I’ve been recently been informed that I’ve had another relapse, and I need to start on the injections. This scares me in so many ways & makes my ms very real. Got DX a year ago. I’ve been umming and ahhing visiting the local group but that also scares me, hard to describe the reason why it scares me. Feeling overwhelmed
I think a lot of people are wary about MS groups in case it is like looking future in the face. I am very aware of my wheelchair and how it might seem to new members - I don’t want to freak them out. I hope that they will see that a wheelchair is not the end of life, the universe and everything ( sorry a bit of Douglas Adams slipping in there) the way to look at it is - if you don’t like it don’t go back! No commitment but if you don’t try it you’ll never know. Jane
I know that’s what I’m telling myself, “what’s the worse thing that can happen” I went to ms life in April & seeing people different type of people in wheelchairs, walking with walking sticks etc didn’t bother me I just took it as we were all there for different reasons. Knowing I could walk away at any point helped as it wasn’t one on one (unless I wanted it to be) also I knew I could go shopping as a back up plan lol. But I enjoyed it & I felt I belonged to something, so you’d think going to a group would be a good idea for me but there is just this doubt. Emotional roller coaster springs to mind.
I was advised by my GP to avoid joining any groups or going to any meetings and just get on with my life. Some of the best advice I ever had if you ask me. I started injecting copaxone over a year ago and have never looked back. You can get plenty if advice on here instead of going to the groups. X
when i was first diagnosed,22 years ago,i went along to an ms meeting,it scared the h*** out of me, i turned round and came straight back out… my late husband was with me,and he said lets go to the pub,and so we did,i vowed never to go back again,and i never have,im a lot more ill now,but still wont go,it felt like a smack in the face to me,everyones different, though some like to go,but its not for me
it reminds me of my auntie,who died last year aged 85,i asked her if she went to the OAPs lunch club,she said,’ dear me NO WAY,its full of old people’ she was always young at heart…bless her lol
I went to a group a total of 3 times. At first someone grudgingly let me join their table but the other two times I went I was ignored. They had their group of friends and didn’t need any newcomers. Shame as a recently divorced and diagnosed MS sufferer I hoped for more.
i went to a group when first diagnosed.
the treasurer lives near me but i didnt know it until i went.
i went a few times, had a massage and did some t’ai chi.
i dont know if i would have gone back if the (very chatty) treasurer wasnt there.
i very much prefer the ms therapy centre in manchester and go there once a week.
I think this is all down to personal choice. Some people will like the fact that they can chat to different people and hopefully come away feeling more positive about things (and maybe meet new friends), but other people might be scared about what they will hear (as previously mentioned).
An MS Therapy Centre would be better for you - if you are fortunate to have one close by. They offer lots of complimentary treatments for general well-being.
As for a ‘group’ - l would steer clear. There will be people there with different degrees of disability. And for someone young and newly diagnosed - do you need this - will it make you feel any better - NO.
You will get lots of helpful info on DMDs right here -
When I joined the MS Society five ish weeks ago they told me my local group would contact me soon, when they do I will go and see what it’s all about. I am confident enough to go but if people do not approach me to welcome and or chat to me then I probably won’t go again. I may post on here quite freely and passing the time of day to a stranger at a bus stop comes easy but to walk into a room full of strangers is quite daunting. When I had to cease work my GP asked if I knew what I would do to occupy my time, I told him that among other things I was going to join the local MS group he didn’t seem very keen on the idea, he doesn’t want me to get bogged down with doing nothing other than MS activities. I would hope that after twenty plus years of having MS he knows me better than that but I do want to see what it’s all about now I have the time. If they EVER get in touch I’ll let you know how it goes. Jan x
Hi Minnie id love to get to a group but apparently there isnt 1 here yet i contacted the guy 40 miles away and was told if i can find a venue to start my own and he would support it but to goto 1 and see what occurs and what i can offer is what i need though it maybe in the pipeline as im gonna try to form 1 for us down West, my saying is nothing ventureed nothing gained Minnie go for it you will probably be suprised and enjoy it but if not you neednt go again but at least you would know. Ive just finished my CBT for PTSD and my main function was and is to get out and confront my issues and each time i do it it will get easier, so i did and yes it got easier along way to go yet but im doing it so my advice would be confront your fear and you may even enjoy it, hop you do all the best sheep
I was diagnosed earlier this year and felt unsure about attending the local groups (MSquared) get togethers. I’ve since been three times and will continue to go as and when it doesn’t clash with other things, as the info or advice is great and it’s nice to meet up with fellow MSers now and again. I’m now trialling an FES device having met a couple of folk who showed me theirs and assured me of how much it’s helped them. So I’d say pop along, take as much or as little from it as you want and if it’s not for you you don’t have to go again. Best of luck Paul