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.
Sunday, January 12, 2020
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 |
Sunday, September 15, 2019
Drudgery
The drudgery of chronic illness, is that it just never goes away. Ever. After years and years of feeling horrible but "looking great" it gets old. For some reason lately it's hitting me how much of my adult life I've spent sick. And how being sick has stollen so much of my (potential) life/living - missed events, missed work/employment, miss recreation, missed relationships, missed travel, missed friendships and time spent with friends. Years and years have passed.
I'm getting to an age where more peers are encountering health problems. I feel empathy. Although selfishly this also makes me sad because I know my window to improve or get better before my body ages is closing fast (aka unlikely).
I've had a tough week healthwise so I'm feeling blue, whiney, and sorry for myself.
Some good things have happened lately. After a hospital visit a couple weeks ago, my dad has stabilized due to some medication adjustments. He is by no means better, but he's holding for now. I also got a week or so off around labour day and spent four days in the woods on a lake. For two of them a friend joined me. It was so mentally and emotionally healing.
As for this most recent crash/relapse, it's likely because I'm doing too much. Day after day after day. Last Sunday I drove out to watch a dog thing and I shouldn't have. Monday I woke up crashed (expected) but a week later, I'm still waking up every day crashed. It really hurts/aches to take a deep breath, like there's a deep seated infection in there. My gut is off, I'm lightheaded most the time, and I feel fluy, achy, sore throat, completely wiped out and just overall awful. And yet no one can tell from the outside, and I feel there is no one TO tell.
Seriously no-one seems to give a rat's ass. Why would they? It's gone on so long. No one ever asks how I'm doing anymore. Maybe I've scared them off because years ago when people asked I always felt awkward and embarrassed that I was still so sick (but looked fine). I would deflect.
And what do you say to "How are you?" when the truth sucks so much? "I still feel like bunk every single friggn day, some days and hours are worse than others but there are no words to describe how sick I am all the time."
I feel so alone and unsupported. Being this sick constantly with two invisible illnesses makes life incredibly isolating. Add to that - when I do interact, all anyone seems to point out regarding health is either what I've managed (to force myself to do) or that I look great/okay. It is so lonely making I can barely stand it, particularly on my crash days. It's like I'm physically fighting this horrible monster that's trying to ravage my body - no one can see - it thus it's typically downplayed or completely unacknowledged.
I really feel that outside my dad and the dogs, there is no-one who'd more than bat an eye if I dropped off the face of the earth.
On that cheery note, here are some photos of my camping for the stalwart folks who still read my depressing rants and vents (thank you by the way). I'd love to hear how you are doing (honestly) in the comments - whether you have a chronic illness or not.
I'm getting to an age where more peers are encountering health problems. I feel empathy. Although selfishly this also makes me sad because I know my window to improve or get better before my body ages is closing fast (aka unlikely).
I've had a tough week healthwise so I'm feeling blue, whiney, and sorry for myself.
Some good things have happened lately. After a hospital visit a couple weeks ago, my dad has stabilized due to some medication adjustments. He is by no means better, but he's holding for now. I also got a week or so off around labour day and spent four days in the woods on a lake. For two of them a friend joined me. It was so mentally and emotionally healing.
As for this most recent crash/relapse, it's likely because I'm doing too much. Day after day after day. Last Sunday I drove out to watch a dog thing and I shouldn't have. Monday I woke up crashed (expected) but a week later, I'm still waking up every day crashed. It really hurts/aches to take a deep breath, like there's a deep seated infection in there. My gut is off, I'm lightheaded most the time, and I feel fluy, achy, sore throat, completely wiped out and just overall awful. And yet no one can tell from the outside, and I feel there is no one TO tell.
Seriously no-one seems to give a rat's ass. Why would they? It's gone on so long. No one ever asks how I'm doing anymore. Maybe I've scared them off because years ago when people asked I always felt awkward and embarrassed that I was still so sick (but looked fine). I would deflect.
And what do you say to "How are you?" when the truth sucks so much? "I still feel like bunk every single friggn day, some days and hours are worse than others but there are no words to describe how sick I am all the time."
I feel so alone and unsupported. Being this sick constantly with two invisible illnesses makes life incredibly isolating. Add to that - when I do interact, all anyone seems to point out regarding health is either what I've managed (to force myself to do) or that I look great/okay. It is so lonely making I can barely stand it, particularly on my crash days. It's like I'm physically fighting this horrible monster that's trying to ravage my body - no one can see - it thus it's typically downplayed or completely unacknowledged.
I really feel that outside my dad and the dogs, there is no-one who'd more than bat an eye if I dropped off the face of the earth.
On that cheery note, here are some photos of my camping for the stalwart folks who still read my depressing rants and vents (thank you by the way). I'd love to hear how you are doing (honestly) in the comments - whether you have a chronic illness or not.
