Don’t let multiple sclerosis hold you back

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I started a new home improvement project. My garage door needs new weatherstripping across the top and sides of the door. I researched the products I need and decided the cost is actually fairly low if I do it myself so I bought all the wood and screws needed.

Yesterday I started the first step in replacing the old weatherstripping. I bought four 1×3 boards that needed to be cut down to 1×2’s. I discovered in order to have a board exactly 1×2 I would have to cut them down myself. I laid the boards out in my backyard so I could use my circular saw to cut them down. I don’t have a fancy setup to hold the boards steady while I cut.

The bad thing is that my legs have problems maintaining my balance even while sitting. I set up a folding chair for me to sit in while I cut the boards, but I had trouble keeping the cut straight while I was working to balance myself. While I used the saw my legs kept slipping and I came close multiple times to falling over. My leg muscles are just very, very weak.

It was such a struggle. I was able to cut the 8 foot long boards about 12 inches at a time. I had to keep shifting the board down to keep on cutting the full length of the board. It took me so much longer than planned. After a pile of sawdust formed I had finished cutting them down. I felt so proud of myself. Next week I’m going to paint them white and a friend is going to come over to help me hang them around the garage door.

So far I feel so accomplished. I know there’s still a lot to do, but for me cutting the boards was the hardest part. I still have to pull the old boards off and sand the old wood before I can attached the new wood in the opening.

I think I make things hard for myself but I feel so good knowing that I am able to accomplish something myself. That’s the stubborn part of me. I have saved over $300 that I don’t have because I’m doing it myself. Multiple sclerosis has made it difficult, but not impossible. It’s almost like I have a challenge set before me and I have to prove to myself that I’m still capable. If I can’t do it, I will throw my hands up and surrender but I want to at least try before I give up.

Giving up like that does happen but so far I have been able to push through many challenges that MS has brought along. Falling over is not something I want to happen. It seems like such a small thing but it’s actually quite big. The time it takes for me to complete the project will take longer than it would have if I was stronger, but even the time delay is not going to hold me back.

Some of the most difficult things for me is doing anything that requires a steady hand. I can guarantee you that in your trying you are going to feel like a failure at some point…maybe even more than once or twice. But choose to be like Thomas Edison at those times. During his work on the lightbulb, he said “I have not failed 10,000 times. I have not failed once. I have succeeded in proving that those 10,000 ways will not work. When I have eliminated the ways that will not work, I will find the way that will work.”

You will find a way that works too! Whether you find a better way to improve your life or a new way to do something that others tell you (or even you tell yourself) can’t be done, keep trying. Don’t give up on living. Don’t give up trying. Don’t give up no matter how impossible or difficult things may get. Just don’t give up. You will find a way that works for you.

MS bizarre happenings

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Sometimes I do things so strange that blaming it on multiple sclerosis isn’t even fair. Last year I came close to having a bathroom accident trying to make it to the toilet in time before an explosion wiped me out. When I got to the bathroom I barely had enough time to pull my pants down, quickly lift the toilet seat cover, and transfer to the toilet. I didn’t notice anything odd until I pushed the knob to flush the toilet and I could feel water gushing past my bum.

Well I did it again. I discovered that when I lifted the toilet seat cover I actually lifted the seat along with it so I was sitting on the edge of the toilet bowl itself. I came so close to actually falling in the bowl. After a quick shower and a giggle at the absurdity of the event, I replayed what I had done. Out of everything that had happened I blame my right hand for it all. My right hand is more of a paperweight than something of use so when I had lifted the cover I wasn’t paying attention to what I was doing. The motion of lifting something was all that mattered in the moment.

Will this happen again? Probably.
How can I avoid it? Keep the cover lifted all the time.
With the cover lifted, will my dog make more of a mess than I did? Probably.
Which mess do I want to deal with? I still haven’t determined the answer to that question.

Sometimes bizarre things happen with MS just because it exists. After all, we live with a strange, unpredictable disease. The strangest symptoms I’ve dealt with include:

  1. Feeling of an internal earthquake taking place inside my body.
  2. Experiencing ringing in my ears that sometimes is louder than a crowd at a ball game.
  3. Feeling as if water is dripping on me when I’m no where near a faucet.
  4. The unrelenting crushing feeling of the MS hug which is more like a tight girdle wrapped around the rib cage.
  5. Feeling as if food is stuck in my throat when I haven’t eaten anything.
  6. Involuntary movements of my body like me accidentally kicking the doctor.
  7. Abnormal sensations on my skin such as burning, pins and needles, and even itching that nothing seems to be able to alleviate.
  8. Feeling an electrical shock sensation through my arms and legs when I tilt my neck downward.
  9. Feelings of dizziness and being off-balance which accompanies nausea.
  10. Experiencing emotional incontinence which brings on uncontrollable laughter or tears.
  11. Dealing with 3-D illusions like when an object is moving straight towards you but it appears to be swerving and shifting in its path.

It’s necessary for a person on a journey with MS to be able to recognize why coping with their illness is difficult. Knowing these things can help ease the burden, even if only for a little while. You got this.

 

Navigating the world of multiple sclerosis

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I’m in need of a multiple sclerosis GPS. It’s a device that gives you clear directions on how to navigate the unknown world of MS, if that’s even possible, but it’s so unknown that even the GPS gets lost so I’m not sure how that will end up working out.

Not only will it tell me how to get there when I enter my destination, it will remind me why I went there in the first place. You have no idea how often that happens. I will circle the kitchen looking for something but forget why I even went in there to begin with. So frustrating. It’s an opportunity for me to just go back to bed. I need a nap after everything strenuous I do and thinking is strenuous.

At least I can have it turn on closed captioning to get written words with all the conversations I engage in. I use it while watching TV because many times spoken words don’t make much sense to me and having something to help me understand what’s being said really helps. I noticed that I tend to lip read even in real conversation with others… it helps.

An MS GPS will help me find the nearest bathroom when I need to go. Yeah! The only bad thing is that sometimes it doesn’t get me there fast enough to get my pants down and accidents happen. Just yesterday I pooped in my pants because I could get them down fast enough. At least the shower was right there and I was able to clean up quickly without too much trouble.

In the future, an MS GPS will be able to predict falls which would be so revolutionary. Ex. In 2 paces you will fall… so don’t go there. Rerouting. Don’t go there either. Rerouting, rerouting, rerouting…

Falls are predicted everywhere. The bad thing is that I went there and met the floor first hand. It’s just a lonely and unappreciated surface of the world so we hung out and I showed it some love.

Since my brain sends mixed up signals I think an MS GPS would be whacked-out. Oh, the wacky places we would go. Sometimes I just don’t know what I’m doing and at least we can not-know together.

If and MS GPS systems will make my work more productive, safer, and easier… good luck with that. MS has already robbed my brain of those capabilities.