've been working online at my online course and doing errand/appointments with my dad. This has been enough to tax me past my limits. And despite the fact that I'm not sick on purpose I still lay here feeling disgusted and disappointed with myself.
Monday, September 4, 2017
Feelings of Mortality
Sometimes life seems to go by so slowly. It's like I have all the time in the world: for my health to improve so I can do more, to get ready for my fall course, to spend time with family or important friends, to go on another camping trip, or even for another summer swim.
After I got back from camping, the next weekend was the big dog event in the city. We went for one morning and had a wonderful time.
That night I heard my aunt Laura (my dad's sister) had taken a turn for the worse. Monday morning, Aug. 21st she died. Just when I thought I had a week or two with nothing big scheduled I was in a quandary. I had always planned to go the the funeral- she was like my grandma. She put me up for 6 mo during the first years I was ill and had no where to go. She never had kids, so was "adopted" by a few families of my cousins. Growing up she was there every Birthday and holiday I can remember. She lived down the road so I saw her often. In fact, she used to take me out driving when I was struggling to learn to drive as a young adult. The memories of times with her are endless....
So I did end up taking my dad down for the funeral. I won't go into details, but one of my brothers lives in the same city and was turning fifty that week so we got to see him, and one of my other brothers drove out from Ottawa. Of course even the two hour flight and all the details to get my dad and I there kicked my butt.
However, it was cathartic to see so many of my cousins and to see 2 of my brothers and to sit and talk about my aunt, sharing memories. She was ready to go, she had been saying so for quite a few years. She had a strong faith that death isn't the end and it was time - she would have turned 90 in October.
Being down in the community where I grew up, brought back a lot of memories of my time taking care of my mom. I feel like in a way I was doing more grieving for my mom than my Aunt. Not only that, but the news about my Aunt came within a day of the anniversary of hearing my mom was in the hospital and flying down to help her and my dad two years ago.
So here I am back home recovering.
Not surprisingly the M.E. seems to have taken a turn for the worse. I have definitely been pushing things this summer. My throat is sore pretty much all the time (in fact I thought I had strept the night of the funeral is was so painful and swollen). My axillary lymph nodes (arm pit ones) are painful enough that my clothing hurts. Not to mention the fatigue, weakness, and dizzy/lightheaded spells.
I feel like (partly because I've been so busy) that life is flying by too quickly. That summer's almost over and I didn't get anything accomplished.
In the bigger scheme of things, I feel that here I am in the second half of my forties and I've missed most my adulthood lying in bed. There's a kind of panic that I need to live as much life as I can despite M.E. On the other hand, my hands are tied to a degree because when I attempt to push it to do more stuff, I get sicker. I guess there are just no words to explain/describe how sick activity makes me (makes all of us with M.E.). For me, it's very much like a virus made worse by activity, but a virus that completely depletes my body's ability to produce energy.
To boot, my dad did his driving assessment last week and they gave him a clear fail. They said he made multiple errors and is no longer safe to drive. He is definitely angry and grieving this news. Technically he still has his licence, the report has been sent to the Dr. I told him that this week he could "carefully" drive just around the neighbourhood.
Unfortunately for me this wrench means I will have to drive him even more than I already have been and what sucks is that driving is one of the key activities that causes me to crash. This is unfortunate. However, mostly I'm feeling empathy and sadness for my father who now has to give up another piece of his life, his independence. My mom used to say "getting old is no fun" - clearly this seems to be the case.
I wish life would slow down. I feel like in the blink of an eye it will be my time to go, to die.
My native plants garden is attracting load of bees this year.
After I got back from camping, the next weekend was the big dog event in the city. We went for one morning and had a wonderful time.
That night I heard my aunt Laura (my dad's sister) had taken a turn for the worse. Monday morning, Aug. 21st she died. Just when I thought I had a week or two with nothing big scheduled I was in a quandary. I had always planned to go the the funeral- she was like my grandma. She put me up for 6 mo during the first years I was ill and had no where to go. She never had kids, so was "adopted" by a few families of my cousins. Growing up she was there every Birthday and holiday I can remember. She lived down the road so I saw her often. In fact, she used to take me out driving when I was struggling to learn to drive as a young adult. The memories of times with her are endless....
So I did end up taking my dad down for the funeral. I won't go into details, but one of my brothers lives in the same city and was turning fifty that week so we got to see him, and one of my other brothers drove out from Ottawa. Of course even the two hour flight and all the details to get my dad and I there kicked my butt.
However, it was cathartic to see so many of my cousins and to see 2 of my brothers and to sit and talk about my aunt, sharing memories. She was ready to go, she had been saying so for quite a few years. She had a strong faith that death isn't the end and it was time - she would have turned 90 in October.
Being down in the community where I grew up, brought back a lot of memories of my time taking care of my mom. I feel like in a way I was doing more grieving for my mom than my Aunt. Not only that, but the news about my Aunt came within a day of the anniversary of hearing my mom was in the hospital and flying down to help her and my dad two years ago.
So here I am back home recovering.
Not surprisingly the M.E. seems to have taken a turn for the worse. I have definitely been pushing things this summer. My throat is sore pretty much all the time (in fact I thought I had strept the night of the funeral is was so painful and swollen). My axillary lymph nodes (arm pit ones) are painful enough that my clothing hurts. Not to mention the fatigue, weakness, and dizzy/lightheaded spells.
I feel like (partly because I've been so busy) that life is flying by too quickly. That summer's almost over and I didn't get anything accomplished.
In the bigger scheme of things, I feel that here I am in the second half of my forties and I've missed most my adulthood lying in bed. There's a kind of panic that I need to live as much life as I can despite M.E. On the other hand, my hands are tied to a degree because when I attempt to push it to do more stuff, I get sicker. I guess there are just no words to explain/describe how sick activity makes me (makes all of us with M.E.). For me, it's very much like a virus made worse by activity, but a virus that completely depletes my body's ability to produce energy.
To boot, my dad did his driving assessment last week and they gave him a clear fail. They said he made multiple errors and is no longer safe to drive. He is definitely angry and grieving this news. Technically he still has his licence, the report has been sent to the Dr. I told him that this week he could "carefully" drive just around the neighbourhood.
Unfortunately for me this wrench means I will have to drive him even more than I already have been and what sucks is that driving is one of the key activities that causes me to crash. This is unfortunate. However, mostly I'm feeling empathy and sadness for my father who now has to give up another piece of his life, his independence. My mom used to say "getting old is no fun" - clearly this seems to be the case.
I wish life would slow down. I feel like in the blink of an eye it will be my time to go, to die.
My native plants garden is attracting load of bees this year.
Friday, August 18, 2017
Wilderness Camping
I'm going to post a few photos of the camping trip. We were dropped off on a remote set of Islands in Lake Superior and camped for 4 nights. My roommate/friend, her brother and I. It was really nice to be out with other people, as in my previous three trips (2012, 2013, 2016) it's just been me and my furry yellow friend.
I did my usual resting in beautiful places (my tent, our "private" beach, the dock). I also overdid it on purpose a few times. The water was quite calm for Lake Superior and we were camped in a protected area so we did quite a bit of exploring by canoe (the bugs were too bad for hiking and I'm unable to hike anyways).
When I canoe with someone I can mostly just steer and make them do the paddling so it worked out pretty well although my arms did get weak and shaky and the second day I was pretty crashed and viral and weak. I've learned after 15 years with M.E that when you manage to travel that nothing changes in regards to illness. In my experience, the travel induces a crash and then otherwise the illness is the same except that I am sick in a different place.
There are no words to describe just how beautiful Lake Superior is. The water is so clear that you can sometimes see 20 ft down to the bottom. I enjoyed the nightly companionship by the campfire, one night I got up to pee and lay down on the dock. I saw three meteors (two with tails) and a sky so full of stars it was breath taking. We didn't see caribou (which I guess is unusual) but I saw or heard many many birds:
nuthatches
loons
robins
a hawk
bald eagle
sea gulls
ravens
whiskey jack (Canada Jay)
white throated sparrow
pipers
We were also visited by tame hares in camp (someone obviously fed them). I didn't want to leave the last day. I knew it would be a year, maybe years until I could return to a place of peace and lack of responsibility like this place again.
Now I am home in bed resting and reading for my upcoming course. I have some major intestinal distress, I wonder if I caught a bug given my immune system (WBC low) is compromised? I'm spending most the day you know where and my lymph nodes just ache. Anyways, on to the slide show....enjoy
I did my usual resting in beautiful places (my tent, our "private" beach, the dock). I also overdid it on purpose a few times. The water was quite calm for Lake Superior and we were camped in a protected area so we did quite a bit of exploring by canoe (the bugs were too bad for hiking and I'm unable to hike anyways).
