I just thought for those who hadn't seen this you might appreciate it. It's beautifully written and resonated with me big time:
https://mobile.nytimes.com/2018/01/10/opinion/in-my-chronic-illness-i-found-a-deeper-meaning.html?referer=android-app%3A%2F%2Fcom.google.android.googlequicksearchbox
Thursday, January 11, 2018
Tuesday, January 9, 2018
Update
I don't feel as if I have much to say, but nonetheless, it's time for an update. Christmas passed quite uneventfully. We had a dinner here on Boxing Day that was celebratory but fairly low-key (we had my dad over). Then of course I was crashed the next day.
New Years eve was awesome. A friend came up from Minnesota and while we didn't do anything too crazy that night (watched a movie, drank some port, ate a light dinner and yummy snacks) it was such a pleasant night. Believe it or not, I was AWAKE at midnight! I can't remember this happening on a New Years since I got ill! Part of the reason why is that I wasn't crashed that day so I didn't feel the constant desperate need to retreat to my bed.
So while I don't think it behooves those who are ill to be too goal oriented (leads to disappointment after disappointment), I will list things I am happy I did in 2017:
On the negative:
So we are two weeks into January and I am laying in bed doing pretty much nothing useful. I feel divided about not working (probably til July). Part of me feels a wave of relief every day I wake up (and given I'm pretty flared this week this relief is doubled).
New Years eve was awesome. A friend came up from Minnesota and while we didn't do anything too crazy that night (watched a movie, drank some port, ate a light dinner and yummy snacks) it was such a pleasant night. Believe it or not, I was AWAKE at midnight! I can't remember this happening on a New Years since I got ill! Part of the reason why is that I wasn't crashed that day so I didn't feel the constant desperate need to retreat to my bed.
So while I don't think it behooves those who are ill to be too goal oriented (leads to disappointment after disappointment), I will list things I am happy I did in 2017:
- Believe it or not, I worked part-time (10-25 hrs a week) from home 10 months of 2017 (actually probably closer to 8, but I was officially employed during 10 months).
- I went to the Slate Is. and camped with friends for 4 nights.
- I spent two more nights in October solo (with the dog) in the woods on a beautiful lake.
- I managed my dad's care, finances, health, and issues including loss of his licence.
- With lots of help, we repaired a section of the house's foundation during the summer - it was mostly quite fun.
- I spent a week with friends in Duluth.
- After 15 years I officially got a diagnosis of POTS including travelling for the tilt table testing.
- I didn't have any significant relapses (although I did have a 6 week bad patch last winter).
On the negative:
- At times, the trying to work while ill (enduring lots of sickness stuff) was beyond anxiety making, I experienced high levels of anxiety and stress in 2017.
- I endured patches of brain fog similar to when I first got ill.
- I mostly had to give up my one 'out of the house' activity because working sucked me dry energy and health-wise.
- Similarly I wasn't able to do much printmaking as work, my dad, and recovery from these two was all I could manage.
- I lost my closest aunt.
So we are two weeks into January and I am laying in bed doing pretty much nothing useful. I feel divided about not working (probably til July). Part of me feels a wave of relief every day I wake up (and given I'm pretty flared this week this relief is doubled).
Unfortunately, this feeling is then often followed by guilt - that I should be "doing something useful" with my limited energy. Oh course I try to tell myself that rest and recovery is useful.
It's funny because when I'm in a crash or relapse I think/feel, "How can I possibly endure another day of this?!! How could I have been so stupid to --- e.g. do that errand, visit my dad, walk a block, etc.?". But even a day after pulling out of a crash I flip and tell myself, "You really can manage more, don't be so lazy, so negative, it really isn't that bad, you only have a mild case of M.E. etc.".
It's funny because when I'm in a crash or relapse I think/feel, "How can I possibly endure another day of this?!! How could I have been so stupid to --- e.g. do that errand, visit my dad, walk a block, etc.?". But even a day after pulling out of a crash I flip and tell myself, "You really can manage more, don't be so lazy, so negative, it really isn't that bad, you only have a mild case of M.E. etc.".
Just for fun, here's a photo of my dad (and me) beside an old icebreaker (it was hard to get the whole boat into the photo) - he loves to ship watch.
Monday, December 18, 2017
Christmas Blues
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.
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.
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?
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