I don’t know if today is meant to be day eight, but I decided to ignore the weekend!
Although having previously booked a hotel for Sunday nights, I didn’t have my first session on Monday until 10am, so we decided to stay at home one more precious night. I love being at home, but it’s a sacrifice of sleep! We were aiming to leave at 7.30am, but it was about 8 before we left, and by 9.30 I was getting worried as the traffic was pretty bad.
I arrived to a very full ward, with lots of new people. Some had replaced those that had left, plus we’d had some empty beds last week. I felt like the new girl, and very awkward to go and speak to everyone!
My first week I bought some of my beads to make jewellery, and I’d got lots of requests for different things, so I packed all my beads and some pre-made stuff. My pile of stuff is ever-growing! (See next week when I attempt to smuggle my cat in and hope no one notices.)
I suggested to my mum she stay for a couple of the sessions and see what they’re like. Family members are invited. My first session is the Weekend Review, where we discuss how we met the goals we’d been set. I did 5 out of 6 – the only one I struggled with was getting up early! But I still got up a lot earlier than I would have done normally.
The second session straight after was Anatomy and Healing. It was run by my Physiotherapist Rachel, and I found it quite interesting. I never, ever found science interesting at school, as my teachers seemed to have this awesome habit of taking a fascinating subject, and wringing out the dullness of it. It was interesting to have an overview of what makes up our joints, and what exactly goes wrong for us. One of the group members however, decided to be really interested in the session, and interrupted with a question after every one of Rachel’s sentences. Rachel tried to hint to her to leave it to the end, but it didn’t work.
We then had lunch, where a spider (massive phobia!) decides to appear. A few people are scared, including me. The older lady in the ward, who caused a lot of problems the week before picked it up, but decided to wave in a few of the scared people’s faced. No one is impressed.
Afterwards my mum headed off and I had a physio session next where we worked on core strength. She said the next day I could have a play on the Wii fit and work on shoulder strength. She asked if I’d found the Anatomy session interesting, and I said I had – when questions weren’t being fired. She responded that she’d tried to hint, but some people just don’t get it. It’s the first time a staff member has commented on a patient, they’ll usually deflect, but you could see it had annoyed her!
Our final session is Foiling a Flare Up. I have a feeling I know exactly what they’ll say, and I’m right. They make the usual suggestions of heat, ice, distraction, relaxation, massage, etc. I explain that I use those techniques to get through every day. To me, a flare up is when nothing will help. They’re quite vague with a lot of their answers – someone explains they were once in a car crash and they developed severe pain afterwards. When the ambulance arrived, they were concerned until they heard she had Fibromyalgia and Ehlers-Danlos, and their attitude became ‘well what do you expect?’ They were asking advice on how to explain when they feel something is seriously wrong. They answer was ‘just be assertive’. But they clearly had been trying to explain and was dismissed. Someone said her doctor often ignores pain as part of her condition, and sometimes it had turned out she’d been injured and what could she do. The answer was ‘ask your GP.’
I pointed out my issue of having no tools when I’m flaring up as I use everything else to get through normal days. Their answer was to listen to music. Look, I’ve had this nine years. If music helped, would I bloody well be here?!
The girl in the bed opposite me decided to buy a jewellery set from me – a green heart with a spoon for The Spoon Theory. (Google it if you haven’t heard of it, it’s an excellent way of understanding how people live with chronic pain.) She’s been a fabulous promoter. I don’t think there is anyone in this hospital that doesn’t now know I make jewellery and she loves it! It’s really sweet.
Carrying on the usual Monday night ‘let’s make Jade not sleep’ fun – a grasshopper made itself at home next to my bed. While this may sound funny, it was horrible. The little bugger was so incredibly noisy every time we turned the light on, and although we saw it many times, it vanished down a hole when we tried to catch it. It woke me up throughout the night and early in the morning. We were also joined by two new loud snorers. Dontcha just hate ’em? I gave out all my spare earplugs, then managed to lose one of mine in the night! It turned up in the morning, but it was a very disrupted night.