It's been over a month since things have been locked down due to Covid. In some ways, my life hasn't changed much at all. I finished up my course (it was hard, like pulling teeth every day). However, since finishing a week and 1/2 a go, I've had trouble slowing down, appreciating my chance to rest and recharge. I've been plagued by bouts of anxiety.
If I try to relax, I start to worry about everything I 'should' do before my next course in July. There's also some Dad estate related tasks pending. This week I got together all the tax stuff and reorganized his file box.
The last two days have been our first warmer days. The first one I went out and spent a lot of time in the yard. I got a little sun, and the next day was crashed/flared. This happens to me whenever I get too much sun, even if I'm mostly sitting. Of course I went down a research hole (again) and it's common in a number of autoimmune conditions to have a flare from sun exposure. And since POTS is likely autoimmune and M.E. has immune components, I guess it isn't surprising I flare after sun exposure.
My house has a lot of issues so since my Dad passed, I've been seriously thinking of moving. But all the 'to dos' involved have me stressed. Alternatively, if I stay here, I'm too sick to do any of the fixing/maintenance/upkeep. For example, cracked leaky foundation, outdoor drainage issues, floors that need redoing, water damaged ceiling, unfinished walls and ceilings, painting, electrical, cupboards, collapsing patio, rotting molding shed, precarious falling down fence, mold in the walls, lack of insulation etc. It's all just too much.
But figuring out the whole process of moving and finding something smaller, more doable/low maintenance all on my own is also completely overwhelming. I've played with the idea of selling my house and taking that money and my small chunk of inheritance and having someone build a well-insulated small/tiny cabin on some land. But land near town isn't exactly cheap, it would have to have a well/water already. There are just a million details that would have to be figured out in order to sell one house and build another...all on my own, while ill. I'm having trouble coping with just the small tasks on my plate.
Additionally I think, what happens when I'm living out of town and sick? How do I get groceries on a bad day? How do I cope with the isolation, knowing I have no friends and/or family near by? My roommate isn't interested in moving with me if I move (I think she's ready to move on as well), and she's probably the only person I'd consider a close friend in the entire region.
I knew I'd feel a gap and loss and loneliness once my dad was gone when there was no-one left to care for. I had his company/friendship almost daily for over 4 years. While grieving this loss, Covid restrictions have now isolated me further from everyone but my roommate (who isn't here a whole lot). It's brought to light my lack of social support/community. But where could I move that would be any better? No where. I can't think of anywhere.
While it's a dark thought, it would be a relief to have Covid (or something) take me. I really don't feel like I want to stick around anymore. I lived a decent life despite almost 20 years of chronic illness. I really don't want to face another 20 years sick, poor, and mostly isolated.
Saturday, May 2, 2020
Saturday, March 7, 2020
February Blues
I think I have the February blues. Except it's March. My mom (who struggled with depression) always said this was the toughest time of year for her. For me, it's always been December with the low light and short days. I've also now lost 3 family members in December.
So after my last iron infusion in January, as you may know from reading my last blog post, I ended up going to emergency with severe nausea and stomach upset. It took almost 4 weeks to recover. I lost 10lbs. I'm convinced it was a reaction to the iron infusion (and some of my tests did indicate I got too much iron).
Right now I'm in an unrelated flare/relapse, the M.E. kind. I suspect it's due to my body fighting something. Often when there's a cold or flu going round instead of catching it, I get an M.E./POTS flare instead. Which honestly is worse. I'd rather have a cold.
I am so unmotivated today. I just want to lay in bed again all day. Since getting my puppy just over a year ago, on the whole I've maintained a higher level of activity then before puppy (both with my dad's care, part-time work, and a puppy). While it's been super hard, one of the good things is I've managed to walk or take the dogs swimming fairly often. The time spent in nature, outdoors has been so good for me mentally and spiritually even if not physically (although I'd argue that it's helped physically too in some ways).
Right now I'm too crashed to walk, and Ripple has a torn dew claw. Thankfully this is nothing serious, but she keeps re-injuring it. Given her energy level, she can be a bit much when she doesn't get her daily exercise. We are both missing it (and likely my senior dog is too). I am hoping and praying this relapse/crash is short lived. How is it possible to be this weak and sick with no recourse??! It's mind boggling. And in case you're wondering - "I look great". Sigh.
So after my last iron infusion in January, as you may know from reading my last blog post, I ended up going to emergency with severe nausea and stomach upset. It took almost 4 weeks to recover. I lost 10lbs. I'm convinced it was a reaction to the iron infusion (and some of my tests did indicate I got too much iron).
Right now I'm in an unrelated flare/relapse, the M.E. kind. I suspect it's due to my body fighting something. Often when there's a cold or flu going round instead of catching it, I get an M.E./POTS flare instead. Which honestly is worse. I'd rather have a cold.
