Forum

My confession

…is that I think I am becoming addicted to this forum, but I’m not sure this is a good thing. The reason we are all on here is bloody MS, and there’s been some very helpful and relevant comments, threads etc and I definitely think this is a good thing that people are able to help and support each other.

BUT, because it’s all MS, the nature of the beast is to focus on that, and because I seem to check on it often, i inevitably read about many problems that people are facing and this is making me more aware of the issues I have, instead of just living…is it me??

SLUG,

l can understand how you feel. On this forum - you can talk about all the unsavoury nature of the MS Beast. Get it off your chest - ask for opinions/advice - have a good moan or even a laugh at the silly things we do. For me - this is the only time l have anything to do with MS and its impact on my life and yours. l never mention anything MSessy to friends and family. Nobody wants to hear about it - so l don’t bore them with it. lf l get asked how l am - l just say ‘fine’ or ‘great’ how are you - change the subject. And SMILE!

Also, this forum is educational - l learnt about LDN - Vitd3- B12 - Sativex and now Biotin. And l thank them all!

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No Slug. I feel the same.

The forum seems to be full of doom and gloom. More so than ever before. This i why I deleted my threaded about my MRI results had shown deterioration since diagnosis 10 years ago. I didn’t want to be seen as needing sympathy an adding to the doom and gloom threads of late.

I completely understand and remember how frightened I was at diagnosis but there are hardly any positive threads of late.

MS is not the end of the world and there can be lots and lots of positives I have seen from family and friends since my diagnosis. I have seen a wonderful side to people since diagnosis.

Shazzie xx

Hi Slug,

I have got to know some wonderful people on here - Poll, Shazzie, Noreen, Jen, Carole, Cherry, Linda, Kate … (sorry if I missed anyone but it would be a long list if I covered all the nice people) and I know that any feelings I have that they will always know what I am talking about. My MS is very mild (11 years and counting but no meds and still dancing) but not unnoticable by me and sometimes I don’t want to mention them to others around me cause I don’t normally have any major problems.

The lure of this forum is you know we all know what you are talking about.

JBK xx

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I know exactly what you mean!

Sometimes I’ve taken a break for a while (but it’s never lasted), as I’ve not been sure it’s doing me any good.

Yes, inevitably you read cases more extreme or upsetting than your own, and sometimes can’t help wondering: “Oh dear, will that be me?” I am in no way suggesting people shouldn’t post, for fear of scaring others - that would not be a good thing.

But yes, it’s a double-edged sword. It’s great there is such a facility - but does it (for me, at least) encourage unhealthy “wallowing”, and dwelling on things I might otherwise - not forget, exactly - but give a lower profile?

Whatever you do, don’t feel bad for having mixed feelings about whether it’s always good for you.

I don’t personally find the forums “doomy” overall - I’m often inspired by the humour and candour with which other people face up to their situation, and several posters are naturally very funny, without resorting to canned jokes. There isn’t, and never has been a rule that you can’t still write humorously, and several posters use that to full effect.

But yes, at the end of the day, an MS forum is, well…about MS. That’s always going to be true, no matter how witty, or inspiring, or insightful the posts. So indeed it might not always be the right thing for people trying to rise above the daily grind of chronic illness. I don’t think there’s anything wrong with admitting it.

The vast majority of people with MS aren’t here. I realise that, in many cases that will be because they simply don’t know about it. But in other cases it will be because they’re getting on just fine without it, thank you very much, and have other things to focus on.

Tina

x

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Hi Slug. Well, I’ve been here since my first anon reply in 2003. Is that addiction? I don’t know but to be honest it doesn’t matter if it is. It’s not the only place I ‘talk’ to people.

The thing about these boards is that for us with MS, they are the one place you don’t have to explain certain things because we all know. If you say you’re having a bad MS day, we understand. No-one will judge you. It doesn’t mean you’re wallowing, it means you’ve found a group of people with the same single thing in common. You’re amongst friends and it’s likely that many people who are reading it know exactly what you mean.

Shazzie, the posts are the same sort of thing as usual, believe me, it’s no more doom and gloom than usual. But if people are sad and gloomy, isn’t this the best place for them to offload? There’s information, advice, support, kindness and compassion like always which is what the good folk on here do best.

I’m still in touch with people I met ten years ago on here and if that’s due to forum addiction, it’s worth it!

Val [now a Mod but wasn’t always]

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I second all of that, Val!

Alison

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Tell me about it, Slug. My name is Alison and I spend WAY too much time on here. But this forum has helped me enormously, so I don’t care.

