Sunday, June 11, 2006

Bad day

I woke up at 6.30am, but it was 12.30pm before I'd managed to put any clothes on, or have any breakfast. Going to the loo was an exhausting expedition on hands and knees. I can hardly stand, even with leaning on furniture and walls and whatever. The curtains have remained closed all day but it has still been too bright in here. I've slept all I can, there's no sleep left to do, but I still feel physically exhausted.

It's a beautiful day. I wish I could go out and enjoy it.

Special mention to the girl downstairs - she had her baby outside in the yard and they were playing on a blanket outside the window of their ground floor flat, and she'd turned up the stereo in her flat so they could hear the music outside. Normally I'd either endure it or I'd go out, but today I couldn't do either, so I stuck my head out and asked her if she could turn it down a bit for ten minutes while my painkillers worked. I figured ten minutes would give me enough of a reprieve to maybe go back to sleep or whatever, without being overly demanding - I don't want to be an awkward neighbour. I was a bit concerned that she'd think I was being bossy or superior, but instead she and turned it down and said she hoped I felt better soon. Didn't even turn it up again ten minutes later, even when I stuck my head out and said I was feeling a bit better, thanks, just smiled and said it was ok.

My friend James came to see me this afternoon. He had an idea that we could walk to the seafront - it's only a couple of hundred yards, if that - and get an icecream. But I couldn't. It would have been too much for me. We considered the wheelchair, but James has his own problems which mean he might not be able to manage me in the wheelchair safely. And even if he could, I don't know how long I would cope with the brightness of outside before the pain got completely unbearable.

We sat indoors and played ludo in my darkened room. A few turns into the second game, I passed out. My head hit the board, pieces went everywhere. I was only out for a few moments, but when I got to myself again my head was exploding all over the place. Luckily James has been my friend for long enough to know how to deal with this. He tipped me into a more comfortable position, picked up the pieces and put them in their bag, went and got my medication bag, checked I had a drink, and helped me get dosed up, then he sat with me until the worst had worn off. Then he asked if I wanted him to stick around, or to go home and leave me to sleep. I opted for sleep.

I really hope I feel better tomorrow. Pip is supposed to be giving me a lift to the CAB because I need help sorting out some paperwork, and I really need some brainpower.


Mary said...

I'll settle for prescription sunglasses.

My current glasses are light-sensitive lenses, they go dark outside, but they're clear in here. Which is fine most of the time, but I can't *make* them go dark. And with a standard cheap pair of sunglasses, I won't be able to see properly.

Leiro said...

Specsavers always have buy one get one free ;-) I think you can even buy them online!

Without wishing to sound patronising I want to say I think you are really brave for giving people an insight into what it is like to live with ME, as a lot of people just write it off as 'laziness', which is just ignorance on their part!

I just wanted to coment because I read your blog a lot- but don't always comment!

I hope you feel better soon.

Mary said...

Thanks Deana, but I've got a really good independent optician I go to that is just down the road from me. An appointment takes three times as long, but ye gods it's thorough!

People who live with ME are affected differently. Some are so bad that they have to be fed by a tube and use a bedpan (the worst I've been was when I couldn't eat meals, I had to have lots of snacks, because I didn't have the energy to chew food for an extended period of time). And then some people just have to cut down to part-time working hours, nap every afternoon, trim their extra-curricular commitments and shelve any plans to run the marathon. Illnesses like this are rarely a black and white issue - everyone's different.

The trouble is that there are some people who say they've got ME because they heard about it on daytime TV or whatever and decided that they *must* have it. They have it really, really badly when it comes to working, or doing housework, or helping out other people... but it doesn't seem to affect them one iota when it comes to walking round shops for a whole day, or going clubbing, dancing and drinking several nights on the trot, or spending a day at the beach swimming in the sea and playing ball games.

Those people are the ones who give the illness "ME" a bad name. And as you've probably guessed, I don't believe they have it at all.

Leiro said...

Yeah I know what you mean. People like that always have 'something' wrong with them when it comes to putting in a hard days work. You can always tell because people who are genuinely ill really don't enjoy having 'time off' at all- unlike the shopaholics you mentioned!

The illest I have been (I admit I am fortunate) is glandular fever and I struggled to cope with that! I was just so damned tired all the time. That is the first time I really realised (aged 18) that some people really ARE exhausted physically. Even I was and glandular fever is nothing compared to ME!

Glad you had a better day 'today'. :-)