It was brought to my attention by this post by Jackie on Blood, Poop and Tears - she used to write The MS Blog. But that site seems to be on haitus now and I've always really enjoyed her writing so I'll follow her wherever her muse (and condition) takes her.
Plus this site is a MAJOR perspective / reality check for someone like me.
I have to say I TOTALLY agree with Jackie's post - what good is whining online about every new symptom going to do anyone? I can sometimes lose patience with people on forums like Shift.MS - it can get a bit "woe is me" at times.
But having said that, there have been times when the information shared has been really useful. And it's always good to feel a little bit less alone.
Controversial POV coming up - duck for cover
I think maybe the problem is that the people who tend to use social netowrking and forums are usually a bit younger - and obviously most people get diagnosed with MS in their 20s and 30s.
And people that age tend to think that the world revolves around them, and "NO-ONE UNDERSTANDS WHAT I'M GOING THROUGH".
I know I certainly did a few years ago at least. And being that age and having to deal with being told that you have a chronic illness, and that the future you THOUGHT you were going to have has been misplaced, is going to be insanely difficult.
But I'm not going to let MS define me or hold me back from doing the stuff that my family and I want to do - I have MS, it doesn't have me.
I like to think that my posts following my horrible relapse this year have focused mostly on the positives that I've gained through CBT, and Physiotherapy, and the Working with MS seminar - in short, all of the ways I've been trying to find that help me DEAL WITH STUFF.
The help is out there (even with this government), you just need to be forceful about asking for it and making sure that you get it.
And I've certainly been a lot less 'backwards about coming forwards' about my condition - if someone asks me why I've got a blue badge and a walking stick, I'll tell them. It's certainly not something I'm ashamed of.
Again I'm struck by the massive irony of asking people to Stay Positive on a site called "It's a Shit Business". But we all have our crosses to bear.
I love this bit from Jackie's post:
A pity party is what you get to do after you have a bad day or experience. It is not the state you should be living your life in. You have a chronic illness. Have a good cry. Ok…now move the fuck on and do something about it.See? I think that's great - yes, we all have bad days, and I know people who have terribly bleak days even without a Chronic Health Condition (I know - how DARE they? The very nerve...). But shit happens to everyone regardless.
Let's get on with it!