Losses, a PALS’ perspective

KarenNWendyn

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There is an excellent thread on losses in the CALS sub-forum:

Losses

I thought I would start an analogous thread here in the PALS sub-forum. Our experience is personal and parallel to the CALS’ experience. It is happening to our bodies, day by day. We have to continually attempt to adapt, both in how we do things as well as in attitude. I’m hoping other PALS will chime in and share their opinions and experiences.

I think of people with cancer who mourn the loss of a breast, a limb, or a lung. Our losses are functional. Our body parts remain intact. Muscles just quit functioning, one by one. The loss of function is continual, additive, and progressive. It won’t leave us alone. We go to sleep, and it is there the next morning, perhaps even worse. We try to adapt, but then we have to re-adapt with each loss. There’s the BiPAP, the wheelchair, the grab bars, the commode chair, the urinal, the diaper, the hoist, the feeding tube, the speech generating device. The list goes on and on. It seems endless. Is this really happening to me? Sometimes it seems almost easier to become numb to the situation because the reality is so overwhelming.

Five years ago, if someone would have told me that towards the end of 2019 I’d be non-ambulatory, depending on a power wheelchair, needing others to help me with dressing, bathing, and toileting, receiving nutrition through a feeding tube, and unable to speak clearly, I would have asked to be relieved of my life swiftly. Yet here I am, trying to adapt to what I still have, trying to make sense of an impossible situation.

I am lucky to have a supportive partner, but I know this is wearing on her. I hate that this disease has dragged us both into it. I hate being so dependent.
 

KimT

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I know I should be very thankful for a slow progression but I'm always waiting for "something" more to happen. Today I trekked to the mall because I thought it might be my last time I could do it at Christmas. I pushed myself, came home exhausted. I thought about going to bed but it was only 4:30 so I made a shake with lots of raw chocolate to give me a boost.

My bidet isn't working properly. Tomorrow, I have to take it apart and see if I can fix it. Now I'm getting my eyes done so, hopefully, I can ditch these glasses. More money.....always more money to fight this disease. I have cousins who want to come for a visit but I don't feel like visitors. I want December to be relaxing. I want to watch movies that are kind and I want to be around people who don't try to fix me or tell me I'll beat it or I'll live for another 20 years.

I've always lived with a lot of guilt. I'm guilty that I don't spend much time with my brother. He seems to be so happy when I go over there. I hate that he struggles with memory and knows it. I hate seeing him fail. He was more like a father to me. I think he forgot I have ALS and I hope he did.

I miss my mother. I miss the smells that came from her kitchen and her sense of humor. I miss the small town where I grew up.

I thought back five years ago and back then I couldn't imagine not running, hiking, skiing, and playing golf when I retired. I didn't retire. I left my job because my doctors told me the prognosis. Now I wish I had stayed another couple of years because I would be much better off financially.

I understand why people in chronic pain stay high.

Tomorrow I will get my butt out of bed and go to church.
 

Trixie80

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Jun 21, 2014
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PALS
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03/2014
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CA
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BC
January will mark six Years since I was diagnosed and ten years since I first noticed my foot dropping. I have lost the ability to move and with that brings the need for someone to help me with absolutely everything.
throughout the past ten years i have lost so much and was absolutely devastated with every loss, yet here i sit with not much more to loose and I think I am, not happier, but definitely not as sad as i was when I was loosing a part of me every time I turned around. Sometimes I wish I lost my ability to move, talk and eat all at once, but then I remember all the things I could do for a while, and I am thankful.
the holidays are hard because everyone is out having fun at parties that I wish I could still go to. But Christmas is and always has been my favorite holiday. So I take it in stride, but it sucks...
 
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