Welcome back. I know it’s been a whole year since I last updated my Buy Me a Coffee posts. Those who follow me on Facebook or regularly read my Medium posts will know that a lot has happened in the past 12 months.
Here is a quick(ish) look back at the last year before we get to the much more important plans for the future.
The early part of last year was overshadowed by two deaths in the family and two funerals within the space of a month. Ebony also had surgery to remove two teeth that got lost in her upper jaw.
For those who don’t know, Ebony is Eliza’s new name. She has never liked the name I gave her and chose a new one for herself. I fully stand behind her choice, and family (mostly) and friends, old and new, have embraced it with open arms.
Alongside all this, we finally found somewhere long-term to live. Fortunately, We secured a fantastic ground-floor apartment close to the seafront that accepted the dogs. It has taken a while but we finally have all our things out of storage and have made it ours.
Ebony settled well at college and passed her Level 1 functional skills in English, Maths and Biology at the end of the last academic year. Towards the end of the last term, she began to really struggle with her back and legs and tired much more quickly than he had before. We were assured that it was just the amount of energy she was using to maintain herself at college. A good rest over the summer should do the trick. Unfortunately, it was not going to be that easy.
Over the summer holidays, Ebony started to struggle more, finding walking painful and tiring. She had a couple of falls, and her physio decided crutches would help steady and support her. The wheels of the NHS turn slowly, though, and they were a long time coming. In the meantime, she deteriorated further.
Two falls at college in September put pay to her Catering BTEC as she was deemed too much of a risk in the kitchen. This didn’t do much to help her mental health, and it had a knock-on effect on her physical health. By October half term, she was struggling, and one day, her legs gave out, and I couldn’t get her back up. They still worked, but she couldn’t weight bear.
We were fortunate that a friend could get us home that day. Ebony spent a couple of days getting around the flat by bum shuffling, much to the amusement of the dogs. We hired a wheelchair so she could get around outside, but without the resources to support her at college, there was no going back until she was back on her feet. There were no apparent reasons for what was happening, and the GP, her physio, and her consultant all said the same: it was a symptomatic flare related to her hypermobility, fatigue and stress.
The theory was that it would be short-term, and she would be back on her feet quickly. It didn’t happen like that, however. In short, what followed was more falls, lots of pain and wobbly movements, a lot of physio, meetings, disagreements, an MRI, blood tests, form filling, and training (on my part).
Amid all this chaos, we purchased a cheap second-hand wheelchair so that I could get her to all her appointments and give her the confidence to go out and start trying to walk, knowing we had the chair when it got too much.
And then, there was the waiting. Everything seemed to take forever. Finally, I got the college’s agreement to go in as a volunteer to support Ebony, pushing the chair when needed and being her moral support/bag carrier, etc., when she was up on her feet with her crutches.
This week, we finally got her results back. The MRI was clear, which was a huge relief. The bloods showed PCOS, which we were already aware of the possibility of. Everything pointed to the problem being her hypermobility – she has now formally been diagnosed with Ethler-Danlos Syndrome Hypermobility, with associated chronic fatigue and chronic pain, and altered pain sensation due to her autism. They are checking a few other things, but we aren’t expecting any nasty surprises.
What does this mean for her mobility? Honestly, I don’t know. I know people with EDS who manage very well day to day and walk with little to no issues. I know others who use a wheelchair to varying degrees depending on their pain and fatigue levels. Ebony is a fighter, and she is learning to manage the condition.
Unfortunately, the chair I brought gave up the ghost this week. We are exploring the possibility of an NHS one, but there is only a slim chance of getting one in Ebony’s situation. We are back to having one on loan from Shopmobility, but that is not a long-term solution.
And that brings us back up to date.
Writing Plans
While all this was happening, I was still trying to keep my copywriting business going, write a novel, and entertain my online readers with new works. Copywriting work continues to be in short supply. The downside of this is reduced income. The upside, of course, is more time on my fiction, especially the four novels I have going now.
I’m not one for New Year resolutions, but this year, I decided I needed at least to put some simple and achievable goals in place to help keep me on track. You can read more about that here:
https://medium.com/writers-blokke/the-quest-to-not-bite-off-more-than-i-can-chew-ecde21f0afb4
So far, I’ve done pretty well keeping to them. I’m writing for between 30 minutes and an hour every day. I’ve published at least one piece a week on Medium between my two profiles and widened the publications to which I submit work, which is, in turn, widening my readership. Only time will tell whether this will pay off financially.
I am editing for at least an hour most days. I’ve been focusing solely on my Lorelei Sands’ novel, The Scourge of the Demon Hunters. Getting it ready for a beta reader by the end of March will be a considerable challenge, but I’m not giving up just yet. Hopefully, not all the chapters in the second half will need as much work as the few I’ve done.
I plan to update my Buy Me a Coffee pages more often to keep me accountable and on track.
I will need beta readers willing to read a spicy demon romance novel around the end of March – let me know if you are up for the challenge.
If you want another way to support Ebony and me, you can become a Medium member. Your membership helps support the writers whose works you read.
Alternatively, please buy me a coffee or two. Every little helps. Actually, scratch that; it might be copyrighted. Every cup helps.
Until next time, stay safe and be creative.