When I canoe with someone I can mostly just steer and make them do the paddling so it worked out pretty well although my arms did get weak and shaky and the second day I was pretty crashed and viral and weak. I've learned after 15 years with M.E that when you manage to travel that nothing changes in regards to illness. In my experience, the travel induces a crash and then otherwise the illness is the same except that I am sick in a different place.
There are no words to describe just how beautiful Lake Superior is. The water is so clear that you can sometimes see 20 ft down to the bottom. I enjoyed the nightly companionship by the campfire, one night I got up to pee and lay down on the dock. I saw three meteors (two with tails) and a sky so full of stars it was breath taking. We didn't see caribou (which I guess is unusual) but I saw or heard many many birds:
nuthatches
loons
robins
a hawk
bald eagle
sea gulls
ravens
whiskey jack (Canada Jay)
white throated sparrow
pipers
We were also visited by tame hares in camp (someone obviously fed them). I didn't want to leave the last day. I knew it would be a year, maybe years until I could return to a place of peace and lack of responsibility like this place again.
Now I am home in bed resting and reading for my upcoming course. I have some major intestinal distress, I wonder if I caught a bug given my immune system (WBC low) is compromised? I'm spending most the day you know where and my lymph nodes just ache. Anyways, on to the slide show....enjoy
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| Sunset: Two kinds of fire |
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| Camp visitor |
 |
| A geologic feature called "shatter cones" - looked like a big cliff to me |
 |
| "parked" in a field of daisies, you can see an old wrecked lumber barge |
 |
| View from an old copper mine shaft |
 |
| My happy place |
 |
| I think this is called "Indian Pipe" |
 |
| We even paddled a little exposed coastline with "sea" on three sides |
 |
| "my" beach, I spent hours here |
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| Early morning solo paddle |
 |
| Not a bad view from bed |
 |
| Bye bye Slate Is. |
Tuesday, August 8, 2017
Procrastination Station
I'm procrastinating. Do I have an excuse to procrastinate?
For those of you with M.E. or another severe chronic illness, you know what it's like to deal with fatigue and illness symptoms daily. Nonetheless, we only get one shot at life, so we must make choices about giving into our body's requests (for rest) versus doing the "living life" stuff that we can manage (I realize for many with M.E. this involves very little).
Compared to the healthy world, however, I do think we have a good excuse to just do nothing sometimes. The healthy world isn't dealing with constant illness while doing stuff (even if that stuff is as simple as getting dressed, fixing some food, taking a bath or shower, talking). Today I'm giving myself permission to put off all the "to dos" and be exhausted and sick and just rest.
I had imagined my summer being much more relaxed/restful. Instead I am busy (M.E. busy). First, I did that crazy intense online course in May and June which lingered into early July stress-wise. July just flew by with errands and dad-care/assistance and???. We've also been doing some repairs on the house which got complicated when a friend couldn't come up to help as expected. Then a different good friend and her son visited last week which was amazing (and she helped with the house project), but unfortunately their visit co-insided with some pretty awful sick days. I also pushed pretty hard just to visit when feeling crappy and horrible.
It's already August and there are at least 4 dad appointments coming up, the yearly agility event in the city, and a trip for me.
For 6 months my friend/housemate, her brother and I have been planning a trip to some nearby Islands to camp. Exhausted and immunocompromised or not, I plan to go. I need to unplug. I need these four days to lay on the rocks and watch the waves, not have to deal with care or questions from my beloved octogenarian, to see a sky full of stars, and perhaps even see some wild caribou!! (the most southern woodland caribou population resides there).
You can expect some photos when I get back. Thankfully it's not that far away, my friend will drive and I will have help for stuff that I need.
Then, to top it off, I also agreed to teach another course this fall (yes I am insane and stupid). On the plus, it's the 12 week kind (slower pace with more flexibility) and my supervisor from the PhD is allowing me to pretty much just teach her version of the course. This saves massive amounts of planning. I'm actually quite looking forward to it.
Who knew 10 years ago that I would actually: fist, be just as sick; and second, find a way to become a Dr. (PhD) and even work part-time from bed? I hope I'm not pushing things to the degree that I will be one of those who relapses into severe M.E? I am counting my blessings.
Today, I am just in bed (to be honest, I still spend the majority of most days in bed - 18- 20 hrs a day). I can't seem to get motivated to do anything....I mean anything. I'm so exhausted. I should be piddling away at some reading or course planning. Instead I'm going to do pretty much nothing.
For those of you with M.E. or another severe chronic illness, you know what it's like to deal with fatigue and illness symptoms daily. Nonetheless, we only get one shot at life, so we must make choices about giving into our body's requests (for rest) versus doing the "living life" stuff that we can manage (I realize for many with M.E. this involves very little).
Compared to the healthy world, however, I do think we have a good excuse to just do nothing sometimes. The healthy world isn't dealing with constant illness while doing stuff (even if that stuff is as simple as getting dressed, fixing some food, taking a bath or shower, talking). Today I'm giving myself permission to put off all the "to dos" and be exhausted and sick and just rest.
I had imagined my summer being much more relaxed/restful. Instead I am busy (M.E. busy). First, I did that crazy intense online course in May and June which lingered into early July stress-wise. July just flew by with errands and dad-care/assistance and???. We've also been doing some repairs on the house which got complicated when a friend couldn't come up to help as expected. Then a different good friend and her son visited last week which was amazing (and she helped with the house project), but unfortunately their visit co-insided with some pretty awful sick days. I also pushed pretty hard just to visit when feeling crappy and horrible.
It's already August and there are at least 4 dad appointments coming up, the yearly agility event in the city, and a trip for me.
For 6 months my friend/housemate, her brother and I have been planning a trip to some nearby Islands to camp. Exhausted and immunocompromised or not, I plan to go. I need to unplug. I need these four days to lay on the rocks and watch the waves, not have to deal with care or questions from my beloved octogenarian, to see a sky full of stars, and perhaps even see some wild caribou!! (the most southern woodland caribou population resides there).
You can expect some photos when I get back. Thankfully it's not that far away, my friend will drive and I will have help for stuff that I need.
Then, to top it off, I also agreed to teach another course this fall (yes I am insane and stupid). On the plus, it's the 12 week kind (slower pace with more flexibility) and my supervisor from the PhD is allowing me to pretty much just teach her version of the course. This saves massive amounts of planning. I'm actually quite looking forward to it.
Who knew 10 years ago that I would actually: fist, be just as sick; and second, find a way to become a Dr. (PhD) and even work part-time from bed? I hope I'm not pushing things to the degree that I will be one of those who relapses into severe M.E? I am counting my blessings.
Today, I am just in bed (to be honest, I still spend the majority of most days in bed - 18- 20 hrs a day). I can't seem to get motivated to do anything....I mean anything. I'm so exhausted. I should be piddling away at some reading or course planning. Instead I'm going to do pretty much nothing.
Thursday, August 3, 2017
Crashy crashed
I have a friend and her son visiting and I'm crashed - crashy crash crashed. I know sometimes I can go along doing not a whole lot and think "M.E. isn't so terrible" and then when I'm like this I WANT TO DIE, I want it to end I'm so sick. I can barely sit up today, I'm yawning constantly and so without any energy, so devoid of energy there are no words.
It hurts to breathe, sore throat, icky fluey malaise feeling and did I say colossal lack of energy? Like I can barely hold my arms up, I can't really stand at all for more than seconds.
I was at my clinic Monday trying to figure out some paper work and we did some bloodwork and my white count is down to 2.9 with mild neutropenia again. Nothing extreme, but this is the lowest it's been in a long while. I did agree to go to a local internist who does some haematology but I doubt she'll make anything of it because, well it's due to the M.E.
I have a "holiday" camping coming next week and I may be teaching an online course again in the fall (the longer 12 week kind). Did I mention that I'm exhausted lol?
Just for fun, here's my pup jumping off a dock/pier last week.
It hurts to breathe, sore throat, icky fluey malaise feeling and did I say colossal lack of energy? Like I can barely hold my arms up, I can't really stand at all for more than seconds.
I was at my clinic Monday trying to figure out some paper work and we did some bloodwork and my white count is down to 2.9 with mild neutropenia again. Nothing extreme, but this is the lowest it's been in a long while. I did agree to go to a local internist who does some haematology but I doubt she'll make anything of it because, well it's due to the M.E.
I have a "holiday" camping coming next week and I may be teaching an online course again in the fall (the longer 12 week kind). Did I mention that I'm exhausted lol?
