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.

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Rude awakening

Woke up about an hour ago with horrible pains in the muscles of my legs, from the knees to the ankles. Not constant pain, just really severe shooting pain, the sort that if you were standing up would floor you.

This is a new (and unwelcome) development, which I assume (as I do when any new health problem appears) is being caused by my MS.

My steroid course finished a last week. Can't say there's any feeling back in my right hand, though it is a bit stronger... I think that is down to all the exercising with stress balls!

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Another course of steriods

The latest relapse has shown no improvement. I'd say, if anything, things have got worse. My right hand is barely functional now and even worse I keep dropping things (so far today my lunch and a pot from the fridge which then split all over the floor).

So, back to the steroids... it is the really aggressive course this time. Nearly £30 at the chemist to get all the required medication.

Twelve tablets for seven days, followed by six tablets for seven days and finishing with three tablets for seven days.

I addition the yellow tablet (which gets taken twice a day) to protect my stomach and the calcium tablet (also twice a day) which given the size is fortunately chewable. There are also my two regular tablets to add to the morning batch and a sleeping tablet at night as steroids rob me of sleep.

Phew! Hopefully the steroids will work and things will get back to normal soon - otherwise I may have to learn to become left handed!

Finally reached stage five?

I read somewhere once that when you discover you have a debilitating or long term illness you go through the same process as when grieving. The famous five stages of grief (outlined by Elisabeth Kubler-Ross) denial, anger, bargaining, depression, acceptance. 

For the longest time I was stuck at the first stage... denial. Because my MS was mostly remission and very little relapse for the first few years after diagnosis I pretty much ignored it and pretended to myself that it was all a big mistake.

Stages two and three happened pretty much one after the other when in 2007 I suffered a pretty major relapse which ended up with me being stuck in bed for around six weeks. At first I was angry because I was missing work and I was extremely bored; then I was making deals with my capricious health... you know the sort of thing; "I'll ease off the hours if I can just be well enough to go back to work".

Depression hit around a year ago when it hit me how long I'd been continuously using the stick and how  nothing seemed to have got much better in the longest time and therefore probably wasn't ever going to.

Now, finally, after so many years I seem to have reached acceptance. I know this because I sent of my application for a blue badge today.

Look no hand(s)....

Two weeks on from the steroids and nothing has gotten any better. I would, in fact, go as far as to say things have got worse. The loss of sensation in my right hand, which had only been affecting the little to middle fingers badly has now worked all the way across to my index finger and down my palm. 

The problem with this is really only inconvenience. I can't write properly because I can't feel the pen; I can't type properly because I'm a touch typist and I keep missing letters that require the left hand (especially 'o' and 'p')... I also can't do up buttons or jewellery... I can't use a mouse properly with the computer... it is all very frustrating.

I spoke to my nurse on Friday who is going to send me the protocols for the three week steroid course to give to my doctor. Hopefully this might have a positive effect...

My feet have also shown no improvement, which means that I'm still using the crutches to make sure that I don't fall over. Again the biggest problem with this is getting things done... try going to the supermarket with no hands!!!

No improvement

The course of steroids is happily finished. I got an extra night of not being able to sleep just to round things out - didn't sleep until 3am on Thursday morning and then predicitably felt utterly rubbish when I did eventually wake up. Lucky I had a day off yesterday!

I have noticed no improvement with the numbness in hands and feet. It is really beginning to be inconvenient now as the right hand side is much worse affected than the left... and of course I'm right handed. Can't type properly, can't write properly, can't do my hair and make up properly... the frustration!!!

In addition my circulation is very poor, this means that my feet (especially the useless right foot) are constantly freezing.