Multiple Sclerosis is not an Easy Disease

Multiple Sclerosis is not an Easy Disease

Happy Friday. I feel like this week went super fast. I didn’t do much. I fell again this week. This marks the fourth fall in 3 weeks. I am having trouble with transferring from my bed to my wheelchair or wheelchair to my bed. Most other the falls have happened with aides that were new to me. They either didn’t have good enough English to understand what I was saying or they really couldn’t do what I needed. However, the real fault was in my legs. I didn’t have the strength to pivot. Actually it isn’t just the pivot, it is the step or two I need to take. My right leg, normally my stronger leg, hyperextendeds and I can’t bend it to take that step. Sometimes my leg is locked in that position and my aide helps me move my leg. However, I know that if they move the wrong leg or they move it to fast, I could loose balance and fall down. I am usual prepared for that. That isn’t what is happening. My legs are going out from under me. I don’t have the strength to push myself up to a standing position. If we can’t get my butt back to either the bed or the wheelchair, down I have to go. Once on the floor , I am basically helpless. I have had one lucky instance where I had 2 aides helping my body get back to the front of the wheelchair. I was able to use the wheelchair and aides help to stand up the way I use to do before I got worse this year. That trick, unfortunately, doesn’t usually work anymore. I can’t usually get into the position I need to even with help. I can’t hold on to the wheelchair while it raises up like I used to. I can’t even stand for long enough to pivot around to sit. I am so weak now. I feel useless. It is a horrible feeling.

I called the agency. I spoke to them previously about one of the aides. I fell with her because she is 6 months pregnant. She can’t help me transfer. I don’t feel safe getting out of bed when she is here. For good reason. The time I fell it was when my mom and stepdad were over. Thankfully they were. They got me back onto the bed, not the aide. Yet the next week she was here. It was the week my daughter was home. I still didn’t get out of bed for fear of falling. I was always making the call to the agency. Then the incident happened yesterday. This was with my regular aide. I had to get help to get me off the floor. I called my maintenance guy in the building.

When I called the agency I decided to inform them of the other two times I fell. The other times were also with new aides. They had no idea how to help transfer me. I have a hoyer in the house. The aides are supposed to be trained how to use them. None of them are. I shouldn’t have to call my Maitenance guy to pick me up. The hoyer can lift me easily without hurting me or them. The agency was as they always are, slightly concerned yet without promise of change. They said they’d do an imservice on using a hoyer. I said that my regular aides should get a lesson how to use MY hoyer. Wouldn’t that make more sense? Plus isn’t using a hoyer and transferring a patient in your in service already? Please, even those questions get a runaround answer. My concern over the pregnant aide also got a run around answer. It is very frustrating. I need to at least feel safe when I get up. I can’t stay in bed over fear of falling. I usually know when I’m not strong. I am able to communicate what I need to an aide who understands what I say. Unfortunately the aide who is 6 months pregnant also doesn’t understand much English. My normal aide yesterday, whom I fell with, also doesn’t understand English but she and I have been together for a while. We have created a communication that usually works, yesterday it failed.

I don’t like that I’ve felt weaker again. I don’t like that I’ve needed so much help transferring. I do need help often. I’m writing about the falls but there are many successful helped transfers. I wrap my arms around my aide’s neck and the lift me from chair to bed. My legs do whatever assistance they can do. All my regular aides do this. Except yesterday, we usually have very little issue. I’ve been needing their assistance often, too often. Sometimes I let them feed the dogs at 4pm for fear of getting in and out of bed. I know it’s been getting harder. I also know it’s January which means I can do physical therapy again. I’m just not looking forward to the exhaustion of that. MS is not an easy disease.

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