I did something exciting this week. My great-gran, my gran, my Mum and I all have an Essential Tremor and last year Mum and I applied to take part in the world’s largest study on the disease. We initially had to fill out a detailed questionnaire and to be honest I thought they’d exclude my Mum because of her drinking and the amount of tablets she takes and me for the fact I have several other diseases, but after waiting for several months we found out we had been accepted into the trial. So we were sent a prescription for a blood draw, along with phials and a pre-paid Fed-Ex envelope and on Tuesday we had our blood taken at our local NHS health centre (great they agreed to do it for nothing!) which we shipped off to France to be gene tested. The actual trial is being done in Canada but I think anyone applying from Europe will send their blood to France who will forward the results to Montreal. My Nan’s and Mum’s tremor was so bad by the time they were 70 they couldn’t write their own name so researchers have 20 years to find effective treatment so that I don’t suffer the same fate.
I’ve made a new friend at my Camera Club. She’s absolutely lovely and very kind hearted, so we had lunch together this week and talked endlessly about all things photographic. I know I bore non-photographers senseless with my hobby, so it’s nice to have someone to talk to who shares my passion. It’s incredibly difficult to make new mates when you’re largely housebound and meeting new people was one of the reasons I joined my Camera Club, so after going for 4 years it’s fab that I’ve finally clicked with someone although as people we’re very different.
Thursday I went with my Dad to see the spinal consultant about his leg stiffness and weakness. Despite finding several bulging discs and some spinal stenosis on his MRI scan the Doctor wasn’t concerned and said he’s definitely not a surgical candidate. So he referred him for physio and that was that. My Dad already had a physio appt for the next day and the physio was also unconcerned. He just told him to walk as much as possible and dismissed him from the Clinic. I’m not sure how walking, which my Dad already did loads of, is going to help spinal stenosis so I felt disappointed that he’s basically going to receive no help.
My Cleaner (who also walks my dog two days a week) has gone down with a lergie, so hasn’t been this week. My house was minging so I had to clean it myself as best I could on top of taking the dog out in the snow. It’s typical it coincided with my period week so I was feeling pretty rough, not least due to a three day migraine and a fainting spell brought on by stupidly low blood pressure. It’s no fun having to go out in a freezing winter blizzard literally 30 minutes after you’ve passed out and thrown up and feel so weak you can hardly put one foot past the other. Bertie didn’t care though – he loves the snow 😉
Speaking of The Curse I had only my second ever totally-pain free period in 38 years, hurrahhh! I’d been feeling achy and grotty for a few days beforehand but when I actually started there was zero pain, when usually I’m in bed with two hot water bottles feeling physically sick it’s so bad. To think that most women have periods which are that easy is mindblowing and if you are one of those women you have no idea how lucky you are. I have been crippled every four weeks since the age of 11 due to endometriosis and adenomyosis and my periods have felt like a form of torture, which is why I’m so desperate for them to end.
Thursday I’d arranged with a women in the next village to photograph her daughter. I was doing the shoot for free in return for using the photographs in competitions and was also giving her 2 free mounted prints, which is a good deal by anyone’s standards. We’d arranged it in December but she didn’t turn up, telling me she simply forgot even though we’d only spoken about it 14 hours earlier, and it’s taken her this long to ring me to re-arrange. So I spent an hour setting up the studio and gear at 5pm, my worst time of day when I’m usually in bed, then I waited for them to arrive. And waited. And waited. You guessed it, she didn’t turn up again and I haven’t heard a word from her since. She knows I’m ill and I’ve no idea how she has the gall to be so to be so rude and dismissive of my time and energy. She’s shot herself in the foot though because she also clips my dog every 6 weeks and if she thinks I’m paying her to do that ever again she has another think coming.
Unrest is being shown tonight at my local cinema. I downloaded it on iTunes the day it became available so have already seen it but my best friend, who’s had ME for 18 years, hasn’t so I asked if she wanted to go and she said no. She has no interest in the film whatsoever which just goes to show how differently we all cope with chronic illness. There is no right or wrong way. Everyone’s experience is different. Everyone’s needs are different and we should be allowed to react to our situation in our own unique and individual way. Whatever gets you through the day.