Lyric:- 'Look now, look all around, there's no sign of life' - Le Bon, Rhodes, Taylor, Taylor & Taylor.
Song Choice:- I've always enjoyed this early Duran Duran track and the lyrics reflect where I've been this past few days as it's not been an easy time to say the least. Realising that I'm seriously ill again, and worse than my previous internment came as no surprise. Looking in the mirror my eyes just looked frightened and I'm sure I am worrying the life out of all of those near and dear to me right now.
Five days on and a lot of tests, retests, lumbar puncture (they really hurt) and five lots of IVIG and I'm safe. My Guillian Barre Syndrome is in fact the more Chronic version CIDP, yep the scary one I told you about the other day that I didn't want. My protein level in my spine was very high which is the killer blow. It's still to be rubber stamped but I know...
The prognosis? Well your guess is as good as anyone’s! It's true as no two cases are the same. Unfortunately the syndrome is long-term and not associated with good outcomes – some never recover at all, most have regular intervals of around 6-8 weekly cycles where they take on more IVIG, peak, crash and repeat… either making marginal improvements each time or getting progressively weaker until the treatment doesn't do it's 'pick me up' trick.
I'm just glad to be out of the jaws of the relapse. Five days of bed rest has given me lots of space to prepare myself for the next episode of my CIDP horror box set and with the main players back at the hospital tomorrow, we can decide where and what to do next for the most optimum result possible.
So far, I'm feeling stronger in my arms and my legs are back moving when I'm lying flat but not strong enough to hold me up. There's a trip to the MRI scanner planned (which they will need to knock me out for 'cos I'm claustrophobic) to check I don’t have any additional back problems, and then physiotherapy, more observation and more electrically charged needles coming my way.
Then I'll know exactly what I'm in for, well for the near future anyway. Until then, there's another little Master or Miss Coleman due next week to draw fire from the CIDP fallout that clouds each day and hopefully provide a ray of sunshine into our world.
Enjoy your Sunday folks and send me a photo if you go somewhere picturesque - the pic at the top was taken above Avebury last year and is one of my favourite runs which you'll see next weekend at Race to the Stones.
It's my kinda Planet Earth!