Last reply 1 month ago
Isolating effects of MS

Hi there, I have just joined the site and wish I had found it sooner. What a relief it would have been to chat to other MS’ers from the time of my diagnosis. I have been lucky with mild symptoms (RRMS) up until three years or so ago. Since then I have deteriorated and had a relapse last year, still getting back up to strength, but have found one of the hardest things to cope with is the isolation. Most of my friends want to socialise over a drink or at a fitness event, neither of which I am able to fully participate in, I’ll go but leave early and risk looking unsociable, but I have come to accept my limits.
How do others feel about trying to fit in to social norms with MS. and how have you found ways to enjoy socialising without compromising?

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peterfrancis
1 month ago

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I was diagnosed with SPMS almost a year ago now and yes Isolation plays a huge part in my day to day life. I have only left the house to attend appointments and such, I am waiting on an Electric Wheelchair which will give me back some of the freedom I’ve been missing over the last year or so.

I only have a small circle of Friends and they are busy living their lives, no social events / occasions have happened as far as I’m aware, perhaps I was not informed of any intentionally, who knows?. Do I care?…. In a word no.

I have far too much going on with myself and my new friend SPMS to honestly give a hoot about who is shagging who etc, etc, etc.

When I’m ready, willing and able to do so, I’ll venture out.


vixen
1 month ago

Hello @wobblesh. I only got diagnosed last year and was lucky I found Shift quite soon after, and it was a Godsend. Actually, there is a monthly meet up at Southbank Centre that you might want to consider. I have become much more of a home lover since diagnosis. I am still working OK but I do find social settings give me a bit of anxiety. You’re right. MS can be totally isolating, even when you’re with loved ones. I’m glad you’ve found Shift. The search box above is invaluable if you want to look for previous posts on random things. The map function will also let you see if there is anyone in your local area. Take care x


stumbler
1 month ago

Hi @wobblesh and welcome.

MS can be isolating, but only as isolating as we allow it to be. We have as much right as anyone to attend social functions. And it is our choice as to how far we participate.

Never feel the need to apologise for your MS or feel you have to make excuses to manage the limits imposed on you by your MS.

It can be difficult to fit in, as we feel different. But, once again, we’re only as different as we allow ourselves to feel that we are. But, we do need to live within our limits, or suffer the consequences.


wobblesh
1 month ago

@vixen thanks for your message, I find it is difficult just to let go and have a good time when it feels you are shackled with the limits of MS, and the various consequences that may spoil your time during and after! I suppose though that I just have to get over it and expand my social scene with new less physically taxing activities. Thanks also for the heads up on the Southbank meeting, I may try that out as well. All the best x


wobblesh
1 month ago

Hi @stumbler thanks for the message. I suppose what I was trying to say was not that I make apologies for my MS but that I tend to avoid social activities to avoid having to talk about my limitations, so in a way doubly isolating.
I don’t want to accept and then have to pull out at the last minute as well, which is annoying for the organiser, but sometimes that’s what we have to do to keep ourselves fully functioning.
Cheers x


wobblesh
1 month ago

Hi @peterfrancis thanks for the empowering words, I agree I don’t miss the petty gossip. I hope your new wheels will allow you a greater level of autonomy and you will look forward to any new social events when you are ready for them.
Cheers x


rainbow
1 month ago

Hey @wobblesh

Totally get where you are coming from, not sure I can offer any advice though sorry. I just thought I would let you know your not alone feeling this way. I miss being able to I guess just go out and join in, gone are the days when I would just say count me in before I even knew the plans. I prefer staying at home now, it’s just easier. I find it extremely difficult to talk about what’s going on with my MS, I guess that’s why I joined this site as I know I do need to learn to talk about things. So I’m glad you have found this site as there are a lot of really knowledgeable people on here. But do take care as well and be cautious sharing any personal info.

Rainbow 🌈


wobblesh
1 month ago

@rainbow I agree there is a lot to take on board with the information available on this site. And it’s great there are people who understand the issues who are there when I have questions. Thanks for the advice.

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