Last weekend we drove up to Berlin to celebrate my old Nottingham friend’s 50th. Some of the guys I hadn’t seen for four or five years. This should have been an event that I could really look forward to, and yet I was nervous and apprehensive - most of them hadn’t seen me with a walking stick before, and this was playing on my mind. Of course, when we arrived they were all delighted to see me and the ‘stick’ was soon forgotten with the first beer!
It was the next day that my situation really hit home. Spending the whole day in the hotel, while everyone was out in the sunshine visiting Checkpoint Charlie, and saving my strength for the evening meal together. Despite the three or four hours on the hotel bed, I still felt tired and could hardly move my stiff legs when 19.30 arrived. But once we were in the restaurant I felt great and couldn’t believe it when I looked at may watch and saw the figures 01.00!!
I don’t find myself looking forward to things anymore - in fact I dread it mostly. But when I have managed to get out of the flat and do something, I feel on a high and full of energy. But is this feeling really just an unhealthy ‘done it - it’s out of the way’.
Does anyone else share the same predicament - or is it more a social phobia that I posses!?
Ruchard - I could have written that myself and I bet lots of people will agree with you. Things that used to be a pleasure are now an awful chore, planning any sort of outing is hopeless, though, as you say, you do feel a sense of achievement afterwards if you do manage to get out. I can’t walk further than round the house, and DVLA won’t let me drive cos of eyesight, so if there’s any chance of an outing with anyone, I’d love to take them up on it, but just don’t have the energy to get ready, never mind try to get to the gate. It becomes much easier to turn down any invitation and have no life at all, then you sit around thinking and worrying instead. I don’t think it’s a social phobia. Sociallising, however much we want to do it, is just too tiring and worrying, although other people’s company does take your mind off your problems. I have two cousins visiting tomorrow. I should be looking forward to it, but I’m not, and I know I shall be totally exhausted just with conversing! Sounds mad to anyone else I’m sure, but I’m already wishing it was over. Pre-MS I should have loved to see them. So no - it’s not just you!!
Hi Richard, I would say generally I dread things like that.
Combination of things. I know that I might become suddenly very tired and will have to leave. Even if that doesn’t happen chances are next day I’ll be exhausted and have to spend day in bed. Hate seeing people who knew me before MS and haven’t seen me since as either get the ‘pity’ looks or the ‘embarrassed’ looks.
Of course much of the paranoia about how old freinds respond to the ‘disabled me’ might be just that… paranoia and not real. But I prefer seeing people who have known me since I’ve had MS or friends who I’ve seen a lot over the years and are used to my disability.
On the rare occasions I do go out socially I definitely get the ‘done it’ high afterwards… but even that is exhausting. Anything that makes me high or excited is a killer fatigue-wise.
Given the choice I would much rather spend time with one or two friends. Party days are definitely over!
I feel the same, this weekend 8 of us are celebrating a friends 50th, she’s been my best buddie for over 25yrs, we’re having a small gathering in the afternoon, but I’m dreading it, can’ t wait for it to be over, because we used to do everyting together, her and her then hubbie used to go hoilday every year, nights out, just had great fun, went shopping together, gym, everything, and now, hardly anything, and boy does it hurt, then the weekend after the rest of then are having a big surprise do which me and my hubbie wont be going to because it’s starts at 8pm, oh thats just about my bed time, so yes I can understand, BLDY GREAT isn’t it, but hey ho onwards and upwards, think I’ll get PSED on saturday, take care, Jean x
Going on some of the responses can I ask does anybody find that they really dont have the energy or willingness to talk to people,even family in day to day life,because it just takes too much effort?
Hi Richard. I really do get what you mean. it takes so much effort to do anything these days, that I can see why we wonder if it`s worth that effort. But, it really is, as we must keep trying. Our lives are difficult enough, without losing contact with our friends and experiencing new places and stuff.
When I am going out (usually twice a week), I am excited. I plan what Im going to wear and really look forward to it. There are times when it would be easier to stay in bed and shut the normal` world out…but that would be a waste of life.
Please keep going out, meeting people and loving life. We HAVE to.
i understand what you mean. the friends that are really my husband’s friends are really good fun and they are really caring about me but i can do one maybe two hours and then i’m drained from trying.
a couple of female friends always do me the world of good when i see them. they know the real me (pre ms) and choose places that i will love. they always look out for me without treating me like an invalid. for example if we go to the cinema they always wait until most people have left, i’m so grateful because the lights being dim and standing after sitting makes my legs go haywire.
i feel blessed to know so many great people and blessed by the friendship of those lovely women.
Hi Pip, yes definitely! My family now have the tact to text and ask ‘do you fancy a chat?’.
I find talking a huge effort sometimes and the worst thing is getting half way through a sentence and running out of steam. I sound like a tape going into slow motion. Awful.
I get anxious about going out and then when I get to my destination I’m fine. In my case it’s a mental thing and I don’t know how to overcome it. Last week I planned to go to an aunt’s funeral. As the day approached I was looking for excuses not to go. The day came and I went and I met alot of people I’d not seen for a long time and it may not be something to say after a funeral but I had a good time!
The same thing happens when a group of us go out for a drink - I don’t want to go then I go and enjoy myself. The problem has nothing to do directly with the m.s. it is as I say a mental thing - and frustratingly I don’t know what to dio about it.
Hi, me again. A week or so ago, I posted on the outside looking in. I explained that this is how I often feel, when I can only watch others doing what I used to do and so long to do again…but never will.
Shutting oursleves off from the world will only increase this feeling.
It takes strength and guts to fight it. Sometimes we can, but not at other times.
For a while I dreaded social occassions, not knowing how I would be feeling on that day.
I now have made a big effort to meet up with friends reguarly. Explaining before hand that my MS maybe playing up on that day and I may not be able to make it or if i do, I may not be able to stay long.
Sometimes I leave early, sometimes I make it until the end of the evening.
Whatever the outcome, I feel happy that I have gone and appreciate the people around me.
Whilst I| am not in relapse, I want to socalise. I rest before hand and usually rest for the the whole day after.
We must not let this disease take away those special moments , that prior to diagnosis, we didnt realise were special.
Live life to the full when u can and accept those times that we cant.