I am so unmotivated today. I just want to lay in bed again all day. Since getting my puppy just over a year ago, on the whole I've maintained a higher level of activity then before puppy (both with my dad's care, part-time work, and a puppy). While it's been super hard, one of the good things is I've managed to walk or take the dogs swimming fairly often. The time spent in nature, outdoors has been so good for me mentally and spiritually even if not physically (although I'd argue that it's helped physically too in some ways).
Right now I'm too crashed to walk, and Ripple has a torn dew claw. Thankfully this is nothing serious, but she keeps re-injuring it. Given her energy level, she can be a bit much when she doesn't get her daily exercise. We are both missing it (and likely my senior dog is too). I am hoping and praying this relapse/crash is short lived. How is it possible to be this weak and sick with no recourse??! It's mind boggling. And in case you're wondering - "I look great". Sigh.
Tuesday, January 28, 2020
Trip to Emergency - history repeating itself
I have now gone to emergency twice in my adult life. Both times since M.E., and both times for gastrointestinal distress.
Long story short, after my last iron infusion, I developed what felt like a stomach flu. Seven days later while some of the symptoms were improving (diarrhea) the grumbling intestinal distress, burning like pain, and severe nausea were if anything, worse. I had an appointment in a week, but didn't think I could take another full week of nausea.
For a Monday, when I got there, emergency didn't seem too busy but it quickly filled up. (One nurse told me that ours is the busiest emergency department in Canada. My suspicion is this is partly due to lack of family Drs. Even if you have one, sometimes appointments are scheduled weeks out). I was in the waiting room 3 hours sitting up with waves of severe nausea. Just when I was about to call it quits and go home, they called me in. I saw a Dr. for seconds, she ordered tests, a few pills, and IV fluids.
Four hours later (7 total) I was released with no clear idea of what was wrong. They suspected my ulcers were returning and gave me a prescription for a PPI. They told me that they don't do iron studies at the emergency lab so they had no idea if this was infusion or iron related.
The last drug they tried with me before I left was plain old gravol, an anti-nausea pill. While it didn't help much with the nausea, on the positive, it's sedative properties meant when I got home, I dozed off on the couch. Once I dragged myself into bed I passed out completely.
Then I had a night full of drugged dreams, some of which included driving around with my dad. These dreams, and the whole experience made me miss him even more. Partly because we spent too many hours at that emergency together over the last year (I don't miss those times). Partly, because the lack of his presence wasn't lost on me as I sat there alone. Most people had kids, parents, partners, friends with them. I woke up this morning feeling desperately lonely for my dad. Also aware of my aloneness in the world.
That said, as I write this I'm surrounded by the warmth and love of golden retrievers, and that is something.
Long story short, after my last iron infusion, I developed what felt like a stomach flu. Seven days later while some of the symptoms were improving (diarrhea) the grumbling intestinal distress, burning like pain, and severe nausea were if anything, worse. I had an appointment in a week, but didn't think I could take another full week of nausea.
For a Monday, when I got there, emergency didn't seem too busy but it quickly filled up. (One nurse told me that ours is the busiest emergency department in Canada. My suspicion is this is partly due to lack of family Drs. Even if you have one, sometimes appointments are scheduled weeks out). I was in the waiting room 3 hours sitting up with waves of severe nausea. Just when I was about to call it quits and go home, they called me in. I saw a Dr. for seconds, she ordered tests, a few pills, and IV fluids.
Four hours later (7 total) I was released with no clear idea of what was wrong. They suspected my ulcers were returning and gave me a prescription for a PPI. They told me that they don't do iron studies at the emergency lab so they had no idea if this was infusion or iron related.
The last drug they tried with me before I left was plain old gravol, an anti-nausea pill. While it didn't help much with the nausea, on the positive, it's sedative properties meant when I got home, I dozed off on the couch. Once I dragged myself into bed I passed out completely.
Then I had a night full of drugged dreams, some of which included driving around with my dad. These dreams, and the whole experience made me miss him even more. Partly because we spent too many hours at that emergency together over the last year (I don't miss those times). Partly, because the lack of his presence wasn't lost on me as I sat there alone. Most people had kids, parents, partners, friends with them. I woke up this morning feeling desperately lonely for my dad. Also aware of my aloneness in the world.
That said, as I write this I'm surrounded by the warmth and love of golden retrievers, and that is something.
Sunday, January 12, 2020
Grief and Loss
I've lost people I've loved before. My sister died when I was a teen. When I was in University I lost an aunt I was close to. More recently, I lost my mom and my aunt Laura. Death is part of being mortal, thus loss is something we'll all face and have to move through.
