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Tag: ms accommodation

Busy Day

Busy Day

I’m actually writing this on Thursday evening. I had a long day. Since the change in my aides shifts, I am up at 7am. This morning I was up at 5. I had one of those MS symptoms that plague me whenever it is a inconvenient time. My feet were in pain. More like my heels. I felt like pins were simultaneously sticking into both my heels at the same time. Neuropathy. I know it well, but this time it…

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My own discouragement rant

My own discouragement rant

I was determined to get into my comfy chair. Ok getting in isn’t the problem, it’s getting out. The chair is not only low but mushy. I don’t have anything very solid to push myself up to a standing position. I tried to angle the wheelchair in front of me, using the chair’s arms. Unfortunately, that didn’t help either. The end result was being lifted up by both my physical therapist and the aide. I was discouraged. Getting into, excuse…

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A week off

A week off

I’m not grey anymore. My daughter dyed my hair yesterday. A grueling experience. Not because of her, but I had to sit in my wheelchair for an hour. I have been really tired this week. On Monday I wrote I blogged I wasn’t having any reactions to my Rituxan infusion. Today I have to admit I might be having a reaction to my Rituxan infusion. I am definitely feeling run down. What is really worse is my hands. I’m not…

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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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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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Not a happy New Year

Not a happy New Year

Hello everyone, Happy New Year. I know it seems like I disappeared but unfortunately I had legitimate reasons. I ended up in the hospital last Thursday with Covid and a UTI. It wasn’t really the Covid that put me in the hospital it was the combination of the two infections. I was so weak I was having difficulty sending a text message. I spent New Year’s Eve sleeping in a hospital bed. So much for 2022 being my year. I…

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Who am I without multiple sclerosis?

Who am I without multiple sclerosis?

I was thinking the other day, what if there was a magic pill to cure multiple sclerosis? What if I can take something that not only stops future disability but cures current disability? What if tomorrow I could actually walk again? I have spent half my life with MS. It is part of my identity, even though I pretend it isn’t. Who am I without my disease? I have this recurring dream that I’m working but still collecting disability. In…

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How do you feel?

How do you feel?

I had a really good birthday day. I woke in a very cheery. I just stayed that way all day. How could I not? Every second I was either on the phone with someone wishing me the best or answering a text. I felt so loved. I was exhausted by the end of the evening from talking. However, I just felt enveloped in a gigantic heart bubble. It was pretty amazing. Worth turning 50. On Tuesday, my aide was off…

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