So chatty, I’m so chatty. Today, Physio. I’ve been going to Physiotherapy for over 20 years on and off. And though I know a lot of people have had success with it, and though I’ve recommended it to people, I’m ashamed to say that it’s never worked for me. I’ve urged people to go to Physio based on other people’s success – seeing people develop and get well after strokes, or learn to walk again with prostheses after amputation – but not from my own experience.
When young, the Physio just didn’t work: the people doing it didn’t really know what was wrong, what they were treating. Then there were the years where, because I was young, the specialists treating me thought I was lazy when I couldn’t do the movements, or when I said they caused more pain than they solved, thought me a liar. I’ve been to NHS therapists, Private therapists and people who invented elements of what are now universal treatments. Hell, I’ve been part of a group of Hyper-Mobile Chronic Pain guinea pigs – but none of it worked. My last attempt was 2013. It was going well, but then it all went wrong. I was attending a very well appointed hospital in West London. I was there for Sciatica-like pain in my right hip and down my leg – pain that was stopping me bending to put on socks, and even put my foot on the floor – I kept getting stuck like a vast flamingo- a knee stuck up near my chest. My Physio was, well, cold. And aloof, and quite frankly not very kind. She gave me exercises that needed equipment and space I didn’t have. She gave me 4 per week. I just couldn’t keep up. It takes me a long time to learn movements, and a very long time to make them part of my regular life. I was just overwhelmed. I baulked completely when she wanted me to do Hydrotherapy. I’m going to level with you, I’m very, very short sighted. I only have one working eye and the ‘good’ one uses quite a thick lens. I’ve not been in a swimming pool since I was 11 – just after I needed glasses. That experience of not being able to tell water from wall, who was coming towards me, or where I was going, made me scared of pools. Then there is the embarrassing stuff: I have Acne all over. I’ve had it since I was 12 – I’ve never worn short sleeves or shorts, so a swimming costume (Hell, I’ve not worn a swimming costume while having breasts)…. I told my Physio this, but she really didn’t care. My concerns and fears, my embarrassment, made no impression on her. So I stopped going. I felt awful. I’d asked for Physio, I’d got it, and then I baled. I did contact the department and told them my problem and they cancelled my appointments, but they did not understand, and they told me.
But this time it has been different. Today, at my last appointment, I got to tell my therapist how good she has been and what a difference it has made. What was so different? Firstly I saw her monthly, rather than weekly – so I got to ease into and really practice the stretches and exercises, and to learn if they caused more pain than they cured. My Physio asked me what I wanted to work on, rather than just looking at what my GP had referred me for and working just on that. She also listened to and questioned me about my medical history, and when I mentioned EDS etc. she knew what I was talking about: her specialism was Hyper-Mobile people. She also accepted what I said had happened as true and gave me advice about it. So when I explained that I had an accident and that the Torticollis I suffered recurred regularly, she believed me and explained why it happened: previously all Specialists and Physiotherapists had crinkled their brows and ‘hmmmd’ and asked ‘really?’ etc. The cherry on top of this was her attitude. She was calm, un-rushed and was not condescending – I did not feel I was wasting her time, or was one of 100 people she was seeing each day. Her ‘bedside manner’ was spot on.
So, Thank You Hannah. Thank you for listening kindly and giving me genuinely useful movements that I can do just about anywhere. Thank you for believing me when I told you all the odd things that happen to my body, and thank you for not making me feel like a rubbish person in a rubbish body.
I was treated at Clayponds Rehabilitation Hospital. I saw a lot of people having hard-core rehabilitation – the stuff they show on TV. People with replacement limbs, stroke victims learning to eat etc. http://www.nhs.uk/Services/hospitals/Overview/DefaultView.aspx?id=110484
Next stop: Pain Management. Let’s see how long the waiting list is.