Apologies for not posting in quite a while. This is the good, the bad and the ugly and the hopeful reasons why. As many of you who follow this blog will know, I have to battle a complex mix of disabilities and health challenges. Early this year I gained two more diagnoses, for the connective tissue disorder Elhers Danlos (EDS) and for Postural Tachycardia. These diagnoses are added to cerebral palsy, hemiparesis (some limits to movement on my left side due to damage to my nervous system at birth), asthma, endometriosis, allergies, CFS/ME, fibromyalgia, digestive disorders and more. I have spent the last 6 months waiting to find out if I have one of the most serious kinds of EDS; vascular, which has an average life-expectancy of around my current age. I have some of the markers / warning signs but tests took a long time. Thankfully, this is now looking ‘less likely’ but the kind of Elhers Danlos I do have means that my joints bend painfully and dangerously both ways and regularly dislocate partially or fully, my skin and muscles are easily damaged and slow to heal and I’m at risk of organ prolapse, movement of internal organs and cranial instability. I already know at least one organ is badly scarred. I go dizzy and floppy if I overheat or sit up too long. This is partly to do with my blood pressure being too low to feed my brain enough oxygen so my heart tries to over-compensate.
All of this is complicated by my cerebral palsy but many of my other conditions are common to those with EDS. Connected issues often signpost to connective tissue disorders.
Next week I’m seeing a physio, a cardiologist and a neurological rehabilitation bod. I’ve had CT scans and a brain MRI after a visit to the stroke unit and neurologist when brain functionality became enough of an issue to present like a stroke. (One side of my face stopped working for a while). I will have a heart MRI in two weeks and should see a Rheumatologist next month. We try to make hard won and long awaited appointment dates into nice days by adding tea or lunch out, dropping into a gallery or dog watching in a park, noticing seasons changing. It’s hard for me to leave the house – or the bedroom, so we juice every joy out of life that we can whenever we can. There is no cure for any of my conditions and funding for research into management of rarer conditions like EDS is limited and at risk. Understandably, I have often been in a state of high anxiety, unable to focus on writing or reading other bloggers’ work.
This has not been aided by other life stresses such as the loss of one cat and the illness of another, an aggressive and threatening neighbour (police involved) and a whole lot of other gubbins. The state of UK and world politics at the present time is also deeply troubling, with looming Brexit not only threatening all I believe in but directly and indirectly threatening my health. For a while I’ve had to look away to survive but I’ve posted some recent poems today.
However, there have been triumphs too. Nott Normal, an independent Nottingham-based arts company driven by and for those with special access needs has been quietly ploughing ahead. I am one of two co-founders, and the company was launched on my 40th this year, in the same week as EDS diagnosis. We’ve done a piece in the local Surface Gallery called ‘Touching the Surface’. This dealt with representations of the absent artist in inaccessible spaces. I have spoken in front of approximately 1200 audience members as part of The Guilty Feminist Live Tour when it came to Nottingham Royal Concert Hall. We’ve also won a funding bid, to secure a small amount to work with women with visible and invisible disabilities and special access needs. This was in part thanks to Nottingham Women’s Centre. Finally and perhaps most importantly right now we are trying to get a carnival-like piece of street performance ready for next month to commemorate a local piece of social history while raising donations for local foodbanks. I will be in my wheelchair dressed as a giant cheese (in my case a vegan one). But more of that later.
So, there you are, the good, the bad and the ugly of why I’ve been off grid a while. Hoping you’ll forgive me and looking forward to slowly catching up with some of your blogs over the next weeks and months.
Take care all,