Thursday, 21 June 2012

Uneasy truce? Oh no sir!

Recently I wrote how I had realised that MS had become my excuse for not doing things that before diagnoses I would have done. It was a tale of regret and grieving.
But yesterday I discovered that MS is actually sometimes (And I only mean the once in a while, count your blessings for small mercies sometimes) good for something.
It is absolutely brilliant at giving you an instant reason for some random, innocuous and not-serious health complaint that may strike.
Take the common garden cold for example. Pre-diagnoses days, I would have sniffed my way limply into the chemist, bought a mountain of flu remedies and tissues and felt extremely sorry for myself while dabbing vaseline onto the end of my sore and red snout.
I would have moaned to anyone who would listen that this wasn't just a cold - this was flu and they had better feel sorry for me.
Now, when a cold strikes my reaction is this: "Bloody MS - I wouldn't have caught this cold if it wasn't for the MS." And I find myself angrily fighting the cold blaming it all on my old friend MS (which on this occasion hasn't actually done anything wrong). But it feels so good to remind my monster that I hate it and it can think again if it even thinks that its home in me is going to be anything but a dark, cold place to be.
I'll give you another example. Recently I've been suffering awful achy knees. I've been moaning about it constantly.
Have I been to the GP to discover the reason? No.
Do I tell myself that it is probably an age-related thing? No.
Does the thought that as a teenager I managed to strain the ligaments in both knees on separate occasions ending up on crutches both times and it is probably the niggling of these old injuries? No of course not.
What I have done though, is during my moaning about how sore my knees feel is say: "Bloody MS - it's got to be something to do with that." Maybe it is, maybe it isn't.
But yet again, I remind my MS monster that I seriously am not a good place to be setting up camp and that it needs to change locations fast.
It's quite liberating to realise that for everything that goes wrong now, I have a fantastic reason to shout loudly into the face of MS that it needs to move on now, there's nothing to see here.
And it is even better to remind my MS monster that we do not have an uneasy truce. Oh no sir! There is no truce at all. In fact there is only one four word sentence that sums up our current situation.
We are at war.

Wednesday, 6 June 2012

Fighting a losing battle

Realising I am fighting a losing battle has never been a strong point of mine. But my MS monster has other ideas and is letting me know in no uncertain terms that sometimes I need to stop fighting and give up.
It's the old fatigue again.
It's finally won. I can't push on anymore.
My shifts in work are pretty insane with the level of intensity needed and for the last few weeks battling through shifts I've noticed a couple of worrying things.
Weird little black floating spots cross my vision. I keep seeing spiders climbing on me in my peripheral vision which has me panic hunting the imaginary beastie. Little electric shocks run down my arms into my hands. Driving home is an effort of untold proportions in order to keep my concentration on the job in hand. Most days, the 15 minute drive home is a total blur when I finally fall through the door and onto the sofa.
I won't lie - it's worrying me a bit.
Recently I attended a newly diagnosed with MS workshop. I can't say I was looking forward to it much. And my fears weren't without foundation. Seeing people with MS which was affecting their daily lives in a really negative way in terms of their balance, their mobility, their swallowing, their memory was quite breath-taking and got me wondering when it was going to get me like that.
I sound selfish - I probably am. But quite frankly, this is my MS and I'll deal with it how I want to. (All said in a very whiney and snotty little voice.)
Everyone there seemed to be dealing with their demon in their own way. Some seemed - on the face of it at least - positive and hopeful. Some seemed desperate for some kind of cure. Some seemed defeated while others seemed like they were taking on the fight of their lives.
The monster was lurking in every one of the MSers there. The stand out observation for me was not one person there could understand what the hell they had done to deserve this thing intruding into their lives.
But back to my current woes that fatigue is becoming more and more apparent in my life. At the MS day I learned there are such things as fatigue management workshops happening locally - something that I fully intend to embrace when the chance comes up. I'll let you know how I get on.
Onto other things, I've just had an invite to another neurology appointment - wonder if it will involve another MRI scan? I'm quite interested to see if the Big A treatment has prevented any new lesions forming since I had the first round in November.
So I'll sign off now - I don't feel too positive at the moment and for that I apologise. Hopefully when I say hello next time, I'll be feeling a bit more myself. Until then, I'll keep my upper lip stiff, my chin held up high and the very best of British attitude to stop me from falling apart.