Where I’ve been for a while.
Our tree and cards will be staying up until the last minute, which I understand is this Friday, the 5th. I don’t want to say goodbye to Christmas yet, and as we still have lots of booze and nibbles left, why not extend the holiday season? I’ve been free from vertigo since Christmas Eve, and apart from the usual MS crap (pain, balance, mobility and bladder) and not getting out much, I’ve been having a blast.
New Year’s Eve was fine in the end, Kim went down the road to a little neighbourhood soiree for a couple of hours, while I chose to stay home with the animals and Poirot on a loop, then we toasted 2018 with a glass or two of Freixenet and didn’t get to bed till gone two! Wonderful.
I was in bed by 9.30 last night though. Sadly I’ve turned into a lightweight – late nights without repercussions are a thing of the past. Old age (any age over 35, that is) tends to have that effect, youngsters be warned!
Any New Year resolutions? No. I don’t like being disappointed.
I don’t mean indoor cycling. I’m talking about vertigo.
November 24th was a good day. In the morning Kim drove me up to Brecon for my first appointment with the neurophysio, who was very helpful. She suggested keeping a walking diary: nothing fancy, just notes on how I feel before, during and after each time I manage to go for a walk, and gradually increasing the distance. In the evening we went out for a meal with friends.
Great! Two excursions in one day! Quite an achievement for me, made me feel good. But by about ten thirty I wasn’t feeling so good after all. I hadn’t drunk much, so I couldn’t blame the alcohol. I went up to bed, hoping that lying down would help ease the woozinesss in my head. I had to get up again within half an hour of course – MS bladder issues – and went arse over tit in the bathroom.
So began a month of vertigo hell, with the occasional day of reprieve. A lot of time spent in bed, much clinging on to stair rails and to Kim, horrible nausea, and plenty of fury and frustration.
It passed eventually, but the enforced lack of activity has made it even more difficult to walk further than a couple of hundred yards. I’ll have to start all over again, and I’m pissed off.
Still, New Year and all that. Chin up old girl.
It hasn’t happened for a long while, but I woke this morning with my eyes pricking with tears and thoughts of sadness and regret. All the things I miss and can’t do anymore because of this crappy disease, missing my son, not seeing friends, not getting out there and living…yada yada yada. So very glass half empty.
But that is me and I will turn it around today by accepting it: I am a pessimist, I always have been. I get sad a lot, I blame myself for everything. I rarely achieve the goals I set myself, with the exception of a couple of real biggies in my life. My self esteem is near non-existent.
So what? Does it matter? Does it make me a bad person? NO!!!
That’s my starting point for today. I accept it. Which strangely makes it easier to accept that some people do actually love me. I’m funny, I’m easy to get on with (poor Kim might disagree!), I’m non-judgemental, I’m caring, I love animals and I vote Labour. On the whole I’m a good egg.
Yay!! I’ve cheered myself up!
These three amigos do their best to make me feel inadequate, on a daily basis.
- I really must knuckle down and get writing. Proper, like.
- I should just get in the car and drive.
- And another ‘get out of the house’ one – I ought to go for a walk (with my rollator) on my own.
- I must phone Bert/Gladys/Tarquin/Stacy and arrange to meet up. (Not their real names, but it would be fun if they were.)
- The house is a bloody shit hole. I ought to do just one little thing every day to get it sorted. Baby steps and all that.
- I must remember to do my toe raises and ankle stretches twice daily.
- I should make an apple pie. Or some bread.
And so it goes on. What stops me doing these things? Mostly, pain, fear and immobilizing fatigue. But also – and I apologize in advance for banging on about it yet again – my dislike of being told what to do, whether by myself, a book, or a medic.
So…there’s a long list of stuff I should, must and ought to be doing today. Maybe later, because right now I’m about to watch Spiderman: Homecoming.
Showing myself some love.
…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.