I’m So Tired of Living With Progressive MS
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It is not in my nature to say I’m tired, but once in a while, I allow myself the healthy way out and acknowledge what is really happening. The truth is that sometimes my “oomph” runs out, and I look for energy that I don’t really have to do simple tasks.
Once I moved on from the relapsing-remitting portion of my 38-year journey with multiple sclerosis (MS), I entered the progressive stage, where everything slows down. Not only did my physicality take a hit, so did everything else, including my attitude. I never thought my attitude would change. I always considered myself a fighter. Somehow multiple sclerosis is winning now. Let me give you an example of what I mean.
Accepting Help Is One Way I Cope With My Limitations
Something as simple as getting out of bed is not easy anymore. I use strategies that have been taught to me, but all in all, my problems begin with getting up in the morning. I wake up and take stock of what is working and how; it gets sad because I’m working with half a body. My partner, David, is always there to help me sit up in bed and then help me go to the toilet if I need assistance.
I took a fall trying to independently transfer into my chair from the bed. I became so scared that now someone has to always be there when I transfer. I consider this fear to be very normal. I confronted the fear by accepting help and not being combative. Actually, I accept help whenever it is offered to me. The way I see it, I need to be healthy and comfortable, but not go overboard. By that I mean, not trying to challenge or outdo myself.
One solution I see that is costly is getting an adjustable bed with a remote control that would sit me up. That would eliminate the struggle to sit up on my own. I have worked very hard with my physical therapist on strengthening my core muscles — noble on both our ends — but it just seems like too much work for a possible good result. I am playing with the deck stacked against me.
My Energy Level Is Unpredictable
Everything I do — I mean everything, from transfers to simple movements — depends on whether I have energy. If I have energy, it’s a good day; if I don’t, it’s a bad day.
I am just tired of everything depending on some mysterious “something.” How in the world am I supposed to live my life this way? All this is unpredictable and tiring.
Going to the bathroom should not be a huge deal. I have to pull up on the bars, get my balance just right, then hope I end up on the toilet seat in the best possible way so that I can get back up with the bars and expend enormous effort getting my pants and underwear back on. I just don’t have the luxury of being able to stand. I have to do this multiple times a day. I am just tired of having to go through this.
If I have to go out, it is rarely for fun. As things have turned out this coming week, I have to go out three times, twice for appointments and once for fun. The fun part is my partner, David’s birthday dinner. Since I cannot plan, I can only hope for a good day. The chips will fall where they may! I just have to put my best foot forward.
I Have an Ally in My Certified Nursing Assistant
I have an ally in my getting showered, dressed, and ready three times a week. A privately hired certified nursing assistant (CNA) comes in and helps me with tasks I cannot do without losing all my energy. We have bonded well, as she understands me and my needs.
My sense of independence has diminished, and I look to others for help. Please don’t get me wrong: I am still independent-minded, but I have to pick and choose my tasks. It is only smart that way. Now I am very open to others helping me when I need help.
Victoria, my CNA angel, calls me her easiest “resident,” probably because I am not struggling with dementia and can communicate my needs clearly. She understands my situation and never makes me feel like a burden. It is rare to find someone like her, and I am thankful.
David and I provide a clean, friendly, and comfortable environment for her to be in. She makes it so that I am not tired all the time. After my shower, she insists on my lying on the bed so she can exercise my legs in the way physical therapy has instructed her. After exercising, she plays a meditation app so I can relax. I look forward to her being in my life. She has a hard job but does it well.
Assistive Devices and Therapists Make Life a Little Easier
The changes coming down the pike include getting a new wheelchair through Medicare and my adjustable bed. In my world, these are huge things that will change my life. Other changes include the therapists in my life.
The speech therapist is one of my favorite people. She doesn’t stay long, but what she says is gold in terms of strategies and ways to handle myself. I am thankful for all the therapists in my life. I know that this is their job, and bureaucracy aside, I feel like they really have my back.
All this makes feeling tired a little easier.
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