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I don't know where I am anymore.

Hi All. Am very confused as I don’t know where I am anymore, I just can’t be bothered doing anything nowadays as I don’t have the energy or can be bothered doing it. Anyone else get or got this ? As am not allowed back to work my days are an bit like groundhog days, more or less the same everyday. If my wife is working I won’t go out, if she is not working we go out a bit then I have to come home tired and go bed. The other day I could not go out to a family meal due to tireness my wife went alone I felt like I let her down this is not the first time I could not go out with her to something. I thought I was coming to terms with this illness it’s been a year now but it seems ave still not adapted to it, I need a challenge but am scared I would not be able to do it & let folk down, if I did let folk down this would put me further down. Am just very confused these days. Stephen.

Morning Stephen, so sorry you’re having a bad time of it, I was DX 5.5yrs ago and I’m still getting used to it, I bet people on here who have it longer will probably say the same, I can understand you not wanting to let people down, again I think we all feel the same, so for me after a lot of trail and error got involved with my local society, I’m a support volunteer, now I don’t have to do alot, and if I’m not up for it they understand, because most on the people in the society have MS, we also meet up twice a month, one time is for lunch, which I don’t go to because I’m always too tired then, and then we have a coffee morning from 10 until12, now that time is better for me, we arrange days out, why not look at something like this, just something to get you out, have something else to talk about other than MS, you’re still very much in the early stages, small steps that’s all you can do, all the best to you, and take care, Jean

Sorry things are so difficult, Stephen. I agree with Jean that the coming to terms business takes time, and the ebbs and flows of MS mean that the magnitude of the task ebbs and flows as well. Coming to terms if always work-in-progress, I think.

One of the things my counsellor kept saying to me was, ‘Do things for their own sake, not because they are part of a journey towards an objective.’ I think what she was trying to say was, get away from being goal-focussed - it’s the road to no-town when you have MS. Do stuff because it’s nice now. Study music, or history, or cooking, or any new or existing skill because it gives you interest and pleasure right now, not because you are aiming to advance your career/earn a qualification/see the world/succeed in the world’s terms. If a thing is worth doing at all, it is worth doing because it gives you a fulfilling and absorbing hour or two, when you might otherwise have been sitting regretting all those things you can’t do.

It’s all a good idea. I have to say that, for me, this is work-in-progress too!

Good luck.

Alison

x

Hi Jean & Alison. Thanks for your replies, ave been in bed all morning hence me getting to this now. I will take on board what both of you’ve have said, am not sure if I could do either just now as I seem to be having a bad time lately am not sure if it’s a relapse of some sort or just heavy tiredness since am new to this, I will see how things pan out then move on hopefully. Thanks. Stephen.

Hi Stephen,

Baby Steps.

Fatigue is very hard to get to grips with. It robs you of the inclination to do anything as well as the ability. Often I know that I am bored and fed up but lack the will to do anything about it.

After many years of this I have found some things that work for me. For example I don’t have the concentration to read anymore so I listen to audio books. It’s very relaxing and soo much better than sitting doing nothing. (I prefer it to TV these days)

I know exactly what you mean about “Groundhog days” – when you don’t work it is easy to let this happen. I’m trying to get a small (different) activity everyday – not always something exciting. Thursdays is Sainsbury delivery day (Wow!) and I am going to book a journey on the access bus on a Monday.
I take the dog out everyday and sometimes that is all I do but at least it’s something.

I’m sure that your wife does not feel that you have let her down by being too tired to go to an event. Strength of will cannot overcome MS fatigue: it is not a weakness of character or a sign of laziness. When I am too tired to do something no amount of wishing can alter that fact.

Jane

Hi Jane.

Thanks for the reply, You know i cried reading your reply, am not sure why, I suppose this might be starting to hit me, as I never bothered about having this illness I just shrugged it off and said “I will manage” I don’t think I was.

Anyway thanks to everyone who took time out to reply, I have and will try and take something on board from all your replies.

Thanks Again.

Stephen.

This reply is for ‘Jane’ (the district nurse). I have heard this story before - I have had MS for ~14 years and have not come to any conclusion! My GP will admit that he does not know either and he has a father with MS (He admitted to me that he himself may be a likely candidate for MS in the future).

I want to know what it is, in my lifetime (I’m 55), and whether there will ever be a cure for MS?

Marcus.