Today’s post is a deeply personal one. It has been a while since I posted about my health and where I am with it and how I manage. And, after recording a podcast a few days ago – which will air in a couple of weeks and I will, of course, share – where I talked about how I managed to write with poor health, and with some really bad days under my belt, I thought it was probably about time I shared on my blog what life was like, and more importantly, how I survive it.
This could turn into quite a long post, so you may need to bear with me as I explain some points first.
Most of you are aware that I live with the genetic condition Ehlers Danlos Syndrome as well as the secondary condition Postural Orthostatic Tachycardia Syndrome.
Ehlers Danlos Syndrome, or EDS as it’s more commonly known, is a connective tissue disorder. Connective tissue makes up everything that you are. Your skin, your bones, your ligaments, your internal organs. And in EDS, your connective tissue isn’t made properly by your body. So, anything can go wrong and there are different types of EDS.
I have hypermobile EDS which means that I tend to be a bit stretchier than the “average” person. Some of my joints will move past where they are supposed to move and some even slide out-of-place sometimes – though not often. Not like some people who really suffer and have joints subluxing a lot. (This is where they come out-of-place, but isn’t quite a dislocation.)
My main problem and the one that causes me the life-altering problems is the joint at the top of my spine/base of my head. It does what I mentioned above, it moves past where it is supposed to move. My neck is unstable and this causes the most unbelieve pain you can imagine. It is like carrying a bowling ball on a cocktail stick.
I have been seeing a spinal surgeon for the past two years and we have controlled the pain by putting an injection straight into my spine under a general anesthetic. But, these injections are now failing as my body is getting used to them. My consultant is also not wanting to continue with them for much longer as he said it is the most dangerous place on the spine to be going in blind. But… he is so good, I do have blind faith in him. It took me a long time to find a UK surgeon who would listen to me and would take me seriously and understand me and the issues.
My last injection has worn off, I won’t have another until about July and it could be my last. Surgery is then an option. It scares me. It’s a huge operation that will fuse the unstable joints.
But – the pain I am living in, day in and day out, is utterly unbearable a lot of the time.
How do I spend my days?
I spend a lot of my days in the horizontal position because being upright for long periods of time causes too much pain. This means I don’t have much of a life. Also, being in such pain on a permanent basis, well, it wears you down. It’s exhausting. My good days, where I can make an effort and with pain relief, can go out for a few hours, are getting fewer and further between now.
This is where writing comes in. If I didn’t have writing as a new career I think I would lose my mind. I really would. But, because I do have it, I can create worlds and characters, I can use my mind, even if I can’t use my body, it gives me purpose each and every day.
I’ve found a way to work even though I can’t sit at a desk all day and work as other people do. I set a timer on my phone and work for just 15 minutes. Yes, that’s all. 15 minutes. You may laugh at that. But, it works for me. When I started doing this I could only write about 320 words in that 15 minute time period, but now I can write between 5-600 words in that time. So, all I need to do is sit at my desk twice a day between rising and going back to bed at the end of the day and I’ve done a word count I can be happy with. If I manage a third or fourth session of timed writing then I’m thrilled. And I’m also progressing my work, a lot!
So, even though I am incredibly restricted, I am not out for the count. And even when I’m not physically sitting typing I am working by reading and by planning out the next part of the story in my head so I’m prepared to type when I next sit down.
Yes, life feels hard being this person, stuck inside this body that won’t let me live a life that most people take for granted. I do feel stuck inside this body because the person inside here is still very much alive and alert and the same person she always was. And by writing, I can show I do have something to offer the world. I do mean something.
Writing is a life-saver.
What keeps you sane in the world? I’d love to know. Days can be long. What do you love, that makes you really happy? We all need something.
My latest book released was;
Where do you turn when you can’t trust the police?
Detective Inspector Hannah Robbins is called out to the murder of Simon Talbot. Local gang leader who only the day before, was released from court a free man, found not guilty of the murder of police officer, Ken Blake.
Now, he has a bullet in his head.
And witness details on his person.
Hannah is up against the clock to find Talbot’s killer, and locate the bystander before it’s too late.
But as Hannah delves deeper into the past, she begins to question the integrity of the whole operation.
Could the killer be closer to home than anyone would like?