I thought I’d use my platform for something a little different this time. I’ve used it before to shine a light on and dispel some of the strange facts and myths surrounding Autism Spectrum Disorder, and how life on the spectrum affects me on a day to basis.
What I want to do is raise some awareness toward another condition that is very close to my heart, called Ehlers Danlos Syndrome. Some of you maybe aware of it, but for those of you who are not familiar, I’d like to try my best to briefly explain what it is and what it involves.
Ehlers-Danlos syndrome is a group of inherited disorders that affect your connective tissues — primarily your skin, joints and blood vessel walls, but also gums and nails. There are various different versions of it, which is why it’s a syndrome, but it is a very disabling and challenging condition.
Loose joints that dislocate easily
Stretchy and fragile skin that bruises easily
Soft and velvety skin
Non-healing damaged skin
Increased heart rate, especially after standing or eating
Digestive problems such as heartburn and constipation
Heart valve problems
The signs and symptoms of EDS vary by type and can range from somewhat mildly loose joints to life-threatening complications.
There is absolutely no cure for Ehlers-Danlos syndrome. Only treatments that aim to manage the symptoms and the awful pain, while preventing any serious complications.
The reason I’ve shared this information with you, dear friends, is that my wonderful wife, who you all know as Mrs Bob, has got EDS, and I’ve heard so many people say things like “Oh I hope it gets better soon”, or suchlike. While I understand that these people have the very best intentions and aren’t meaning to be hurtful when they say these things to her, it upsets me, and her. It’s like saying to me, “hopefully you’ll become less autistic”.
She struggles on a a daily basis with pain and her joints – especially her knees (which have to be specially taped up to help against dislocation, which still happens regularly. She can on a good day, manage to sleep in bed for 2-3 hours, but the rest of the time she has to sleep downstairs on her recliner. Some days she can’t get upstairs, even with crutches. She goes for regular short walks with a crutch every day, but if her knees are out, she can’t, and this has a knock-on effect on her back issues from a car accident in her early 20s.
She is always in some pain, but still tries to smile, and do the best she can without complaining, even when she knows that she’ll suffer the following day as a result of doing too much. She knows it won’t ever get better, but starts each day as new. I think it’s because she does this that most people don’t realise the daily struggle she and others with EDS have.
So please, spare a thought for those of us whose daily existence can be an uphill battle, that is often invisible.
Hi everyone, I’d like to take a minute to explain my absence of late.
It’s been a very interesting year so far. I was planning to write poetry and drop it straight onto socials, taking the pressure of another book off me for the foreseeable future. However, the best laid plans of mice and men, and all that. As I mentioned earlier in the year, I’m now working on a project with local lass and author of Sensible and it’s sequel Barefoot, Daisy Burton.
This new book has a life of its own and just keeps getting bigger. Only last weekend I sat in my office putting the final touches to the new book’s artwork, when lo and behold, I realised there was another chapter that needed writing. It seems that, for now, this project may take us some time. Daisy is working hard on it, as am I, but we want the finished article something we can both be really proud of. We’re not going to give to much away, except to say that it’s a factual book about a subject very personal to both of us.
So while we work away on this, I maybe a little quiet but I’ve not gone. I’m just a little distracted… is that a squirrel?!