Just for fun, here's my pup jumping off a dock/pier last week.
Wednesday, July 12, 2017
Nothing's New
I haven''t written lately because I don't have much to say. Has this blog reached it's inevitable end? Is there a reason to keep posting?
I am not working, my contract is over, and the stress related to that is gone. It is so great to have a break!
Mostly my life lately revolves around entertaining and helping my dad. He isn't supposed to be driving at present so he is here everyday. He seems depressed and bored so I do my best, but I have a chronic illness and could use a break from him sometimes. It just never ends; I have an inkling of what it means to have kids (no, I realize it's not the exact same), but being someone's main caregiver etc. is a constant job, it is never over...
Otherwise, I'm doing.....well nothing. Watching movies, Netflix, a little gardening. I am trying to set up some help with fixing a section of leaky house foundation, but in the role of facilitator. And on the positive, the project means I have a friend coming to visit from the states which is AWESOME and exciting.
Health-wise I'm up and down. I do too much helping my dad, then crash, wish it were all over I'm so sick. Then as soon as I feel a bit better, I do it all over again. Sigh.
With the summer heat the POTS is horrific. I did some light gardening the other day (sitting on the ground weeding). I was dizzy for most of the session, came indoors and took my BP and HR and I was HR- 146!! sitting down gardening.
Speaking of POTS it's been 2 months since my tilt test and the specialist hasn't sent any results at all. Attempting to get medical support for these conditions/diseases is a complete waste of time in my experience.
I am not working, my contract is over, and the stress related to that is gone. It is so great to have a break!
Mostly my life lately revolves around entertaining and helping my dad. He isn't supposed to be driving at present so he is here everyday. He seems depressed and bored so I do my best, but I have a chronic illness and could use a break from him sometimes. It just never ends; I have an inkling of what it means to have kids (no, I realize it's not the exact same), but being someone's main caregiver etc. is a constant job, it is never over...
Otherwise, I'm doing.....well nothing. Watching movies, Netflix, a little gardening. I am trying to set up some help with fixing a section of leaky house foundation, but in the role of facilitator. And on the positive, the project means I have a friend coming to visit from the states which is AWESOME and exciting.
Health-wise I'm up and down. I do too much helping my dad, then crash, wish it were all over I'm so sick. Then as soon as I feel a bit better, I do it all over again. Sigh.
With the summer heat the POTS is horrific. I did some light gardening the other day (sitting on the ground weeding). I was dizzy for most of the session, came indoors and took my BP and HR and I was HR- 146!! sitting down gardening.
Speaking of POTS it's been 2 months since my tilt test and the specialist hasn't sent any results at all. Attempting to get medical support for these conditions/diseases is a complete waste of time in my experience.
Thursday, June 29, 2017
Stress
Well I'm done teaching my online course, so I am out of work for the foreseeable future. Although am I really done? NO! I am still dealing with student issues. Teaching (even graduate students) is not easy, and I tend to absorb stress quite easily. Of course I can't share details, but suffice it to say - dealing with failing students - it's anxiety making.
On top of it all, my dad had a memory assessment and the Dr. wanted him to stop driving until he goes for a driving assessment. This not only ups my daily load hugely, but my Dad is beside himself and he dumps his anxiety onto me, or tries to (e.g. talks about suicide). He is also here (or calling) me much of the afternoon every single day. I'm actually letting him drive just a little because despite the fact I'm pretty sure he'll fail the assessment, it makes him happy and takes the stress level down a notch. I pray he doesn't hit anyone.
It would help him with the inevitable transition if he agreed to get involved in ANYTHING (he's been here a year and some) but we've had that argument so many times I'm blue in the face. Besides the exercise class at his home, he refuses to join or participate in anything (a class, volunteer, an activity, a church, etc, etc.). Guess what he does when he's bored? Either drives around, or thinks up an excuse to go buy something (small things, but still), this is not a life.
So needless to say, sometimes I feel I can't catch a frigg'n break. Oh, and the dryer is going, the TV's not working properly and I am supposed to be setting up house foundation repair for July which I can't afford and don't have the help for (I have one friend who's offered a weekend). And given I often don't have the strength to lift my arms (literally), I'm not sure how the project will get done.
My one beacon is that I'm supposed to camp on some nearby islands on Lake Superior for 4 days this August. I am so excited/looking forward to it there are no words.
I know some people are better able to look at the bright side of life than me. I do realize that everything in my life isn't sh*&T, on the other hand, sometimes I feel like I got dealt a bad hand, and worse still, no matter how hard I try, the rain keeps falling. There's so much I can't change, so much out of my control (e.g. my family situation, my health and consequent poverty/low income), that at times I just feel beaten down.
On top of it all, my dad had a memory assessment and the Dr. wanted him to stop driving until he goes for a driving assessment. This not only ups my daily load hugely, but my Dad is beside himself and he dumps his anxiety onto me, or tries to (e.g. talks about suicide). He is also here (or calling) me much of the afternoon every single day. I'm actually letting him drive just a little because despite the fact I'm pretty sure he'll fail the assessment, it makes him happy and takes the stress level down a notch. I pray he doesn't hit anyone.
It would help him with the inevitable transition if he agreed to get involved in ANYTHING (he's been here a year and some) but we've had that argument so many times I'm blue in the face. Besides the exercise class at his home, he refuses to join or participate in anything (a class, volunteer, an activity, a church, etc, etc.). Guess what he does when he's bored? Either drives around, or thinks up an excuse to go buy something (small things, but still), this is not a life.
So needless to say, sometimes I feel I can't catch a frigg'n break. Oh, and the dryer is going, the TV's not working properly and I am supposed to be setting up house foundation repair for July which I can't afford and don't have the help for (I have one friend who's offered a weekend). And given I often don't have the strength to lift my arms (literally), I'm not sure how the project will get done.
My one beacon is that I'm supposed to camp on some nearby islands on Lake Superior for 4 days this August. I am so excited/looking forward to it there are no words.
I know some people are better able to look at the bright side of life than me. I do realize that everything in my life isn't sh*&T, on the other hand, sometimes I feel like I got dealt a bad hand, and worse still, no matter how hard I try, the rain keeps falling. There's so much I can't change, so much out of my control (e.g. my family situation, my health and consequent poverty/low income), that at times I just feel beaten down.
Tuesday, June 20, 2017
Saturday, June 17, 2017
Living and Paying
I have been so busy working that I've not had time to come on here and complain (hehe). Today, however, I'm having one of the the worst crash days in recent memory - just so so so sick. I need this outlet to share with those of you who I know will understand.
I've been teaching an online six week intensive Masters course since the beginning of May and intensive is the correct word. Even for a healthy person these courses are challenging to teach. I won't go into all the details, but at one point I counted 23 days straight where I hadn't had a single day off from the course. That said, some days I worked only 2 hours, but somedays I worked 4 or 5 hours!!! multiple days in a row which for someone with moderate M.E. is crazy.
The only reason I can do it is because I can work from bed, and I don't suffer terrible cognitive dysfunction/brain fog like most...especially in the mornings when I work.
Then last weekend I went away to visit friends. I had rides both ways (3hrs) and spent the weekend WAY overdoing it. I really really needed it. Between working for 5 months and the extra strain of dad-care and support, the stress had been building to a very high level. I was about to break.
I've been crashed all week since my trip not surprisingly, but today is way worse, I'm so sick there are no words...
So please send healing recovery vibes my way. My course is over and by next Friday all my marking will be done. I have no work lined up in the foreseeable future so it's back to disabled/unemployed which might be the best thing for a while.
I've been teaching an online six week intensive Masters course since the beginning of May and intensive is the correct word. Even for a healthy person these courses are challenging to teach. I won't go into all the details, but at one point I counted 23 days straight where I hadn't had a single day off from the course. That said, some days I worked only 2 hours, but somedays I worked 4 or 5 hours!!! multiple days in a row which for someone with moderate M.E. is crazy.
The only reason I can do it is because I can work from bed, and I don't suffer terrible cognitive dysfunction/brain fog like most...especially in the mornings when I work.
Then last weekend I went away to visit friends. I had rides both ways (3hrs) and spent the weekend WAY overdoing it. I really really needed it. Between working for 5 months and the extra strain of dad-care and support, the stress had been building to a very high level. I was about to break.
I've been crashed all week since my trip not surprisingly, but today is way worse, I'm so sick there are no words...
So please send healing recovery vibes my way. My course is over and by next Friday all my marking will be done. I have no work lined up in the foreseeable future so it's back to disabled/unemployed which might be the best thing for a while.
