An award

Herrad recently gave me this award, thank you! In turn I am passing this award to Jodi.

Keeping a diary

When I saw my Occupational Therapist last week she gave me a 'fatigue diary' to keep. It is split into lines for each hour of the day and you have to keep a note of what you were doing, how much fatigue you experienced (on a scale of 1 to 10) and any other notes (what you ate, how much sleep you got the night before, etc.).

I have found this quite easy to keep up with but, as she promised, it is a bit like Groundhog Day - there hasn't been much excitement in my life the last week!

Annual Neuro

September means that it is time for my annual check up with the neurologist. The visits always follow the same format - he runs through all the things that I might be having trouble with (speech, swallowing, bladder, bowels)... we discuss any relapses (and associated courses of steroids in the last twelve months)... I complain about the things that are really bothering me - memory difficulties, numb hand, modafinil keeping me awake.

He suggested to me that on the topic of waking early in the morning that this could have other causes than the drugs... depression for example. I pointed out that I had suffered from depression, knew what it was like and categorically could confirm that wasn't currently one of my problems.

He also commented on my crutches (rather than the one stick) I told him it helped me balance better and meant I could get around faster - he did agree with this when I was leaving!

We then had the usual conversation where he tries to get me to take Tysabri and I refuse. I know heaps of people take it and it sometimes works for them but the one in however many thousand risk of the brain disease is too much for me to worry about. He then went on to suggest a different solution  - a chemo drug I think it was which has a one in something hundred risk of causing leukaemia or heart disease. I did comment that this risks were even worse and that I'd stick with my Avonex for now.

I was a bit depressed at the end to hear that my EDSS score has gone up to 6.5 which is a half a point increase since this time last year.

Postive action

Today I had the much awaited visit from the occupational therapist. We spent about an hour going over just about everything... from my MS diagnosis to symptoms and lifestyle. It was a very positive meeting and she has lots of suggestions to help - the one I am most keen on is managing fatigue without taking drugs. We also discussed starting some sort of exercise regimen and she gave me some useful weblinks to look at.

I am going to look into 'Access to Work' to see what can be done to make the (many) hours I spend at work easier.

All in all I was left feeling that life can (will) be much more manageable than it is now.

More new meds

It has been a while since I have found the time (or energy) to post. Work was crazy for a while and and 12 hour days weren't unusual. This meant when I wasn't at work I was probably asleep.

Most symptoms have been relatively stable for a while. My numb right hand has finally begun to improve ever so slightly (I can hold a pen better, although irritatingly, still can't type) and my feet and legs are also getting most of the feeling back. My balance is no better (no worse either) and I'm still using two crutches. Last weekend I was out in the garden without a stick (how much can falling over hurt?) when I fell of the path and twisted my ankle. Ouch, how that hurt. It is still sore a week later.

The hot weather has been hideous. It has very badly exacerbated my fatigue which was already pretty hard to cope with. Fortunately I finally got the prescription for the new fatigue drugs... I started with Modafinil yesterday. So far, so good... although it is early days yet. Had a bit of a headache yesterday evening and killer trapped wind... but both are better than the leaden heaviness of the dreaded fatigue!

Remember there are limits...

I often say (as a lot of people with long term health problems do) that I won't let it dictate how I live my life. This was reflected at the weekend when I met up with a school friend who I hadn't seen in the best part of a decade.

In honour of our meeting in Central London I decided to abandon the crutches in favour of one stick (seriously - have you ever tried to marshal crutches in crowded places?!). I also decided to take some 'tourist time' whilst waiting to meet my friend.

Soho, Covent Garden, the National Gallery and Whitehall. By the end of the day I could barely stand. The muscles in my feet were seized up and my legs were pretty wobbly. Finally returning to North Greenwich I fell into a black cab to complete my journey home.

The limits now seem not to be 'listen to your body' as I had no warning signs that I was over-doing it. The limit now is accept MS and adjust. Maybe it won't dictate how I live my life... but it will demand some concessions.

The bad and the good...

Let's face it - having MS sucks. I remember once, years ago when I was not long diagnosed, the MS Society sponsored the horoscopes in the paper one day. Every star sign had something along the lines of "today will be unpredictable".

That is the bottom line with MS - you don't know what is going to happen next... what fresh way your body is going to betray you.

This week I've been back in bed. I woke Tuesday with horrible spasms of pain in my legs. This lasted into Wednesday. I thought things were getting better so I decided to get up. Mistake. Pain came back.

At the same time my numb right hand, which I thought was getting better, is pretty much completely numb and useless again.

Have been resting and sleeping trying to get better... I really need to get back to work.

Tonight, being Friday, is injection night, time for my weekly beta-interferon dose. I've dosed up on paracetmol (it is a cruel twist of fate that I am allergic to the far more effective aspirin and ibuprofen). I'm hoping that the side effects are helping (if not causing) the new crop of symptoms; extreme dizziness, which I can manage by lying down; and bizzare sensory disturbances, I feel like bugs are crawling on me. I have gone as far as to try and brush them off... it is freaking me out as I have a bit of a bug phobia!

That all is the 'bad' from the title. The good (yep, you can just about find a positive in MS) is the amazing people you meet online through MS blogs. Catching up a weeks worth of reading I realised that there are some truly inspiring people out there.

I have no idea how to post links in this post using my iPhone. Tomorrow I'll post from my laptop and include them. Reading about other people's experiences makes you feel less alone: thanks to Herrad, Carole, Amelia, Jodi and Steve (amongst others) for sharing your lives.

- Posted using BlogPress from my iPhone