Forum

So fed up?

Just need to vent.

How do long term MS sufferers cope? And I use the term sufferers because it feels that way.

I try to stay positive, (for the kids, the family, but what is the point of any of it?) Every damn moment I can’t ignore the fact that I have active MS. The ants crawling all over me and the painful bits, everywhere. I feel drunk and dizzy all of the time, am forever imagining how I will deteriorate, can’t shake off bad thoughts. Live with fragility, tremors, shakiness, and it is all getting worse every day. I feel as though I am rapidly going down hill and waiting nine months for the diagnosis and still awaiting treatment is frightening too. My most recent visit to the neurologist proved that I failed almost all of the tests that I passed only nine months ago. Every time someone begins a new thread with ‘does anyone suffer from…’, I could answer yes to it all. I have lost who I am, who I was, I was useful and now I am useless.

How do we keep going? And I am so sorry because I know that others have it worse than I do. Much love Ali

Take a deep breath and b.r.e.a.t.h.e…You are and ever have been, Ali and MS won’t change that. You are not what you DO, or how “useful” you can be. (to who?)

Your not useless, you just maybe can’t do stuff you did before, and you WILL find new ways of doing new stuff. Hang on in there…

Oh Ali. You’re perfectly entitled to have a dose of the miseries! I have them occasionally too, as do most people I expect. We’ve had this shi**ty disease foisted upon us, without as much as a by your leave. In my case, diagnosed in a weekend, without any warning. My ppms is very active. More active than me actually. Trying to turn off the bad thoughts is like trying to stop the tides. I allow myself five minutes or half an hour, to have these bad, scary thoughts. No more. Time’s up. End of. Then I have to make a concious effort to occupy my mind, be it crossword or colouring book, TV or coming on here, listening to music or planning /dreaming about my garden for summer or a holiday or break away. Usually it works. Not always. X

You know Ali, you sign nearly everyone of your posts with ‘much love’.

You have become a part of this community, and while you are physically deteriorating, as are many of us, you have given just as much as you’ve taken. You have possibly gained in empathy and fellow feeling. Or maybe you were alwàys this nice!

And as for coping for years, you just do. You basically have no choice.

It’s been 21 years now for me. For the first 10 or so years, I used to describe myself as ‘lucky’, because I wasn’t badly affected. Then I started relapsing and deteriorating both physically and cognitively. I wasn’t able to tolerate a DMD since then and now I’m SP. So there are no more disease altering drugs, just symptomatic relief.

It was over 11 years since I stopped working, 6 since I stopped being able to walk more than a few steps. And probably 4 or 5 since my memory started properly failing (I can’t remember exactly!)

And yet I am still me. I retain a sense of humour (you may have noticed). I haven’t changed personality. I’m still a moany old witch when I want to be. I reserve the right to complain and whinge about MS, my bad luck in getting it, the fact that I can’t walk, etc, etc.

But I have gained a huge amount of empathy that I’m pretty sure I didn’t have. I’ve managed to improve my writing skills rather surprisingly through all the scribbling I do on here. I have probably become a slightly nicer person. Although my good friends assure me that I’m still a nasty minded bi*ch (which is a relief!)

And although your wait for DMDs seems endless, it will come to an end. With luck, you’ll soon see the end of worsening physical condition. You may find that there are still improvements to come. And with drugs and physiotherapy, life will be better.

Sue x