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.
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.
I do the exercises, I take the supplements, I’ve cut down on salt, caffeine and saturated fats, I use my TENS machine.
I’ve tried amitryptiline but as I expected it made me feel terrible, so that’s a no-no.
But some days I think fuck this, I’m fed up with it. I don’t want to think about bloody MS and lifestyle changes. I want to get really wasted, eat whatever I want, ignore appointments with the consultant, the gp, the nurse, the physiotherapist, the continence advisor. Go where I want to, walk more than a hundred yards without my legs becoming tired and wobbly, not have to wear a Tena lady whenever I’m out for more than an hour.
Just live my life without this shitty disease. Sick of it.
“When we’re hurting, we need to be kind to ourselves. Unfortunately, this is easier said than done. For most of us, the default setting of our mind is to be harsh, judgemental, uncaring or self-critical (this is especially likely if you believe that you created your own reality gap). We all know self-criticism doesn’t help us, but that doesn’t stop it from happening. And popular self-help approaches, such as challenging our negative thoughts, or repeating positive affirmations, or practising self-hypnosis, do not work for most of us in the long term; our minds continue to be harsh, judgemental and self-critical. So we need to learn the art of self-compassion: how to hold ourselves kindly and gently. We need to learn how to support and comfort ourselves, and how to handle our painful thoughts and feelings effectively, so they have less impact and influence over our lives.”
Yet another self-help book, but it makes sense.
This is from Living Well with Pain and Illness by Vidyamala Burch, and can help me sleep at night (sometimes):
‘When you first turn your attention to painful sensations you may be more aware of your resistance than of the pain itself, but you can work with this by gently ‘leaning into’ the resistance with your awareness and using the breath to drop your awareness more deeply into the body. You can breathe in a sense of awareness and breathe out with a sense of letting go. Over time you can learn to adopt a kindly, non-judgmental attitude to the whole of your experience and allow painful sensations simply to be present. You can develop a caring attitude towards your pain – like the natural impulse of a mother to gather a child who has hurt themselves into her arms and hold them tenderly. Even though she can’t remove the child’s pain, her loving response will ease their distress.’
Physiotherapy and Otago strength and balance exercises, writing, and a little bit of self indulgence.
And reading – a lot.
Four a.m. and the dawn chorus has just started. I’ve made a milky drink and eaten two digestives, so now I can take two ibuprofen, and hopefully take the edge off the gnawing leg pain, always at its most unrelenting in the middle of the night.
I wrote the above a couple of nights ago. I managed to go back to sleep soon after, so I felt fine the next day. Yesterday was very different after a dreadful night. I was miserable, cranky, had no energy at all; I got nothing done -and the guilt! Overwhelming.
Today (another day) I have descended into the depths of misery, which sounds dramatic but that’s what it feels like. Coping with constant pain and lack of sleep is getting too much. Sometimes this was true pre-diagnosis, but the insomnia is much, much worse now. Both prescribed meds and herbal ‘sleep easy’ teas reduce me to a zombie state.
Today I’m desperate. I don’t see anyone, I don’t go out except to work and yes, I feel abandoned by family and friends. Kim is there for me all the time, but it’s so hard to explain to her – or anybody – how much I hate and despise myself for not pushing myself enough, for not making plans, for not picking up the phone and talking to people, or making a dinner reservation. For not writing, or making a cake, or not going for a walk or tidying up the garden. For being so pathetic. For wallowing in self-pity. For not coping. I don’t normally do ‘why me?’ but today that is the case. Basically – fuck it all.
Don’t you just love it? Well I think it was adrenaline. This morning I was weak and wobbly, I struggled to walk from the car to visit a new client, hobbling along slowly, leaning on my stick and feeling very sorry for myself (especially when the bugger wasn’t even at home.)
This afternoon I looked out of the kitchen window and saw half a dozen of our chickens, who had managed to get out of their enclosure and were happily starting to trash the half of the garden we have reserved for human enjoyment. Bastards! I almost sprinted down the garden, waving my stick and using it to shepherd the naughty chooks back through the fence where they belong.
See? I knew MS was all in my head.
Maybe not, but the mind set is obviously very important. I can learn from this.