I wake up exhausted, and to be honest it ruins my day. I can’t concentrate, and I spend every spare second sleeping. It’s a busy day as well, which doesn’t help. I’m also frustrated as I’ve looked forward to this programme so much – hoping to learn a lot on it, and feel annoyed at myself when I feel I can’t fully take part in it.
The first session as always is stretch. As you remember lots of new people joined yesterday, and we’d all got to know each other the week before and feel comfortable, so there is an air of slight awkwardness. Throughout this session my nausea is playing up, and I take an anti-sickness pill. I tend to find my nausea (common with Ehlers-Danlos Syndrome) gets much worse when my fatigue is particularly bad. The other thing that gets worse is dizziness – so throughout feeling with the mixture of dizziness, fatigue and nausea – the session isn’t particularly fun and I have to keep taking breaks.
One of the new ladies unfortunately has an even worse time. She suddenly whispered to me she didn’t feel well and was going to get some air. She almost reaches the door when she collapses. The physios rush around her, covering her up and putting screens around her. We’re told to carry on, and when we finish the session she’s still on the floor. We see her a bit later and she says she just got incredibly dizzy and ill. I feel really bad for her.
Straight afterwards I have my first gardening session with Viv. It’s all adapted, with long handled tools, which is really awesome. It’s set out so you can sit at a table to work, and I re-potted lots of Snapdragons. I then watered them with a can you didn’t need to tip, just press the button – which is fantastic for those of us with wrist, arm or shoulder issues (or all!). The underlying emphasis of the session was about posture and pacing, so I had to regularly change position and stand, or walk every 10 minutes. She helped put my posture right, but was nice about it. I come out feeling positive and like I can get this posture thing down. (I struggle as I hold my body in certain ways due to the pain, so while it sounds easy, it isn’t always.) I also really enjoy the gardening aspects and find it soothing.
My next session is Intro to Relaxation and the tiredness just hits me. She says it’s just the theory behind it, and I think thank god, as I’d just fall asleep. The room is cold, uncomfortable and packed, so how we’d relax, I don’t know. She goes on about the benefits of it, and my eyes keep shutting. A couple of times I find myself jumping awake. I just need it to be over so I can lay down, but on it goes. Then she announces we will have a short try by closing our eyes and breathing deeply. I keep my eyes open, trying to read or do anything to stay awake, digging my fingernails into my arm! It was horrible. I hate that feeling when you just can’t fight it, but it’s not somewhere you can sleep!
Lunch is next, but I collapse into bed to sleep, and then eat my salad on my bedside table as I just can’t move. It’s quite all-consuming today. Next I have physio, and I was looking forward to playing on the Wii, but someone else’s physio had the same idea – and decided to use it for the hour, rather than share it. Instead I work on the shoulder strength and core work. She asks me if I feel whether we’re missing anything out. It’s want to say that I feel it would be nice if it was more hands on, trying to relax some of the muscles as well as just exercises, but I don’t feel comfortable enough to do that. I tell her my wrists are very sore, and she gets me to try on a wrist support, but it’s no good unfortunately.
Straight after I have Occupational Therapy with Lucy, who coincidentally enough has decided to look at my wrists and hands. She tests my grip with a machine and says it’s very weak, particularly on the right. We try on lots of supports, and pick one with wrist and hand support to order in which feels really comfortable and gives support without being too tight, and another which is like a tight glove. People with EDS often have trouble with their joints as their brain can’t quite tell where their joints are (called proprioception). After putting it on immediately my grip improves. It’s a ugly thing though! She is also going to look for something to help my elbows which keep locking in hyper-extension, particularly overnight, which is very painful. Finally, she is going to write to my employer to say I need a phased return.
Next up is Arts and Crafts and I’m not so keen – which is ironic as I love crafting. Again, they look a posture – which I’ve kind of had enough of today. Every time I move she makes me move back into the ‘right’ position, even when it’s painful. She goes to ridiculous and patronising extremes, and hasn’t a clue about pain and how it impacts on your posture. I come away wanting to sit slumped for the rest of my life just to spite her, rather than earlier that day with Viv when I felt inspired. A terrible way to go about it.
Finally, a break! Once again I collapse in bed. I hate these day-time sleeps, as I’m trying to get better sleep at night, but it’s impossible not to. I’m just leaving for my final session when one of the ladies in the ward faints. God, it’s the day for it! I’ve never seen the nurses move so fast. If you’re wondering why so many are fainting or dizzy – we all have a condition called Postural Orthostatic Tachycardia Syndrome, which is linked to Ehlers-Danlos Syndrome. It causes your blood pressure to rise as you stand, causing dizziness and sometimes fainting.
The final session is on Pain – why it happens, what it is, etc. Again, I would be interested normally, but I’m fighting to stay awake. It wasn’t a session I was originally down for, it was just for the Pain Management patients, not the Rehab, but my physio said she thought I’d be interested. They finish the talk, and the two patients point out they’d heard exactly the same talk the week before. They’re told they do the same talk each week, and they have to listen to it three times. How weird! I won’t be going next week anyway.
Tea isn’t great. Afterwards a few people have to walk to the nearest shop as they were still starving.
I set my jewellery out in the evening and make a couple of sales. I also start work on a bracelet commission. Just as we’re settling down, the grasshopper (or cricket or whatever) reappears again. Someone manages to grab it and saves another sleepless night. Yay!