Hi everyone! I’m Emma I’m 55 years young! I’ve had MS for 15 years now was dx with RRMS and then 4 years ago PPMS so a bit about I live in Birmingham with my husband and our beautiful dogs! My MS has definitely been in decline for a few years now but I have an amazing power wheelchair that I’ve decorated pink and an adjustable bed that’s amazing - I think the thing I find frustrating is I want some friends who get MS and what it’s about! My husband is my biggest advocate as are my family but I get so tired of hearing “you know you really don’t look sick” so someone suggested this group and finding likeminded people! I’m a very positive person my MS doesn’t define me I still try to knit and I’ve recently discovered lego (granted a lot of it ends up on the floor!) but I’m still doing things I want to do!
So just popping onto say hello!
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Hi @trueman.emma. Think that that’s the best and right attitude to take. None of us ought to let our ms define us. It should be up to us, to define our ms, in which ever way we choose. I chose to keep as mobile as possible when my consultant diagnosed me. Definitely not as far, as back then and probably not so balanced nowadays either. Although I’m still walking. Wishing you all the best with your knitting and Lego building. May you keep on with both, for as long as possible.
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Hi Emma. If you are able to get out and e.g your husband can take you places then have you looked to see if there are any MS groups near you? I haven’t been to meet ups of my local group but they meet maybe twice a month in a pub/ restaurant for catch ups, meals and ‘cocktail’ nights.
You can find lists of local groups on the main pages of the MS Society website
Just to add to my previous post: I am a soon to be 72 year old guy diagnosed with RRMS around 19 years ago and although SPMS hasn’t been mentioned, like you my MS symptoms are getting worse - no new ones but the old symptoms are worsening- walking in particular and the accursed bowel and bladder problems.
Use a mobility scooter when out and a lot of ‘furniture walking’ in the house.
Living happily with my wife ( who has just completed radiotherapy, chemotherapy and surgery for cancer. MS and cancer certainly makes you feel that life is uncertain and vulnerable!)
Hi Emma,
As @Hank_Dogs said, it could be worth looking up your local MS Society group. They will get it and you can talk about MS stuff with them or whatever else takes your fancy.
My local group are a lovely fun and friendly bunch who hold very regular meetings ups and activities.
Best wishes
Alison