Monday, November 23, 2015

Calling Bullshit On This

(It's taken me a while to decide whether or not to post this; I guess I will, there are far more eloquent blogs out there but I wrote this on the day this ridiculous study came out, feeling frustrated, confused and angry. It's still smarting now, even though the results have been somewhat dismissed, so here we are:)

I am not an Oxford academic and to be frank, I am glad I am not.

What I do have, unfortunately, is an intimate knowledge of life with ME/CFS. So it's completely disheartening when articles like this surface and reinforce the prejudice that this illness is all in the head and can easily be resolved if we'd all just pull our collective socks up and get on with it.

As it stands research into the actual causes of ME/CFS is underfunded, the symptoms are under such a large umbrella that they're regularly misunderstood and there seems an almost deliberate reluctance in wishing to resolve these facts.  Instead sufferers are dealt with by medical staff sometimes impatient at having to listen to the litany of ailments and then there are the friends, family, public who think we're all malingering.

Before I had this I didn't know anyone with it, hadn't paid much attention to it at all. In a way the disheartening attitude towards it startled me. I'd had thyroid issues before and it was a quick diagnosis then on to treatment and back to normal life - sorted.  No one thought it an imaginary friend, or rather foe, as here were the tests, here were the results and this is our plan of action. This time at each and every hospital visit I expectantly waited for them to say "this is what you've got and here's how we'll cure you."  At each and every hospital visit I gave up 'nearly an armful' of blood in the hope that this time it would definitely be something curable by a magic pill.  Meanwhile my life before ebbed away.

Who would choose that? In all seriousness who would choose to have this damn illness, disease, syndrome or, if these damned 'professors' are to be believed, fiction? I've gone through the CBT that's meant to be a cure.  Yes, it helped me cope, allowed me to forgive myself over not being able to do what I wanted and taught me to pace so I could fit things in (including such mundane tasks such as laundry), including inevitable crashes when life is too busy. I learned to say no (although it is still a massive struggle).

The GET taught me I had limits and when I tried to stretch those limits, in my usual gungho manner, I suffered the consequences and unless you've had ME/CFS you might not know how terribly those consequences play out.  So, not going to do that again in a hurry. To say this is beneficial is actually quite dangerous as sufferers want to be well and will push themselves over those limits time and time again. I have yet to hear of a single person with ME/CFS who has found GET to be anything but frustrating and painful.

So according to the exalted professors I should now be fine and dandy.  Let's shut up shop, stop the poor attempt at finding cause/defining symptoms/cure. We can all go home.

'Tis yet another kick in the teeth. Front page news has established ME/CFS as 'not a real illness' in the minds of people now. Whenever someone has to explain why they are not as they used to be it will be all side-glances, cat bum mouths and dismissals over just how fucking bad this really, truly is and haven't you tried just, you know, not being ill.

Friday, November 20, 2015

The Never Ending Saga of the Cold

Another week another bloody illness.  This time youngest twin son has suffered through an excruciating sinus infection, enough to eke some antibiotics out of the doctor.  Not ideal, I'm wary of this whole idea of overusing antibiotics but this is his first time and considering he'd had a cold since mid-October it was necessary to step the treatment up a gear.

We can pretty much write off this autumn, see what happens when I'm unable to scrape enough together for a holiday in the sun.  It's a luxury bordering on the necessity for life quality and obviously a good healthy dose of Vitamin D is missing this year.

I've decided to take a big gulp of confidence juice and try to go properly self-employed.  To an introvert this is the equivalent of that going-to-work-and-realising-your-naked dream and I don't think I have the talent but I have to attempt something to make more money.  All I really want to do is hide in a box but that is not an option.

I need to steal myself, head up, shoulders back and don't let them see you quiver.  Strangely I was prepared for this earlier but for a knock-back from a really rude person that had me slide into a pathetic lack of faith in myself.  Not only that but I was doing him a favour.  Twat.

Need to channel my inner warrior; it would help if I looked like this,
but I don't, I'm more teddy bear shaped than sleek, fierce goddess.

Thursday, November 12, 2015

This Is Where I Wish I Was

Not location but creatively.

I know over the past couple of years I have come further in my art than I ever thought possible but I'm still not satisfied with what I do and I don't know when (if ever) I'll find my style.  This probably sounds trivial but the pure happiness I have while watercolour painting or getting messy with pastels is slightly dimmed when I see the finished product and then I don't want anyone else to see what I've done.

Practise, practise, practise then go to Pinterest for a good dose of inspiration! I don't want to copy, that's not what I look for, but seeing the results of artists with true talent is not off-putting but entices me to try and to persevere and maybe, just maybe, one day I'll get there.

No, I don't think in any way I'd ever be in the same stratosphere as accomplished artists such as James Guthrie. (See below, I love this painting, sure it's a fairly romanticised version of agricultural life in Scotland but considering Scottish culture has been stifled, especially recently, then any glimpse of our non-"British" history is a refreshing relief.)  Reality check; I paint as I write, to please myself and if it is appreciated by others then that is a bonus.  I will always be my harshest critic.

James Guthrie, A Hind's Daughter, 1883, Canvas, 91.5 x 76.2, National Galleries of Scotland, Edinburgh.:
James Guthrie, A Hind's Daughter, 1883, National Galleries of Scotland, Edinburgh

Sunday, November 08, 2015

Trying To Pause

Close my eyes, chose a soothing playlist, pretend the world isn't twirling and whirling around me.

It doesn't always work.

Meanwhile I'll listen to this and songs that ease my soul while hoping for a pause, a breath, anything.

Thursday, November 05, 2015

The Comfort of Shared Moments

Son 2of2 and I have spent the better part of this week curled up on the sofa watching tv, playing Halo and coughing until our eyes water.  Apart from the obvious annoyance of sharing this moment with the unwelcome cold virus I can't help that little glow I get from spending all these hours with my son.

His brother is assiduously avoiding us lest he catches anything so I'm missing out there but the selfish part of me is enjoying this enforced quality time with at least one of my teenagers.  They'll be fourteen at the end of December, fourteen seems awfully grown-up so I'll snatch any precious seconds I have where I can be good old reliable mum, there with the soup and sympathy.

Tuesday, November 03, 2015

This Is Me Since Yesterday...

Actually the old Scottish saying is not exactly apt as this is me since the beginning of October.  Caught in the ebb and flow of a monster cold that just won't give up.  Now son 2 of 2 has suffered the same fate to the point that he has been off school for a week, the longest absence he has ever had since...well, since he started nursery all those years ago.  Then today son 1 of 2 was allowed to stay at home due to having zero sleep last night with all the coughing.  You know it's bad when your eyeballs are hurting and we're resorting to the "Vicks in socks" tonight as a last resort.  Everyone swears by it and it's certainly more appealing than the "onion syrup" remedy offered by a Polish friend.

There is a pity party going on at our house.  No one is invited.

(On another note, while trying and failing to find a witty illustrative depiction of our current crisis I came across the image Niagara Falls is nice and all but was it a strategic target?  I have a feeling the booklet would be full of the useless advice given to us during the 80s; hide behind a door, paint your windows white, put your head between your knees and kiss your ass goodbye.  That last one may just be made up.)