So after quite a few months of my doctor trying to find a 'local' physio therapist, I had to travel around in hope of finding somebody who understood how EDS effects the body in a physical and exercise aspect. Turns out locally there is not much support to offer with young adolescent chronic pain and people who fully understand the illness. I was travelling at least 1 and a half hours away to Hastings and I wouldn't call that local, even though the PCT funding panel would. When we got there they said there wasn't even a programme for adolescents in the first place and I would be with patients over 50 years old. They felt this wouldn't help me being a teenager with people I couldn't relate too.
After a good year my medical team in London agreed that the best place for me to be transferred was to a Pain Management Hospital in Bath for a 2 week individual programme (I hope one day to be able to be brave enough to do a post on how I truly felt about my experience with the pain management programme but not for a while as it is still quite difficult for me to get my head around).
I had done a limited amount of exercise from my last experience, just some walking and an occasional swim while on a family holiday so I guess this was restarting the process again. I find it hard to try and force yourself to exercise everyday when you wake up in the morning and your body already feels like you have been hit by a bus or run a marathon.
I was worried that the new physio therapists would be exactly the same and try and push excersie upon me without understanding my story. I was absolutely dreading and frightened of my sessions. For some reason the word physio to me creates a big list of other words like vigorous, challenging, workout, intense, scary and pain. "I know my limits, they don't know what the pain feels like, how am I going to get through this" is what I kept worryingly repeating over in my head. But being the people pleaser that I am, I said I was willing try anything they wanted, not wanting to let them down and seem lazy yet knowing that I would just end up in bed from all of this. Fortunately, for most part of the year they work with young people with EDS and other chronic illnesses and probably saw that comment coming a mile off. They told me that I needed to be honest and that it wasn't about pushing myself but more to pace myself, with not only physio but every aspect of coping with a day of pain. They were an extremely encouraging team and just wanted to help me. So they took a completely different approach than what I had previously encountered;
Before we got into any exercise we started with a talking session of what signs I had to look for in my body and what sensations I was feeling while completing an exercise. I am very in tune with my body but they wanted me to look abit deeper. Together we came up with a list split into two categories;
How our body reacts to the exercise (the signs to look for to know your body is working hard):
- Heart rate goes up 2. Become breathless 3. Get a Stitch 4. Extra body pain 5. Sweat 6. Body starts throbbing 7. Body just gives up 8. Shaking
How our quality of the exercise is affected:
- Moves become sluggish 2. Posture becomes bad 3. Lose symmetry 4. Speed goes up/Slows down 5. Loss of control
They gave me a list of what I would need to complete everyday. Looking at the different exercises on my first session I thought, "Whaaaat!! My body wont let me do that I can barely stand up straight with my pain". But they assured me to keep it mind it wasn't what was expected of me. It was a case of what I was able to do and working at my own pace, not to please or keep up with anyone else.
The exercises were as followed:
I have always said when it comes to exercise, it feels like my body just gives up but my mind wants to go on and I get very annoyed at myself. Some of the exercises I found very challenging and some I didn't feel like anything was happening to my body at all and they were pointless. They told me I was allowed to adapt the scheme and take out the ones I didn't find challenging enough and instead work on the others. I told them that I wanted to start relating the exercises to something that I found enjoyable yet not a hardship. They put some faith back into being able to do gentle exercise without over doing it and working to my own needs. The amount I was able to do per exercise slowly increased by a couple more over the 2 week period.
I wont lie and say I do this everyday because some days I cant even lift my arms up and just have to sleep, and if I have been out walking then I may pass on doing other exercises because I am wrecked and need to rest and recuperate from a day out.
I think this kind of covers my story with physio. I think the whole point of doing these exercises is so it helps the little quality of life we have when we are doing something active outside e.g walking. The idea is that it try's to obtain muscle strength and support our hypermobile joints.