Staying positive

Half-way into the first week of the second course of steroids... it's a bit like a spell... 12 for 7 days, 6 for 7 days, 3 for 7 days, finish.

Happiness is that the rampant insomnia has dialled down to a more manageable level. Happiness is that the stomach upset between the two courses has gone. Happiness is that the Omazeprole taken right means no more sore throat, chest and heartburn. Happiness is that the Gabapentine has done some good for the sensory abnormalities in my hands and feet.

Sadness is that I'm still in bed, I still have dizziness and I still can't walk properly... but one day at a time, eh.

Down in the Dumps

I am feeling like Tennyson's 'Lady of Shalott' today "I am half sick of shadows," said The Lady of Shalott. Although it is amazing how smelly and messy you can get just lying in bed - I am distinctly less Titian and flowing than Tennyson's heroine is generally portrayed!

Since my hospital visit last Wednesday I haven't been out of the house - neither have I had the energy or inclination. Apart from bathroom trips; occasional visits downstairs for food, TV and cat-time - I actually haven't much left the bed.

The five day course of Methylprednisolone steroids have run their course (thank goodness) - so the constant low-grade headache and sore-throat are gone too. I had forgotten that the instant reaction to the end of the course is a monster upset stomach - so that was a nice surprise today. Nice neuropathic burning pain in my hands and lower arms has joined the roster of complaint - lucky I still had some Gabapentin left and the Nurse says it is OK to take it!

Now onto the endless (seemingly) three week tapering course of Prednisolone. Something better start working soon. Right now I still can't walk (lurching and staggering rules!) - this is taking forever to type (but is easier than the row I had with Microsoft's Ease of Access Speech Recognition). The foregoing means I can't go to work - couldn't be worse timing as a colleague has just left and we are short staffed (again)! Add to that the mind numbing boredom - fed up with movies, too tired for Xbox, fed up with reading - used up the internet. I think my brain may begin to stagnate.

Twitter just depresses me as it reminds me that the world is busy doing things whilst I have a patch of sky with a tree to look at. Yes, I am feeling sorry for myself today. 

I am lucky that I have my family; the Better-Half nurses me and waits on me (even though he's got a cold); my Mum calls me every day; and Kitten-cat is doing his best to be my constant companion (even if he is mostly asleep!).

As Buffy sang in the famous musical episode 'Once More with Feeling'... "Where do we go from here?".

Relapse (again)

Last week I saw my Neuro for our annual routine appointment. His final words were "See you in a year, unless, God forbid you have a relapse". Way to tempt fate.

On Sunday a relapse began. I felt like a puppet whose strings had been cut. Every tiny thing took too much energy (it took forever to eat dinner as lifting cutlery to my mouth was exhausting). The Better-half wondered if it was just a reaction to my busy Friday... but funny how you get to know your body when you have MS... and I could tell it was more than that.

So, on Monday I rang my MS Nurse who requested I come and see her (and the Neuro) on Wednesday. You have to get used to a lot of things that once would have seemed undignified  when you have a long term disease, as taking a urine sample with you to the hospital is standard. No toilet trips after 8pm the night before... two pints of water and two cups of tea and my bladder was still extremely (and predictably) un-cooperative.

Unsurprisingly the suggested course of action was steroids. "Do you tolerate steroids?" my Neuro asked, "Yes", I replied, "They just don't usually have any effect". On this basis he gave me a prescription for the two courses mehtlyprednisolone - oh I love your vile blue taste - for five days and then tapering course of prednisolone. I shall rattle again. Already worrying that I'll get a chest infection (which has happened before) as it is sore when I breathe too deeply. Fix one problem, get another.

The Better-half, the medical professionals and I had another conversation about Tysabri - both MS Nurse and Neuro being concerned that unless more aggressive therapies were considered my disability would progress. They were basing this on my visiting in my wheelchair yesterday, but I pointed out this was just because my legs had given out and I was too fatigued to walk to the hospital and it was my intention to not make this a permanent arrangement. They gave us leaflets to take away and the Better-half and I will have some risk/benefit analysis to do over the next weeks before I see the Nurse again.

Sent the Better-half off to the pharmacy whilst I chatted to the Neuro's Tysabri poster-girl. Have to say - she looks good on it. Three and a half years and not a single relapse. She kindly pushed me down to the pharmacy where the Better-half smashed by own waiting record (70 minutes) with a massive 90 minutes.

And so home. Lunch, steroids and peach juice (which is the only thing which begins to combat the taste of the tablets) and then fell to sleep for several hours from the exertion of being pushed around in the chair (yes that is how bad this relapse is).

Had to have a conversation with my boss in the evening about the current situation. I had emailed him every day to let him know what was going on - he was hoping bed rest would have me back on my feet. Had to go into worse case scenarios (steroids and the time they take to work)... bad time to be sick - work is busy; I am hoping maybe when the steroids start to kick in I can at least work from home. Right now that just can't happen as I'm most comfortable lying down trying to use the laptop - unbelievably slow as I keep stopping for rests. This post has taken half an hour!

Not even the MS this time...

