Life, the Universe, MS & Me

MS and Social Media
August 12, 2010, 10:18 am
Filed under: life, MS, Thanks | Tags: , ,

MS posse

I thought I would write to my fellow MSers on Twitter. Sure we are a disparate band but the support is amazing.

When ever a problem arises or you get a new symptom or drug the combined experiences of the group are a boon. There is always an idea or suggestion or just the support that’s required. There is so much difference talking to people with experience of MS. An innate understanding of what you mean and how you are feeling in a way that those without could not comprehend.

Also they are all a bunch of funny people. I guess your humour and appreciation of life must grow and deepen when faced with such things. Either that or MS cruelly targets good and lovely people. Full of awesome as my American friends would no doubt have it.

Well you are all fabby, if you ever need a virtual hug i’m here for you. You make life more livable.

9 Comments so far
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Now THIS was a great read.

It’s totally true, there are a few awesome people out there in the MS community and I find it quite entertaining how groups have formed of people near and far. We gather in places like Twitter and bond not only over MS, but over basic, friendly stuff – entertainment, food, work, jokes, happiness and sadness… life. We’ve found each other somehow and we pull in others too. The groups grow bigger and bigger (and maybe so do our egos, right MS Heroes?) but it’s quite the great thing. Support is necessary, and to find it not only at home but in countries some of us may never even see, well, it’s nothing short of a blessing. Especially when everyone is so kind during those bad times, those times of struggle. It’s something to be proud of.

Now, from someone who can tend to be unsociable sometimes (which is quite difficult in SOCIAL media), I wanna jump on the bandwagon here with this blog entry and agree wholeheartedly. My peeps, you are fabby and I owe you a huge, long, uncomfortable hug if I ever get to actually see you.

Comment by Damon

Helen- You made my day!

Comment by Terri Granard

Right back at you Helen!

We ARE fabulous aren’t we?!


Comment by Trudi

That was a great post, and it’s absolutely true. Most of us are probably not surrounded by others with our unique qualities, so it’s hard to articulate to the uninitiated what we’re going through, both good and bad. The msposse and msheroes fill that void because we truly understand what it means to live with MS.

Comment by shaydee5

It’s a pity really. But that’s why it’s great to have all of you.

Comment by helen1984

Thanks Helen,
And as others have said, Right back at you!!
It is amazing to have the support of all our friends out there, that is one thing that I am grateful to the social networks for. I would be lost without the support I get from them.
Virtual hugs are always available for you!!
Take care, hunni!
Amelia XxXxX

Comment by Amelia

This post(and all of the subsequent comments)completely made me cry for a very long time. Infact, it still making me tear up as I try to write this…


I can’t thank you any of you enough for being there to laugh with and cry with.. I am so glad I have “met” each and everyone of you and I would smother you with hugs if I could..

Comment by Kari

I love to read a blog where it feels like I’ve written it lol! The MS Posse on Twitter has given me exceptional help and support over the last few months when I’ve really needed it. We are a unique bunch from across the globe and I’m proud to call them my friends!

Comment by Roxane

I agree, there is great support from the MS community on Twitter. I tend to fall off for months at a time when I have a relapse. I just don’t have the energy to keep up. When I do have energy, I try to be around more. I’m in a phase where I’m not doing any specific MS medications. I got kicked off Tysabri and then quit LDN after about 9 months because of sleep problems. I’m doing the diet, and a lot of targeted supplements.

I really feel like I’m out of it on CCSVI. I’m kind of waiting to hear a CCSVI story that blows me away and makes me want to go do it. Anybody heard one?

Comment by trrish

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