One wheel forward three stumbles back

It’s the same old story of a spoonie. If you’re going to dare to have some fun, you will reap the consequences. This weekend was a fun weekend. My LG was super excited about the royal wedding and squeezed into a bridesmaid dress from a year ago to watch it. We watched it with Grandad who was also celebrating his birthday. About a 40 minute drive so on the cusp of my limit. A quiet day to most, but nonetheless I returned home shattered. In the evening we had friends over for an Indian takeaway and watched the greatest showman and Jumanji, Sunday really should have been a rest day.

I say should as it wasn’t, it was a fantastic day spent with friends in a nearby forest. I hired a large mobility scooter from the forestry commission with full on suspension and captains seat so I could be as comfortable as possible and off we went exploring (after breakfast of course) . We followed the Highway Rat 🐀 trail had a picnic lunch and then did a forest walk/wheel after lunch. It was a beautiful sunny day, my head is showing signs of a tan and we laughed lots.

I consider myself very fortunate as my family and friends are very understanding of my pain and disability and although we often laugh and joke about it they do get it. One of my closest friends also happens to have started being my Personal Assistant (weird at first but it works perfectly) he was semi retired and spending a lot of time with me helping out anyway so it was sort of the natural progression. By the time I returned the scooter my body was certainly telling me I’d done enough, and all that was left to do at the weekend was a meal for grandad’s birthday with the in laws.

I collapsed into my rise and recline chair and was pleased to see some lovely photos of the day, taken by our friends, including this lovely one of me and my friend/pa below.

As I say a lovely weekend, tiring yes but for my wellbeing days out are so important. The payback though is honestly a bitch, since returning home the pain has spiked and I just cannot get comfortable. Meds are up, extra PA hours are being used and the days are drifting along in what is best described as a pain psychosis episode. Conversations don’t make total sense, sleep isn’t happening and I am certainly paying the consequences of having fun. Don’t get me wrong I’m not regretting going out but as many people see me and say things like oh you must be getting better the reality is vastly different I manage my condition so I don’t become a hermit anymore. Today I have ventured outside in the garden and am writing this with a lovely coffee and the help of speech software. Now I’m signing off for a catch up with a friend who has just arrived with his little boy.

One thought on “One wheel forward three stumbles back

  1. I know how this feels bro, much more acutely now than I ever did.
    After one small event, the days pass by in a pain, brain fog, and fatigue filled haze. I understand the conversations part all too well too, something that my friends are becoming more used to – me being unable to finish a short sentence, having next to no concentration and struggling to keep up with anything more than one voice at a time.
    Still, we all appreciate the time with you, and also the effort it can be, the fact that payback will come around with its demands.

    Rest as much as your body and brain will allow, and sometimes a bit more ( as we’re stubborn) and let us know if we can help in any way.

    Much love and strength bro xxx ooo

    Liked by 1 person

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