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Tag: ms challenges

Weekend changes

Weekend changes

The switch with the new aide actually went pretty flawlessly. My current aide actually had a lot to do with that. She really took the time to show the new aide around. She didn’t have to do that. It wasn’t an aide from her agency. It was an aide that was replacing her. I think I was more impressed with her this week than I have been the entire time she’s been with me. I actually was a little sad…

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Too much emphasis on PT

Too much emphasis on PT

I didn’t write it but looking back at my episode with physical therapy last week https://multipleexperiences.org/2022/04/22/breathing-issues/, may have been a panic attack. It seems that this week things aren’t going much better. I was able to stand right up on Sunday. I got into my wheelchair. I ate dinner at the table for the first time in ages. The next day I couldn’t stand up during physical therapy. This was the third visit that I felt was wasted. Medicare only…

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Things need to change

Things need to change

I actually got out of bed and ate dinner at the table last night. I am tired of being in this bed. I might not have endurance. I might not be able to take a step. I can usually transfer to my wheelchair with some assistance. Key word is assistance. The aides that I currently have, that “assistance” is questionable. My weekend aide is lovely but her English isn’t good. I would have to translate instructions to her for everything….

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High heart rate

High heart rate

I am very slowly getting some strength. The key word there is slowly. I knew I would need to have a lot of patience. I just thought maybe there would be a little muscle memory. Unfortunately, my problem was because of muscle atrophy, not muscle weakness. It is not so easy to rebuild muscle 24 years into your multiple sclerosis life. I couldn’t maintain the muscle I had before I ended up in the hospital. My disability always got worse…

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Avoiding brain mush

Avoiding brain mush

I have been expanding my mind. I am still watching mindless television but playing games too. I play dordle and wordle online daily. I even downloaded an app to play wordle throughout the day. I also love Sudoku. I’m good at them too. I play the hard or expert levels. It can take me an hour to play an expert game. I love the challenge. I just want everyone to know I am not completely wasting my brain away. I…

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A lump in the bed

A lump in the bed

My life has changed a lot in the past few months. I went from independent to completely dependent. I can’t do the simplest of things anymore. I can’t just get in my wheelchair and open the refrigerator for my ice coffee. I can’t just grab a sweatshirt from my closet. Hell I can’t even fix my sock when it gets turned around on my foot. A very big pet peeve of mine. I was limited in my dependence prior to…

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Exercise, standing and Bionic Gym

Exercise, standing and Bionic Gym

I am very weak. My legs can’t hold me up for long. PT has been working on just getting me up and standing. I never thought something so simple would be so hard. Let me tell you, it is so hard. I try to sway back and forth shifting my weight as I hold onto a walker. I had to sit down again because I have no endurance. One day I was able to get back up once. The other…

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Multiple Sclerosis symptoms worsen

Multiple Sclerosis symptoms worsen

I’m better. No more fevers. My breathing is back to normal. I’m completely done with antibiotics. I have no more signs of the pneumonia. Great news. Yes it is. Yet the aftermath is as I expected. I was weakened from being in a bed for 1 1/2 months on top of my multiple sclerosis symptoms worsening. I had no time to adjust to my new body because I was so sick. I wasn’t focusing on my MS while I had…

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The new me…under construction

The new me…under construction

Let’s see if I can get back to any regularity writing a blog. When I was in the hospital, i was given a Fiberoptic Endoscopic Evaluation of Swallowing (FESS). My pneumonia was considered to be caused by aspiration. Aspiration pneumonia occurs when food, saliva, liquids, or vomit is breathed into the lungs or airways leading to the lungs, instead of being swallowed into the esophagus and stomach. https://www.mountsinai.org/health-library/diseases-conditions/aspiration-pneumonia When I left the hospital in January my X-ray of my lungs…

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After the hospital, leaving the new me…

After the hospital, leaving the new me…

I’ve managed to stay home since my last hospital release on March 5th. Please forgive my silence, it has taken me a while to adjust to the new me. I came home and I was still running low grade fevers up until recently. I’d wake up feeling achy most days. It is hard to try to work on strengthening your body when you feel yucky. I truthfully couldn’t get my head in the right space. I know all the positivity…

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