The Rehab Saga: Maintaining change, Physio/OT and a visit from Addz

Up bright and early this morning but I felt pretty sleepy (I’m blaming the added antihistamines) I did eventually drag myself out of bed and get dressed in time for the Stretch class. It was a pretty small group of us today so we chatted a bit but got the job done, the Therapy techs taking the session were both lovely and happy to joke along with us. My body didn’t seem to appreciate the stretching to start with, (not just because I can’t wear my leg braces without aggravating my allergic rash) I popped a shoulder while stretching my wrists and popped my fibula while doing calf raises. I did get myself back together before the session was over tho!

After stretch I headed straight into an OT session, today we looked at my jewellery making and how I hold pliers and fiddly beads. We checked I wasn’t hyperexending my thumbs too much while holding things and looked at how I pace, we also came up with a few ideas to make sure I don’t get sucked into craft projects and forget to fidget!

My next session was Physio, we did a general review of all my exercises, one after the other. I did a few reps of each so my physio could check I was doing them correctly 🙂 I was and I’ve made visible improvement in more than one area so were both really pleased. If I continue to improve this fast I’ll be competing at Rio 😉 HAHA The physio session was cut short after my OT popped over, she pointed out that I was actually running late for my 11am session, both Physio man and I thought it started at 11:30am so I hopped back in my chair and whizzed off down the hill in a hurry!

I made it back to the ward in record time and only a few minutes late (The psychologist very kindly caught me up) We were talking about Maintaining Change, we’ve all got good physio plans and are getting better at pacing but how do we stay on track when we get home? We discussed the barriers to maintaining our new and improved lifestyle like other commitments, flare up’s, lack of motivation etc then talked about how we could address these issues.

After ending our psychology talk we headed back to the ladies ward for lunch, (more chicken, baked potato, carrots) I had a break after lunch so I wasn’t rushed and I got about half an hour to stretch out on the bed before I made a move up to outpatients. I was cooking with one of the lovely therapy techs, We had such a laugh but she managed to constantly keep an eye on my posture and pacing despite the giggles. By the end of the session I’d chopped and fried some veg, cooked pasta and mixed it all together. I didn’t get PoTSy, I didn’t fall over and nothing got dropped so I’m pretty darn pleased with that!

I hung around for a little while before the next inmate arrived for their cooking session we chatted while her tech turned up. After whizzing down all the steep hills (again) I got back to the ward in time for another rest and a chat with two of the ladies on the ward. We talked about our various medical issues and got to know each other a bit before I headed off to my final session for the day.

This session was with the lovely psychology lady again and we looked at the psychological component to chronic pain, the destructive cycles we can get trapped in and the ways to break cycles. One of the most important things I’ve been told by the psych lady was that Thoughts are NOT Facts.  just because I think I’m useless doesn’t mean I am! I know I’m hard on myself and I push myself (sometimes much too far) in an effort to ‘beat’ my EDS. A certain amount of determination/stubbornness can be a good thing, it keeps me going when things get tough but too much stubbornness means I’m pushing myself beyond my limits and I set unreachable standards for myself, this (in the long run) makes dealing with my health problems much harder.

We looked at cause and effect issues with pain. Bad pain leads to stress, stress leads to tension, tension leads to more pain! the cycle continues unless you know how to break it. Do you need to stress about your pain? does it achieve anything? might it be better to just accept that today is a bad day. Bad days happen, hopefully tomorrow will be better.

We looked at the impact negative emotions have on your body and discussed ways to deal with them, we also reflected on our flare up plans (especially sections on dealing with low mood) Flare up’s can and do happen, they aren’t going to disappear just because you’re pacing (hopefully they won’t happen as often tho!) There’s often a temptation to blame yourself for having a flare, did you do too much or were you not trying hard enough? That doesn’t solve anything. Rather than focussing on the face that you have a flare up and the activities you CAN’T do, try to focus on what you can do, pick 3 things for the day you are doing to achieve no matter how rubbish you feel. These 3 things can be as simple as brushing your hair, making a cup of tea and doing a few minutes of stretching but by achieving them you have managed to do SOMETHING! The session was really good and I’m probably not doing it justice with my ramblings!

After a short break it was time for our evening meal, we headed to the conservatory and I got a call from Addz (my boyfriend) before I’d even got my meal, (he was lost somewhere near the other end of the hospital) …Addz did make it down as I was eating chips so we had a catch up and a giggle, I showed him my little cubicle (and was mocked since its as messy as my bedroom back home) Hah! After he’s snooped through all my stuff and wheeled messed around with the electric bed he settled down to read my course programme, he read my flare up plan and agreed with all of it so thats good!

We headed into the session with one of the consulting nurses, she did our nutrition session last week and I love her attitude she’s so approachable and really funny! We also had one of the ladies who finished last week come back to visit! She’d brought her hubby for the session. The nurse introduced the session and talk a bit about what we’d been up to on the program, what the aims were and what could be expected from a patient perspective, I think it was really useful for our visiting family to hear what we’d been up to and why (not everyone keeps a blog for their friends & family to read haha). We talked about what to expect after discharge, and what we need to do in order to keep on track with our pain management. We talked about how our families could support us and that sometimes in order for each of us to reach our full potential we’re going to have to pace activities that also affect other people or the family at large. I’m very lucky that my family and friends are so supportive (not just because loads of them are also bendy!) I hope the benefits to my health and the progress I make will be worth the hassle of changing things to suit my needs! The next stage will be sharing my flare up plan with everyone and making sure I’m more co-operative when people tell me I’m PoTSy and need to lay down! Addz has been given permission to send me to the sofa if he thinks I need to rest but my PoTS -addled brain can’t figure out what to do or say!

After the session we went for a wander around the hospital and I gave Addz a tour of the wonky corridors, my chair developed an alarming juddering creaky noise so the last part of Addz’s visit was spent back on the ward tightening up the back axel, I don’t think my chair appreciated the high speed hill descents from outpatients and back to the ward!

After saying my goodbyes my last jobs were to tidy up my ‘bedroom’ and finish tonights blog, I’m shattered now so its time for bed!

Ciao for now folks!

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