Tag: electric wheelchair

Posted in Archive, October 2023

Just Married

Posted on by dystoniaandme

Saturday 28th October 2023 we stood in front of our loved ones at our parish church and said I do.

Left to right: my sister Eloise, my husband Damon, myself, my brother Alexander and my sister Chloë

It was an absolutely magical day which I will post about in more detail later in the week. I’d been panicking in the months leading up to the day about my health. After two bouts of sepsis this year alone, my bladder becoming paralysed, gastroparesis, heart complications and more I was worried I wouldn’t make it through.

I talked all this through with our church Father, venue, photographer, families and we brainstormed methods of helping me pace. During the service the church put two chairs out for us to sit on so I wasn’t taxing my body and they told me to stay seated if I needed to even if I should be standing. I kept a stick that I had brought specifically from Neo Walk Sticks, as I loved the clear fizz design, close by for the marriage rite and walking the aisle; these were my goals for the days, and I was thrilled to manage them.

For the rest of the day I used my wheelchair. Dancing the night away in my chair meant that I could spend the night rolling on the dance floor which I could never have done otherwise.

My little girl slept through the service on her uncles lap
Posted in may 2021

Ambulant Wheelchair Users

Posted on by dystoniaandme

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.

Posted in may 2021

Looking forward

Posted on by dystoniaandme

Recently I’ve been on a bit of a rollercoaster of emotions. Hence why I didn’t automatically return to blogging following my son’s operation in March. I wasn’t sure where my head was at and needed to work through it. A handful of events had triggered it and I was up and down more than the seesaw at the park.

I’d had an assessment where I need to provide extreme detail of all my conditions right from the start to now. You can imagine how emotionally exhausting that can be, explaining to someone why you had to give up your dream midwifery degree, relieving the rapid decline in health over the years and what I do to cope. I hadn’t anticipated it to affect me so strongly but it did.

It’s taken awhile but my head’s back where it’s stronger. I think during these covid times where we don’t have our usual coping mechanisms it’s quite easy to feel sucked under. Previously I could have rung up my friends and been at the soft play laughing over a fruit shoot, while the kids ran themselves to sleep. Spirits lifted, dark cloud averted.

Im looking forward now, and focusing on the future. On the post lockdown adventures with my family, with having friends in for a brew and a natter. But also accepting that lockdown has taught me that I don’t need to be on the go and out every day. If my body’s saying no then PJ’s, Disney and baking is it. That’s perfect too.

What are you looking forward to?