Alison

the clues in the title MS forum

I agree 100% Val. Afterall, I am one of those who have offered advice, support and kindness (sometimes checking in the middle of the night to make sure someone who is suffering is ok). I have also received the same from my friends on here since diagnosis in 2005.

Shazzie x

Hello all. Exactly Tina, a double edged sword, and I don’t want to wallow.

i don’t think I’m gloomy and believe I have a pretty positive outlook on things so here’s to a fun and fabulous weekend for everyone, chin chin sweeties (new favourite greeting thanks to JBK). Most Super forum, or Much Support Forum, or Moving Slowly forum xx

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I like Most Super Forum!

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I also check in every day, I read all the new threads and if for some reason they don’t interest me I don’t continue to read them. I have been here for about a year now and I have learnt more in that time than I have in the 22 years since my first symptom? I often have a chuckle at some of the threads and comments, likewise some of them make me very sad. I’m not too good at dishing out good advice and sympathy but lots of people are and it’s heartwarming to read their support. I’m certain the forum does more good than it could ever do harm so more power to our cyber world

The only negative comment I could make is that I do wonder if the people who are new to our wonderful world get bogged down with analysing every little thing but then I ask myself ‘who am I to judge others and their coping mechanisms’

My name is Jan and I’m a forum addict

Jan x

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I’m terrible putting names to faces so I call everyone sweetie or hun and have been for years so everyone now just accepts it. Of course as a female in a male dominated profession, I can get away with it

Have a fab weekend slug sweetie

JBK x

my name is carole and i’m a forum addict too!

a very tired and fed up addict right now but hey ho! nothing lasts for ever.

counting down to my first tipple, it’s going to be a single malt!

xxxx

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The times I don’t check in are usually the times things are not going very well…but I’m not ready to talk yet

Sonia x

Hi Slug, I check in every day without fail. This forum makes me feel normal, I know no one else with Ms and I find it a very lonely illness not too mention frightening. When I read about problems on here that people overcome it makes me feel more positive that I can cope with whatever c**p is coming my way.

regards

ann xx

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Hi

I think this forum is many things to many people.

It’s role in my life has changed as I have travelled my journey with MS.

I have been around about 10 years. Before diagnosis I used to read as much as I could to try and learn as much as possible. Then after diagnosis I started to post by asking questions as well as still reading as much as possible. Over the years that has changed. These days I tend just to keep an eye on things, to see what new developments are worth being aware of and to help if I can. My experience of MS is atypical (I was diagnosed with SPMS) so I don’t know a lot about relapses and DMDs so a lot of posts I can’t contribute to.

This forum has given me so much. I have learnt a lot, had incredible support from other users and made some amazing friends. I’ve also been inspired by others who cope with far more than I do and who still maintain positivity and cheerfulness.

The forum has gone through several reincarnations in the last 10 years. In the past it has felt a bit like ‘the wild west’ at times. Recently, it is a much calmer place with less controversial posts and less acrimony. It is worth remembering the web team and moderators who work hard to keep this a calm and safe place for us all to be.

I agree with Tina’s and Val’s posts and echo their sentiments.

I have spent too much time on here but I’ve no regrets.

It’s a good place to have found.

Anne

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Hi All,

I have not been around this forum for long but have found this forum so valuable, thank you all. Hearing from people who get it is great. I am really sorry if I have been a bit doom and gloom at times I promise to try to be more positive.

I’m excited today as I’m off to a party! Going to an end of season ski party to see lots of friends I haven’t seen since my season ended in February. Thought I couldn’t go because I had no one to have my four legged friend but when I phoned to say, because the party’s in a field I got told to bring him! YAY!

Have a great bank holiday weekend.

Snowqueen x

Hi Slug, like your other respondents, I check in just about everyday. I have been an active member here for about 5/6 years. I used to feel I was addicted and suffered withdrawal if I missed a day! Not as obsessed now!

But this forum has seen me through so chuffin’ much. From being highly suspected of having PPMS, to having a 95% positive DX of it. Then 8 years later being told it wasn’t MS at all, but a similar condition called…wait for it…

Hereditary Spastic Paraparesis ( paraplegia).

Then the following year, that DX was changed back to PPMS. But it was less than a year later, when my 16 th neurologist finally and categorically said it is defo NOT MS, but ISP and no- one knows why/ how I got this wild and wonderful monster in my life!! Its a wonder I survived all this jiggery pokery!

So after all this faffing about, I stick aroud here, as I reckon I’ve earned my wheels! Besides there are some truly fab and friendly bods, who I wouldn’t wanna live without them in my life!

I remain as positive as I can, offer advice and support whenever possible and am oh so happy to receive the same back.

Sorry for waffling on so long!

Love Pollyxx