Tuesday 3 June 2014

Day Two Week One

Had a lovely breakfast with the ladies on my course, then went to stretch class, which for me was a bit of a disaster :(

Yesterday we were given a pack with our timetables and all the information about the course, which included 23 different stretches.  Some sitting, some standing and some laying down.  I started to come unstuck at the sitting and raising one leg as my right hip wasn't keen on me doing that.  I tried the standing on tiptoes, supporting myself on the back of a chair but my posture was awful and I went dizzy so sat down and skipped the next couple of stretches.  I really started to hurt when I laid down on the mat.  They asked us to stretch out our arms and legs which really hurt.  They said stretch less but I found that hard to do too as there seems to be a switch point between not feeling anything and pain.

I felt like a failure watching everyone else making the effort while I nursed my sore neck.  I know I have to try but everything was too hard for me.  I spoke tothe physio afterwards and she said I was doing too much and she recommended speaking to my own personal physio about it.

I took my muscle relaxant as I was in a lot of pain and I had my OT appointmemt next.  My OT is lovely and we talked about what I need help with in my daily life such as personal care, managing household tasks, shopping and socialising.  I signed up for crafts and gardening as my functional activities and showed off pictures of my handspun yarn and knitting projects.

After a little break I had a meeting with my personal physio.  She'd been told about my problems in stretch class and said it was beyond my capabilities at the moment but we could try a different technique - mindfulness.  She recommended at the next stretch class I should get into the starting position for each stretch and visualise doing the stretch if I can't manage to do it.  We had a really good chat about things, my expectations of the course and finding the right starting point for me.

We also talked about the hydrotherapy.  All classes are mandatory but she told me not to go to the group hydro session, she would arrange a one to one session on my own and just get in the water, float for a few minutes and then get out and see how that affects me.  She explained how the heat, humidity, water pressure and physical exertion all affect my body causing me to feel ill after being in the water because of my EDS and POTS and she took me on a tour of the hotel pool.  It was incredibly humid, which makes me feel quite breathless even just sitting down, but there are gentle steps (and a hand rail) that go down into the water so at least I dont have to haul myself up a ladder to get out of the pool.  After the feeling upset at stretch class I felt much more positive about things.  The physio also explained it's taken many years to get to such a poor state of health and there are no quick fixes, but once we find my baseline we can begin the long road to improving my fitness and health.

Lunch was amazing again, grilled chicken, broccoli quiche, humous and crudités, salad, sweet chilli chicken wraps, new potato salad and a fruit platter with melon, watermelon, pineapple and grapes.

After lunch there was a talk on joint hypermobility syndrome, what it is and why it affects our joints, then we had our functional activity meeting where we had a balance test, which was basically standing on a sensor pad which indicated if our balance is dead centre or over to the right or left.  Mine was 1 to the left, which is probably because my right hip is hurting me today.  We also talked about pacing and correct posture and we arranged our activity sessions.  Im doing crafts next week and gardening the week after.  We get to learn how to pace our activity and achieve things without causing pain or overdoing it.

It's been a very long and quite emotional day so Im going to rest for a while before meeting up with the others for dinner.

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