December 5, 2012 § 11 Comments
The thing about dermatomyositis is that is can permanently damage muscles and that’s something I’ve been hoping wouldn’t happen to me. If you’ve been reading this blog, you’ll know I’ve got a ‘gammy’ leg – ‘gammy’ translating to a lot of pain in my left leg and associated swelling, when I do a bit too much exercise (by too much, we’re talking here of minute amounts of exercise, not climbing a mountain or anything).
So the other day I went out for a lovely lunch with my daughter, Elaine. We went to a suburb of Newcastle upon Tyne called Heaton, where there’s a few nice vegetarian and generally bohemian type cafes, over a fairly short distance.
In the first cafe we went to, called Sky Apple Cafe, we had a very delicious all day vegetarian Big Breakfast. It was such a lovely bright, crisp, blue sky, winter day that we decided that we would walk to another cafe, Heaton Perk, for cake and decaff coffee, the walk being about half a mile.
Now recently I’ve been building up my strength and stamina and I’ve been able to walk about half a mile (with a couple of rest stops) so, I was fairly confident getting to the the cafe for my cake. So, off we went, on the cold, crisp, bright day and made it, slowly, to Heaton Perk. Once ensconced, we talked about life and books and politics and how much I miss travelling. We ate gluten free lemon drizzle cake and drank steaming decaffeinated coffee and decided that life doesn’t get much better than this: Little pockets of happiness and cake.
Then we walked the half mile back to the car and off we went.
Doesn’t sound like much exercise does it. Well today my leg is swollen and very sore again. When I walk my knee buckles under me and the joint is very painful as well as the muscles around it. It’s so frustrating, not being able to even do a little walk without this happening. How on earth can I get back to where I was at this rate. However, I am utterly grateful Im not in a wheelchair like a lot of people with this disease.
September 29, 2012 § 2 Comments
Friends and family kept going on saying I should get one. But I kept resisting because it just seemed so final, so accepting of the disease’s badness. In the end, I was at a small family gathering and my sister in law’s, mother, had a rather dapper one with her, so I ‘had a go’ and actually it was pretty good. It was like something to lean on when you’re tired: Not a bad thing at all. In fact, I felt kind of cool, like a female version of Steed from the Avengers (although he used a brolly rather the a stick).
So, I bit the bullet and got one. It’s very cool, it has silver spiral galaxies on it.
I’m going to use it and not be embarrassed, or feel ‘old’. I’ll not use it all the time, just when I really need a bit of support.
Also, it has a useful, dual use. I can use it to whack Steve with when I need a glass of water, or a slice of toast, etc.
“whackkkkk! Steve I need a drink”
“whackkkk! Steve get me a slice of toast”
So it is a very useful thing indeed.
Oh and I’ve also found it’s good for poking the dog when she makes a smell, so she moves away from within my nose range.
My whacking stick (me looking a bit grumpy and fat of face (more about steroid ‘moon face’ fun in another post):
September 3, 2012 § 9 Comments
So, i’ve got this sore leg. It’s my left leg as it happens. It swells up around the knee if i use it too much, by too much we’re talking here of a short (very short) walk. It hurts and it twitches. The twitches don’t hurt, they’re just annoying, like the twitch you get in your eye when you’re really tired, except this is all over my leg.
I went out the other day to the shops, first outing on my own, that far, for 3 months – I needed to get some painkillers and heat packs, for the leg. Of course the little outing was an ironic one as it made my leg hurt more. But it’s important that I get out and try to build my stamina and become a little more normal.
You know when you’re in a crowd and there’s an old person, or a person with a small child in front of you and they’re walking really slowly and you just want to scream at them, “out of my way beyatch!”?
Well…I was that person today. I was the little old granny, or mother with a toddler, getting in your way. I was acutely aware of being slow and annoying, but I couldn’t do anything about it.
So I’ll say on behalf of all those annoyingly slow people who get in your way, sorry, you’ll just have to be kind and grin and bear it – you never know when it might be you, dragging your gammy leg along, with a queue of people behind you.
Oh and just to emphasise the pathetic nature of my walking capabilities at present. I was going into hospital recently for a scan and I was hobbling along and a man, easily in his 70’s, walking with a stick, overtook me, sigh.
UPDATE: Ive just had a letter though from the hospital (about the above mentioned bone density scan). I have Osteopenia of the hips – more on what that is in another post as Im in shock, although I don’t know why as it’s a complication of the steroids.
September 1, 2012 § 12 Comments
Here I am, whining about being ill, boo hoo me.
And out there are people who have had to overcome terrible physical problems and then all of the emotional and mental issues that surface when that happens.
Who have to deal with prejudice each day.
Who have to deal with the awful lack of facilities for disabled people in public places.
Who have to deal with loss and grief.
And yet, who have made a super human effort to overcome those hurdles and prove they are the best at what they do.
I want to extend an humbled awe, to not just the paralympians, but to anyone who has a disability, be that for a physical or medical reason and who manages by super human effort to move on in their lives, past their situation and still do amazing things.
But while I’m on, I also want to point out one other thing too. There was quiet demonstration going on against the company ATOS in the opening Ceremony this week, as also mentioned in this blog post (good read, by the way) Paralympics 2012 – Opening Ceremony.
ATOS have sponsored the ceremony and yet ATOS are also the company responsible for overseeing the current disability benefit assessment fiasco being carried out in the UK, where hundreds of thousands of genuinely disabled people, are being taken off benefits: Nice choice of sponsor, talk about rubbing it in.
Yet another hurdle placed in the way of people with disabilities and medical problems, at a time in their lives when they can least cope with it. It sickens me and I’m already sick.
Let’s end on a positive note and say good luck to all those amazing paralympians who show us what it is to be truly human.