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.

More new meds

It has been a while since I have found the time (or energy) to post. Work was crazy for a while and and 12 hour days weren't unusual. This meant when I wasn't at work I was probably asleep.

Most symptoms have been relatively stable for a while. My numb right hand has finally begun to improve ever so slightly (I can hold a pen better, although irritatingly, still can't type) and my feet and legs are also getting most of the feeling back. My balance is no better (no worse either) and I'm still using two crutches. Last weekend I was out in the garden without a stick (how much can falling over hurt?) when I fell of the path and twisted my ankle. Ouch, how that hurt. It is still sore a week later.

The hot weather has been hideous. It has very badly exacerbated my fatigue which was already pretty hard to cope with. Fortunately I finally got the prescription for the new fatigue drugs... I started with Modafinil yesterday. So far, so good... although it is early days yet. Had a bit of a headache yesterday evening and killer trapped wind... but both are better than the leaden heaviness of the dreaded fatigue!

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.

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!