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.
Friday, October 6, 2017
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
 |
| Sunset: Two kinds of fire |
 |
| 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 |
 |
| 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.
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