Forum

Coping

How do you all cope with this all?

I am still in limbo although my Epilepsy neuro thinks ms is very likely. I was feeling better on Wednesday so did loads of washing and ironing and blitzed the bathroom. Yesterday I was tired and a bit off but I went out with my friend. We went to 4 shops and had lunch then today I can hardly move.

The pins and needles are driving me crazy and it's a struggle to put one foot in front of the other. The other thing is my whole body feels like it vibrating, its a wierd feeling.

I used to be fit and active and spent my days running round like a mad thing. Today I couldn't even take my kids to schoolcrying1

I can't imagine this for the rest of my life.

Think everyone copes differently. Personally I have always favoured the ‘ostrich’ approach. Not going to worry about what may or may not happen in the future or dwell on it overly.
Has worked well to this point but mainly I suspect because although my relapses are fairly frequent (6 months roughly) they have been relatively mild. Mostly sensory impairment.
Now however things have worsened and a having a bit of a reality check…hence finding myself here. I luckily have a very good supportive bunch of friends, but they don’t really understand the reality of living it.

Suppose my advice (for what it’s worth) is try not to dwell on the uncertainties of the future and take each day as it comes. There certainly seems to be a good support network here which is always available.
Julia

Its best to take one day at a time,its not easy,but i find it works for me,i used to be ,wonder woman, and could do it all, i used to thrive on my busy life,now i have to be thankful if i have a good day, where i can just about cope  with doing the simple things in life,i find when i have a 'good day' i go mad at things and end up flat on my back for weeks,i get so annoyed with myself,and you would think after all this time (20 years)with MS  i would  have learnt ,BUT i still overdo it,you will find your own unique way of whats good and whats bad for you,but try not to dwell on what you COULD do and focus on what you still can do.

Hi there,

I think part of it is learning to pace yourself more.

Getting a good day is NOT the green light to blitz everything you haven't done for a while: take it steady.

Also, you need to start thinking ahead, and realising NOT to expend loads of energy the day before something important, that you really want to do (like lunch with a friend).

For example, I'm going away this weekend - meeting a friend to see a show.

I know it will be physically tough; however, I really want to do it.

I'm purposely NOT going on a three-mile walk today, or doing a load of keep-fit (which I normally would try), because I know I need to keep my reserves up for the rest of the weekend.

It's like budgeting, but with energy, instead of money.  If you use it all on Friday, you can't expect to have it on Saturday too, so think ahead about what's more important.

Tina

x

Hi, these are all good answers, I pace myself too, but, a bit differently to the others, I don’t suffer from fatigue, my problem is stiffness which varies quite a bit between my best and worst, so when I’m at my best (which isn’t really very good anyway,lol) I do tend to blitz things, the tidying up around the house. Now last week was a good week and the house is fairly up to date, this week is a stiffer week for me so I’m gonna tackle the online shopping today and look on line for some birthday present ideas for my son, nice sitting down jobs.

I also don’t worry about whats going to happen, not unduly anyway.

Also if someone offers to help I get them to do the job that I find most difficult. My mum was visiting this morning so when she asked if I needed any help she did the hoovering which I find a more difficult job and I was left to prepare lunch and tea, which is easy cos I was sitting down.

Cheryl:-)

Thanks for the replies everyone. I'm still trying to adjust to all this and I guess I'm having a self pity day. I just hate being surrounded by mess.

Oh well its nearly the weekend so will get the kids to do it while I direct from the sofa. I draw the line at letting the dogs do the washing up though!