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!
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