An MS update

I've just realised that I've not written about my MS for a long time. Now this is partly, of course, because it means that there has been no significant change to write about. Given that it is a progressive disorder, just pootling along in a sort of equilibrium has had to be good, right?

Over the past two years since diagnosis I've become much more body aware than I ever was. I notice small changes that indicate that something is starting to go wrong and I can act accordingly. Luckily my doctors recognise this. After all it's probably not every doctor that would accept that I know a bladder infection is about to start because my eyes feel strange. Especially when the urine test is clear. But the requested prescription always does the trick and gets me back to normal. I've since learned that this sort of weird occurrence is quite common in MS.

I feel at my best in the late spring, early summer and early autumn. My body hates cold and damp weather, but it doesn't like too much heat either. I am conscious that I walk better and further in pleasant weather but I'm not afraid to use a stick or even, on rare occasions, a walker with a seat if that will enable me to do some of the things I want with confidence. I've been on medication for stiffness and the pain of leg spasms since the start of the year and that has helped too.

I've been seeing a lovely physiotherapist for the last few months to work on dizziness and my core stability, as one side of my body is definitely weaker than the other. She is part of a rehabilitation team and that has led on to appointments next week with an occupational therapist and a speech therapist, because I have some functional weakness in my right hand and arm and a tendency to slur words a little when I am ill or very tired. None of this is earth shattering or even too horribly restrictive yet, but such problems are best tackled early if the access to therapists is offered, so my work doesn't become affected.

I feel lucky to be getting so much help. Sometimes I worry that it is because I am worse than I think I am, but just chatting to doctors or therapists makes me realise that I am at the higher functioning end of MS and that is where I want to stay. I think the input may be influenced by the fact that I am a carer and I am honest about the fact that because of Son 2 I don't get the amount of sleep I should, which is probably a factor in my dizziness. I'm usually pretty good at pacing myself, at taking notice of the spoon theory, but occasionally I forget that even on a good day I can't rush around like I used to and it takes me days to recover. It seems I never learn!

Self publishing

Self publishing is something I've been thinking about a lot recently. In the past, when it was so closely linked to vanity publishing, I wouldn't have even considered it. But now, with the success of the Kindle, it is becoming a much more credible route for a book that is perhaps not commercial enough for the big presses and it's certainly not one I'd discount for the future.

One of the things I've frequently done since I got my Kindle is to download samples, including many of self published books from both sides of the Atlantic. I've been surprised by the variation in quality. Some are easily up there with commercially published books, while some contain enough typos and grammatical errors to make them unreadable for me. Others contain faults which confuse me because I can't work out, for example, whether the author really doesn't know how to set out paragraphs or speech properly or whether the formatting errors are arising in the conversion of a document to a Kindle book.

Now as a writer I'm probably more tuned in to errors than the average reader and I also know none of us are perfect. We all make mistakes, of course, but most of them should be picked up in the editing process. For me more than an odd slip in a Kindle sample will make sure I don't go on to buy the book, however promising the story itself might seem, because I know I'd find it too distracting to read.

Yes, I am a language geek and perhaps I'm a bit anal about this, but I think if a writer wants to self publish it's important to make the book the best it can be before letting it loose on the world. When you've spent months or years writing a novel, why not give it the polish it deserves? If a writer doesn't yet have the skills to edit or alternatively the funds to pay a professional editor, then maybe they are not quite ready to launch a book via the self publishing route.

But please don't think I'm knocking all self published books, because I'm not. There are some really good ones out there and just because a book isn't picked up by a mainstream publisher doesn't necessarily make it bad. It's just that when you read some samples on the Kindle you can start to understand what agents have to wade through on a daily basis and you can see how occasionally books with promise must slip through the net.

There's a lot to think about before deciding to self publish. Whilst I'd much rather find a traditional publisher for my work, if in the future I decided to go down the self publishing route I would want to educate myself on the pitfalls before rushing in.

Pink October

I'm sure you are all aware by now that October is Breast Cancer Awareness Month and right on cue, today I had to go for my first routine breast screening mammogram.

I did have a mammogram two years ago, when I had a cancer scare, so the procedure was familiar. I knew it would be slightly uncomfortable so I swallowed a couple of paracetamol in advance and was in and out of the screening trailer in less than ten minutes. By the end of October I should have the results.

Breast cancer charities are a cause close to my heart. About a decade ago I knew four women, who were all diagnosed with breast cancer within the space of a couple of years. All were mothers in their prime. Two of them are no longer with us.

When my close friend and godmother to Son 2, K, was diagnosed with breast cancer I bought a lovely pink ribbon brooch sold by QVC in aid of Breast Cancer Care. It was sturdier, and more expensive than a breast cancer pin. When K sadly passed away 7 years ago, following a recurrence of the cancer, I wore the brooch to her funeral. I pinned it to the soft pink sweater I was wearing under a black leather jacket. I remember fiddling with the brooch when we stopped in a service station on route to the funeral. By the time we moved with everyone else to the pub, following the burial, it was gone.

I like to think that it fell off in the graveyard when K's husband fell into my arms for a hug as we shared tears together. I want to believe that it is still there hidden in the grass, bringing me closer to K, my friend through university and beyond.

Every year I try to support a breast cancer charity in memory of K, who inspired me to take my writing seriously. If you do just one worthy thing this month, please consider doing the same. Buy a pin, or any one of the special breast cancer items which many high street stores and charities stock. Give a money donation to any cancer charity, if you prefer.

Breast cancer affects so many, men as well as women. It could be any of us next time, but I'm hoping that the test I had today will be clear.

The brooch pictured above, which I may well buy for myself, is available from Breast Cancer Care here.
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