Award

Thanks to Herrad who sent me this award.

Steroids - days 2 and 3

I'm now in the middle of my five day curse (I mean course) of steroids. The taste of the damn things is still vile and stays with me pretty much all day (well at least to dinner time). In addition a rather unpleasant side effect is that breathing has become as if on a cold (bitter) winter's day... every time I take a breath in my trachea is sore. Hopefully this time I won't actually get a chest infection, which is what happened last time I took steroids.

I haven't noticed any improvement yet... but I guess that it is early days. Not being able to type and write properly is driving me up the wall... as is the lack of manual dexterity... I managed to peel my knuckles instead of the potatoes the other night!

Still, taking it easy of the weekend has been great. Apart from a bit of pottering in the garden (where it doesn't matter if you fall over) I've not been anywhere or done anything. Not looking forward to the journey to work with the crutches tomorrow.

The truce is over

MS and I have a deal - I don't bother it and it doesn't bother me (although I'm not sure that sticking my thigh with an inch long needle once a week counts as 'not bothering it'!). That's the theory anyway. The latest period of remission had been lasting for a while - and I was feeling quietly optimistic for 2010. Fool!

The first sign that something was wrong was in the middle of February when I kept getting these waves of dizziness. Not exactly dizziness - it is hard to describe the odd feeling that flashed through my head about two dozen times a day. Nothing else happened and it went away, dodged it this time I thought. Fool again!

Then about a week ago I noticed that my feet were numb... pretty much all the way from the big toe to the little toe on both feet... making it very hard to walk. And the same time my legs were feeling week. The stick was no longer keeping me on the straight and narrow so I purchased a pair of crutches.

At the same time I also lost feeling over most of the right hand side of my body. Not much inconvenience except for my hand - I'm right handed (of course!). I can't write properly as I can't hold a pen and I can't type properly... I've been a touch typist for fifteen years and I've forgotten how to type any other way! That is why it has taken several days to complete this post!

On Monday I spoke to my MS Nurse and she gave me an appointment for Wednesday. I went in Wednesday (my aim, to get steroids). Of course the first thing that happened was my bladder got a fit of nerves and I wasn't able to give a urine sample. She called in the Neuro to write the prescription; who was in excellent form, he scribbled the 'scrip for the vile blue steroids and even a stock of sleeping tablets high-fived me and was gone. One problem remaining. Not allowed to take the steroids until the urine was tested for infections. I spent a further half hour being fed water by the nurse until I managed to fill the cup... only to be told that I could take the pills as the sample had to be sent away for testing!

Back to work then... having already had a lecture from the Nurse about easing off the hours etc. Good thing that the next day I got a call saying the sample was clear and I could start the treatment. 

Which brings us to Friday morning. Tablet city. Omeroprazole before breakfast (to keep the stomach safe from the steroids) - Methylprednisolone after breakfast (five vile blue tablets)... how could I have forgotten how bad they taste?!?! Next regular medication - Loratadine to stop the itching and Citalopram (because you have to take it for six months after you start feeling better). Now I rattle.

Last night I also had to take my Avonex. This was an excellent experience (for once) as this week was the right thigh which is pretty much totally numb! I then took two paracetemol and the Zopiclone so thoughtfully prescribed... and slept clear through to 9am (almost unheard of on an Avonex night).

I've just swallowed this mornings tablet pile and am once again tasting blue steroid every time I breathe in. Still, hopefully it will work some!

Some Awards

These were given to my by Herrad - one of them all the way back in 2009. Thank you Herrad... you'll find Herrad's blog in the blog-roll on the right, along with all my other favourite MS-related blogs.

Slightly Odd

I don't see a lot of my feet in the winter. It is cold and wet and so I wears socks (even to bed) and forgo my summer habit of flip-flops. This meant that I hadn't noticed something very strange has happened to my left foot.

The last two toes (which suffered from total loss of feeling for about the first half of last year) no longer are stretched out but curled permanently under. No wonder my feet hurt!

Ouch!

The problem with winter is that it is cold and wet. The problem is that the grip is wearing out on my shoes. The problem is that I keep falling over. Once a week in the last two weeks. The first time I toppled off the kerb; it was wet and my shoes had only passable grip - the problem was The Stick is on my left and I fell to my right. Twisted my ankle and spent all weekend keeping the weight off.

The same thing happened this weekend... Friday, I wasn't really paying attention to my walking and slipped and fell - again The Stick is on my left and I fell to the right. Twisted my ankle (again) and had to buy an elastic bandage on my way to work. That helped and sitting down the rest of the day means it is only a bit stiff now.

In addition there has been a lot of random pain the last three weeks. Anywhere there is a muscle appears to be fair game. Hot water bottles soothe but don't cure; same for pain killers. Sleep and a large glass of wine appear to be the best solution!

I'm really looking forward to the cold weather. My internal thermostat is busted beyond belief. I seem to spend the whole time sweating and melting. I'm flinging open doors and windows all over the place. If this carries on once winter hits for real I will definitely have to take it to the Doctor.

Can you tell me where your disabled toilet is?

Disability comes in all shapes and sizes. Disabled people in wheel chairs, the ambulant disabled, those with vision difficulties, those with hearing difficulties... the lists are long and varied. The thing a lot of people do have in common though is the need for a toilet which is larger than the average cubicle in public buildings, often additional rails and support, and the need for the toilet not to be up several flights of stairs.

Personally I have difficulty walking, mostly because I have trouble with my balance. Stairs are therefore particularly hard for me (I also have creaky knees, which is just me getting older and nothing to do with the MS!). I also have trouble with my bladder... I couldn't live without my Tena Lady pads that's for sure.

On Friday I went out for lunch, it was a work affair - we went to a very smart restaurant in Soho. Towards the end of the meal I went off in search of the facilities. It wasn't a big place and it was immediately apparent that they weren't in the main restaurant room. The Gents was just off the bar near the coat-check. The Ladies was up a flight and a half of stairs, across and landing and down some more stairs.

After lunch we went to a nearby pub. Again it was a small place... again the Ladies were up a flight of stairs on the first floor.

This is not the first time I have had this problem in older establishments in central London. Because there is a requirement only to make 'reasonable adjustments' smaller and older buildings do not have a dedicated disabled toilet on the ground floor and the facilities are usually located upstairs or in a basement to maximise usable floor space. I have been to pubs where a member of the bar staff has guarded the door so that I can use the Gents on the ground floor, I have been on trips down service corridors to doors without locks... and when all else fails I have trudged up and down flights and flights of stairs. I am fortunate to be able to manage that, there are many who can't.