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How do you cope with the unpredictability / unknown

Hello, sorry me again, any advice on how to cope with the unknown? I am a pretty organised kind of person and like to have plans etc for myself and family. I am really struggling with the unknown and my mind is working overtime on the “what ifs”, how do you cope / control these feelings of terror? All I’ve done is cry since this last relapse :0(

Thanks Sam

Hello Sam

That is one of the worst things about MS. The fact is that we none of us know what’s round the corner. And you can say ‘but that’s part of being human’, or ‘you could have a heart attack and die tomorrow’, to your heart’s content, but the fact is that having MS makes our lives just that bit more unpredictable.

And the most predictable thing about MS is it’s unpredictability.

So, the question of how to cope with that is kind of unanswerable. Eventually you end up just living day by day. Don’t try to worry about tomorrow, because everything might change by then.

Perhaps that is why quite a few of us don’t mind being considered a little odd. Or ‘different’. Because we have to not worry about the future, ultimately it frees you up to be who you are and not worry about what anyone else thinks. Since it’s irrelevant to our future, what does it matter whether Mrs Next Door thinks I’m strange? And if anyone can’t handle who I am, that’s their loss not mine.

I don’t know if that helps or not, whatever!!

Sue

Hi Sue, again thanks for your reply.

I’ve always been someone who worries about what others think and I’m the one who worries and runs about looking after everyone but my main worry is and always will be my kids, who are to young to be dealing with this. I’m worried about them and what they may have to endure because of my illness.

It just sucks big time and nobody gets it but you guys, thanks again x

Hi there :slight_smile: I got diagnosed with this crap last year I hate that things are unpredictable. I’m worried to book a holiday incase something happens and I can’t go! But I’ve been away twice since and everything has been fine, so if I let my worries take over I wouldn’t have booked anything and looked back in regret. I guess I’m starting to get used to it but I agree with Sue that it’s a question that can’t really be answered. You just have to take a deep breath and take each day as it comes. Your children will cope and learn that this is you- regardless if that’s a slightly different you than what you’d like, they’ll love you and adapt to what is necessary x

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your children love you unconditionally.

whether or not you can do active play.

a cuddle and a story make you feel so close.

what i’m trying to say is have zillions of cuddles and share lots of stories/books.

if they are in school, have a word with the head teacher and ask that s/he looks out for them.

be strong for them.

carole x

You deal with the what ifs one at a time. Your organisation will be an asset - going on a journey with a wheelchair requires military planning. But you can’t plan illness - life ain’t lke that.

Kids - they cope amazingly well. they love you whatever. they adapt, in fact they will be telling you off!

Yip “crap” is the right word. Thanks for your reply. I’ll need to learn this one day at a time business but still

plan ahead too. Hope you keep well x

Hi Carole, thanks for your reply and good idea to speak to school,Kids are P1 and P6. Hope you’re keeping well x

Thanks for your reply. I’ll need to get used to this one at a time business, instead of all

the scenarios I have in my mind. It’ll take time but I’ll keep trying. Hope you’re keeping well x

To me it’s all about doing what you can now, rather than later. If in 5 years you can’t, you’ve missed the chance. Everyone has different priorities in life, so look at what these are, and focus on these, as it will take away any worries you have. You’d have done your best to achieve them, and takes out all the planning, as your living it. Good luck with it.

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Hi soundgarden, do what you can now…I like that…wonder if the bank balance will allow lol

thanks for your reply, hope you’re well x

I think this is probably the best answer. Think about the now, not the possible future. I remember planning to go to The Gambia so I could swim in the Atlantic Ocean there once more before it became impossible. Too late. It became impossible a couple of months before we were to go.

Do what you are capable of (assuming the bank balance does in fact allow it) before the chance passes you by. I wish I’d gone on a safari - and I know you can do it even though you may be disabled, but I also know I wouldn’t be capable (fatigue, bladder, etc, etc). So that is forever beyond me.

There are many things I wish I’d done before. Let it be memories you look back on not regrets.

Sue

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Sam there has been some good advice. This MS crap can certainly highlight the increased set of uncertainties. None of us can foretell what will or will not happen and the prospect of crappy stuff happening can be terrifying. If we let the scary stuff take over we will have far less energy to enjoy the good stuff. So my suggestion is try not to let the scary stuff take control, enjoy every day stuff as much as possible. I try also to plan ahead so that I have goals and targets to keep aiming for. It might sound naff but I try to deal with each day as it comes, some great and some not so great and some absolute stinkers, but I have been very lucky with the ratio of these various types.

All the best

Mick

hi everyone

i am humbled by all and your individual scenarios. i bless and salute you all. GOD brought us together, not that i’m a religious person, the nearest i got to that was THE CHURCH ARMS at lunchtime and THE CHURCH INN in the evenings!!![excuse what i call ‘humour’!] as said in an earlier message WHERE WE GO ONE,WE GO ALL! x

Oh Sue, you’re a woman after my own heart, my ‘bucket list’ 1st item is a safari, something I’ve wanted to do for as long as I can remember but feel I need to wait until the kids are older, perhaps I should relook that approach. Cheers to memories yet to come x

Thanks for your reply Mick

I think I’ll need to practice focusing on the positive for sure, it’s the only way to go.

Hi Paul, we all need humour so cheers to that

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A good friend of mine took her 8 year old to Sri Lanka this year, mixed elements of safari, wildlife stuff with safety for children. If the budget can stretch … it’s something to aim for.

Sue x