Steroids nearly run their course

First I had the horrible 5 day course of the blue steroids... the ones that taste vile. That made no difference. Then I had the three week tapering course (which will finish on Wednesday). The little red pills... twelve for seven days, six for seven days and three for seven days. An impossibly large amount of tablets for the pharmacy to count out!

Nothing is fixed. I still have ON in my right eye. It is still annoying as it makes it hard to use the computer (amongst other things) and gets worse when I do anything or move my eye too far in any direction.

These are two pictures which attempt to illustrate the effect of ON on my vision. Left is normal and right is disturbed.

My feet still don't have any feeling in most of them - and my toe muscles have taken a permanent vacation. I just bought some 'spa' type-thing made out of soft rubber - like a fancy thing that you put between your toes when you paint your nails - but it goes all the way round so straightens the toes a bit. Hopefully it might make some improvement.

The bad toes and balance means that I keep tripping over myself. I don't notice most of it as I haven't got much feeling in my legs. I have to be like a leper and keep checking for cuts and grazes! That one really hurts as it is a bruise as well as a cut. Ouch. You can see all the scabs and scars - it is always my right foot that trips up my left foot!

The last complaint is my right hand. It has got better since it was at its worst - but it isn't cured. Again the muscles just aren't working properly. Of course, I'm right handed... so it makes it hard to write and also (as a touch typist) hard to type. It makes it hard to do a dozen other things too - buttons, earrings, tying back my hair... no manual dexterity is very irritating! Not only no strength, but not much feeling - I feel like I'm wearing a glove all the time!

Right. Complaining over. On the plus side I've been keeping up my 'do anywhere' exercises and I think it has been helping my legs. On the further plus side - the wheelchair (for long journeys and things) should also be arriving soon.

Here we go again

The five day course of steroids has made no difference to my ON. Off we go on the tapering course then... 147 tablets (and the rest) over the next three weeks. Fingers crossed!

Limitations

It seems that my limitations are more limited than I previously thought. I had a busy weekend... on Friday I was at St Paul's Cathedral; on Saturday I had to take the car to get its MOT (which I had forgotten about and the garage rang to remind me); on Sunday it was off to see my Mum for Mother's Day (lucky my brother was driving). No rest at all really.

And last night and today I suffered. I woke at 3am feverish... drenched in sweat but freezing cold. I asked Rich to get me a hot water bottle, at which moment he pointed out that I probably wasn't fit for work. As my hands were also in agonising pain I couldn't see how I would hold the crutches and was forced to agree with him. I went back to sleep with my hot water bottle... and didn't wake again until nearly lunchtime. I dozed for most of the rest of the day until about 3 or 4 when I realised that I felt much better. I was no longer feverish and my hands were a bit better (although still rather claw like).

The Law of Spoons must be observed. Out of the three days that form my weekend if two of them are to be filled with activity one of them must be filled with sleep and bed-rest... otherwise disaster and flare-ups of old symptoms will follow. As the meercats would say "Simples".

A new one

This time the eye problem isn't Optic Neuritis but rather Retro-bulbaric Neuritis which is a very specific form. That's the science bit... I was lost there. It means that instead of the usual visual disturbance with no pain I have a lot of pain with no visual disturbance.


It took an afternoon at A&E at Moorfields Eye Hospital to establish this. I'm not exaggerating. I was there for over four hours!


I'm off to bed now to take a cocktail of drugs which I suspect will knock me out until morning. I'm hoping they'll stop me waking up in pain when I move my eye in my sleep at any rate.

ON and other things

My suspicions a few weeks ago that I was getting another dose of ON seem to have been bang on. This time I don't have so much visual disturbance (which is useful) but I have terrible pain behind my right eye. Most of the time it is actually only a dull ache - unless of course I move my eye at all. You wouldn't believe how much you move your eyes in a day.

There isn't much to be done I suppose. It is probably too soon since the last dose of steroids to take another course - just have to hope that it is a short attack.

In addition the car broke down yesterday and I had to schlep around Charlton and the Greenwich Peninsula. No spoons left today, so have taken to my bed. Really disappointing as I had big plans for this weekend.

Not much improvement

So I took the week long course of steroids, complete with peach juice antidote. I can't say that I have noticed much improvement in terms of either fatigue or muscle control in my legs or balance. 

The whole situation was messed up a bit though; I finished the course of steroids on a Wednesday. On the Thursday I got food poisoning, followed by a stomach bug which laid me out for the whole weekend. The only positive was that I did lose half a stone through the whole sorry affair.

The Access to Work has been a blessing. I have no idea how I'd have managed without it. I've had to go to a couple of meeting during the day in the last few weeks which means taking the tube and that has been pretty exhausting.

It is annoying that Amantadine stopped working for me and that Modafinil has such a detrimental effect on my sleep patterns that there is no point taking it. I am having a massive problem finding enough energy to get through the day at the moment... lucky, I suppose, that my job is keeping me at my desk pretty much all the time now and I don't have to go out much for site visits or meetings.

Here's my current paradox. I cannot feel my feet at all, certainly not the soles of my feet. However, when I got out of my nice hot bath they were itching to the extent that I had to smother them in E45 anti-itch cream. How can they itch if I can't feel them?!

New reality

Last weekend I got a bit carried away with myself. I forgot the rule of spoons. The taxi journeys to and from work have revolutionised my life. I have so much more focus and energy. 

So... on Friday my Mum came to visit and we went out to lunch and went shopping and I introduced her to the kittens. That was quite a lot of spoons used up.

On Saturday I made my annual pilgrimage to the Valley. Mistake 1) as I was sitting in regular seats I only took one crutch as I was worried about room and also about standing around drinking beer before the game with no hands. I realised halfway down to the ground that this was going to be tough. That was going downhill. It was confirmed at the ground that my legs were pretty much giving up. I sat through the whole game only standing to applaud the new manager and the goals. Going home was horrendous. I realised about 10 feet from the ground I really couldn't make it. Rich pretty much had to drag me home. It took forever and a day - certainly a lot longer than it takes him on his own!

I spoke to my Nurse in the week and agreed that even though I'd vetoed the idea at our appointment the previous week maybe a course of steroids would be a good idea after all. So, here's me and another course of Medrone (thank goodness peach juice, the only cure for the vile taste of the vile tablets came in the shopping today). During the same conversation my Nurse suggested that a wheelchair might be in order... she started the sentence with "I know you won't like the idea..." - but after my experiences of the weekend I took no convincing. So wheels have been put in motion as it were (pun not intended) and in a few months I should have my own wheels.

Part of me hates the idea. I've always resisted anything that takes away my independence or gives obvious sign of my disability. This has always been a mistake. I should have agreed to nearly everything from DMDs to Access for Work a long time before I did. So, this time I am putting my pride in my pocket and gratefully accepting the help offered.