In some ways loosing my dad feels like the hardest hit yet.
Why has this been so tough for me? He was 89 and quite sick the last few months.
I think there are quite a few reasons. For one, I saw him almost every day the last four years. I miss his presence acutely in a way I didn't with some of the other losses I've faced. There is also the fact that we were close. I also think the fact that I was his care-giver has a role to play. This results in me sometimes feeling relief, but also a desperate kind of emptiness. To nurture someone for years and then have them gone leaves a gaping hole.
Taking care of my dad shaped my recent life and gave it purpose. When you have a child you nurture and care for someone, you put all kinds of energy into their well being, and you hold in your heart hope for their future, that all your time and love will hold them up in some way. But when you nurture someone who's near the end of life, what do you hope for? I spent hours upon hours, days upon days, months upon months with him, and now it's over. And to what end?
Those of us with disabling chronic illness know all about loss. We face monumental loss when we get sick, one that a mostly healthy person could never understand. If the chronic illness is disabling, we lose our jobs, perhaps relationships, and often our sense of identity - we can no longer do the things we once did. I went through this huge loss in my early 30s. While I've been able to build a semblance of a life, I still feel the loss of a healthy body in small or large ways almost every day. (Too sick to go to a movie, a restaurant, a party, not being able to go for a run, or a hike, not being able to travel, forced poverty or near poverty because I work minimally.) Basically, being disabled means having to deny ourselves almost everything that once brought us joy/pleasure - which is a constant process of loss.
Where am I going with this? Honestly, I guess I'm just kind of rambling.
Am I doing okay? Not really. I feel desperately alone in the world. I'm working part-time online again this semester and trying to motivate myself to so much as look at the screen, it's like torture. It all seems so pointless.
I had an iron infusion on Friday and it crashed me so hard that Saturday I barely moved (and when I did every cell ached). Thankfully I only have one infusion left in this round.
In some ways loosing my dad feels like the hardest hit yet.
Why has this been so tough for me? He was 89 and quite sick the last few months.
I think there are quite a few reasons. For one, I saw him almost every day the last four years. I miss his presence acutely in a way I didn't with some of the other losses I've faced. There is also the fact that we were close. I also think the fact that I was his care-giver has a role to play. This results in me sometimes feeling relief, but also a desperate kind of emptiness. To nurture someone for years and then have them gone leaves a gaping hole.
Taking care of my dad shaped my recent life and gave it purpose. When you have a child you nurture and care for someone, you put all kinds of energy into their well being, and you hold in your heart hope for their future, that all your time and love will hold them up in some way. But when you nurture someone who's near the end of life, what do you hope for? I spent hours upon hours, days upon days, months upon months with him, and now it's over. And to what end?
Those of us with disabling chronic illness know all about loss. We face monumental loss when we get sick, one that a mostly healthy person could never understand. If the chronic illness is disabling, we lose our jobs, perhaps relationships, and often our sense of identity - we can no longer do the things we once did. I went through this huge loss in my early 30s. While I've been able to build a semblance of a life, I still feel the loss of a healthy body in small or large ways almost every day. (Too sick to go to a movie, a restaurant, a party, not being able to go for a run, or a hike, not being able to travel, forced poverty or near poverty because I work minimally.) Basically, being disabled means having to deny ourselves almost everything that once brought us joy/pleasure - which is a constant process of loss.
Where am I going with this? Honestly, I guess I'm just kind of rambling.
Am I doing okay? Not really. I feel desperately alone in the world. I'm working part-time online again this semester and trying to motivate myself to so much as look at the screen, it's like torture. It all seems so pointless.
I had an iron infusion on Friday and it crashed me so hard that Saturday I barely moved (and when I did every cell ached). Thankfully I only have one infusion left in this round.
Monday, December 30, 2019
December Updates - Sad News
November and December were terribly difficult months. My dad's health declined significantly over the last couple months to the point where he ended up in the hospital on December 6th. He was eventually moved to a hospice floor in a different hospital on the 12th where he died two days later on December 14th. I sat by his bed for much of it. He was conscious on and off especially the first 5 or 6 days but stopped eating (couldn't swallow) and stopped talking.
Since then I've done a lot of paperwork and caregiver/executor type tasks. Right after he died I was so exhausted I barely moved from the sofa for a couple days. I was so dizzy, lightheaded and exhausted, utterly exhausted. We've already had the funeral at his church in Kitchener, the city where he spent most his life so I've also had to travel.
How am I? Incredibly sad and now depressed. For 4 years this man has been with me for part of almost every day. While it was a struggle sometimes, especially recently when he required more care and was visibly suffering, mostly it's been good. I feel so blessed and grateful to have accumulated years of memories and times together with him. Not only that, but my dad loved me to the moon and back. Everything I did seemed to make him proud. To be loved and appreciated like that is pretty rare and I doubt I will ever experience it again. Importantly, having experienced my mom's passing 4 years ago I very often tried, and remembered, to consciously savour my time with my dad. I told him often that I loved him and hugged him lots.