Monday, May 15, 2017
POTS testing - It's awful
I'm not sure how many times I've heard tilt table tests are really difficult, especially for those with M.E. I've had Postural Orthostatic Tachycardia or at least some form of OI since the day I got ill because since contracting Mono, I've had dizziness, pre-syncope, and occasional faints. The cardiologist I saw here was familiar with OI but not POTS. I told him I suspected it was POTS but he just kept saying OI. I figured at the time it didn't matter because he was willing to try me on some of the drugs that help, and since POTS is a form of OI the drugs are pretty much the same.
Long story short, I tried three drugs, had awful reactions to all of them for different reasons, and basically gave up. My cardiologist retired and there you have it. When my regular NP was worried about my black-outs and vision loss and wanted to refer me to another cardiologist I said "only if it's someone who knows about POTS".
She sent off a referral to the only specialist in the province and we heard nothing for 8 months. Then a few weeks ago, a fax came with an appointment time for testing and only TWO weeks notice (it's a 17 hour drive from here and involves getting a travel grant, booking flights, finding someone to accompany me etc. etc.).
Well I went (part of me is still wondering why given how crashed/relapsed I am at the moment).
If you have M.E. tilt tests are horrible (I'm sure they are no fun for people with any form of OI) but with M.E. crashes are like the worst day of influenza. I haven't heard of anyone with M.E. NOT crashing from a tilt test.
So the two nurse technicians were very nice. I fasted and didn't drink anything from 12 midnight until after my test (which after 3:30pm).
I figured (arrogantly) that it would be bad, but I would tough it out fine. They hooked me up to two types of BP cuffs, heart monitors, and they inserted a port/needle to take blood samples. First they monitored me laying down, then they put straps across my chest and legs and tilted the table upright.
After 10 min upright I was in agony (not pain). I lost most my vision after a few minutes (it was blurry like little spots/partial vision). It stayed that way the rest of the test. I felt light-headed and HOT. Well my sweating problem (I've now discovered) is actually a POTS thing. I was flushed, red, hot and sweat enough that by the end of the test, the table was wet, my gown was wet and my pants were wet.
And, I felt horrible. Shaky. So horrible, anxious, like "I really really really need to lay down". I think??? because they were hoping to see me faint they kept me up for a full half hour even though they probably had a diagnosis at 10 min. It was everything I could do not to scream or cry.
When they finally let me down I did cry because the thought of even sitting up in a car for an hour to get back to my friend's house was just too overwhelming. I wanted to stay horizontal for the rest of my life. After some IV fluids and some time laying down I did feel a little better. That said, once I left the lab, I had to sit down a few more times before we made it to the car.
Because they were doing blood tests during and after I won't get any results for two months (I guess some of the tests take a while). However, she did tell me I was in tachycardia the whole time upright and I heard her tell the specialist "positive for POTS" and (I think?) that I was over 150 BM for more than 10 minutes of the test. It looked from my brief glance (she showed me a little of the data) that I was over 120 the whole time? I'm actually not sure why I didn't faint, though??
Who knows if it it will be worth it that I went. Will they have ideas for a drug I haven't tried? Will they just recommend exercise which makes M.E. and for me, POTS worse? Will I be crashed for the next month from this trip? I'm not sure why I even bothered.
On the other hand:
1. It will finally be on my medical records
2. I now know that my black-outs and vision problems are clearly POTS related
3. I also now know that my sweating problems are POTS....this was news to me. While I have these bouts of sweating I also have major temperature control issues with the M.E. (I get very cold very easily).
Long story short, I tried three drugs, had awful reactions to all of them for different reasons, and basically gave up. My cardiologist retired and there you have it. When my regular NP was worried about my black-outs and vision loss and wanted to refer me to another cardiologist I said "only if it's someone who knows about POTS".
She sent off a referral to the only specialist in the province and we heard nothing for 8 months. Then a few weeks ago, a fax came with an appointment time for testing and only TWO weeks notice (it's a 17 hour drive from here and involves getting a travel grant, booking flights, finding someone to accompany me etc. etc.).
Well I went (part of me is still wondering why given how crashed/relapsed I am at the moment).
If you have M.E. tilt tests are horrible (I'm sure they are no fun for people with any form of OI) but with M.E. crashes are like the worst day of influenza. I haven't heard of anyone with M.E. NOT crashing from a tilt test.
So the two nurse technicians were very nice. I fasted and didn't drink anything from 12 midnight until after my test (which after 3:30pm).
I figured (arrogantly) that it would be bad, but I would tough it out fine. They hooked me up to two types of BP cuffs, heart monitors, and they inserted a port/needle to take blood samples. First they monitored me laying down, then they put straps across my chest and legs and tilted the table upright.
After 10 min upright I was in agony (not pain). I lost most my vision after a few minutes (it was blurry like little spots/partial vision). It stayed that way the rest of the test. I felt light-headed and HOT. Well my sweating problem (I've now discovered) is actually a POTS thing. I was flushed, red, hot and sweat enough that by the end of the test, the table was wet, my gown was wet and my pants were wet.
And, I felt horrible. Shaky. So horrible, anxious, like "I really really really need to lay down". I think??? because they were hoping to see me faint they kept me up for a full half hour even though they probably had a diagnosis at 10 min. It was everything I could do not to scream or cry.
When they finally let me down I did cry because the thought of even sitting up in a car for an hour to get back to my friend's house was just too overwhelming. I wanted to stay horizontal for the rest of my life. After some IV fluids and some time laying down I did feel a little better. That said, once I left the lab, I had to sit down a few more times before we made it to the car.
Because they were doing blood tests during and after I won't get any results for two months (I guess some of the tests take a while). However, she did tell me I was in tachycardia the whole time upright and I heard her tell the specialist "positive for POTS" and (I think?) that I was over 150 BM for more than 10 minutes of the test. It looked from my brief glance (she showed me a little of the data) that I was over 120 the whole time? I'm actually not sure why I didn't faint, though??
Who knows if it it will be worth it that I went. Will they have ideas for a drug I haven't tried? Will they just recommend exercise which makes M.E. and for me, POTS worse? Will I be crashed for the next month from this trip? I'm not sure why I even bothered.
On the other hand:
1. It will finally be on my medical records
2. I now know that my black-outs and vision problems are clearly POTS related
3. I also now know that my sweating problems are POTS....this was news to me. While I have these bouts of sweating I also have major temperature control issues with the M.E. (I get very cold very easily).
Monday, April 24, 2017
Four Days Down
I've been crashed for four days...not long you say? It feels like forever. Perhaps because the last 15 years of my life have been a series of crash days piled upon crash days piled upon relapses. It's hard to remember the "not" crashed days when you are living the crash days, although I am thankful that I have the "crappy" days where I'm at least not too sick to live a little.
I'm not sure why I'm crashed? It could be PEM, but I can't put my finger on an over-do. I did finish my marking last week so maybe my body was "holding out" until I was done the winter course.
Sometimes I have an M.E. crash - weakness with viral symptoms - if there's an infection going around. I don't "catch" the infection, I just get the M.E. flare/crash. Anyways, I can barely lift my arms or stand right now and I'm out of breath walking around the house. It hurts to take a deep breath or talk, especially in the afternoons. I've been avoiding people, I just don't have the energy. I'm like a gas tank with literally nothing but fumes.
Despite this, I just forced myself outside with the dog for some air. I've probably "sat up" for a total of one or two hours the last 4 days - pathetic! I live in bed or splayed on the couch.
My spring course starts next Monday, so no 'mental' rest for the weary.
I woke up to around 4 cm of snow on the ground this morning. It's supposed to be cold with flurries and/or rain most the week. At least if I remain crashed the sun/spring weather won't mock me as I lay here.
Can you believe my pal Teagan turned nine this week! How time with our canine companions flies.
I'm not sure why I'm crashed? It could be PEM, but I can't put my finger on an over-do. I did finish my marking last week so maybe my body was "holding out" until I was done the winter course.
Sometimes I have an M.E. crash - weakness with viral symptoms - if there's an infection going around. I don't "catch" the infection, I just get the M.E. flare/crash. Anyways, I can barely lift my arms or stand right now and I'm out of breath walking around the house. It hurts to take a deep breath or talk, especially in the afternoons. I've been avoiding people, I just don't have the energy. I'm like a gas tank with literally nothing but fumes.
Despite this, I just forced myself outside with the dog for some air. I've probably "sat up" for a total of one or two hours the last 4 days - pathetic! I live in bed or splayed on the couch.
My spring course starts next Monday, so no 'mental' rest for the weary.
I woke up to around 4 cm of snow on the ground this morning. It's supposed to be cold with flurries and/or rain most the week. At least if I remain crashed the sun/spring weather won't mock me as I lay here.
