Help

Hello,
I have had MS since i was 16, i am now 28. I have been blindly ignoring it as i haven’t had many symptoms, and if i did it went away fairly quickly. I went traveling around the world and came back around a year ago, since coming back i have had ongoing symptoms and have started to use a stick to help me walk.
I have recently been really struggling with EVERYTHING i cant relax about anything, all i do everyday is think about my MS, i cant enjoy my life because i just feel like its only going to get worse.
I would appreciate hearing how other people deal with there daily life?

Hi There,

I am of a similar age to you. Are you taking any medication?

I was diagnosed and then left by my doctor for 8 months before a follow up appointment. In this time i developed anxiety and generally felt terrible which lead to more symptoms flaring up.

Once I was actually seen by my specialist, given the right medication and learnt to let go a little I am not even exaggerating when I say I felt a million times better. The reassurence of the medication has changed everything I do, I felt well for the first time in a long time, I can now do more than I have been able to do in a few years. I have even changed jobs.

That is why I asked if you are taking medication - it has made the work of difference. Yes there are side effects and yes there is still the chance of symptoms flaring up but it had triggered something in my brain that makes me feel like everything is ok.

I know everyone is different but if this helps you then go for it. it really has helped me.

Good luck - it will be better.

Hi Alice,

Sorry to hear about your diagnosis, but you’ve done really well so far.

Everyone deals with their MS differently as everyone has different symptoms. I struggle walking and liken every day to having 100 steps and work out how best to use them. I use Shopmobility scooters wherever I can and when people offer help, I take it.

Stay positive and do what you can. We’re off on holiday soon, I’m very apprehensive but have borrowed a wheelchair (my scooter is too big to take) and I’ll see what happens.

I learnt to play bridge as I love cards and I like doing things that involve sitting down like eating,drinking and reading.

Pace yourself and be positive.

Jen xx

Hey Alice, how are yer ? I’ve ignored mine for nearly two decades. I’m finding symptoms are occurring more or less daily, but I’m a stubborn Norfolker and I’m fighting on. I have stabbing pains that make me yell out like you’ve stubbed you toe, but then suddenly it’s gone again. I haven’t travelled for years now, but I have three lil monkeys to support… The headaches seem to get better with a mp3 player. Can’t work that out. The dropping shit just looks like I’m clumsy…not ideal, and not helpful to you particularly, but we all have different ways to carry our crosses. Or noughts. Let’s not get religious… That’s why I stick to stoopid. Take care, Andy

Ms Daisy,

it seems to me, that you need a plan of action.

globe trotting works well to keep you on your toes and gives you some form of schedule / itinerary to follow. now that you are back to the old hum drum of normal life, you find yourself more pre-occupied by the MS and what that entails, almost to obsession. this is not to say your symptoms are just in your mind. not at all! but… i would suspect you are the sort of person who finds mental satisfaction and thus comfort from being engaged to a significant degree.

first, are you on any meds? if not, why not? do you have a MS nurse or the name of a neurologist you can call to get the meds and any other useful advice? have you modified your diet to one that is healthy (but not disgusting)? do you strive to take that walking stick in hand, and exercise a little bit more today, than you did yesterday?

MS can give you (a very reasonable) excuse to slow down. This is (to a certain degree) all in your mind. Sometimes it is necessary to rest up; relapses can make such unavoidable. But quite frankly, phuck MS! Do whatever you enjoy doing and do it as often as you can, for as long as you can and then try to do it for a bit longer.

Good luck and keeping on trotting!

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Hello,

Can i ask how long you have had MS for? Also in response to your question, i have never taken any medication. I’m a bit scared about taking any.