I jinxed it…

Do you remember that bit in my previous blog post where I said that my hip and pelvis pain had been so much better since I’d been staying at home all the time?

Well, I think I jinxed it, because guess who started having a pain flare the day after I wrote it?

Yup, that’d be me.

My pelvis pain is back and making itself felt and I am most displeased.

It’s not the worst flare I’ve had in fairness but it’s caught me on the back foot, that’s for sure. I’ve spent the last couple of days trying to figure out if I’ve done anything differently that may have triggered it; something I could just stop doing and have it settle back down again. Unfortunately, the only thing that’s been different is the weather, which has gone from being wonderfully warm to flippin’ freezing.

My cerebral palsy and the pain it causes is so much easier for me to manage in the summer. Heat is one of the key ways, if not the key way that I manage my impairment on a day-to-to basis and to have the sun disappear so quickly makes my body very cranky indeed.

So, reluctantly, I have dragged my orthopaedic shorts back out of my wardrobe which will likely help if I wear them for a couple of hours every day while it’s cold. They’re custom made for me and are measured to the millimetre. They’re designed to be skin-tight and hold my hips and pelvis in the right place.

I like them and they do help, but getting them on is a total nightmare. Have you seen that bit of stand up Michael McIntyre does about watching someone put tights on? It’s like that only it takes about three times longer and doesn’t even have the slightly sexy bit at the beginning.

All in all, I shouldn’t complain, but it’s made me realise just little I’ve had to focus on managing my pain levels the last couple of weeks. Of course, it was wonderful while it lasted, but it’s hard not to feel a little bit sad when the pain becomes front and centre again.

It’s already been a long year…

Hello, hello – how are you all? I’m pretty sure I’m not the only one who feels as though 2020 has lasted about three years already and we’re only just halfway through. Those of you who follow me on Twitter might be aware that my dad died of cancer a few weeks ago. I won’t go into too many details here as he wouldn’t want me to. I’ll only say that he got diagnosed in 2019 and passed away peacefully in April 2020.

I’ve been working full time from home for a last few months because of coronavirus. While I don’t miss my commute, I miss seeing my colleagues face-to-face rather than on video chat that may or may freeze every 30 seconds. I’m working on a shift pattern, which is new for me. Sometimes I’ve even done a mixture of early shifts and late ones in the same week, which has been interesting when it’s come to managing spoons. I might share some of the strategies I’ve been using to try manage my pain levels, energy levels and trying not to burn out mentally.

I had actually been planning on moving out this year to somewhere closer to work purely so that I could cut my commute down…needless to say those plans are now on hold for the foreseeable future. My life has changed a lot in the last 12 months; I got a new job at work, my 10 year relationship ended, all the things that happened with my dad…

I think I just want some time ‘be’ with the life I have now for a little. If such a thing exists, but I’m not convinced it does.

It’s not all bad news though. Slowly but surely I’m starting to write again, I’ve gone back to therapy (via Zoom) to keep and eye on my mental health and my hip and pelvis pain has been loads better while I haven’t been leaving the house.

In fact, I’ve hardly had any bad cerebral palsy days at all, which is wonderful