It’s been a while since I last posted on here. School holidays have been a tad hectic, keeping Adam occupied whilst grinning & bearing my symptoms.
I’ve had to make sure I am awake when Adam is as it wouldn’t be fair on him if I slept day in , day out.
We’ve managed 3 outings -Paultons Park thanks to The Rainbow Trust, Starlight Popham Escape at Popham Airfield and a morning at Southampton FC ground, St Marys for the Saints Disabled Supporters Association fun day where they had stalls of all different items that were of use to/support disabled fans and their famlies.
I was able to pass out flyers (that I had designed) for Southampton Doing It For The Kids.
I got to speak to Matt Le Tissier & Franny Benali and some of the old crew from the FA Cup winning team. I was able to pass on information about the charity and hopefully will turn in to something.
All these day trips have lead to me being completely wiped out for days after. Burning arms, pins & needles, heavy arms and legs and more, it is just a nightmare. It really frustrates me to ask for help but on those days I end up nodding off anywhere and everywhere.
The worse thing that has happened this holidays is embarrassing not only for myself but for Paul as well. He hides his embarrassment well but I know him inside out!
One Saturday morning I was woken up by a very wet & cold elbow. Being half asleep I assumed I had it resting against my bed bar, that I use to sit up in bed. I was so so wrong. When I looked down I discovered that my night bag and leg bag had become separated from my catheter valve and had, over the course of the night, proceeded in allowing my catheter to free drain all over myself and the bed.
I was absolutely soaked, the bedding was soaked. Thank goodness for my terry towelling mattress protector that the Spinal Injuries Association – Healthcare had given me when I first came home. It saved the mattress from being soaked and was a relief to realise that it wasn’t as bad as I thought, but it was still bad. One of the bags had emptied onto the carpet and was going to take some clearing up. All hail pet odour spray!!! It worked a treat. As for cleaning me up, it took me a good hour and half to get myself and the bed stripped and changed. The biggest hindrance was that I kept crying. I was mortified and embarrassed that my husband had to see me in that state. I always said I didn’t want him to be my carer but in that instance I needed him. Reality kicked in as he needed to get back downstairs as he was Lewis’ carer until 8pm (I should have been doing that not Paul) and I had to sort myself out. So tears or not I had to find the energy to get myself changed and sort the mess out.
My arms neck and shoulders burned as I tried to get my top and trousers on. Sharp needles from my shoulder blades to my elbows.
I managed to get dressed, much slower than normal and managed to get downstairs and into my chair. I felt like I had to hang my head in shame. I know I didn’t but that’s how I felt. Everyone was carrying normally, no looking,staring or comments. The washing machine was on doing its thing and all was normal.
I know my embarrassment probably shouldn’t have been such a big thing but it was the first full flooding I’d had since coming home. I’ve had minor floods where my leg bag has separated from it valve when in chair and it’s run all through my trousers, over my chair and onto the floor. In fact one of these episodes happened at Lewis’ Birthday BBQ Bash. My poor sister in law had to rescue me and kindly wheeled me down to the disabled toilets. Instead of leaving me to it she helped me get out of my wet clothes and change into clean dry ones. She didn’t bat an eye at having to help, in fact she did it without a second thought. My embarrassment was almost unnecessary.
Any way I’m learning slowly that I needn’t be embarrassed around my family. Their understanding, compassion & love for me means they’ll help me no matter what and for that alone I shouldn’t be embarrassed around them. Another step I need to take on this horrible roller coaster ride called #transversemyelitis