Survey on Adjustment to Multiple Sclerosis

If it's on your mind and it has to do with multiple sclerosis in any way, post it here.

Postby robbie » Thu Jul 12, 2007 9:22 am

When I have to use my chair (anywhere but my house) I really wonder how far this will go, I wonder what has happened, I think this is not what I want, I think I’m just not sure I can be happy with 30 or whatever more years of this, I think of the progression that is going to happen and how I will deal with that. I have dealt with it so far but there’s always that thought of it getting too much? I think about what could have been, I think that I should just stop whining because of the people worse off. Some people can deal with extreme disability but not me, I’m not even sure where the line will be but it’s out there and sometimes it scares me. It’s not that I want to deal with this either I want the life I had back and anything short of that just won’t work, so I’m not sure where that leaves me but like I always say only time. But to answer your question I guess about a 7 or 8, 10 being the line that scares me. You know I even feel guilty writing this because I know there will be people reading this that are worse and for that I am sorry.
Had ms for over 19 years now.
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Postby TwistedHelix » Thu Jul 12, 2007 11:19 am

Hello Robbie,
I can only speak for myself but I would never want you to feel as if you had to apologise for what you've just said: you just expressed beautifully some of the fear and anxiety we all feel some of the time, most of the time, or all the time.
As I've said before, MS is so much more than just a bunch of faulty wiring making a few things go wrong: it can devastate the entire lives of REAL people and the emotional impact can be catastrophic. Not knowing what the future holds just multiplies our problems tenfold.
I was in rehab a little while back in a place where most of the residents had either had a stroke or car crash. One day, I was sitting in my room crying my eyes out because, after years of struggling alone to try and carry on, I felt I had reached the end and that I would have to go into an old people's home. A very unsympathetic male nurse came in and couldn't work out what I was upset about: he told me that the other patients had had their lives turned upside down overnight, and that I was lucky because I've had 20 years to get used to it!
I tried to explain to him that you can NEVER get used to it because it's the equivalent of having a car crash every few weeks – you might just begin to get used to the loss of a bit of function or feeling, but before you finish adjusting to one thing and mourn the loss of part of your life, another problem has already started to rear its head. I don't think he ever did understand.
So don't feel bad about feeling bad, Robbie: there is no rule that says you have to hold your tongue just because someone else may be worse off than you. There are plenty of people worse off than me, but that doesn't exactly make me happy to have my problems: it doesn't work like that!
Stay angry and give 'em hell Robbie!
Dom
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Postby Lyon » Thu Jul 12, 2007 12:32 pm

WOW! I sure wish that someone other than people with MS would read this site! I figure I'm about as sympathetic as anyone, regarding what people with MS put up with, but this has been a learning experience. Obviously anyone knows that they don't want MS and to experience loss of function but I'm starting to understand that I didn't know the half of it.

Earlier the term "chronic sorrow" made me consider that it's thought that some people experience middle age grief for their lost youth.........actual grief as if a love one had died, and I'm inclined to think that what you guys are talking about something similar, only a lot worse.......and like Dom mentioned, it's ongoing, in fact constantly getting worse and you never get used to it or comfortable with it.

I suppose everyone is similar in that daydreaming has always been a big part of my life. If I'm doing something I don't like, I daydream that I'm somewhere else doing something a lot more fun. Bolstering those daydreams is the fact that, if I wanted to badly enough, I really could be running on the beach or flying a kite........sure, the Jessica Simpson daydreams may be a little far fetched, but if she was willing, I'd be able.

The point is that EVERYONE needs daydreams to keep them sane, but if you're disabled, what bolsters your daydreams? I think that would be the worst part for me is having my daydreams turned to lies.

Bob
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Postby Loobie » Thu Jul 12, 2007 1:37 pm

I emailed Konstantina and got a nice reply back from her. I basically thanked her for putting effort into trying to define the issues that we all go through even before we are severely disabled. Until you rack up some significant disability, the EDSS is like using a sledge to drive a needle into a board (at least that's the analogy I used when I corresponded with her).

I often feel the same as Robbie in that I feel guilty for whining when I can still work out (albeit at a greatly reduced intensity than a year ago) and know there are others struggling much, much worse, but I also know that everything is relative to the situation you find yourself in. Figuring out how I am going to be joyous in life is one of my biggest challenges. I was an absolute life lover before all of this and now I'm just not. I still have moments when I can cut up and be the "old Lew", but they are becoming more fleeting.

The thing that keeps me going is my family. I'm still, after 14 years, madly in love with my wife (my kids are cool too :lol: ) and that gets me through hard times. I just hope we are not all dead by the time something REALLY effective comes along, because if any group could use a pick me up, it's us damnit!
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Postby AllyB » Sat Jul 21, 2007 2:23 pm

Just done it too. Will be interesting to see the results. Agree with the previous post though, other things that are going on in your life will impact on how you respond to this survery, which may skew the results a little.

Ally
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