Last reply 11 months ago
Feeling trapped…

Does anyone else feel trapped inside their heads….

I have so many random thoughts that I know my family don’t understand. There’s no point trying to explain how it feels to have MS. I know I’m lucky that at the moment I’m able bodied and symptom free. I have recovered fully from all my relapses (thank god) BUT… the not knowing when another one could come or what it will be makes me feel trapped! It mentally restricts every move, every decision I make. It’s like dying without dying…I’m stuck in my head a prisoner.
I want to go to an aerobics class BUT how do I know if I’ve over done it before a relapse comes and tells me!? I want to go away but now I panic incase i get too hot and relapse and I’m stuck there and ruined everyone’s holiday (it’s happened). What if I can’t get home? What if I can’t walk?
I want to go out with my friends and dance and get drunk be careless just once but I don’t I stop myself and stay in.
I want to do so much but I’m scared!! The fear of the unknown stops me everytime.

Sorry to ramble on but does anyone have any coping mechanisms? Does anyone have the same feelings?

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11 months ago

Hi Michelle,

I don’t have much to add apart from I feel the same and you are not alone.

I find myself getting sad about things I probably shouldn’t do now when in reality even without MS I might not of even done them! Doing the marathon des sables in the dessert for example!

My only advice is for all the things you have said you want to do, if the worst happens as long as you have a credit card, a charged up phone and WiFi there isn’t much that can’t be accessed. Inconvenient yes, upsetting yes, but will the worst happen every single time you want to do something absolutely not.

Sorry not much help, just wanted to say your not alone.


11 months ago

I have benign MS and have thus far never suffered a relapse so my situation is a little different. I think you will learn through experience. You relapsed in hot weather, try a holiday somewhere warm and not too hot perhaps? Do everything you want to do, life is for living. Just make sure you get the rest so you can recover. As for dancing, that is an essential for mental wellbeing! And be happy you can dance 😁 All the worrying youre doing i.e stress could bring on a relapse all by itself from what folk say on here. Live life without regrets. Let us know what you get up to! Interested to hear what others have to say on this…

11 months ago

And my close family find it hard to talk to me about MS too. I understand where you’re coming from x

11 months ago

Thanks both comments helped…I guess I’m not alone.
TBH I have done some great things but 2 years ago I had a relapse and I panicked over going to work, people talking about me and along come something I never experienced before, anxiety. I quit my job but as soon as I was pretty much recovered I got another one.
I think I’m letting anxiety and fear rule me.
I do need to say yes more, stop over thinking and go for it!! I’ll let you know how that goes 😬

11 months ago

Hi @michelledl and welcome.

Life for everyone is unpredictable. No one expects six numbers to come up on the lottery, or to receive a diagnosis of whatever from their Doctor. Everyone has to cope with whatever life throws at them.

Treat MS as an early warning sign that everything in life has consequences and we’ve now been given the opportunity to re-evaluate how we live life.

Don’t stop doing those things that you enjoy. Just do them in moderation until you understand your tolerances. Holidays are still possible. I suffer heat sensitivity, which can fatigue me totally, very quickly. But, I find it’s the type of heat. Oppressive, humid heat is not good, but fresh heat is OK. And, holidays usually have ample options to cool down, e.g. the pool, the sea, air conditioning, etc..

You’re more than welcome to ramble on here as much as you need. Your family may not understand, but we do. 😉

11 months ago

After MS and epilepsy diagnosis, and subsequently having my driving licence revoked I cried a lot. I started a mild dose of antidepressants which took the edge off. I’m coming off them now. As a short term remedy it could help you maybe? Also starting mindfulness and relaxation sessions to switch off. A drug free option. Take care

11 months ago

I can relate to this post so much 10 years symptom free here and I’m still waiting for my next symptom to pop up. It terrifies me because I know I’ll have to retire.

but my advice is take what time you have and do everything you can think of, otherwise when that day does come you will be full of regret. Fear is something everyone possesses but holds many back.

Don’t let MS control you as much as I know in myself I can feel exactly like you do about having MS at times. so much of your life will be lost to a disease that is currently not doing anything to you.

all the best Brando

11 months ago


CBT Have you heard of that, cognitive behavioural therapy, it might help.

I know anxiety affects me too. The spiral that you get in, till the point where you freeze. The fear can feel like its paralysing you so you don’t do anything. Don’t let that happen. You have one life and its for living. Its far worse giving in to fear. Yes you feel safer in the moment but look at how you feel now, crappy because your not doing what you want.
Plan what you want to do then go do it, you might have to adapt but so what you’ll get feel good endorphins that your doing what you want!
Also remember we could all get into problems without ms like people could have a heart attack, or hit by a bus but at least they died doing what they want and living.

I understand and I know it well but don’t let the fear stop you living your life and doing what you want in life

11 months ago

Thanks everyone for all your replies. It’s the first time I’ve joint any group and it has helped.

I think anxiety plays a major part, the fear of the unknown. I think I will look into the things you all have suggested. I know no one can control anything in life and I do feel selfish for having these thoughts but to just get them out there feels good, like a release (also to not be judged but understood).

I do worry far to much about the future and I’m going to try and stop that x

11 months ago


We only live once unless we get reincarnated – so scr*w them all…

Want to do aerobics? Do it… Getting drunk with your friends while dancing? Get out there so long it is only once in a blue moon.

Do whatever makes you happy (within limitations). Get out there and do it… A hundred years from now – none of us will exist. Now is the time to stretch your wings and fly!

11 months ago

I need some of that attitude!! Lol
Might have to build myself up to have some f it moments…I’ll keep you posted 👍🏼

11 months ago

Oh god michelledl I feel for you I really do and you only young (I think?) try not to dwell I know it hard but try to start thinking [email protected]?k it there might not be a tomorrow so make the most of today every day just remember your limits you can do anything it may take a little longer but you can do it there’s no rush

11 months ago

I understand how you must feel. I lived with ms for over fifteen years without knowing, just used to brush off the symptoms as they always went again. In that time, I traveled had kids, run a business smoked drunk got stressed, all blissfully unaware of what was going on. I hope you can learn to try at put it to the back of your mind and live your life. Probably best minus the smoking and stress but live your life, by the time you are in my boat there will be a cure.
Take good care.
Paul x

11 months ago

Hi Michell, Don’t look for lions in your path. I have lived with MS for over 50 years. Started with relapsing and remitting to secondary progressive. I flew alone with my wheelchair from the midlands to the USA to visit friends. To visit both I had to take six flight in two weeks. Friends and family all said don’t go. I did it and enjoyed every minute of it all.
Don’t dismiss anything. Treat MS like an unwanted lodger you can’t get rid of.
When MS rears its ugly head deal with it and go with the flow. Rest when you need to recharge your batteries. Live your with no regrets.
Good luck, Bea

11 months ago

Becarrol- wow 50 years . A long time – your a inspiration to do that and not let it stop you, very brave … x

11 months ago


Hi, i understand how you feel, but from experience from someone now spms unable to walk i have an advice get travel insurance and now that you are able you must go travelling, choose beach mountain those places will be a no go if things do not turn well

You still can travel , if things go wrong later is not the end of the world. I managed to visit israel recently i saw amazing places and i am in really bad shape thanks to help of husband and kids

The worry doesn’t let us operate but you still can and you should do it! Next relapse may never happened! Do not worry about what is not here! ! Live the present treat yourself! Think now

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