Time off to recover after Campath is a tricky thing.
Viewed in a certain light, it’s an excellent chance to slow down, take stock and make the most of the enforced sofa-rest, cushioned by a pile of books, a stash of chocolate and box sets.
In normal life however, without my very own Mr Darcy, the washing piles up, The Teenager has started his A Levels, the cat insists on bringing home an endless parade of headless mice and Ocado have emailed, imploring me to book my Christmas Delivery Slot, NOW.
In between bouts of complete and utter exhaustion, I’m battling to keep the show on the road. Plus I’m trying to think laterally and use the time off not only to rest but also to get ahead, i.e. work my way through the entire University reading list for next term.
I had all the books delivered, settled down, unwrapped a bar of Green & Black’s and prepared to be inspired and transported to wondrous new worlds.
Bad idea. I checked the syllabus. I checked the books. I emailed the tutor. ‘New and Experimental Writing’. Let’s just say, I have no idea what Gertrude Stein was taking when she wrote ‘Blood on the Dining-Room Floor’.
However, I ploughed through, ticked her off my list and moved on to the next one. Excellent. Somehow, I have moved into a Poorly Routine. I get up early when I have most energy, do something outside the house, get back by lunch then snooze through the entire afternoon. Then, I wake up, cook dinner, snuggle under my blanket again and wait for bedtime. It’s been working. For a while.
Two days ago, same routine. I got up early. Then fell on the floor.
Oh. Painful doesn’t begin to describe it. I was in agony. I could barely walk and somehow made it downstairs through a combination of swearing, clinging on to the handrail and thumping. By some bizarre coincidence, I had booked in to see the chiropractor, more for The Teenager than for me (scrums, head-locks, dodgy balls).
Long story short, my psoas muscle is in spasm. The pain goes through my pelvis and groin and out through my lower back. Walking is excruciating. According to the chiropractor, it’s all due to my sudden inactivity. Lol.
When I told my MS nurse I planned to return to work ten days after Campath, she laughed, then said, ‘no you’re not’. Ok then. Quick call to The Boss to explain the situation. His reply? ‘Didn’t notice you were off, Half-Shift. Or should that be Sick-Note?’
Charming.
Very sorry to hear it’s a bad time for you at present and I hope it all gets better sooner rather than later.
I too told my boss I’d be off for two weeks, the treatment week and the ‘recuperation’ week. I eventually came out from under the bus that had broken down on top of me, around two months later and only managed the odd few hours/day at work for the month after that. Finally four months after treatment I’m getting there.
Alemtuzumab is such fun!
Hello!
So glad to hear it’s not just me :-). I think I was hugely ambitious to return to work tomorrow and totally underestimated just how tired I would be. I thought they’d get easier with each course, but they seem to be harder!
X
Hey girl, take care of YOU and the Teenager and go back to work when you’re able! Not before. Enjoy your Green & Blacks chocolate, the rest you need, your sofa, your remote and more. Best wishes, Judy
Thank you!
You’re absolutely right. No point going back early and ending up with a relapse, or exhausting myself even more than I am already!
X
So glad that you are back and writing. Have missed you but recognised in the silence that things were not easy. I am sure that out of this period will come a wonderful novel from your creativity. Your openness is like a breath of fresh air.Look after yourself.
Nanette
Thank you so much!
I’ve really missed blogging but have had a brain like Swiss cheese since hospital 🙁
Hopefully now that Uni starts this week, I’ll have some ideas buzzing around and got to think of my dissertation!
x
Very glad to see you back blogging ,hope your feeling better
I was recently diagnosed with ms during my last pregnancy earlyer in the year , I’ve already had one round of lamtrada and am due for another early next year ,
thank you for sharing your experiences , it helped me in the hospital to read through and understand other people are going through this too , I still keep an eye on how your doing , just wanted you to know you are helping others xx
A lovely comment to receive, thank you! And good luck with your next round.
Before my first course, I read up about other people’s experiences and it really helped.
So far, so tired. Very bizarre how much it’s hit me this time. Mind you, pulling my muscle didn’t help matters, lol.
x
Hi
I’m new to your work and read your book very recently (which I thought was great). It’s such a pleasure to read your blog and to see that humour and spirit shining through even when things are bad…you are truly inspirational (and I’m not understating). I was diagnosed over 10 years ago and it’s only recently ‘got bad’ but still kind of manageable!!!
Thank you so much and thank you for reading my book! Glad to hear you enjoyed it 🙂
Sorry to hear your MS is changing and I really hope it stays manageable. Stay strong!
X