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.

Routine Nurse appointment

Today was my six monthly check up with the MS Nurse. I had to walk through a monsoon to get to the hospital after four buses left without me. I remarked that Area E was like Piccadilly Circus... it had been like the Marie Celeste earlier I was told. Apparently the weather must have kept a lot of people home first thing. 

My appointment was on time (unusual) and I managed to defer the blood tests until Friday... at which point I can go first thing and hopefully avoid the queues. We discussed my current symptoms and probable relapse and the Nurse agreed with me that it was probably down to the stress around my Dad dying and the terrible cold over Christmas. 

I declined a course of steroids on the condition that I go back to her in four weeks if I see no improvement.

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