Jesus H. Christ…

…as my father (the lapsed Catholic atheist) used to say. The mood swings are doing my head in. I’ve always had them, but now it’s gone beyond, starting usually at about 3am when it’s all fear of the future: how we’ll manage when I can’t do stairs or walk any more; how I’ll manage if Kim dies before me; how on earth I’ll get forty years of accumulated ‘stuff’ (mostly worthless crap) sorted before my demise to save my poor son from having to make sense of it all.

Then after a couple of hours sleep I might surface feeling optimistic, or giggly, or irritable, or weepy and maudlin. Or flat, or furious, or maybe even indefatigable. The last one doesn’t last long mind, fatigue wins out every time. Bastard.

This blog is not the usual MS blog. I don’t have any diet tips, or breezy advice, or exercise routines. I don’t consider myself an MS warrior and I don’t collect inspirational quotes – in fact, I can’t stand them. MS is a complete pain in the arse, there’s no way round it. I hate it. I’m not aware that it’s taught me any valuable life lessons. Apart from being a stubborn, curmudgeonly old mare, which can be useful, I’m a nightmare MSer.

So hard cheese to anyone chancing to read this expecting to find optimism and hope. Apologies, but I’m no Pollyanna.

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Mindly and 1963

This morning we were talking about the weather and I remembered the freezing cold winter of 1963, when I was twelve and staying with relatives in south east London. My stay was extended because I couldn’t get back to Notting Hill Gate due to the train service being disrupted by snow and ice.

I used a good app I’ve downloaded to start organizing my memories about that time, as a jump off point for a possible short story. 

I like Mindly.

Warning: profanity

Fuckbuggershitbollocks. Told ya.

I woke up this morning with legs feeling like a ton of sodden woolen blankets encased in concrete, plus spasms and wobbles, intense aching pain, and difficulty with breathing. I forced myself to get through the morning routine – let chickens out, feed them and the cats, make tea, take it upstairs, blah blah. See, this is where guilt comes in handy. If I give up and ask for help, I’m a failure and not being fair to Kim. So I keep pushing, because I’m a surprisingly tough old bird. I kid you not, I suffer. A lot. Which makes walking, exercise, getting up and down the stairs, fucking difficult, but I do what I can. I’m not Kadeena Cox! I’m a sixty-six year old with primary progressive multiple sclerosis. Progressive. No remission.

So when I occasionally come across articles which maintain that if one does this exercise routine, takes this supplement, follows this diet, asks the gp for this drug, one will be absolutely hunky fucking dory, I want to shout “Oi! Cockwomble! Go boil your fucking head!”

And so ends the rant. 

Retirement begins

It’s wonderful not to be spending Sunday dreading Monday morning. This is my first week as a lady of leisure, and I’m mostly loving it, in spite of a broken boiler and various other irritations. The pressure’s off!

Of course, I’m still making to do lists, telling myself off for not doing enough, for giving in to pain and fatigue, for spending too much time under my blankie watching reruns of Poirot and Lewis.

So I’m trying to ditch the shoulds and oughts and turn the motivation into ‘love and take care of myself.’ For example, start clearing up the piles of paperwork to give myself some peace of mind. Exercise or walk every day to help myself feel better. Get out of the house and see friends and go places to enjoy myself (this is going quite well.) Write and garden and draw and bake to express myself, not to keep others happy.

It’s a big turn around for me, the MS and constant guilt (where does it come from???) are ever present saboteurs, but I’m getting there. 

Writing practise

I thought I would return to this blog to do just that, practise writing. I’m pondering retirement (about bloody time) but I’ll need something to do to avoid sinking into the bog of boredom, depression and daytime TV. Nurture my creative inner child and write stories. Or maybe become an artisan baker – bread only, I’ll leave the cakes to Kim. I won’t be crafting or knitting because nothing is more frustrating than trying to do things I can’t. When I was a kid I couldn’t even get the hang of those wooden bobbin dollies that churned out pointless ropes of knitted wool. I knitted a jumper for James when he was a toddler and it was crap, poor kid.

I wouldn’t mind growing some decent veg. My herbs are doing well though!

Bread making, writing and herb growing then. I’ll do a bit more exercise and self-care, but i refuse to become MS obsessed – that way madness lies.

For now though, I’ll carry on working. I suppose.

MS illustrated

I have some of these – thankfully not all. Not yet.

http://positivelivingwithms.com/an-illustrated-view-of-multiple-sclerosis/

Hello stranger!

It’s been two months since I wrote a post. I’ve lost track a bit, but since then I’ve seen the MS consultant and his registrar, the continence adviser and I have physio every three or four weeks. No new symptoms – hurrah! – no sign of optic neuritis, and the consultant thinks I’m doing a lot better than he would have expected from looking at my MRI scans. Which was nice. (I like to get in a Fast Show reference when I can.)

I’m still working. Just had a lovely two week break mostly watching the Olympics. Saw friends, and James came for a weekend. My physio ordered me a rollator for free.

Short but sweet.