I wake to find my pain on the ridiculous side. My right arm is in spasm and I can’t move it much. My left knee is also being difficult, and generally the rest of my muscles are all moaning at me. The pain is a lot higher than my usual constant pain. The weather is miserable, which I guess it apt, but I worry about my wheelchair as I’m never quite sure how waterproof it is!
First up is stretch, which is okay. I would enjoy it if it wasn’t at 9am, and I tend to be quite dizzy for the first few hours I’m up. Straight afterwards I have a gardening session, which I enjoy. Viv, the lady who runs it is really nice and chatty, and I re-pot some interesting looking plants that are going to be put into baskets to be sold later in the year to raise some money.
The next session is Maintaining Change, run by one of the psychologists. We talk about reasons to keep going, and what may sabotage us. One thing that’s discussed are lapses and relapses. Lapses are where for example if you’re giving up alcohol, you have a drink , but then get back to it. A relapse is where you have one or two, think oh bugger it, I’ve ruined it now, and start drinking every day. Someone then suggests if you miss a gym session, but then rearrange it for later that day, it’s a lapse. I think bloody hell, I’ve got no hope if you’re going to be that stupid about it! (To me that’s rearranging, not lapsing.)
I then have a physio session with the student assistant, as my physio hadn’t left enough space for my session when booking them. I’m have to say I’m hesitant. She’s not qualfied, very quiet and unsure. It’s nothing against her personally, but it’s my last week I for some reason only two physio sessions have been booked, and one is being used as a training session. To me, the physio sessions are some of the most important. It’s not often you get to work with someone who has an understanding of your condition – and physios usually just give out exercise sheets.
My session consists of her trying to get me to walk around the gym, although I have to explain I’m having a flare up and it’s not going to be the best day for it. She spends much of the time with her head in my file with her plan for the session. I have to say I’m glad when it’s over and I hope my final physio session is better.
I also notice that my usual timeslot had been given by my physio to the older lady that had been causing a lot of problems in the ward. She doesn’t have a chronic condition – she has arthritis in one hip. It had been a cause of friction on the ward, as she’d been making comments to people when they’d had to rest after physio sessions or sleep during the day, along the lines of accusing people of being lazy. We’d all very patiently tried to explain to her that having one painful area is very different from a chronic illness where you’re constantly juggling tiny amounts of energy, and having to pre-plan everything you do. She’d reduced a number of people to tears.
She is also a very fit and healthy lady, who can walk miles at a time and even the pain in the hip was intermittent. So I have to admit I was frustrated it was her session mine was forfeited for, although it’s obviously not something you can say.
Next I have a dreaded cooking session with the one instructor on the programme that not one person ever had a good thing to say about. She’s patronising, and rude and takes things too far. She has no idea about EDS, and where as my OT is trying to build up my posture slowly – she whines if I move out of place once.
The cooking session is meant to give me strategies to help overcome the pain and fatigue is causes, but I end up really fed up. She keeps telling me how to cook, instead of looking at ways to help me (I know how to cook, thank you!) When I finally finish – having had to use just my left arm all the way through, which isn’t very easy when you’re right handed, and my pain not great – shaking with pain and fatigue, she says well you’ve got past the barrier you have against cooking now, so you’ll be able to do it from now on. Oh yeah, problem solved!
I crawl into bed straight after, but struggle to sleep – probably because I slept between every session I could as I felt so rough. This means tomorrow will be a bad day, as I just flounder under a lack of sleep.
The last few days blur together in a sea of fatigue. My final physio session ends in disaster as I spend the whole session in tears, due to the fact the walking issue keeps being pushed.
The programme wasn’t quite what I expected. Had I gone on it ten years previously the strategies may have been helpful. But now, ten years later – when I’ve had to put my own coping mechanisms in place I find the tone quite patronising and a lot of the staff unhelpful.
The major flaw of the timetable for me is that at home I’ve come up with ways that mean I can function at times – by resting at others. For example I don’t tend to do things in the morning, and if I’m doing something physical like an appointment or event, I rest the day before. The programme turned this on its head – with early starts, and a lack of rest times. This meant that I spent a lot of the time coping with flare ups, which goes against the principal of the skills taught. It also meant my attitude became quite negative and ‘moany’ as I couldn’t deal with the amount of energy needed just to be there.
The two things I loved about the programme is that I met some really awesome, inspiration people who I can count as friends. They got me through the bad times, and I hope I helped them through theirs. It was the first time in my life I’d met people with the same condition as me – something really hard to explain to those with no condition, or a more common one. You feel less alone in the world. The second thing I loved was the fully accessible swimming pool! I miss swimming a lot.