I decided to write about one of my typical days living with Ehlers-Danlos Syndrome. It is one of those conditions that people don’t see and as a consequence often don’t understand.
I wasn’t diagnosed with EDS until 6 years ago when, whilst teaching, I caught a child who was falling from a climbing frame. Although I didn’t realise it at that moment, that incident would define the rest of my life. I had test after test, treatment after treatment and pain relief that ranged from tablets to injections, but nothing stopped the pain either then, or since. All that can be done now is ‘manage’ the pain…but I personally would not say it is ‘managed’, I think tolerated is a more fitting word. Each and every moment of every single day feels like someone is ramming their concrete booted foot hard into my coccyx. I cannot focus on that though, I have to try and distract myself from it and try to find things that if they don’t help in some way with my pain, they do at least let me focus on something else.
Swimming helps me do that.
Today, I went swimming. I swam a mile. I’m very proud of myself.
Most people would regard swimming a mile as a real accomplishment…for me it is much mor than that. It is more of a necessity. You see, my body hurts. My bones, my muscles, my ligaments, my stomach, hurts. It doesn’t hurt because I go swimming, it hurts because I am me. I wake up in a morning and the very first thing I am aware of is pain. I take pain relief every day (including a morphine patch), but it only numbs it a little, it never goes away. So why do I then go and swim a mile? I do that because it allows me to move. If I don’t swim, I can’t move properly. I’m lucky that I live close to a health club that has a lovely pool and an even lovelier jacuzzi! https://www.ribbyhall.co.uk/about-our-health-club/facilities
In the water, I don’t hurt quite as much…and in the jacuzzi afterwards I even get some albeit very brief, pain free time. When I am swimming, I have to walk in the water in order to click all my joints back in line to help reduce subluxations. Recently however, whilst doing just that, I slipped and jarred my back. I was forced to rest up until I could move again enough to be able to put my swimsuit on. I didn’t tell, people that was why I couldn’t swim. I made excuses. After all, who would have believed that that was my reason for not going? After a week or so, I was finally able to put my swimsuit back on and since then, I have been determined to build my swimming back up again and yesterday I finally managed it. I swam a mile in 52 minutes. Not bad hey?!
I helped look after my nephew afterwards (with my mum and daughter) so didn’t get chance to apply heat to my back until much later on in the day. Once laid on my heat pad, I was able to complete another one of Neep’s relations, Veep (see previous post).
I appreciate that parts of this post sound negative, but as a whole it is definitely not. Today, I swam a mile; I relaxed in a jacuzzi; I spent time with my family; I drank hot chocolate snuggled up in pjs with my children; and I made a child’s toy! A pretty damn good, productive day!!
justinece 