Category Archives: Multiple sclerosis

Hanging on in there….

Anna
Hello, cheeky not rude, I hope you understand 🙂

So what do you do when things aren’t going so well? Yep, like there’s a viable choice, you hang on in there.

You may notice there’s been a gap in my blogging, well, you guessed it, I’ve been just hanging in there.

Although I have Secondary Progressive MS it still rides the rollercoaster that Relapsing Remitting did but the ‘well’ bits are not so damned well!

When I had RRMS, pre-menopause, I used to say that after each period of unwell-ness (I hadn’t been diagnosed so it was a mystery still) I seemed to have to give up one of my beloved sports/activities. In my 20s I gave up horse-riding and cut down on my weekly tennis matches, daily long cycles, etc. You get the picture. By the time I’d reached menopause and the jump to secondary progressive MS I’d given up all sports, cycling, dancing, etc and cut down on swimming. Walking was becoming increasing difficult. I walked with crutches, actually walking poles to begin with as I thought it was my degenerative spinal discs needing sorting…BUT…I was then diagnosed with SPMS and the Orthopedic Surgeon, who I’d hoped would recommend an op to hold my back in place, started to blame everything on the MS. Angry? Oh yessssss…hissingly mad….BUT…have I ever challenged that? No, I haven’t actually. The SPMS, I now realise, has kept me more than busy just dealing with it. Symptoms and lack of energy were coming thick and fast. Now, nearly 8 years after diagnosis, I have a very apt T-shirt message that says “I’m up and dressed, what more do you want?!” Dressing is no longer a daily occurance particularly when I’m just hanging in there. <BIG SIGH>

Ok, my waffling takes on a life of it’s own when I’m extra tired so I shall shut up now.

A question to anyone who reads this (I know there aren’t many…or any… of you) is:

How are yer relapses? Let’s share our experiences, it may help someone. X

Advertisements

Do you accept help gracefully, grudgingly or not at all?

Anna
Hello, cheeky not rude, I hope you understand 🙂

I have always been a fiercely independent person. As a toddler I, apparently, slapped my mum’s hand off my cardigan buttons…..I COULD DO THEM MYSELF! (ha, she was probably in a rush and wanted to be quicker. lol) and throughout life I’ve always done  most things for myself. I always helped those less able, too. I never made a fuss about it, not wanting thanks, it just made sense for me to do something that I could do easily, with little effort, instead of them struggling…unless they preferred to struggle.

Hmmm. I thought I’d be like that but I’m glad I’m not. By being so we deprive someone the glow of helping and a brief but nice interaction but, more than that, we deprive  ourselves of the ability to do something more important because we’ve used too much of our precious energy to be stubborn. Makes no sense, does it? So I smile, even when it’s pissing me off (I miss being able to do it etc), I also ask for help when I need it. Where’s the sense in NOT doing? I know people who pride themselves in NOT asking for help, ever, but then end up in bad situations or laid up. It’s not big and it’s not clever. I’m sure some milk it but I don’t know any.

Bob, my partner, knows when to back off but will also help where necessary without judgement or moans. Yes, I have a gem….or, some would say, I’ve trained him well…mwahahahaha

I have, without tugging forelock or grovelling, an ATTITUDE OF GRATITUDE…for which I am, of course, grateful

Sign My Name in Pain ~ I’m Not Ready to Kneel

Every year something went, a sport or a task
Then one year I seemed to lose most that I’d ask
I thought it was menopause, a weird old game
But it was MS’s ugly head making me lame

My writing was stylish and I did it for fun
My walking often turned itself to a run
But now I walk badly, it’s more of a drag
With the crutches I use, no more carrying a bag

I’ve just signed a letter I’ve printed today
No writing them fully, I note with dismay
It’s wonky and painful I doubt it’ll pass
It’s upsetting but I try not to give an arse!

My writing is painful and not even good
I struggle with knife and fork and my food
I’m stubborn which keeps me going in part
But it’s not enough just to have a lion in my heart

I’m left crying and feeling I want out of here
But know that that feeling is based in the fear
Of what used to be but now is no more
And I have to admit, I’m a loser that’s sore

I work on acceptance and dignity in trial
But it conflicts with stubbornnes, it isn’t denial
I accept that it’s happening, it’s all just too real
For this old baggage to happily deal

If I calmly accept I seize up where I stand
But if I swear and cajole I can at least land
In a place where I laugh and cry…but I feel.
I’m not giving up…I’m not ready to kneel.

(c) Anna Reid