Well, this relapse trundles slowly on.
I’m still wading through the days, clutching on to passing moments of clarity and tiny pockets of energy.
Thanks to Ocado, The Teenager is fully-stocked with his Special K and baked beans, his latest requests thanks to his new training regime (his muscles are shaping up nicely – very impressive, especially when compared to my flabby efforts).
The cat has her Whiskas and Dreamies. We have Bloo in the loo, milk in the fridge and blessedly, Ocado even delivers stamps. So on the surface, we’re doing just fine.
Take a look underneath and it’s a slightly different story.
The paperwork pile is a mess of unanswered letters. I haven’t taken my meter readings – too much effort to bend down into two different tiny cupboards with the torch on my phone to squint at the teeny weeny numbers.
The cobwebs are multiplying at an alarming rate. The vacuum remains silent. I’m still doing the bare minimum and it’s exhausting.
After waking today from a three hour afternoon kip (I mean, really), I tidied the kitchen then sat down. I opened the mail, then shoved it into a corner. Time for another little lie down. The smallest things take forever.
But I will not be beaten. I know I’m playing a tricky game. I keep on pushing myself, over and over again. It’s the thought of going back to those awful couple of years when I was coping with relapse after relapse. I just cannot return to those long, dark days, spent shut inside my house.
So I continue ‘as normal’. I still go to work (The Boss would totally disagree with this statement). What my colleagues don’t see though is my state of utter collapse when I get home. I still meet up with friends, ignoring my spaced-out state and heavy eyelids. I pay for it afterwards. But it’s worth it.
I just worry that I’m pushing myself a little too far. Apart from the relapse affecting my walking, speech and balance, I’ve now got a throat infection, making swallowing a real pain.
However, on a much, much brighter note, I had a wonderful phonecall from my MS nurse this afternoon. The MS team has recommended that I have a third course of Alemtuzumab (Campath).
There is light at the end of the tunnel. And this time, it’s not an oncoming train.
I can so relate to this. I don’t know the answer. I am inclined to push it because I don’t want to miss my life. But not the housework. Not worth it.
As for Alemtuzumab, I have had disappointing results and am happy you are getting another course but bummed to learn that it’s not quite the magic potion we’ve been expecting.
Yup, that’s just like me! I keep on pushing myself.
And yes, disappointed to need a third course so soon, but elated that it could just … just hold MS back for a little while longer. Fingers crossed.
Is Campath intravenous, does it have to be administered by a nurse……I could go on & on but can’t be bothered reading up on it…& I’ve just been reminded….TOLD….to have that shower !
Yup, it’s intravenous.
You have to stay three days (two nights) in hospital.
Just finished reading your book. Quite a few things I can relate to. Thanks for writing it. Biggest one though is that I have to keep going, can’t give in, when really there is a part of me just wants to hibernate. Fed up being tired and aches all the time. Just gotta do housework, job, wife, parenting, being a friend. Blimey life is busy!!!!!! I wonder if roller skates would help!!!!! X
That’s such a lovely comment, thank you! And I’m glad you could relate 🙂
Yup, I think MS is just about pushing back as long as we possibly can. I’m determined!
Like you, I’m utterly fed up being fed up in the house. No matter how dreadful I feel, I drag myself out. I can’t go back to two years ago. No way.