jomartin 04/04/18
Last reply 2 weeks ago
Joanne newbie to site

Hi everybody my name is Joanne I have RRMS diagnosed 2014
Boy am I lonely in this illness I live with my husband & 2 sons ( who should have moved out by now!! )
I do attend my local ms meetings once a month but it’s not what I thought it would be, I do enjoy it but nobody really talks about their experiences & that’s what I feel I need I could do with a good old chat & moan especially on the really difficult days 😊

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grandma
2 weeks ago

Hi Joanne, MS can be the lonely place in the world even with family around,. We’re here 24/7 we’re safe, occasionally funny, you can rant, cry, celebrate,moan, they’re all things we have done already, there is no such thing as a stupid question with msand we won’t laugh (unless you tell us a joke) keep smiling and fighting😍


stumbler
2 weeks ago

Hi @jomartin and welcome.

Chats and moans is what we’re here for. That is, along with the other things that we do.

So, kick off your shoes, take a seat and have a look around. 😉


jomartin
2 weeks ago

Hi Grandma thanks for your reply & encouragement 👍🏼


jomartin
2 weeks ago

Hi stumbler
Am busy looking around & am liking what I see thanks


vixen
2 weeks ago

Hello @jomartin, nice to meet you! To play devil’s advocate, perhaps the folks at the MS group see the social aspect of meeting as a chance to get away from MS, whereas others need to feel they can share their experiences. It’s funny how this MS invader affects us all in different ways. Sometimes this issue comes up using sites like Shift too; not everyone shares the same ideas about a social media site.

How old are your kids? I know what you mean, even being surrounded by loved ones, it can be incredibly lonely having this condition. I have a grown up daughter but got diagnosed last year and it was a complete surprise to me. I Liv and Work in London am am on Tec too, but I have no idea if it’s really being effective or not, how to judge when every day feels like a struggle?

Anyways, one good thing is having Shift to share thoughts with. And I hope you benefit too. Take care x


briant
2 weeks ago

It’s the sale in Swansea there is nothing for ms people there’s a once a month meeting but that’s it sometimes it would be nice to talk to somebody with ms


jomartin
2 weeks ago

Hi Vixen, nice to meet you too ! You are so right we all have different ways of dealing & coping with ‘ the invader .
My diagnosis was also a shock, honestly thought it was clumsiness, over worked,tiredness got that wrong !
My sons are 29 & 27 & seem to love living at home, saying that though it is ridiculously expensive to get on the property ladder in London.
I agree with you re Tec is it effective as most days are a struggle let’s hope it’s slowing everything down, do you get any side effects ? I get frequent hives & a very obvious red rash over my body especially the face !
Hope I’m doing this right & you get this reply am a bit of a dinosaur when it comes to technology
X


edmontonalberta
2 weeks ago

@jomartin

If you click on a members name then copy / paste as I just did – the message gets highlighted to those you want. If you just type the name, they may never see your message.

Back to your initial question – it all depends what you are looking for… My first wife died from Scleroderma – she went to a couple of support meetings then quit. She found it too depressing; dealing with the nasty disease was a challenge. Listening to others talk about their challenges was not what she needed.

Gord


sigmadelta
2 weeks ago

Hi Joanne,
stumbler is right, this site is just right for a moan etc…
It exists because the medical profession can do very little other than offer a ‘there there’ and slap a plaster on things.
I would think very hard before you take any drugs offered, they aren’t a cure and some of the side effects are nasty.
Like you, I see the condition as something like an invader.
To the extent that I wonder if an exorcism might work? lmao.
After all, the only thing that shows up on x-rays and MRIs is what its doing…not what it IS.
As regards the family thing…son is in permanent denial, and I see him once a month, and only then if he wants wife to babysit!
Most ppl don’t know what to say to us, as they know they can’t really offer anything.
Plus, medical conditions are only important to you if it is happening to you.
When I was fully able-bodied I have to admit to being blind to any one who wasn’t!
These things only happen to “other people” don’t they?
All I can say is try and stay positive… there are worse things than MS. Like umm, crucifixion, waking up on the Titanic, living with a vampire, turning into a dung beetle ( I just watched the film Metamorphosis).
So it’s not so bad is it?
xx

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