I just wanted to come on here to celebrate some wins with you.
The first is that I’ve now been living on my own for two years now (and 3 days) - this is coming from someone who never thought they could manage living alone.
My second little celebration is the process I’ve made over the past few months with my physiotherapist and today and today she felt I was really to be discharged. I’ll feel sad not seeing her but it’s one less appointment to keep putting in my bullet journal.
It’s been so helpful having home physio and having it 1:1 really helped too. My walking is very unsteady but that has slightly improved and I also now have my new wheelchair to use around the house to reduce my falls. My muscle weakness in my legs is still there and I still struggle but there has been a slight improvement. My upper body is better too; we worked on that to help enable me to push my wheelchair. One of the biggest things that my physio introduced me to was a resistance band (it’s yellow and smells like bananas and custard!) Anyway I’m doing well with that and today my physio said that she never thought she’d ever think of giving me a resistance band when we first started!
I’ve built physio into my daily routine. Some days I’ll do more other days I’ll do less but every day I aim to move my body a little. I do have to listen to my body and stop before I tire out or cause a subluxation or dislocation. (I plan to do a blog post on physiotherapy with EDS). I feel this experience of physio has been much more positive than my last experience. That was when I was make to do GET Graded Exercise Therapy which at the time was on the NICE Guidelines as a treatment for M.E. I feel GET really contributed to the decline in my M.E. and I’m so glad it’s no longer a recommended treatment by NICE.
On the lines of M.E. I’m now finally under an M.E. Specialist Service!
For a long time I have wanted and needed specialist support and my GP has been trying so hard to get me under a service. We don’t have our own local service and the many services my GP tried they either didn’t take out of area patients or there wasn’t the funding for out of area patients like myself. Finally however I’ve been accepted by a service and my first appointment with them is a telephone appointment in October so not even a long wait to be seen. They are a long way from home and I do imagine they may want to see me in person at times so I’ll have to wait and see and work things out when that happens. But yay finally! I feel heard and I don’t feel so alone now and it’ll be good to speak with professionals who ‘get it’ maybe other patients with M.E. too?
Something positive out of M.E. Awareness Month.
My final win to celebrate is my wheelchair.
I love the accessories on it, especially my LapStacker. That’s been a true game changer! My wheelchair is just more ‘me’ and it meets my needs been too compared to my previous NHS wheelchair. It’s just so light and easy to use and transport too.
I just wish I got push up/down handles but at the time I thought my backrest would be too low for handles. Handles was something I did want to discuss with the Wheelchair OT’s but that appointment was a whole other disaster. But it helped to hear recently on Instagram that Gem (@wheelsnoheels) has regrets about some of the things she wish she’d put on her GTM Jaguar chair which outwardly she loves and is the best chair she’s ever had! So that made me feel like it’s not just me.
