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.

How Derren Brown Saved My Mind (or how I met a group of lovely people on the internet and regained my thought process)
December 1, 2009, 12:27 pm
Filed under: life, MS, Thanks

OK, so the title is not strictly true so before you think I am very mad let me explain….

When I left university with my shiny new BSc (hons) Archaeology I had a plan. It was a good one too. Two weeks until jury service, two weeks of jury service then, go digging. Have tent and trowel, can travel. Beautiful. Actually in the summer of 2006 there was a gas pipeline being laid through south Wales, there were many companies involved in the rescue digs as they are called. Investigating and retrieving evidence before it is destroyed, to enable preservation by record. I was going to get myself in on it.

Then in the intervening two weeks before jury service, I was sat watching TV and noticed that I had pins and needles in my left big toe, very odd. Anyway over the next few days it ended up on both sides and extending to the bottom of my ribcage. It all went numb. The GP told me I was fat. Nice.

This lasted until the end of November, I didn’t apply for a job, my hands were numb too, and having a stumbly person with a tendency to drop things on a site is not really welcome. So I started looking for a job when it went away. And I found one, they ere still doing the pipeline but the portion was not starting until the end of January and was not taking applications till after crimbo. Well that was fine with me.

At the beginning of January I went into my old work and asked about getting a reference. They said they would and also said I could go back for a month until the new job started, well I didn’t know if I would get it yet, so a back up plan is a back up plan and I was back in the shop. Then my eye went funny.

I could not see lights or red. And it had gone misty, the GP referred my to the eye unit. The ophthalmologist said I had a chance of MS and I needed to see a neurologist. This was January 2007. I realised that I would not be able to get away for my digging job. I realised I was stuck in a small town where everyone had small town ideas. I didn’t think like them anymore. Uni had been truly mind freeing. I didn’t tell anyone what they thought I had I just went for tests. I was getting more and more run down and tired. I was taking on to many hours in the shop and being made to feel guilty if I didn’t.

Over the next 18 months I had two MRIs and a lumber puncture before they diagnosed me. I was very low. I felt like I couldn’t talk to anyone properly. I was essentially wallowing in my own melancholy. It was the end of may/beginning of June 2008 when I got the diagnosis. Work was particularly unsympathetic. And it got even lower. This year my patches of confusion (related to my mental fatigue) had got worse and I had had to ask the neurologist if he could help me. So it all came about at once I guess. I started taking modafinil, which helps enormously (well I haven’t forgotten what money means in the middle of the day lately and i manage to stay awake past 4PM), and Derren’s events programmes. So I looked him up on twitter. I had had twitter a little while so that I could get research updates from the trust and the society but I had also found some MS’ers to talk to and they did help to some extent with what I was feeling, because some of them are more advanced than me though, I do find some of what they say a little harrowing sometimes.

So then obviously I found the blog. A little seam of loveliness in the blogosphere, I said in my first post that I felt like I had lately crawled out of an abyss. Well I think this was my lifeline. I managed to settle back into myself and slowly find my ability to think again. I had regained my rationality and found some sensible people to comment amongst (well I do think some of you are a bit weird but that’s ok).  I am so glad that I played that ARG with some of them. You don’t realise it but you nutty, funny, intelligent, random, lovely weirdos helped me find my mind again, in my head at least I very nearly feel my own self. I am out of the abyss and my mind is awake again.

Thanks xx

(Sorry Derren you didn’t save my mind, it was the Brownian Army, and you should feel lucky to have such amazing followers.)