A very useful resource

I know I keep going on and on about the loneliness associated with an MS diagnosis, but it is possibly worse than the symptoms I have (which are constant, but thankfully relatively minor). In fact, I think it is the worst thing I have to contend with.
I don’t know anyone else with MS. There are ways to meet people with MS, so some of this is down to my own lack of energy and initiative. One way is via the Shift.ms website set up as a social network for people who are newly diagnosed. One day, I keep telling myself, I’ll take the plunge and go to one of their get-togethers. It might take me a while though. In the meantime, I’ve gone on web fora for people with MS, and I’ve got a Twitter account where I follow a lot of people with MS who tweet entertainingly and educationally about their experiences. This is all really useful but there’s still a gap there. It’s seeing these people in the flesh, actually hearing them speak, that makes them real.
There is another resource that has been really helpful to me, in getting the information I need as well as helping me feel that little bit less alone. Shift.ms have a project called ‘MS Reporters’. They train people with MS to ask questions, on video, of experts – the questions are submitted via their website by other people with MS. You can find out more here: http://shift.ms/msreporters/

There are a lot of videos and I would encourage anyone with MS to go and have a look at them – whatever your age or diagnosis. Here’s a video about managing fatigue that I found particularly helpful:

And another one on MS research. We all know that there’s a lot of conflicting information about breakthroughs in MS treatment. This video is sensible and realistic but also optimistic about the prospects:
When you have MS, especially when you are first diagnosed but also – I imagine – as the disease progresses and treatments evolve, you have questions by the skip-load. Some are unanswerable, and some have many different and conflicting answers. Most you don’t think of when you’re in a consultation with your consultant or MS nurse – damn you, cog fog! Some you don’t think of at all. MS Reporters has been massively helpful to me. Sometimes it’s hard to take in large amounts of written information, but having that information delivered within a video helps me to absorb it. 
The other thing that has been really helpful to me has been seeing real live people with MS talking to real live experts. The Reporters look like me, and they’re going through what I’m going through – it seems trite but that really has helped me to feel so much less alone, like I’m the only one going through this, like my MS makes me somehow weird and different. They are normal, and so am I. We all have to deal with this irritating disease and we all have lots of questions – but we can get to the answers together.

1 thought on “A very useful resource”

  1. Hi Rachel,
    Not only do we have the same name but we also share this illness. Like you, I felt lonely when I was first diagnosed with MS. I found a great deal of support at my local MS association, however, and so now know a good group of people who also have this illness and understand the challenges that go with that. I also enjoy connecting with people on the internet and reading blogs about this issue, and others. I've found blogging to be a wonderful way to get to know people with issues similar to mine. Twitter has also been helpful.
    I watched the video on dealing with fatigue. Thanks for sharing that. It's the hardest thing to explain sometimes. No-one can see what it's like. Everyone says I look well. And I am relatively well, but sometimes that fatigue just completely knocks me out.

    I wish you well as you continue to fight this illness and to learn more about how to do that. I hope you do get to meet some “real life” people with MS too. The connection that I feel with those at my MS association is incredible. I hope you'll get to experience that too. I'll keep following your blog. Have a great day, Rachel

    Like

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