Just thought I would update you all on how my physio therapy session went today.
It wasn't a brilliant start to the day as I woke up in an excessive amount of pain and managed to annoy my right hip without even trying. Before even going to physio I doubled the morphine as the pain was bad!
The physio therapy is actually taking place in the hospital where I was born, its no longer a maternity hospital but both my sister and I were born there many moons ago! The first thing hubs and I noticed was how lovely all the staff are. A member of staff worked out that Hubs and I were lost - probably through the raised voices whilst we were arguing about which was the best way to go! She stepped right in and took us to the department, joking with us that the place was a rabbit warren! I couldn't believe it, at the big hospital none of the staff could give a hoot if you are lost they keep their heads down and keep walking. If you need help you have to actively approach them. It just shows what a difference there is between a small hospital and a large one.
We were seen early!!! I should have made sure you were sitting down before I said that! Bev was absolutely fabulous explaining that she has several patients with EDS and POTS. She also went through the fact that benign joint hypermobility syndrome now no longer exists as a medical term and it all comes under EDS 3 (hypermobility). Its a shame that most of the Dr's I deal with still don't understand this.
I spent the first 40 minutes going through medical history, what joints cause me the main problems (I told her it was easier just to tell her that the only things that don't hurt are my toes!), What medications I am on, how Hubs supports me, Hubs health problems and who looks after him, so he can look after me. It was extremely thorough, she even asked about social activities and hobbies. Hubs pipped up and said "she has a blog and loads of people read it" Bless him hes so proud of me that I've had over 2,000 hits! I can't face telling him that some people may just find this blog by accident and not actually read any of it!
I then had to do my party tricks for her, these are the standard movements that EDS people have to demonstrate they can do. So the first one is putting your hands on the floor without bending your knees (piece of cake), then it was put the back of your head on your back - I didn't realise that wasn't normal until a few weeks ago! Then bring your thumb to your forearm - check both sides. Then it was do your fingers go back more than 90 degrees - all my fingers do other than my thumbs. So EDS was confirmed again but she was concerned that my heart hadn't been checked out yet for a mitrial valve prolapse which is more common in EDS patients. With my paternal grandfather having two aneurysms it is possible I could have vascular EDS, so it needs to be ruled out. She will be writing to my GP about this and the fact I am not under a rhuematologist, which I need to be.
I am now banned from performing party tricks! As they are damaging my joints and making the ligaments and tendons lax. Bev hopes to teach me what is a normal joint movement and what isn't. Its very strange as normal feels restricted and weird. Doing things the EDS way is comfortable but in the long term is making things weaker.
Bev also thinks that my nervous system is a bit confused at the moment as its perceiving just a light touch as a painful stimuli. Her finger literally touched the back of my neck and I was yelping. I felt like such a baby. She said my brain needs retraining on what its sensing as its over reacting. I said it makes me feel foolish as I know it shouldn't hurt but it does. She was so kind and caring she told me if it hurts it hurts, my nervous system is out of whack and we will put it right.
Ive now got a couple of very gentle exercises to do several times a day. I have to start with two repetitions and slowly work up to five. We are working on my core muscles - very low stomach muscles which I have to tense for a couple of seconds and then release. Its quite funny as when I did this I incorporated pelvic floor exercises as well. Bless hubs he pipes up "whats your pelvic floor?" Bev and I looked at each other and I turned to him and said "its your fanny muscles" (for my American readers an English Fanny is not the same as an American Fanny). Bev fell about laughing and then tried to explain to hubs, who was now beetroot, that blokes have pelvic floors as well!
I explained to Bev that these trips to appointments over stimulate me and that I will end up in bed for a few days due to exhaustion. She said that we would always in that case do our sessions in a private room so I didn't have any noise from other patients and staff. I just couldn't believe how thoughtful she was. She also didn't tell me to ditch the wheelchair, she understood with the POTS walking isn't an option for me. It was wonderful to actually have someone in the medical profession that gets it.
Our session ended with Bev asking me what my goals are. I said "I want to walk on the common with my dogs for hours, I want to go running again." Bev looked me in the eyes, put her hand on my knee and said "Rachel that's never going to happen" I know shes right. She continued "by having that as a goal you are setting yourself up for a big disappointment. How about our goal is this time next year you can do two ten minute walks per week". I said "I can live with that. I know I have to accept life isn't going to be the same again, its just really hard. Even though its been 4 years I still can't quite admit to myself that I can't do what I used to and never will".
Even though I've had that conversation and admitted that I won't be able to do it I'm still in denial. I think I just don't want to face it as the idea that I will never be able to do it breaks my heart. Its like the fact I use a wheelchair, yep I use it but I still can't accept I really can't walk very far. I suppose in a way its a coping mechanism and human nature, to try and banish those thoughts from my mind.
With Bev my physio I know she isn't going to sugar coat it, she's going to be honest with me and shes going to be a partner in my journey. She's just what I need right now.
Thanks for reading, blessings xxx
Ive had to edit the post as a paragraph disappeared. Sorry.