I have a physiotherapy appointment today and I'm very excited about it. I can't remember the last time I had any proper physio. Death walking may be physiotherapy but it's a level of torture even the most committed physio terrorist couldn't take me to, so it doesn't count. It's also been getting steadily more difficult to do this past year and I need expert help to try and get things back on the right track.
Physiotherapy is vital for people with Ehlers Danlos Syndrome, there's no treatment for the condition so physiotherapy is as close as we get to being 'treated'. Unfortunately bendy people tend to have bodies which work slightly differently to the boring, non bendy kind* so we also respond differently to physiotherapy. That often means that if the physiotherapist is not experienced in working with excessively bendy people, even with the best of intentions they can do more harm than good.
Prior to my diagnosis of EDS I was fortunate enough to have had expert physiotherapy care as a shoulder patient from physiotherapists who taught me about the 'what' and 'why' of their actions rather than just 'how'. It's that grounding combined with a background as a swimmer and gymnast which enabled me to figure out some sort of physical therapy programme of my own when I couldn't access the kind of physiotherapy I needed on the NHS.
Options for people with EDS or even just basic hypermobility are very limited when it comes to accessing physiotherapy. Most local physiotherapists won't have the experience or training to work with severely hypermobile people, and in many cases that results in no physiotherapy at all. Some are lucky enough to find a physiotherapist on the NHS who has some experience or wants to gain that experience but mostly it's a case of pot luck. The expertise of the physiotherapy department at Chapel Allerton in Leeds gained by the years of working with Professor Howard Bird and his hypermobile patients has been the only option for many people with EDS who travel from all over the UK to attend as out or inpatients. Of course all that expertise will be lost when Professor Bird retires due to the insistence of Chapel Allerton's chief executive that a center of expertise need not have any one person in overall control of that expertise. This will undoubtedly mean increased disability for EDS patients unable to access expert physiotherapy.
I could have asked LC to refer me for NHS physiotherapy last week alongside the referrals he did to dermatology and orthotics. I'm sure he would have been glad to. I didn't even bother asking as previous referrals locally have been a disaster. There was the incredibly nice and well meaning rheumatology physiotherapist who had zero experience of hypermobile patients and who simply couldn't grasp that no matter how hard I worked my body would not comply with her exercises. I was so badly exhausted after each appointment that I couldn't cope with basic daily living tasks for an entire week, after which she'd do it all again. I had to stop going after a very short time. Being referred to physiotherapy for a specific shoulder condition post diagnosis worked better...but only for the few appointments the NHS would allow. Being referred for shoulder physiotherapy also meant only my shoulder could be looked at not my other bendy bits which despite their best efforts are still just about connected to my shoulders.
I decided the best thing to do was to return to my trusted physiotherapist in the private sector. She was previously my NHS physio and without her I wouldn't be diagnosed with EDS. Most importantly I trust her to do the right thing for my body. Private physiotherapy is expensive, approximately £40 for half an hour's treatment so my appointments will be limited to once every four to six weeks. As this physio and I already know each other well it won't be difficult to set up a rehab programme for me to follow in between appointments, but that regular expert guidance should mean I progress in a way I can't alone. Fortunately I receive Disability Living Allowance so can use that to pay for the appointments on top of the £100 a month I pay for private care costs.
I'd better go before I'm late!
*What do you mean your internal organs don't shift around at will? Theirs not yours, obviously-that's just plain dull!