Everywhere I go, everywhere I look lately I have memories of him. I miss him terribly. And to be completely honest, I feel done. I just don't feel there's anything left to live for. I don't want to keep going without him, all alone. For the last couple weeks I've been living in a daze, getting stuff done, but besides the waves grief and loss, feeling nothing for anyone or anything else - no interest, no enjoyment, no affection....just nothing. I just don't want to move forward. I feel devestatingly lonely without him in my life. I don't know how I'll move on.
Since then I've done a lot of paperwork and caregiver/executor type tasks. Right after he died I was so exhausted I barely moved from the sofa for a couple days. I was so dizzy, lightheaded and exhausted, utterly exhausted. We've already had the funeral at his church in Kitchener, the city where he spent most his life so I've also had to travel.
How am I? Incredibly sad and now depressed. For 4 years this man has been with me for part of almost every day. While it was a struggle sometimes, especially recently when he required more care and was visibly suffering, mostly it's been good. I feel so blessed and grateful to have accumulated years of memories and times together with him. Not only that, but my dad loved me to the moon and back. Everything I did seemed to make him proud. To be loved and appreciated like that is pretty rare and I doubt I will ever experience it again. Importantly, having experienced my mom's passing 4 years ago I very often tried, and remembered, to consciously savour my time with my dad. I told him often that I loved him and hugged him lots.
Everywhere I go, everywhere I look lately I have memories of him. I miss him terribly. And to be completely honest, I feel done. I just don't feel there's anything left to live for. I don't want to keep going without him, all alone. For the last couple weeks I've been living in a daze, getting stuff done, but besides the waves grief and loss, feeling nothing for anyone or anything else - no interest, no enjoyment, no affection....just nothing. I just don't want to move forward. I feel devestatingly lonely without him in my life. I don't know how I'll move on.
Saturday, October 19, 2019
Updates
First, I want to thank people who have been commenting. I still can't figure out how to post a response even as anonymous (very strange), but please know that I read and appreciate them.
I am not so well today (crashed). I have been doing a lot. I think that while I am no means better from the M.E., I am overall improved. I seem to be able to push harder and longer than I have the whole time I've been ill. That said, I have had two infections already this fall (which ironically sometimes gives me an energy boost). The most recent one was either a severe cold or influenza (came with a fever) and lasted over two weeks.
It's been a tough month emotionally. I was headed to a wedding for one of my best friends and got only 90 min south. The residence where my dad lives called to tell me he was rushed to hospital as his vitals were all crashing. Needless to say, I returned home and despite exhaustion continued to visit him and negotiate the various elements of him being in hospital then returning home over the next week.
He is back home but his dementia has now gotten significantly worse to the point it's very very difficult for me to be around him. It's like I've lost the person that was mostly there just a few weeks ago. I also deal with some kind of issue everyday I visit (mostly hygiene related).
It's no wonder I've crashed what with still working part time, dealing with highly highly energetic puppy, and my dad and his care.
This week, I got out for a couple hours with a friend to paddle on a local river. Most the leaves have left the trees so winter is just around the corner. I'm also including a couple dog photos taken after our first snowfall last week. Another friend and I did a short walk to a local waterfall with our dogs.
I am not so well today (crashed). I have been doing a lot. I think that while I am no means better from the M.E., I am overall improved. I seem to be able to push harder and longer than I have the whole time I've been ill. That said, I have had two infections already this fall (which ironically sometimes gives me an energy boost). The most recent one was either a severe cold or influenza (came with a fever) and lasted over two weeks.
It's been a tough month emotionally. I was headed to a wedding for one of my best friends and got only 90 min south. The residence where my dad lives called to tell me he was rushed to hospital as his vitals were all crashing. Needless to say, I returned home and despite exhaustion continued to visit him and negotiate the various elements of him being in hospital then returning home over the next week.
He is back home but his dementia has now gotten significantly worse to the point it's very very difficult for me to be around him. It's like I've lost the person that was mostly there just a few weeks ago. I also deal with some kind of issue everyday I visit (mostly hygiene related).
It's no wonder I've crashed what with still working part time, dealing with highly highly energetic puppy, and my dad and his care.
This week, I got out for a couple hours with a friend to paddle on a local river. Most the leaves have left the trees so winter is just around the corner. I'm also including a couple dog photos taken after our first snowfall last week. Another friend and I did a short walk to a local waterfall with our dogs.
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| Ripple looking all grown up |
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| My sweet old gal |
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