Tag Archives: forums

Feb 09 2013
20 Comments
My Ramblings

A Helping Hand in Limboland

sad stick womanSometimes I wish I could go back in time to that terrifying morning when I woke up and couldn’t speak properly or walk in a straight line. If I knew then what I know now, I would have been a very different person. For someone whose father had MS, I knew surprisingly little. I had no idea what  CIS was, what an MRI would show, why I had to have a lumbar puncture.

I was in Limboland. I might develop MS. Or I might not. It is a cruel waiting game. I didn’t understand the ‘multiple’ part of multiple sclerosis. I left the clinic after that first relapse utterly petrified. What was I to do now? I had been given a couple of MS leaflets and information about how to contact the MS team. But if I didn’t yet have MS, why would I be given that? I was bewildered.

I accessed a few forums, one dedicated to Limbolanders and I gained a huge amount of information (a very, very special mention to ‘Rizzo’ who was amazing in answering all my queries). The forums were a lifeline, but at a cost. A lot of people had been stuck in Limboland for years, some well over a decade. Despair and anger oozed from the forum. We were all in a nasty, dark waiting room and I would feel a painful stab of strange envy when someone posted that they had been diagnosed, and were now leaving us behind; they had the golden ticket.

I read everything I could about the McDonald criteria, ticking off the four points bit by bit. Finally (but only 10 months later), I had my ticket. My brain threw up more lesions, far too many and I was diagnosed. Possibly one of the best and worst days of my life.

I wish I had been handed a step-by-step guide to life in Limboland, clearly explaining the whole diagnostic process, the frustrations, the waiting. Could someone please publish this? Letting us know that you have to go through so much, from first relapse to eventual diagnosis. Break us in gently. Please don’t throw us in the deep end.

So, to everyone diagnosed with MS, look out for the Limbolanders. Treat them kindly. Be an inspiration and show them we are not so bad, it’s not so scary. There is a life after diagnosis. Aren’t we all proof of this?

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Jan 26 2013
19 Comments
Blogging

Are We Our Own Worst Enemies?

Yesterday’s blog brought some thought-provoking comments, two in particular from Steve, who linked to a great blog post he wrote (read it here), and I spent most of the day mulling them over. Are MSers guilty of naval-gazing and deconstructing every single little symptom and therefore preventing ourselves from being understood by other people?

And I’ll start with the term ‘MSer’. There has been a huge amount of debate in the MS forums and on Twitter about whether it is ‘acceptable’ to call ourselves MSers. I mean, really. If we are pitting ourselves against each other in this matter, what hope is there for us? I use the term a lot. I think it is snappy, short and easy for social media. Whether or not you choose to ‘define’ yourself as an MSer is up to you, but don’t berate those who do.

I may refer to myself an MSer, but I certainly don’t live my life solely as a person with MS. It just happens to be part of my life, the same as being a mother, a daughter, a sister, a colleague, etc. Once you are diagnosed with MS, ok, you join a whole load of other people with MS, but they are all different, just as daughters, mothers and sisters are – they generally only have that one thing in common.

And yes, MSers can be incredibly guilty of dissecting and discussing each tiny symptom, blowing things out of proportion. Wait – before I get hate mail – I have been there (still am sometimes). I hold my hand up. Pre-diagnosis, I was a frequent visitor on MS forums. I was scared, bewildered, anxious and lacking in information, and often the forums made me more worried,  not less.

I started this blog to show the funny, embarrassing and downright socially awkward side of MS, precisely because I was so fed up reading blogs and forums that were simply a litany of endless complaints. Who wants to read about that?  If we want sympathy and understanding from other people, constant moaning is not the way to go about it. I know some of my posts are downbeat, but I hope the majority can raise a smile and an  ‘oh, that happens to me too!’

We need to amaze people – ‘THIS is what MS looks like’ – ‘Hey, I’m still living, working, laughing, getting drunk, being happy’. Reach down to those going through the diagnostic process, befriend them and inspire them. Maybe then we can stop this cycle of despair.

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