Relapse Indicator

I have two rules about baths - first they should be deep and second they should be hot. As hot as you can manage - hot enough to turn your skin scarlet.

This also is an invaluable relapse indicator, as I am one of those people whose symptoms are exacerbated by the heat. The stressful time before Christmas when my Dad died coupled with the dreadful cold I had over Christmas were prime relapse triggers. I have been suspecting for some time as my feet and hands have got more numb (they were almost better too). Unfortunate by product of numb feet more falling over and more bruises... hence desire for long hot arnica filled bath. Sadly after five minutes it became apparent I also have a dose of ON in my left eye as the vision had dulled to the extent that I could hardly see out of it. Ten minutes in the cold of the pink room and the landing everything has calmed a little. The itching on hands and feet has stopped (how can they itch when they are numb?) and the eye is back to only dimming the colour red. Happily I am seeing my Nurse a week Monday so we can discuss it all then.

Talking of baths, I also have two preferences (they cannot be classed as rules) in respect of bathing - first baths should be lengthy (my preference is for wrinkly skin and the water turning cold) and second they should be cat free. Tinker's fascination with water makes this hard, if he's locked out he'll scratch at the door and pull up the carpet and if he isn't locked out he'll let himself in and try to join you in the bath. Length is curtailed by the unpleasant relapsing effect on my symptoms.

I'm a Spoonie

Jodi shared this on her blog ages ago and I starred it in Google Reader to pass on and then forgot about it (as I'm inclined to do unless I write myself a note!). It explains what it is like to live with a chronic and debilitating disease, but most importantly also one that is often invisible.

The Spoon Theory written by Christine Miserandino

Legs and eyes

I've not had much time to write recently. Work has been busy (of course) and my Dad has been poorly in hospital. This probably hasn't helped my physical situation which isn't terribly good right now.

About six weeks ago I noticed that every evening I was getting a horrible tense feeling in the muscles in the backs of my legs around my knees. The only relief to be got was by constantly stretching and moving my legs. This drove me mad and Rich mad. So I saw the doctor who wrote me a prescription for Diazepam. Wikipedia informs me that this is actually Valium - I guess that explains why the most notable effect was sending me to sleep.

My Nurse recommended that the next stop should be Clonazepam (related, the clue the doctor told me being in the end of the name). As I was rushing off to see my Dad in hospital yesterday I never got a chance to pick up the prescription so I guess it will be next week before we find out if it is any help.

Just to put a cherry on the cake (as it were) I noticed yesterday when I was rushing about a distinct lack of the colour red... first symptom I get of an attack of Optic Neuritis. Excellent. Nothing to do but wait that out or ask for another course of steroids... which it is quite possible I have had enough of this year already!

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.