You’d assume this would be an easy question to answer, but it turned out to be somewhat difficult.
I think the simplest difference to explain was that prior to falling ill I was in the habit of tearing about at top speed doing anything and everything with little thought to consequence – a good night’s sleep would fix everything, right?
Now I have to plan carefully, allowing for day to day fluctuation, proximity of activity to other planned outings, weather and other factors. Nothing can be undertaken lightly any more. On the worst days I struggle to do even simple day to day tasks as the pain and fatigue become overwhelming. Thankfully I seem to be having less of these since I moved up to York to lose my weekend round trip of 130 miles to see my partner.
Like many other people I’ve spoken to my social circles underwent some dramatic changes. For whatever reason not everyone wants to stick by the chronically ill – I’ve moved well beyond the point of wasting my time being angry about it. Instead I choose to focus on the amazing people who either stayed by me or stepped to the fore and became fast friends. It’s hard to feel negative about the changes when faced with such overwhelming reasons for positivity.
I think by far the hardest thing for me to accept was the dramatic effect on the things I loved to do with my spare time. I finally had to give up my long-held hope of ever returning to horse riding as there isn’t a chance of my being able to handle something so high-impact, and one fall could do tremendous damage long term. My creativity is not being wholly satisfied as my hands don’t allow for long periods of work (I’m a sketcher primarily) and a lot of the time I cannot summon the requisite levels of concentration. I had planned to create a Dungeons and Dragons inspired triptych (I can see you judging, desist at once!) for our flat but I haven’t even been able to begin yet. One day!
(A previous sketching effort - Sonata Arctica fans may recognise an attempt at the Reckoning Night cover.)
I am however tremendously lucky in a lot of ways in that I’m still managing to work and have a social life, albeit different to before. I was never a big drinker but now cannot drink at all – alcohol has even started to smell “wrong” to me after being sober for 18 months.
I can still exercise (in fact that’s the only reliable pain control I’ve found thus far) which is a blessing – I led a very active youth and I’m well aware I would be driven crazy by inactivity. However, having to exercise to avoid future pain has sucked the joy out of it for me, but my partner and I are about to start going to jive classes and that will give me something to do purely for fun again.
Also, it has given me the opportunity to write this blog which is both cathartic, an excuse to be somewhat creative and a chance to meet and talk to other Spoonies. Whilst I started the blog in the hope of being able to help others I’ve actually grown quite attached to it for my own reasons also.
So in summary I would say whilst the effect has been profound, it could be a lot worse and I'm very grateful for small mercies.