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not sure how anyone can help but thanks if you can????

All of a sudden I just want to cry and scream and say ' hmmmmm (this thinking time) why on earth and who on earth and who in the universe. Today I am shocked, hurting, pins and needles are nowhere near the description but hey, I can deal with stuff if I have to. How then do you msers( i can't even type that well) do real life stuff? I have a three year old who is the light of my life, I have a 15 yr old who is him (he also has cererbal palsy and autism)  I have a 19 year old who has a brain injury adhd and autism and also a son who is 25 years old who is fantastic but also has autism (and bi polar)

Sooooo..... what do I do next after a dx? I am  the boss but my annoying body/brain is clearly not doing the right stuff. Karen/Rizzo I was a black belt in taekwondo and now it makes me laugh to even think about such stuff.

Anyone? you have all been in the same place and thank you that i have been able to type it.

jx

 

 

 

That is so much going on for one person that I really dont know what to say.....and me lost for words is a rarity.

Dx is a shock for anyone and takes alot of coming to terms with.I imagine as you have so many dependant people in your life your head is full of what ifs and everything is scrabbling into a huge mush.

Although its easier said than done you need to give yourself time for the shock to pass before even attempting to look at effects on your everyday life

I am relapsing myself at the moment so I will leave  constructive help/advise to others but just to let you know there is a big network of support here.

sorry I cant say more

Pip

I wish there were a simple answer.

I guess we all deal with things differently, depending on who we are, but also what our MS is like and what levels of support and responsibility we have.

I think most of us learn to manage our symptoms better with time and practice. (Getting the right meds, aids and help from people like physios is crucial for this. Asking for help (demanding if necessary) is massively important for this.)

We also tend to get very much better at saying no, being more selfish, prioritising our time, asking for help, etc. This is a fundamental step in learning to manage things - there is absolutely no point in exhausting ourselves doing things that others can do (even if it's not quite as well). 

On a personal level, my strategy for dealing with loss is to adapt; find something new. So each time MS takes something away from me (e.g. taekwondo), I replace it with something that I can still do (e.g. going to the gym - and, believe it or not, I still do a few kicks while I'm there - holding on mind you :-)). That's why I'm on here so much - this is one of the things that I "do" now - it replaced Uni, which is now something that I "used to do". I'm not saying that this process is easy. It's not. I mourn every loss, but at some point I pick myself up and get on with things - after all, life goes on and it's too short to waste.

Not sure if this helps, and I would happily bet that if you asked 10 MSers this, you'd get 10 answers!, so I guess the upshot is that you will find your own way in time. Try and hang in there.

Karen x

Hi Jacqui,
You have dealt with so much in your life with your beloved children and continue to do so! Therefore I think that you are so strong by now that you can deal with yet another problem. You have had more than your fair share but you must have overcome so much on a daily basis.

Keep strong, you can do it!

Thinking of you,

Teresa xx

((((Jacqui you are a lot stronger than you think you are))))

You've coped and got through more than most people do in a lifetime. Overcoming anything is never easy and as others have said we're all different and therefore cope in different ways. You will find a way.

When I was first diagnosed I thought I had it all down pat. I knew beforehand that it was highly likely to be ms so I wasn't exactly shocked. It was some weeks later that the reality of it all set in and I didn't know which way to turn or what to do. But once I started to get my head round things everything changed again. I decided that I wanted to find out as much as I could about ms and do what I could to help myself. I'm lucky that I have a great support network too - which makes an immense difference - plus the meds of course which I couldn't be without!!

I make adjustments to my day - at home and at work - depending on how I feel. I try to concentrate on the things that I can do rather than things that I can't and as Karen has pointed out, prioritising and becoming a little bit selfish - learning how to say 'no' to people and putting myself first for a change. No, it's not easy but it does become easier in time although it may not feel like it at the moment.   

Giving things up - not being able to do the things that we've always been able to do is really hard to accept and that's something I've struggled with. I still do in fact. But then I tell myself that there are loads of other things I can do instead.

I guess in a way it's like a new phase in our lives. A steep learning curve. 

Debbie xx 

 

Hi all,

Just wanted to say thank you so much for all your answers and indeed, for listening to my confused ramblings. My hands and eyes are so much easier today and my head is clearer too. Your answers make SO much sense and thanks for the kind words. I am not strong so much as that I just have to do everything for the kids as they can't do a lot themselves. The hard thing of course too is no way would they grasp much about MS, particularly the 19 year old who has a memory problem too so if he could understand he would forget again 10 minutes later! confused

I don't have anyone else that can help but I can be grateful for the fact that this is actually only 'mild' and mainly sensory and arm problems which are infinately easier to make adjustments around than if it were my legs that were severely affected. That being said, I am getting quite good at shouting orders from the couch! I can't go out much anyway as the boys need full time care....at least that is my excuse for not going to the gym happy2

Thanks once again. You are really all an inspiration.

J x

No Jacqui you are the inspiration.

DL xXx