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| Please can we come in the tent? |
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| There were cool mushrooms everywhere |
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| Up in time to watch the sunrise with a cup of coffee |
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| A rare snuggle from Rip |
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| When you lay on the ground a lot you notice the trees and sky |
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| Sunrise paddle on glass |
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| Selfie with my old gal |
Friday, August 16, 2019
No Wiggle Room
I am in a 'period of worsening'. I refuse at this point to call it a relapse, however, it's been around 2 weeks of 'pretty bad' now. My sore throat has been worse (mostly constant, but still mild) and it hurts a lot to take a deep breath. I'm fatigued and weak and dizzy/light headed and shaky. I feel viral and heavy. This all affects my mood which is lower, and I'm very easily frustrated.
Try being a caregiver for someone with dementia and congestive heart failure while feeling horribly ill and weak yourself. Seriously, I hope that I am not morally weak for my constant lack of patience. The other thing I've noticed with this worsening period is I have no leeway to 'push'. I've been getting away with overdoing it for months and months. Now if I edge a bit healthwise one day then do something, the next day I am back in a deep pit of un-health.
So here I am complaining (again) that this illness sucks. Duh! Nonetheless I'm hoping to escape for a few days at the end of August if at all possible. I am still in the midst of marking, but should be able to pull it all off by next week. The summer here is quickly closing and I need a serious break/breather.
Please send many healing and strengthening vibes my way. Also send joy - not sure how to find mine these days.
Try being a caregiver for someone with dementia and congestive heart failure while feeling horribly ill and weak yourself. Seriously, I hope that I am not morally weak for my constant lack of patience. The other thing I've noticed with this worsening period is I have no leeway to 'push'. I've been getting away with overdoing it for months and months. Now if I edge a bit healthwise one day then do something, the next day I am back in a deep pit of un-health.
So here I am complaining (again) that this illness sucks. Duh! Nonetheless I'm hoping to escape for a few days at the end of August if at all possible. I am still in the midst of marking, but should be able to pull it all off by next week. The summer here is quickly closing and I need a serious break/breather.
Please send many healing and strengthening vibes my way. Also send joy - not sure how to find mine these days.
Sunday, July 21, 2019
July - Busy Busy Summer
The most intensive (six week online) course I teach falls in the summer. I hate being so busy during the best part of the year. I'd rather spend my limited energy out enjoying the big lake and my pups.
However, it's a course I like teaching and it pays pretty well so I agreed again to do it. Unfortunately, with the added strain of my dad's poor health and a young pup to care for, it's been very challenging.
My dad was back at emergency last week because his breathing was so terrible. There was a noise when he was inhaling that made both me and his nurse practitioner (NP) worried. She said she wanted X rays and if she ordered them it would take days maybe a week or more to get the results.
She asked me to take him to emergency (yuck!!! it's awful). We were there 6 or so hours and discovered after X rays and blood work that the cause is his pleural effusion (edema or fluid around his lungs) is causing the breathing issues. It's all related to his heart. The Dr. was wanting to admit him, but he also was okay with releasing him given his oxygen saturation wasn't bottomed out.
My dad had trouble even managing the hours we were there with my constant attention, I didn't force him to stay at the hospital. His confusion/cognitive/dementia issues cause him to be agitated and staying at the hospital would make these all much worse.
Not surprisingly since the incident, I've had to spend even more time over at his place helping him. I hit a wall on Friday. I couldn't bring myself to work at all I was so crashed and unwell and depressed and overwhelmed. Thankfully I bounced back and am managing to plug along. It's been poor timing coinciding with my intensive course. That said, there is never good timing for your father to be so ill and facing 'end of life' is there?
Wish me luck. If I'm not on here for a while it's because my life is a whirlwind and I'm just trying to get through each day.
However, it's a course I like teaching and it pays pretty well so I agreed again to do it. Unfortunately, with the added strain of my dad's poor health and a young pup to care for, it's been very challenging.
My dad was back at emergency last week because his breathing was so terrible. There was a noise when he was inhaling that made both me and his nurse practitioner (NP) worried. She said she wanted X rays and if she ordered them it would take days maybe a week or more to get the results.
She asked me to take him to emergency (yuck!!! it's awful). We were there 6 or so hours and discovered after X rays and blood work that the cause is his pleural effusion (edema or fluid around his lungs) is causing the breathing issues. It's all related to his heart. The Dr. was wanting to admit him, but he also was okay with releasing him given his oxygen saturation wasn't bottomed out.
My dad had trouble even managing the hours we were there with my constant attention, I didn't force him to stay at the hospital. His confusion/cognitive/dementia issues cause him to be agitated and staying at the hospital would make these all much worse.
Not surprisingly since the incident, I've had to spend even more time over at his place helping him. I hit a wall on Friday. I couldn't bring myself to work at all I was so crashed and unwell and depressed and overwhelmed. Thankfully I bounced back and am managing to plug along. It's been poor timing coinciding with my intensive course. That said, there is never good timing for your father to be so ill and facing 'end of life' is there?
Wish me luck. If I'm not on here for a while it's because my life is a whirlwind and I'm just trying to get through each day.
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