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
Our wedding date is set for the end of next year and we couldn’t be more excited. The kids ask ‘how much longer” almost every day, and are very much looking forward to playing their parts on our special day. We have got well and truly stuck in to the planning and booking of our venues.
Playing together at Walton Gardens
This is where my arsenal of equipment that holds my body together will come in handy. We will be splinting up my knees and ankles in the hope that I can hobble down the aisle on my walking sticks. I’ve currently got a Pinterest board dedicated to walking sticks in different shades of white/ivory/champagne so that once I’ve brought my dress I can match them. However if I have to roll down the aisle that’s fine too (it’s what I do every Sunday anyway 🤣 during mass), so I can always spruce my chair up with flowers.
Example of different wedding canes
One of the big factors for us is getting me through the day without a trip to A&E or an ambulance having to be called. Sounds simple really, doesn’t it? Yet it’s a very real possibility. I tire very quickly these days and my body goes downhill when that happens, so utilising my aids and working breaks into the day/sitting down frequently will be important. Having these planned in advance seems best for not running out of spoons* too quickly.
Spoon theory explantation
I’ve spoken to our photographer about my disabilities and he’s had experience with people with similar issues. Hes happy to listen and go off what I’m saying. If I’m doing well then fab, not feeling so hot then that’s ok too we can rejig positions. I was quite nervous about this conversation so this was a big relief that he was cool with it.
I’m ever so slightly taller than my partner which I am over the moon about as it removes all temptation to break out the heels I hung up years ago. I used to love love love a chunky wedge heel. But it’s just asking for trouble. So sensible flat shoes it is with good ankle support it is – to be honest I’d be quite happy barefoot but I think the church and the hotel wouldn’t be as thrilled. I’ll be gradually breaking these in as part of my EDS means my skin breaks super easily. It takes me months to adjust to shoes even when they’re a perfect fit without my feet bleeding.
An old photo of us because im always just taking photos of the kids and the garden 🤣
Dystonia and Me 