Hello
I have RRMS and i’m only in the early days of this. Recently diagnosed and currently riding through my 2nd Relapse - my first one was 2 years ago.
I have been off work for 2 months… the first time had me off work for 6 months!! and i dont get one or two symptoms, i get a list of them.
I’m in my mid-twenties and im just full of fear and worries. I’m a natural born worrier anyway (so that doesnt help)
I’m afraid of how this will progress, i’m worried about these relapses lasting so long, loosing my job and my house, i’m afraid i’ll be told i cant drive anymore,i’m afraid of never meeting ‘the one’ and if i do what he will think when i tell him about this MS, i’m afraid i will never be able to start a family of my own, i’m afraid about the future and the very good possibilty of this progressing to secondary and my quality of life as i age…
I know i should live life in the moment and too the fullest, and i do try but i just cant help these fears and worries popping into my head and the feeling of being so helpless to do anything about my future to try and help myself. I just feel like i could sleep forever at the moment, i’m so sick of being constantly tired and dozing off… im only in my mid twenties!!
Since my relapses last so long, and i couldnt work and do much of anything - i learnt very quickly who my friends were, turned out hardly non of them. heard of 1 or 2 in the past few months!! Oh well.
Sorry for posting this one as Anon - just in this case feel like i should.
Sorry about the rant, but i needed to vent and try and clear my mind.
any tips, advice - anything much welcomed.
xx
The good news is that how you are feeling is completely normal: the bad news is that there are no easy answers.
But there are some answers, or at least there are ways of helping us to do that living-in-the-present business that you rightly identify as important, and of living with the epidemic levels of uncertainty that are the lot of an MSer. For instance, counselling has helped many of us, me included. Another thing that helps is time - we just find ways of dealing with things when we are used to having to deal with them.
But it is just tough: no doubt about it. I got away fairly lightly in the early years of my MS because my early relapses did not generally affect the parts of me that I do work with, so I didn’t need much in the way of time off, and of course work is perfect for taking one’s mind off things, so I did not have the long stretches of time to worry in that you are faced with. I worried plenty nevertheless! So I really feel for you, having so much opportunity to contemplate your situation. If there is anything nice you can do by way of a hobby or learning opportunity that can keep your brain happily occupied withough exhausting you too much, that would be worth doing. Listening to an audio French course or something - the kind of thing where some of it is actually going in even if you do not feel that it is? Another thing that keeps me sane these days if I am under the cosh with fatigue and/or my eyes are not working too well is audio-books and podcasts. There is a world of interesting stuff out there, and you can spend as much or as little time as you wish.
One more thing - you will not always feel like this. That, I promise. Even if things are not feeling great right now, you will find a way though and you will recover your usual spirits. We all manage to be ourselves in the end, despite everything!
Alison
do u talk to anyone ,i go to a ms support group,just being with like people is comforting,and everything u are going trough,someone else has ,and u could get great non medical advice
Hello luv.
I understand your fears. I am a worrier too. But my hubby keeps me in check when my thinking goes wild.
But you are in your 20s, when you should be making plans for life…like the majority of the population do.
Thing is, no-one can give you a prognosis…and that`s good, because it could be way wrong!
I am saddened that you have lost friends, but it has shown you that they weren`t as good as they might have been.
If your chosen career/work is proving too much, maybe you could think about reducing your hours or what about a complete change of work?
But as your relapses are so bad, maybe you could think about early retirement on ill health, eh? yes, I know that sounds horrendous at your age.
You need to look after yourself, pace your activities (when they occur whilst you are well enough) and get all the rest you need.
have you got an MS nurse? Perhaps you could talk to her about your fears.
luv Pollx