Posted in Archive, August 2021

Adapt, Rethink, Go

We recently had to return the power wheelchair we had on hire. It had been with us for the best part of a year and had quickly become a very integral part of daily life. It reduced my pain, dislocation frequency and enabled me to get out and about everyday. It was freeing. We’d hoped by the time it had to be returned that I’d have been seen by the local wheelchair service for an assessment as currently I dislocate my fingers while trying to push my manuel chair. However it’s a long waiting list and an appointment date is still a while a way.

In the meantime I’m reassessing how much activity I can do and what I do each day. My head deffinently believes I’m more capable than what my body thinks I am able to do. A lot of this week has been spent resting and trying to find a happy medium. However I’m also currently on week three of my period and I know that when I have extended bleeds I generally feel rubbish and my joints and muscles seem to be worse in general.

I’ve started introducing sleep hygiene into my night routine to help improve the quality of my sleep and to see if it improves how rested I feel. I’m trying to have no screens for an hour or two before bed. Instead I’m reading and crocheting. This has also given my mental health a little boost as well which is positive.

I’ve had a gyny appointment come through for the end of September, so not long to go now. Hopefully this one won’t get cancelled.

Posted in Archive, July 2021

Injection Day and referral thoughts

Picture of Rebecca wearing a facemask and holding a takeaway coffee cup sitting in a hospital waiting room waiting for an appointment. Wearing a brown cardigan, black white spotty top, blue disposal facemask,
Waiting to see my neurologist

Today was botox day up in London with my lovely neurologist. He’s happy that the medication we started on a few months back is keeping me far more stable, which is amazing, so we are keeping that in my treatment plan. I’m currently on a medium dose so we have room to play with should we need to come winter when I typically go down hill due to the cold.

I’ve finally gotten the date for my video fleursoscopy which is the middle of next week. I’m a little nervous but it will be good to shed some light on what’s been going on internally and if there is anything specific that we can do/change to tackle it. This is to tackle the chronic aspiration.

Then it’s on to blood tests. Whilst I don’t mind these particularly, my veins are world class players at hide and seek. No matter how much I drink before hand they like to hide or better yet collapse. I often leave blood tests looking somewhat like a pin cushion. These are being done just to double check there’s nothing being missed and causing any issues whilst we wait for Gyny to see me. They were meant to see me almost a year ago. However they keep rearranging and cancelling my appointments, which my lovely GP is chasing. In the meantime I’m left with regular pain flares that leave me doubled up in pain.

I’m hoping now that more people are vaccinated that appointments/refferals may start going back to normal. Specially orthotics is one appointment I’m looking forward to, my knees and wrists need new splints. It’s not an urgent appointment in anyway but it would make day to day life a bit easier and reduce pain a little more.

In the meantime I’m ticking along. I’m looking forward to the schools breaking up and making the most of the summer holidays before my eldest starts primary school full time.

This made me laugh a lot. Credit to Theraspecs
Posted in may 2021

Ambulant Wheelchair Users

For those who don’t know me personally when they see me coming along me in power chair they naturally presume that I’m wheelchair bound. It’s always an interesting situation when they see me move my legs so I’m more comfortable, or stand up to get in to the house. Sometimes I need the chair full time due to injury or severity of spasms, other times I need it due to length of time we’re out for and my body cannot handle it.

Whilst I’m confident in using it and appreciate how much freedom it provides. I’m not quiet used to the interactions yet with people with nothing nice to say. There’s been a few occasions of people telling me if I lost weight I wouldn’t need the chair, or to stop being lazy and walk. Presumptuous really considering they have no clue why I’m in it but also hurtful. I’ve always been a sensitive soul and I need to learn to toughen up.

I’m currently using my chair full time due to yet another injury thanks to my EDS. I find it odd how many people still are surprised by ambulant chair users. It’s an area that deffinently needs more discussion and awareness. I’ve used wheelchairs on and off for years due to my many conditions, as my EDS has deteriorated the use has increased. It enables me to still function and go about my day to day life independently, something that is very important to me. I couldn’t be more greatful for my chair.

Using my power chair to get home from church.