I'd like to tell MS... you are a learning experience. I have learnt to understand my body. I have learnt to listen to it, and understand and respond to it's needs. I've learnt to rest when rest is needed.
Friday, 23 September 2011
Thursday, 22 September 2011
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.
Monday, 19 September 2011
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?".
Thursday, 15 September 2011
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!