My dream of spending the weekend comatose was unceremoniously shattered by my PT and OT on Thursday during my goal setting session. As much as I longed to crawl into my bed and stay there, I quickly understood the need to put what we’d learnt into practice during our everyday life. The RNOH staff completely understand how difficult it is to go home and try to do everything differently. In our packs is a letter to friends and family, explaining we need their encouragement and support:br />
I'm lucky to have very supportive friends and family but even so, this letter feels like validation. I feel I can say "this programme is really hard, making these changes long term is going to take a lot of determination, I need your help and support. Look – the doctor said so!!"
My weekend goals were:
1) Get up and dressed by 12pm and don’t return to bed until night time.
I managed to get up and changed out of my pjs by 12 on both days. I stayed out of bed all day on Saturday, but had to retire at 9pm due to overdoing it slightly 😳 On Sunday I had a lie down for an hour in the afternoon as I only got 4 hours sleep the night before (the heat and my restless legs were awful!) My Physio says I can still call this a win though – it’s such a big improvement just to be out of bed. I’m really pleased with myself but I’m also just waiting for the inevitable crash. The team say there won’t be a crash if I pace properly. I hope they’re right.
2) Research the Backfriend posture aid.
Tick. My grandma is buying me one this week, I’m a lucky girl.
3) Practice walking for 5 minutes on Saturday and Sunday.
Tick. But I still look ridiculous trying to walk properly. More practice needed.
4) Complete my stretching on both days.
I did some stretches on both days but could have tried harder for that one. Only half a tick.
5) Attend one social event focusing on pacing around the event and working on my posture when out.
So I may have over done it on this one. I went to a family BBQ for a couple of hours, paced well before and during and kept my good posture up. From there I went straight to the pub with my partner. I chose the most suitable chair to help with my posture BUT I started to tire and should have gone home. Instead I pushed on and went to dinner afterwards. I only made it half was through the main course before I hit the wall. Hard. We had to call a taxi and leave before dessert. I’m annoyed with myself for overdoing it again, it ruined the evening for my partner and we could have done with a date night. I just find pacing so hard to implement. My Physio says to focus on the positives – I was really good with my posture – and learn from the mistakes rather than beating myself up about it. We discussed ways I could have planned the day better: I could have just gone to the BBQ and cancelled our dinner plans (boring). I could have left the BBQ earlier, gone home for a rest, and then gone out. Or I could have rested more at the BBQ, saving my energy for dinner.
6) Set my walking baseline (how long I can walk before the pain starts) on my way to dinner.
This one I didn’t manage because my plans changed, but I did do some walking (through the pain – oops) so it’s ok.
My Physio was really pleased and I’m proud of myself too. Being out of bed all weekend is an achievement on it’s own. Managing it after a week on the programme and actually doing stuff as well is, well, pretty incredible! Here’s hoping I can keep it up for week two!! 😊