Can you believe my pal Teagan turned nine this week! How time with our canine companions flies.
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| Me and Teags last fall |
Monday, April 17, 2017
I'm Moody
I'm a moody person. Not only that, but I can go from feeling fairly happy and content, to frustrated/angry, to lonely and depressed all in the matter of hours. Yes, being ill all the time does affect my mood, but they are not the same. My moody personality/disposition pre-dates me getting sick. Not that being sick all the time isn't depressing, it is, but this doesn't mean I am never happy, or that if I'm sad it necessarily has anything to do with being sick.
In fact, I get super frustrated with people equating my mood with the illness/M.E. and vice versa. The worst is my dad who when I tell him I'm feeling really ill or sick he replies "cheer up" or "how can I cheer you up?". If I said I had a cold virus or cancer would the response be "cheer up". He's not the only one, others have, when I tell them I'm not feeling well, immediately jump to a comment about my mood.
I wish friends, family and acquaintances could spend just one day in this sick, disabled body. I'm positive I would never hear a comment like this again. It is so much more similar to the worst day of a terrible virus after having run a marathon and so unrelated to mood, it would only take a day in my body to "get this".
Imagine trying to do a simple thing like brushing your hair or teeth and feeling your arm muscles give out, like completely give out! Or standing up (and still) for more than a minute (literally 60 sec.) and feeling your legs start to burn, your periferal vision starting to go...if you try to push through a vibration/buzzing starts in your legs which then get very shaky; push further and you black out completely.
Or you go for a short outing and 24 hours feel like you've been hit by a bus. Your throat hurts, you have a low grade fever, you feel the lymph nodes in your arms pumping and aching, every muscle in your body aches and it hurts to take a deep breath, like you have a deep seated chest infection. Sick, physically ill, not moody.
Anyways, I haven't written a post for a while so here it goes: My life is okay, I haven't died from working online at home. In fact, at the moment I'm no sicker than I was in the fall when I wasn't working. I relapsed in the winter but maybe that wasn't fully work-related, although I'd be surprised if it didn't contribute. While the work probably effects my health (negatively) to a degree, and it definitely effects the rest of my life (I have little energy left to pursue anything hobby wise or recreation), it also comes with a feeling of self-worth and extra money $$$.
People who aren't able to work due to illness face a lot of prejudice. The narrative in our western society is that your worth as a human is in part connected you your ability to work, or be productive in some way. This underlying message has negative consequences for those who can't work due to illness or disability or age.
What is our value if we can't work? Having been unable to hold down even a part-time job out of the home for most of the last 14 years has meant I have had to learn to assess my worth outside what I "do". Not just work, but hobbies and activities that once helped define me, that contributed to my identity were swept out from under me. I still struggle with my value as a human outside of productivity.
One rare gift of this illness is I am able to see value in a human life even if someone lives "off the system" and can't work or even pursue hobbies. My specialist used to say "we are human beings, not human doings". God I miss her sometimes.
As for this rare gift/insight of "M.E.", while I still struggle with it, at times I have clarity about human value and how unrelated it is to "human doing". I think being sick and unemployed, on disability, has allowed me to see people for who they are in a way that others who haven't had to live without "doing" would find hard.
Another "gift" of the illness is my understanding of "giving". I had a counsellor early on in the illness who told me that maybe I needed to learn how to be a "gracious receiver". Since then, when I feel that terrible knot in my gut about being on disability or having friends or family help me financially or physically I try to think about the two-part relationship involved in giving and receiving. For some of us, I think it is far more difficult to receive than to give. I try to graciously receive from my friends and family although I still find it hard since the balance is so "off".
When someone gives me something or is generous, and I am unwilling to receive graciously, they don't get that good warm feeling of giving.
It's funny but I have friends who are happy for me to talk about my insights about being a gracious receiver, but can't manage to give the gift back themselves, by which I mean - receive graciously in return. I think I have a very generous type of friend because I can think of 5 good friends off the bat who are extremely generous in their giving but don't seem to like to "receive" (at least from me).
If you are a relatively healthy person with a sick and/or disabled friend, imagine how hard it would be to be so trapped by disability and finances that you were rarely able to "give" things to your friends and family members? I think I can speak for most of us sickies when I say you do us a great service, make us feel helpful and happy, when you allow us to give you the occasional gift without refusal or thought of return (now I need to pay them back somehow). Whether this is letting us hear about your problems/struggles on occasion, leaning on us in some way, letting us buy a meal/treat once in a while, risking asking us a favour, or being a gracious receiver when we send you a card or photo or gift. Think about how good it must feel for us to "do something" on occasion.
On a completely other topic, there are still big sheets of disintegrating ice in the bay, here's a few photos:
In fact, I get super frustrated with people equating my mood with the illness/M.E. and vice versa. The worst is my dad who when I tell him I'm feeling really ill or sick he replies "cheer up" or "how can I cheer you up?". If I said I had a cold virus or cancer would the response be "cheer up". He's not the only one, others have, when I tell them I'm not feeling well, immediately jump to a comment about my mood.
I wish friends, family and acquaintances could spend just one day in this sick, disabled body. I'm positive I would never hear a comment like this again. It is so much more similar to the worst day of a terrible virus after having run a marathon and so unrelated to mood, it would only take a day in my body to "get this".
Imagine trying to do a simple thing like brushing your hair or teeth and feeling your arm muscles give out, like completely give out! Or standing up (and still) for more than a minute (literally 60 sec.) and feeling your legs start to burn, your periferal vision starting to go...if you try to push through a vibration/buzzing starts in your legs which then get very shaky; push further and you black out completely.
Or you go for a short outing and 24 hours feel like you've been hit by a bus. Your throat hurts, you have a low grade fever, you feel the lymph nodes in your arms pumping and aching, every muscle in your body aches and it hurts to take a deep breath, like you have a deep seated chest infection. Sick, physically ill, not moody.
Anyways, I haven't written a post for a while so here it goes: My life is okay, I haven't died from working online at home. In fact, at the moment I'm no sicker than I was in the fall when I wasn't working. I relapsed in the winter but maybe that wasn't fully work-related, although I'd be surprised if it didn't contribute. While the work probably effects my health (negatively) to a degree, and it definitely effects the rest of my life (I have little energy left to pursue anything hobby wise or recreation), it also comes with a feeling of self-worth and extra money $$$.
People who aren't able to work due to illness face a lot of prejudice. The narrative in our western society is that your worth as a human is in part connected you your ability to work, or be productive in some way. This underlying message has negative consequences for those who can't work due to illness or disability or age.
What is our value if we can't work? Having been unable to hold down even a part-time job out of the home for most of the last 14 years has meant I have had to learn to assess my worth outside what I "do". Not just work, but hobbies and activities that once helped define me, that contributed to my identity were swept out from under me. I still struggle with my value as a human outside of productivity.
One rare gift of this illness is I am able to see value in a human life even if someone lives "off the system" and can't work or even pursue hobbies. My specialist used to say "we are human beings, not human doings". God I miss her sometimes.
As for this rare gift/insight of "M.E.", while I still struggle with it, at times I have clarity about human value and how unrelated it is to "human doing". I think being sick and unemployed, on disability, has allowed me to see people for who they are in a way that others who haven't had to live without "doing" would find hard.
Another "gift" of the illness is my understanding of "giving". I had a counsellor early on in the illness who told me that maybe I needed to learn how to be a "gracious receiver". Since then, when I feel that terrible knot in my gut about being on disability or having friends or family help me financially or physically I try to think about the two-part relationship involved in giving and receiving. For some of us, I think it is far more difficult to receive than to give. I try to graciously receive from my friends and family although I still find it hard since the balance is so "off".
When someone gives me something or is generous, and I am unwilling to receive graciously, they don't get that good warm feeling of giving.
It's funny but I have friends who are happy for me to talk about my insights about being a gracious receiver, but can't manage to give the gift back themselves, by which I mean - receive graciously in return. I think I have a very generous type of friend because I can think of 5 good friends off the bat who are extremely generous in their giving but don't seem to like to "receive" (at least from me).
If you are a relatively healthy person with a sick and/or disabled friend, imagine how hard it would be to be so trapped by disability and finances that you were rarely able to "give" things to your friends and family members? I think I can speak for most of us sickies when I say you do us a great service, make us feel helpful and happy, when you allow us to give you the occasional gift without refusal or thought of return (now I need to pay them back somehow). Whether this is letting us hear about your problems/struggles on occasion, leaning on us in some way, letting us buy a meal/treat once in a while, risking asking us a favour, or being a gracious receiver when we send you a card or photo or gift. Think about how good it must feel for us to "do something" on occasion.
