Interpersonal relationships can be difficult enough to navigate, at the best of times; add intimacy into the mix and it becomes rather like placing tiny bits of foil into a microwave oven – you know that the volatility will become evident, but whether the appliance will survive the onslaught is anybody’s guess. In that light, adding an illness, or serious accident to those tiny metallic flames can be like finding an unexploded bomb in your basement: everyone was getting along fine in ignorance of its presence, but now its visible and the existential threat is very real. You can tiptoe around it, you can diffuse it, you can even try to ignore it – but the one thing you cannot, and should not do is agitate it. Continue reading “Don’t Agitate The Bomb!”
I wanted to make a brief statement about the term ‘flare-up’. It’s so much more than an increase in pain or symptoms; regardless of how manifold that increase is. It’s more akin to getting caught in the worst hurricane to ever hit the Earth, and trying, with all your might, to hold on to at least one thing that seems as though it will stay rooted to the ground for the duration. Continue reading “Holding Pattern…”
There are two exhibitions coming up that I really want to see. Both of them are in London museums, and are easily reachable by public transport. The logistics of planning such an innocuous day out should be straightforward: it’s currently more akin to planning an overseas trip for ten people who barely know each other. Going on the weekend will guarantee me a chaperone, but it will also increase, tenfold, the number of moving obstacles that my dystaxia will have to deal with. Choosing a quiet midweek slot will reduce the physical exertion (movements won’t have to be so controlled: more places to sit and rest) but I’ll be less likely to secure the company of someone who can help me if, or when, my body starts to shut down. I’ve finally realised that this is my new reality. Denial has turned to grief. Continue reading “What I Lost In The Fire”
If you’ve read my previous posts you will know that it took getting a confidence boost from a pro Skateboarder for me to have the final showdown with my GP, that eventually led to him being proved wrong about what was happening inside my body. What that last consultation showed, though, was that I actually had a very well stocked arsenal but I was using it both incorrectly and inefficiently. With that in mind, here is a rundown of the tools you can use when dealing with an obstinate medical professional. Hopefully, these will eliminate the need to be struck by inspiration. Don’t get me wrong, inspiration is wonderful (and I will forever be grateful to Rodney Mullen….) but it’s not always as forthcoming or guaranteed. Continue reading “6 Tips For Dealing With A Difficult Doctor”
Read Part 1 here
I adore Rodney Mullen. For those of you who don’t recognise the name, he is the Godfather of modern street skating. Pretty much all of those impossible looking tricks you see people doing (the ones that look like pure wizardry) were invented by him. Now, I’m not a skateboarder myself, but at that particular time I was going through a Roller Derby ‘fresh meat’ training program (the Derby thing will get it’s own post in good time…) and I was finding that Mullen’s TED talk ‘On Getting Up Again’ was really helping me deal with getting used to hitting the floor so often. At least, that’s what I told myself – in truth, I just really like hearing him talk. Continue reading “The Uphill Struggle For A Diagnosis Part 2”
A lovely woman I used to work with saw me wince as I tried to close a door. She asked all the usual, polite questions – was I okay, had I been injured – to which I replied that my shoulder was just inflamed, as all my joints were wont to do. No big deal; I was coping. A few more delicately presented but probing enquiries led me to explain that I had pretty much given up on getting any help from my GP: Osteopathy, yoga, and the Endometriosis diet were holding my body together, despite all the pain. She then told how all of her mother’s symptoms were dismissed as being related to old age, so she decided to keep a pain diary. Lo and behold, a pattern emerged, and her doctor could no longer continue to ignore Continue reading “The Uphill Struggle For A Diagnosis Part 1”
Even someone who has been living with illness for a significant amount of time may discover that a person close to them has never truly understood what daily living feels like for the one who’s suffering. Continue reading What’s the deal with all the spoons?