Lonely Disease
I think MS can be a very lonely disease. When you have blurry eyes, tingling feelings or bowel troubles you're the only one who knows about it unless you tell someone. When you're first diagnosed there are counseling clinics where you can talk to counselors and other people newly diagnosed with the disease. Now after 25 years I really don't want to talk with anyone about my disease except my neurologist. I just want to live the rest of my life as simply as I can. I'll probably die in the town that I now call home. One reason I wrote this article is because many people don't know anything about MS. I don't know how many times I've told somebody that I have MS and they've said, "is that the disease Jerry Lewis is trying to cure"? So many people don't know a thing about it and I'm going to try to explain some of the disease as it pertains to me.
I want to emphasize that MS is not a death sentence. I now know though that I’m going to be disabled for a long time. When you think about that it's kind of depressing but a person must go on as best as they can! Unless a person has complications with their MS or has a heart attack or something like that multiple sclerosis won't kill you! It will make your life challenging and difficult at times but it won’t kill you. I consider my MS just a speed bump to what I want to accomplish in my life. It’s taken me 25 years but now I accept my disease and all that goes with it. I live in a great little city where I can ride my scooter everywhere and people will help me if it's needed.
We all have to have dreams. Let me explain something to you so I don't sound too greedy. I don't take vacations, I don't buy fancy sports cars (vans only for me - I have to haul my scooter), I don't wear fancy jewelry or clothes and I wouldn't buy a big mansion if I could. What I would do if I had money is live in comfort knowing that I had a lot of money in the bank. I want to feel secure. MS can make a person feel insecure at times because you don't know what's going to happen to you next. I just want to feel monetarily secure! Looking back on my 25 years with MS the disease has been a great teacher and I’ve learned a lot about myself, the disease and my inner strength.
Scooterjon
Monday, March 6, 2017
How Do You Determine Quality of Life?
The title of my article today is really a good question. Have you figured out your quality of life yet? I have done a lot of soul searching in the past 10 years. Some people might say the quality of my life is not so good anymore. I beg to differ. I have friends, family, my son and my wife which make me happy! Sure, I'm not out partying and going to ball games like I used to but there is always a silver lining. Not doing those things saves me money and what's left of the rest of my health.
Those two little letters (MS) always catch my eye even when they're not related to Multiple Sclerosis. I've had some fun times in the past 10 years but not a lot that I can recall right off the top of my head. I realize that there's always someone worse off than you. I have a friend in town that became blind from diabetes in the past 3 years. He's 63 and not married. He can't go anywhere unless someone picks him up and takes him where he has to go. His 83 year old mother drives 40 miles one way every week to make my friend Jim some sandwiches. She also takes him to his favorite bar so he cans BS with his friends. Because of his diabetes Jim can't walk very well, either. In my opinion Jim is worse off than me because of his blindness/diabetes.
I've always said that I’ll lose the use any body part to MS but I never want to lose my eyesight. An exacerbation is a worsening of my MS symptoms. I've had a couple of exacerbations where one of my eyes was so blurry that I couldn't see anything out of it. Luckily, when it’s happened it's only been in one eye so I still could see with the other one but it can be very scary. I also have a tendency to get headaches when my eyes are blurry. The crazy thing about MS is that you don’t know what is going to happen next. This uncertainty has led me to a decade of anxiety and panic attacks which I’ll talk about in another article and which I still suffer from.
Now for the first time in 10 years I can truly say that I accept my disease. I feel like all the bad stuff has already happened to me and if I can stay at this level I'll be just fine. Life is still GOOD! It sure beats being dead but I've never been dead so I don't know. lol I feel there are no surprises left for me. My eyes have been blurry to the extent of blindness, I can't walk anymore, I've lost control of my bladder and bowels, my cognitive thinking is a little screwed up, I hate heat, I don't sleep well at night and my MS fatigue is as bad as ever.
The good news is that I still have a good attitude. I think I’m more humble and I think I'm nicer to people. Not that I was ever mean to people but I'm more polite, kind, sympathetic, etc. I’ve always had a burning desire to become wealthy but since I became sicker I now think that differently, too. I just want to earn some money. I'm learning to live life as a disabled man. I've always had a great sense of humor but I always thought it was my beer drinking that made me funny. I don't drink anymore and I realize that I'm still pretty funny! To sum it up I'd have to say the quality of my life is still pretty good!
Scooterjon
The title of my article today is really a good question. Have you figured out your quality of life yet? I have done a lot of soul searching in the past 10 years. Some people might say the quality of my life is not so good anymore. I beg to differ. I have friends, family, my son and my wife which make me happy! Sure, I'm not out partying and going to ball games like I used to but there is always a silver lining. Not doing those things saves me money and what's left of the rest of my health.
Those two little letters (MS) always catch my eye even when they're not related to Multiple Sclerosis. I've had some fun times in the past 10 years but not a lot that I can recall right off the top of my head. I realize that there's always someone worse off than you. I have a friend in town that became blind from diabetes in the past 3 years. He's 63 and not married. He can't go anywhere unless someone picks him up and takes him where he has to go. His 83 year old mother drives 40 miles one way every week to make my friend Jim some sandwiches. She also takes him to his favorite bar so he cans BS with his friends. Because of his diabetes Jim can't walk very well, either. In my opinion Jim is worse off than me because of his blindness/diabetes.
I've always said that I’ll lose the use any body part to MS but I never want to lose my eyesight. An exacerbation is a worsening of my MS symptoms. I've had a couple of exacerbations where one of my eyes was so blurry that I couldn't see anything out of it. Luckily, when it’s happened it's only been in one eye so I still could see with the other one but it can be very scary. I also have a tendency to get headaches when my eyes are blurry. The crazy thing about MS is that you don’t know what is going to happen next. This uncertainty has led me to a decade of anxiety and panic attacks which I’ll talk about in another article and which I still suffer from.
Now for the first time in 10 years I can truly say that I accept my disease. I feel like all the bad stuff has already happened to me and if I can stay at this level I'll be just fine. Life is still GOOD! It sure beats being dead but I've never been dead so I don't know. lol I feel there are no surprises left for me. My eyes have been blurry to the extent of blindness, I can't walk anymore, I've lost control of my bladder and bowels, my cognitive thinking is a little screwed up, I hate heat, I don't sleep well at night and my MS fatigue is as bad as ever.
The good news is that I still have a good attitude. I think I’m more humble and I think I'm nicer to people. Not that I was ever mean to people but I'm more polite, kind, sympathetic, etc. I’ve always had a burning desire to become wealthy but since I became sicker I now think that differently, too. I just want to earn some money. I'm learning to live life as a disabled man. I've always had a great sense of humor but I always thought it was my beer drinking that made me funny. I don't drink anymore and I realize that I'm still pretty funny! To sum it up I'd have to say the quality of my life is still pretty good!
Scooterjon
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