On a completely other topic, there are still big sheets of disintegrating ice in the bay, here's a few photos:
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| There's ice in here but I'm still going in. |
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| Teagan doesn't "get" selfies |
Thursday, March 30, 2017
Pet Peeve - why "you look great" can hurt
I actually had it in my mind to write about some of the positive things that are in my life right now and this came out instead, so I guess I needed a release of frustration, which isn't to say there aren't good things happening in my life at present, there are.
It is clear after 15 years, that to most people, I don't look sick. I have no physical deformities and besides paleness/pallor from the POTS and M.E., or the fact I don't stand up for long and if I do my hands and feet turn purple, there wouldn't be much for an outsider to see.
(On a side note however, how is it back when I went to my specialist's office, that I could almost immediately tell who was really sick with M.E. and who was accompanying them? People with M.E. look pale, and often have a hoarse tired voice and/or sore throat).
Anyways, I'm letting non-sick people off the hook on this one as I know the outward signs of this illness are subtle, especially if you're not really looking. However, when people know I'm sick, why do they have to tell me how great I look? I don't go around telling all my friends and acquaintances how great they look? Why is this a thing? Do they think by them saying I don't look sick, I should then not feel or be ill? Do they think this contradiction (that I apparently look so great and yet claim to be ill to the point of significant disability) needs to be pointed out every time they see me? That pointing out this contradiction will somehow cheer me up? "Wow, I know you're sick and everything but given how great you look...."
To get to the related pet peeve I really want to discuss - if I DO manage to force myself out to do an outing or activity, or I'm happy about something, or able to manage a social visit, friends and acquaintances use this as evidence that I must not be that sick or at least "see, you're managing". They either don't understand or believe about PEM, or they don't believe it's all that awful. How many times can I tell people that PEM is worse than the worst day of a cold or as bad as mono or influenza? At this point they either believe me or they don't.
Even worse, I have several friends that often encourage me to do more (social or work) even if it means I crash or relapse. Either they don't grasp or believe how awfully physically sick I am when I crash 36 hrs later, or it's more important to them that I follow the socially acceptable script (social, recreational, work) than that I avoid physical suffering.
As an important side note, I do have friends that "get it" to a degree. And I have friends that even encourage me to pace or not over-do. My house-mate/friend does all kinds of errands and tasks to save me energy and from subsequent crashes. Not only that, but she never complains that I then sometimes spend that energy doing recreation/fun for myself, when I could have taken care of self-maintainance tasks that she did for me with her limited time off (groceries, post office, drug store, shovelling, lawn mowing).
It's important to note though, that choosing and being encouraged to over-do are very different. Sometimes I choose to over-do in order to spend time with friends, or travel to see friends, even though I know I will crash later. This is my choice and not a pet peeve, I make a judgement that the doing or spending time with someone I love, is worth the pay-back.
Everyone is on a journey, this life-journey. For me, the all encompassing biggest challenge/obstacle I face on my journey is having to live in a sick, malfunctioning body (for the last 15 years). Not only that, but there is no way out, I've found no useful treatment and I don't even have a knowledgeable physician. And so, this awful illness colours every aspect of my life. I feel so alone sometimes navigating life while ill. Due to physical limitations I am mostly home-bound and spend an inordinate amount of time alone.
That said, I realise that every friend and acquaintance in my life has their own struggles, their own obstacles and challenges on this journey. And I probably don't always "get" these as an outsider, just like they don't really "get" mine. I probably do or say insensitive and thoughtless things. I can be pretty self-absorbed. On the one hand, I wish I had more people in my life; colleagues, friends, family, anyone.
My "people" all feel so distant right now. But it's really hard when they don't have a clue or never acknowledge this huge elephant I live with - instead they just point out or comment on the fact that they don't see the elephant. And while on the one hand I need and crave connection, alternatively I find sometimes I want to withdraw from people all together just because social stuff is so exhausting while sick/ill.
While I'm thankful and grateful that I don't look awfully sick it's a mixed blessing. Since I don't look sick, but "look so great", not only is this illness clearly invisible, but sometimes I feel invisible as well.
It is clear after 15 years, that to most people, I don't look sick. I have no physical deformities and besides paleness/pallor from the POTS and M.E., or the fact I don't stand up for long and if I do my hands and feet turn purple, there wouldn't be much for an outsider to see.
(On a side note however, how is it back when I went to my specialist's office, that I could almost immediately tell who was really sick with M.E. and who was accompanying them? People with M.E. look pale, and often have a hoarse tired voice and/or sore throat).
Anyways, I'm letting non-sick people off the hook on this one as I know the outward signs of this illness are subtle, especially if you're not really looking. However, when people know I'm sick, why do they have to tell me how great I look? I don't go around telling all my friends and acquaintances how great they look? Why is this a thing? Do they think by them saying I don't look sick, I should then not feel or be ill? Do they think this contradiction (that I apparently look so great and yet claim to be ill to the point of significant disability) needs to be pointed out every time they see me? That pointing out this contradiction will somehow cheer me up? "Wow, I know you're sick and everything but given how great you look...."
To get to the related pet peeve I really want to discuss - if I DO manage to force myself out to do an outing or activity, or I'm happy about something, or able to manage a social visit, friends and acquaintances use this as evidence that I must not be that sick or at least "see, you're managing". They either don't understand or believe about PEM, or they don't believe it's all that awful. How many times can I tell people that PEM is worse than the worst day of a cold or as bad as mono or influenza? At this point they either believe me or they don't.
Even worse, I have several friends that often encourage me to do more (social or work) even if it means I crash or relapse. Either they don't grasp or believe how awfully physically sick I am when I crash 36 hrs later, or it's more important to them that I follow the socially acceptable script (social, recreational, work) than that I avoid physical suffering.
As an important side note, I do have friends that "get it" to a degree. And I have friends that even encourage me to pace or not over-do. My house-mate/friend does all kinds of errands and tasks to save me energy and from subsequent crashes. Not only that, but she never complains that I then sometimes spend that energy doing recreation/fun for myself, when I could have taken care of self-maintainance tasks that she did for me with her limited time off (groceries, post office, drug store, shovelling, lawn mowing).
It's important to note though, that choosing and being encouraged to over-do are very different. Sometimes I choose to over-do in order to spend time with friends, or travel to see friends, even though I know I will crash later. This is my choice and not a pet peeve, I make a judgement that the doing or spending time with someone I love, is worth the pay-back.
Everyone is on a journey, this life-journey. For me, the all encompassing biggest challenge/obstacle I face on my journey is having to live in a sick, malfunctioning body (for the last 15 years). Not only that, but there is no way out, I've found no useful treatment and I don't even have a knowledgeable physician. And so, this awful illness colours every aspect of my life. I feel so alone sometimes navigating life while ill. Due to physical limitations I am mostly home-bound and spend an inordinate amount of time alone.
That said, I realise that every friend and acquaintance in my life has their own struggles, their own obstacles and challenges on this journey. And I probably don't always "get" these as an outsider, just like they don't really "get" mine. I probably do or say insensitive and thoughtless things. I can be pretty self-absorbed. On the one hand, I wish I had more people in my life; colleagues, friends, family, anyone.
My "people" all feel so distant right now. But it's really hard when they don't have a clue or never acknowledge this huge elephant I live with - instead they just point out or comment on the fact that they don't see the elephant. And while on the one hand I need and crave connection, alternatively I find sometimes I want to withdraw from people all together just because social stuff is so exhausting while sick/ill.
While I'm thankful and grateful that I don't look awfully sick it's a mixed blessing. Since I don't look sick, but "look so great", not only is this illness clearly invisible, but sometimes I feel invisible as well.
Friday, March 17, 2017
Improvements/respite
I've had some improvement in my health. I have pulled out of the relapse and am back to my "normal" level of functioning, which isn't great (mostly homebound), but I can tolerate very small/short walks, and a couple outings a week. I LOVE ice and frozen lakes and ice-out in the spring. I live on the largest fresh water lake in the world and this time of year when it's still winter (March), I like to get out on blue sky days especially, to see the ice.
We have had the craziest winter I've experienced in the 16 years I've lived in this town. Mostly it's been unseasonably warm. We've also hardly had any snow (that said, generally it still sticks around because even a warm winter here is freezing or below).
The bay on Lake Superior here is usually frozen throughout the winter, and this year, except the harbour, it was mostly open. The inland lakes are solid as always, but not as thick as some years. Recently we've had a lot of -20 nights and with so little snow, the inland lakes are like vast skating rinks - they are amazing! (Just to give you perspective, people drive on lakes up here most the winter). Here's a few photos of the ice from my outings over the last few weeks.