Yesterday I had a pain in my lower abdomen. I've had it before and been intensively investigated including an intrusive ultrasound - not like the sort you have when you're pregnant. They never found what the problem was because tests take so long to organise it had always gone away again by the time the test came round.

Today the pain was still there - and much sharper than normal. The thing that worried me was that it was located just about where NHS Direct told me my appendix was. My GP surgery (as normal) couldn't give me an appointment until 12pm (how is that possible when their phone lines were down?!). Off I went to A&E.

I am a regular visitor to the Queen Elizabeth Hospital as an outpatient but I'd never been to A&E before. A long (long) walk down the side - almost back to Cemetery Lane where I'd come from!

It seemed quiet, not at all as jammed as I expected. I gave my details at the desk... solved the mystery of the wheelchair delivery people not being able to contact me (the hospital had a very old mobile number)... and took a seat. I had my Kindle as whenever I've visited Eye Casualty Units I've been there for hours. Not very long later the PA system asked me to go to the mobile unit outside the entrance. 

Delightful bright, airy (and above all clean smelling) portakabins. Now I did settle down and waited quite a while. I eventually saw the doctor with his amazing gadgets (he pointed a laser at my head for my temperature and took my blood pressure with a tiny little finger cap). Prodded and poked. Not appendicitis, but if it got worse or I developed a fever (etc) then come back. Strange thing - as I was leaving I apologised for wasting his time (was feeling a bit guilty for my over-reaction) but said I hadn't been able to get an appointment to see my doctor. You did, he told me, just not at the surgery. I thought I recognised him!! I congratulated him on his excellent memory, he told me it was the unusual name.

I kept the Doctor's appointment as I was now wondering if it was some sort of infection. The GP did some more poking and prodding and agreed that it wasn't appendicitis. Then he asked for a urine sample. Whenever this happens my bladder goes on strike - so he told me to bring one back later.

Two cans of coke, a pint of fruit juice and three pints of water later I eventually did. No infection I was told. Take paracetamol if it helps and rest. So I am.

Wheelchair debut

The wheelchair and I had our first outing yesterday. Mum and I went to Bluewater. Apart from the occasional inconvenience of being effectively the height of a small child I managed well. Mum gave me some pushes when we were in the malls and I pushed myself in the shops. I'm particularly proud of my turns!

The best thing though - usually a shopping trip like that would have left me wrecked... but today I still have spoons!

Disapointment

It was my regularly scheduled appointment with the MS Nurse today. I had high expectations though. Last month I'd gone for a specific blood test and an MRI.

The hope was to start taking Tysabri which is supposed to be about 40% more effective than the Interferons at preventing and alleviating relapses. My reservation at had always been the risk that goes with Tysabri of PML (a brain disease) - although recent wisdom is that there is only a 20% chance it can kill you, if contracted, it could still leave you more disabled than when you started. The positive news that had started the round of tests is that recent research had determined that if you had not been exposed to the JC Virus in earlier life you can take Tysabri with no risk. So I had the blood test (and an MRI).

The bad news was that my test results were positive for the JC Virus; which meant that I didn't want to to continue with the Tysabri route. I had all but convinced myself that the test would come back negative - so I shed a little tear on my way home. There was further bad news in that the MRI showed 'a few' more lesions than the last I had done back in 2002. Happily my Nurse's computer doesn't have the software to show the scans so I wasn't forced to sit and look at slices of my brain as my Neuro made me do last time, gross!

All in all a bit depressing. For an awful long time my MS was mostly 'benign' (yes, I know, I was lucky!) and the relapses I had weren't too troublesome - a little numbness here and there or an attack of Optic Neuritis. It was only the two really bad ones that lasted about six weeks with the vertigo and total lack of strength in my legs that finally got me through denial and convinced me that I really did have MS; up until that point I still though it was one big mistake!

The problem is now that every relapse comes and goes - but like the frog in the well I go two steps up and one step back; nothing ever quite gets better.

There is another hope in Fingolimod - it has been approved in Europe and is currently going through the NICE process. The problem for the drug, it would seem, is that is costs almost twice as much as I remember being told that the injections cost. More effective than the injections although less effective than the infusion it does provide hope.

Wheel-chair arrives

The wheel-chair arrived on Friday. So far I've sat in it in the living room and that is about it as I was under house arrest this weekend getting some rest.

It is alarmingly large and doesn't fold up nearly as much as I'd hoped. I'm somewhat doubtful about my original plan of keeping it in the boot of the car.

It will be a good thing though. Every time I'm going somewhere that needs a lot of walking input I don't have to think about it any more.

In  good news, the Optic Neuritis seems to have gradually got better and without me realising it has now gone. Standard six weeks with attempted (failed) steroid intervention.

My prescription ran out this week. My doctor's surgery decided (again) to ignore the stamp addressed envelope I enclosed with the repeat request. This meant that the muscle relaxant tablets that help me sleep through my legs at night ran out and I had a few bad nights sleep. The worst being the one where I got about three hours... and still had to get up and go to work in the morning. The prescription has now been filled and all is well at bed time again!