Just got into a long heated discussion with my insurance company regarding medical equipment that I need, that was prescribed by my neurologist. Turns out Medicare does not cover shower seats, chairlifts, recliner type chairs that turn into a bed, because it’s not a medical necessity. So now, I must fight and figure out how to purchase a $1500 medical related type chair/recliner that lifts, without having to struggle to get up because my legs do not cooperate. United Healthcare just said to me, just get a hospital bed that will solve your problem. What’s interesting about this whole thing is I can’t even lift my legs to get in and out of the bad, to get up or go to the bathroom fast enough without having an accident. So how is the insurance company’s suggestion effective?
Category: Multiple Sclerosis
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Taking Life for Granted
I think we take life for granted. I know I did. Years of seeing people in wheelchairs, senior citizens struggling to get food from their scooters or trying to find a handicap parking spot, watching people become agitated waving at handicap people impatiently out of the way, because their time has been interrupted by someone struggling to cross the sidewalk or walkways, and even family, partners and friends change.
Today, I’m in this very same situation. I cannot go far without help. I am now at the mercy of others to see if I can get a ride, go food shopping, get a couple of loads of laundry done, and the opportunity just to get out into a different environment. I must schedule, plan, ask, pay, push my pride, dignity, independence aside, and learn patience to wait just to get the simple everyday things done and the things we’ve taken for granted.
If I had the chance to go back and live my life over, things that happened in the last twenty-five years would definitely be planned differently.
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Comparing Diseases
Typical day: I know that people mean well and they tried to understand what I go through every day, but there is no comparison with multiple sclerosis. People who have been diagnosed with multiple sclerosis have different symptoms there are some that are similar, and there are some that no one had ever experienced.
To compare a disability, handicap, chronic illness and paralysis is not something that we take very lightly. What I go through every day is not something people understand and it does not feel great when other people compare themselves to me. It makes me angry sometimes because this is with me every day, and when someone has broken or sprained their leg or ankle, they go out of their way to tell me, yeah I know exactly how you feel when they don’t. Today is a hard day because I am still suffering from brain fog and burning eyes from my classes last week. I look like I smoked a lot of joints which I didn’t, but that’s what I look like. I’m still here and kicking some MS butt!
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Showering
Typical Day: Showering used to be one of my favorite things to do and always took for granted that I would never ever go a day without showering. These days, I’m grateful I can take a shower once a week, sometimes a week and half. My MS does not allow me the luxury of showering often. I depend on body wipes, hair accessories, Gold Medal powder, and deodorant, often because taking a shower is difficult.
Biggest obstacle: climbing over the bathtub. It’s a mountain. It takes me almost a full 5 minutes just to get in the tub on a good day. My left leg locks to the point I have to drag it over the bathtub wall and position my feet so that I do not slip and fall. Water temperature is another thing. I used to love taking long hot showers. Today, it’s lukewarm water, wash and condition hair, soap to clean the body, rinse and get out asap. There is no time to stand there and enjoy. I’ve been lucky that I have not had the need for assistance with another human being to get out of the shower. I dread that day.
When I am done showering, my body feels like a rubbery mess. I have to sit down on a chair or the toilet seat shivering to dry off and struggle to get my clothes on. This takes a good 10 to 15 minutes of struggling, cursing and wanting to rip my clothes just to get the clothes on. I am trying to lift my left leg to get inside my shorts or pants, my left foot just sits there. Then I need to grab the bars to get up and put the rest of my clothes on when I am hunched over because I no longer have support to hold my body upright. Sighs of relief once I am done with that. Then, we have the hair. Combing out my hair, adding hair products because I have this uncontrollable frizzy mess, then the final hot blow dryer that makes my body hotter.
Now, I need to get from the bathroom to my recliner. My left leg is no longer working it drags on a wood floor and I hobble about 10 feet to the chair that takes a good 5 minutes. I want to cry, but I keep pushing. I sit down and breathe. I am now stuck in the chair for a good 3 to 4 hours to build up strength to walk around with my walker.
I think about this as I am writing and applaud that I have once again am kicking some major MS Butt!
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Sensory Overload
Typical Day: My sensory overload. My MS affects my sensory overload on a daily basis. Sometimes the noise from my cell phone, text alerts, the beeping, the vibrating of the calls, video phone ringing and bright lights just makes me feel overwhelmed and my brain cannot process everything. Sometimes people text, text, text instead of just one text (all the information on one text) drives me insane. Even turning on the lights makes me cringe. I love watching tv in the dark. It calms my feelings and my brain can finally relax.
When I go out to the grocery store, restaurants, social events or even attend workshops I become overwhelmed by the sounds, people talking to me, pulling me in every direction. My brain starts to spin. I have to look away to communicate and process what I can see. I don’t wear my hearing aid often, I can’t stand the sounds some days. The noise vibrates through my head and I cannot grasp what I am seeing or hearing. Sometimes I feel like I am going insane. The buzzing in the ears start, my body becomes all hot and inflamed, my hands cannot sign or type, everything becomes wavy. Some people accuse me of not remembering things and often use the memory issues as a way to prove a point or win an argument.
But once I am able to do down time, I can process the information and remember again. Sometimes. Still a warrior and kicking some MS butt!
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Daily Struggles
Typical day: the impossibles every moment of my day and yet somehow as the sun goes down, I always make it. When laying in my recliner, feeling beat up, worn out, battered and bruised, taking a minute to look back over the day, I realize that the my inner warrior kicked some major MS butt.
💪I pushed through my day with my legs and hands cramping up, tingling, hot/cold sensations while my head is buzzing, spinning and feeling lopsided. I feel like I’m on a high speed roller coaster ride. Oh, and then trying to speed dash with one leg dragging sometimes leg locking to the bathroom…well, almost. But I’m so thankful it’s not a major mess and I have a change of clothes in the bathroom, and no one even noticed that before I was wearing a pair of black shorts instead of the blue jean ones I’m wearing now.As the day progresses I keep trying to sign, type, study, work, think, feed the cats, cook, but struggle making mistake after mistake. It takes great skill to stumble over words then turn them into something that makes sense. I have gotten pretty good at word replacement and hand gestures signing you know, you know. I’ve become an expert in judging if I can grab the next available piece of furniture, the wall, towel bar, or counter so I don’t fall.
MS and My Life 