We have had the craziest winter I've experienced in the 16 years I've lived in this town. Mostly it's been unseasonably warm. We've also hardly had any snow (that said, generally it still sticks around because even a warm winter here is freezing or below).
The bay on Lake Superior here is usually frozen throughout the winter, and this year, except the harbour, it was mostly open. The inland lakes are solid as always, but not as thick as some years. Recently we've had a lot of -20 nights and with so little snow, the inland lakes are like vast skating rinks - they are amazing! (Just to give you perspective, people drive on lakes up here most the winter). Here's a few photos of the ice from my outings over the last few weeks.
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| Shoreline ice, Lake Superior |
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| My dad looks like an Arctic Explorer haha |
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| A nice flat place for a walk |
Friday, March 3, 2017
I've disappeared
Sorry I've disappeared. There is just too much going on for me to come here and post/write very often. There are some family issues that are causing me stress even though I can't do much to help.
My health has improved slightly, but I'm still not back up to where I was in the fall. Honestly, I don't think that will happen until I stop working in June. Part-time work and stress are taking their toll on my body. Sometimes I feel like I'm just not cut out for life in general. It's like trying to do it with constant influenza or mono. I'm just so.......fed up and done.
I am so tired of feeling sick all the time, and being so homebound and shut in, that I could scream (if I had the energy). My moods are fluctuating between desperately sad and lonely to frustrated, angry and trapped, to occasionally more peaceful and content. I do love the teaching but I feel conflicted, part of me is grateful for the work, purpose and distraction, and part of me loathes it given what it does to me. I guess it's the same as loving anything that causes you harm.
I hope all of my many many readers (hahahahaha) are AWAP (as well as possible).
My health has improved slightly, but I'm still not back up to where I was in the fall. Honestly, I don't think that will happen until I stop working in June. Part-time work and stress are taking their toll on my body. Sometimes I feel like I'm just not cut out for life in general. It's like trying to do it with constant influenza or mono. I'm just so.......fed up and done.
I am so tired of feeling sick all the time, and being so homebound and shut in, that I could scream (if I had the energy). My moods are fluctuating between desperately sad and lonely to frustrated, angry and trapped, to occasionally more peaceful and content. I do love the teaching but I feel conflicted, part of me is grateful for the work, purpose and distraction, and part of me loathes it given what it does to me. I guess it's the same as loving anything that causes you harm.
I hope all of my many many readers (hahahahaha) are AWAP (as well as possible).
Sunday, February 12, 2017
Officially a Relapse
My overall function is way down and every time I think I'm starting to edge I'm back in the hole. Since it's been 3 weeks now I must call this a relapse not a crash. A crash is a viral and energy reaction to activity usually hitting a day or two after said activity. This is an overall loss of function.
I'm not surprised. I work almost everyday for 2-4 hours, sometimes more. Yes it's in bed brain work, but it must be taking a toll. While I can do a lot less physically these days, mostly I'm not over-doing it body-wise and so the relapse must be from too much mental work. There is also a constant stress related to the work and my dad, who is quite needy emotionally. I do love this online teaching, but it's costing me big time.
I have a sore throat most afternoons and evenings, I have little energy and notice even lifting my arms is draining. The OI is much worse, if I'm sitting or standing my feet are purple from blood pooling and I feel light-headed every time I stand up. I just feel like I have mono, even walking to the kitchen or sitting at the kitchen table for 5 minutes is exhausting.
It just sucks. It sucks that I've spent 14 years of my life so limited by this illness. 14 plus years feeling sick every. single. day. It is so frustrating to try to do stuff and just have nothing in the tank energy or strength wise. SO FRUSTRATING. And I'm trying, every day I try to do things, I don't give up. But it's really disheartening to be so sick and incapable. I wish I had a medical advocate. But based on 14 years being sick with this, that's a pie in the sky dream. Sometimes I just want to give up.
I'm not surprised. I work almost everyday for 2-4 hours, sometimes more. Yes it's in bed brain work, but it must be taking a toll. While I can do a lot less physically these days, mostly I'm not over-doing it body-wise and so the relapse must be from too much mental work. There is also a constant stress related to the work and my dad, who is quite needy emotionally. I do love this online teaching, but it's costing me big time.
I have a sore throat most afternoons and evenings, I have little energy and notice even lifting my arms is draining. The OI is much worse, if I'm sitting or standing my feet are purple from blood pooling and I feel light-headed every time I stand up. I just feel like I have mono, even walking to the kitchen or sitting at the kitchen table for 5 minutes is exhausting.
It just sucks. It sucks that I've spent 14 years of my life so limited by this illness. 14 plus years feeling sick every. single. day. It is so frustrating to try to do stuff and just have nothing in the tank energy or strength wise. SO FRUSTRATING. And I'm trying, every day I try to do things, I don't give up. But it's really disheartening to be so sick and incapable. I wish I had a medical advocate. But based on 14 years being sick with this, that's a pie in the sky dream. Sometimes I just want to give up.
Tuesday, January 31, 2017
Downward Slope
The slope has been downward trending. In fact I feel like I'm laying prone at the bottom of the slope. Usually for me these things (thankfully) are temporary.
For a couple of weeks now I've been especially fatigued, lightheaded (POTsy) and it hurts to breathe, like when I'm crashed...it's a dull ache/heaviness in my chest. Otherwise, my viral symptoms are no worse than usual (just like a very low-grade cold virus). However, the fatigue has been colossal. My legs get shaky standing briefly and every action seems overwhelming, like breaking through an impossible inertia. It's like when I had first had mono but the fatigue is times two.
I've stopped seeing Dr.s after the last specialist (gynaecologist) who told me on three occasions that thankfully I was "perfectly healthy". From a very pragmatic point of view, what's the point of seeing medical professionals if they don't even acknowledge the illness? These people are obviously not going to help me in anyway, and I waste my time and energy going to them. And while I know perfectly well that I'm ill, I don't need the added hurt and disappointment when someone who's supposed to have some knowledge completely discounts what I am experiencing.
I take my father every few months to the NP who is also my physician (but who I've mostly stopped seeing). Last time we went in, she really wanted me to make an appointment so I obliged...the appointment is for mid Feb. However, I did the blood work for the appointment this week and since I can sign in and see my blood results online, I noticed that my WBC was down to 3 which is leukopenia (normal range is 4-11). I also have mild neutropenia. While I'm sure I'll get a call from my NP, I know there is nothing to be done about it.
In the early days of M.E. I had a few counts even lower than this, and they checked me for all the stuff - cancer, auto immune etc. etc. only to find nothing definitive. I am NOT going to waste my time and energy again. Still, it is nice to see something on paper confirming that "hey, your immune system is exhausted". It is. Every cell in my body is tanked right now.
I'm pretty sure I can figure out why too. It's from taking on too much. I'm looking out for my dad, I'm teaching an online course, and I was attempting some very gentle exercise there for a bit. My body is saying "enough". Also, it's winter, not usually a time of year where I'm very resilient.
For a couple of weeks now I've been especially fatigued, lightheaded (POTsy) and it hurts to breathe, like when I'm crashed...it's a dull ache/heaviness in my chest. Otherwise, my viral symptoms are no worse than usual (just like a very low-grade cold virus). However, the fatigue has been colossal. My legs get shaky standing briefly and every action seems overwhelming, like breaking through an impossible inertia. It's like when I had first had mono but the fatigue is times two.
I've stopped seeing Dr.s after the last specialist (gynaecologist) who told me on three occasions that thankfully I was "perfectly healthy". From a very pragmatic point of view, what's the point of seeing medical professionals if they don't even acknowledge the illness? These people are obviously not going to help me in anyway, and I waste my time and energy going to them. And while I know perfectly well that I'm ill, I don't need the added hurt and disappointment when someone who's supposed to have some knowledge completely discounts what I am experiencing.
I take my father every few months to the NP who is also my physician (but who I've mostly stopped seeing). Last time we went in, she really wanted me to make an appointment so I obliged...the appointment is for mid Feb. However, I did the blood work for the appointment this week and since I can sign in and see my blood results online, I noticed that my WBC was down to 3 which is leukopenia (normal range is 4-11). I also have mild neutropenia. While I'm sure I'll get a call from my NP, I know there is nothing to be done about it.
In the early days of M.E. I had a few counts even lower than this, and they checked me for all the stuff - cancer, auto immune etc. etc. only to find nothing definitive. I am NOT going to waste my time and energy again. Still, it is nice to see something on paper confirming that "hey, your immune system is exhausted". It is. Every cell in my body is tanked right now.
I'm pretty sure I can figure out why too. It's from taking on too much. I'm looking out for my dad, I'm teaching an online course, and I was attempting some very gentle exercise there for a bit. My body is saying "enough". Also, it's winter, not usually a time of year where I'm very resilient.
Friday, January 27, 2017
Being out in the World
Some of us with M.E. from time to time are well enough to attempt to get out in the world. I do this in a couple of ways. Sometimes I attend an agility class with my dog. I adapt it to where I can participate. I spend a lot of it sitting on the floor because of POTS, I do only a few of the activities/training exercises and take lots of breaks, I also have them turn out some of the lights in the classroom as they trigger dizziness. Otherwise, I do very little out in the world. I occasionally run a quick errand, or go over to my dad's to check in on him...but overall, I just can't manage. I have someone else grocery shop for me, or run the majority of my "out in the world" errands.
If I do get out:
I feel horrible - like with influenza or a terrible cold
I'm dizzy - POTS dizzy which is light-headed, or M.E. dizzy which is a spaced out/off-kilter feeling
I get weak and shaky especially if the outing entails standing
I crash so bad a day or two later I never want to try again
The best outings for me are short, don't involve me driving, and take place outdoors. I suffer fewer symptoms outdoors than in closed spaces where the stimuli and artificial lighting do me in.
So this week I decided I needed an item of clothing and went to two stores. While in the stores, I was weak and shaky and dizzy, it reminded me why the event is so rare, which made me realize how seldom I'm out in the world. I saw people everywhere - out shopping, out driving, walking around and it brought home how isolated I am, and really just how different my life is from that of a normal 40 something. It reminded me that most people are out in the world every day!
I just don't go out much. Once a year I try to rally and make it to a movie...it is a rare thing. But I don't go to a workplace, I mostly don't shop for myself, I rarely attend social events, restaurants leave me shaky and dizzy so I rarely go out to eat. Because it's hard to even sit up for hours at a time, I just don't get out much. This shopping event gave me a moment of clarity where I realized what a crazy life I've lead the last 15 years.
That brief outing into the world reminded me how disabled and different my life is, how I create a bubble around myself that makes me feel a little bit more normal, but in reality I can't manage some of the very simple everyday things people do.
I was discussing with a friend (who also has M.E.) recently about severity. I had said something about my case of M.E. being moderate/mild and she was shocked I'd think of myself as mild. Maybe because I'm aware of how severe and life limiting M.E. can be and I know I am blessed and lucky to be managing things...things like working part time (from home in bed), things like going for very short gentle walks, or even cooking for myself.
Going to the store this week and seeing all the people out and about reminded me how limited I really am. I'd say I probably function at 20-30 percent of what a healthy person my age would, so when viewed that way I guess I'm pretty severely effected by this disease. But when the gage is compared to others who suffer M.E. I'm probably moderate. Just goes to show what a shi*&y illness this is.
And honestly, does it really matter where I am on the scale of severity, or what my life would be like in an alternate universe were I healthy? I don't really think it does. I just have to plow on the best I can, doing what I can manage. And I guess I need the occasional reminder that there's a reason I'm not out in the world much. It's because it triggers such terrible symptoms and makes me so much sicker. There is some "sense" in living in a bit of a bubble, I don't want to loose the function I do have.
If I do get out:
I feel horrible - like with influenza or a terrible cold
I'm dizzy - POTS dizzy which is light-headed, or M.E. dizzy which is a spaced out/off-kilter feeling
I get weak and shaky especially if the outing entails standing
I crash so bad a day or two later I never want to try again
The best outings for me are short, don't involve me driving, and take place outdoors. I suffer fewer symptoms outdoors than in closed spaces where the stimuli and artificial lighting do me in.
So this week I decided I needed an item of clothing and went to two stores. While in the stores, I was weak and shaky and dizzy, it reminded me why the event is so rare, which made me realize how seldom I'm out in the world. I saw people everywhere - out shopping, out driving, walking around and it brought home how isolated I am, and really just how different my life is from that of a normal 40 something. It reminded me that most people are out in the world every day!
I just don't go out much. Once a year I try to rally and make it to a movie...it is a rare thing. But I don't go to a workplace, I mostly don't shop for myself, I rarely attend social events, restaurants leave me shaky and dizzy so I rarely go out to eat. Because it's hard to even sit up for hours at a time, I just don't get out much. This shopping event gave me a moment of clarity where I realized what a crazy life I've lead the last 15 years.
That brief outing into the world reminded me how disabled and different my life is, how I create a bubble around myself that makes me feel a little bit more normal, but in reality I can't manage some of the very simple everyday things people do.
I was discussing with a friend (who also has M.E.) recently about severity. I had said something about my case of M.E. being moderate/mild and she was shocked I'd think of myself as mild. Maybe because I'm aware of how severe and life limiting M.E. can be and I know I am blessed and lucky to be managing things...things like working part time (from home in bed), things like going for very short gentle walks, or even cooking for myself.
Going to the store this week and seeing all the people out and about reminded me how limited I really am. I'd say I probably function at 20-30 percent of what a healthy person my age would, so when viewed that way I guess I'm pretty severely effected by this disease. But when the gage is compared to others who suffer M.E. I'm probably moderate. Just goes to show what a shi*&y illness this is.
And honestly, does it really matter where I am on the scale of severity, or what my life would be like in an alternate universe were I healthy? I don't really think it does. I just have to plow on the best I can, doing what I can manage. And I guess I need the occasional reminder that there's a reason I'm not out in the world much. It's because it triggers such terrible symptoms and makes me so much sicker. There is some "sense" in living in a bit of a bubble, I don't want to loose the function I do have.
Thursday, January 19, 2017
An Amazing TED Talk!
Here is a really good TED Talk on the history and plight of those with M.E. and others with hard to explain or yet-to-be understood illnesses. As a sick/ill population, our continued dismissal by most of the medical establishment and general public is part of a larger pattern which includes the marginalization of women and those with yet-to-be understood diseases.
But Jennifer Brea says it better, so here you go. I highly recommend watching this and urge anyone who reads this blog to take 15 minutes of your time to do so: https://www.ted.com/talks/jen_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose#t-5190
But Jennifer Brea says it better, so here you go. I highly recommend watching this and urge anyone who reads this blog to take 15 minutes of your time to do so: https://www.ted.com/talks/jen_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose#t-5190
Monday, January 9, 2017
Short-Term Memory
I'm guessing this will not apply to everyone with M.E. as I realise that if someone is severe, there often isn't a lot of fluctuation. And for those who are moderate and mild, maybe you have learnt to not over-do, to live within your limits?
I am not severe and while I don't live the extremes I did during the first few years of illness, I follow the relapsing remitting path and engage in the push/crash cycle all too often.
I seem to forget (over and over and over) on my better days how awful and crippled and sick I am on my "not" better days. Even if it's only been 24 hours! I mean if you asked me on a good day I would tell you that the bad days or crash days are horrible, but in reality, it's hard for me to really believe it, even if I've just been through a recent bad spell.
And so, I:
- do too much because I'm not feeling too sick on a "better" day
- tell myself "I'm really not that sick, it's not that bad"
- tell myself, "you really could do more, earn a living, exercise a bit more, leave the house more."
- figure I must be improving/improved
But then, because M.E. is a condition where the repercussions of too much activity often don't hit until a day or two later, a day or two later I'm laying in bed asking myself "Why did I do that thing/activity?" "How come after 14 years of this that I keep over doing it and ending up here?" "Am I stupid?"
Sigh
Am I the only one who overestimates my abilities on those days when I'm not as sick?
I am not severe and while I don't live the extremes I did during the first few years of illness, I follow the relapsing remitting path and engage in the push/crash cycle all too often.
I seem to forget (over and over and over) on my better days how awful and crippled and sick I am on my "not" better days. Even if it's only been 24 hours! I mean if you asked me on a good day I would tell you that the bad days or crash days are horrible, but in reality, it's hard for me to really believe it, even if I've just been through a recent bad spell.
And so, I:
- do too much because I'm not feeling too sick on a "better" day
- tell myself "I'm really not that sick, it's not that bad"
- tell myself, "you really could do more, earn a living, exercise a bit more, leave the house more."
- figure I must be improving/improved
But then, because M.E. is a condition where the repercussions of too much activity often don't hit until a day or two later, a day or two later I'm laying in bed asking myself "Why did I do that thing/activity?" "How come after 14 years of this that I keep over doing it and ending up here?" "Am I stupid?"
Sigh
Am I the only one who overestimates my abilities on those days when I'm not as sick?
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