Nobody can miss that the UK has been hit by a rather hot heatwave and that people all over the country are basking in the sunshine and making the most of this glorious week.
I used to love the hot weather. Always made me smile and feel happy. I used to love sitting outside with the kids, watching Adam splash in the paddling pool and Lewis chilling out on the hammock.
I’m not really feeling the love for it this year. Yes it’s nice to feel all warm and bright but the symptoms it’s aggravating are driving me insane.
I’m trying to spend short periods outside so that I can boost my low vitamin D but it comes with consequences.
I really cannot explain the pain deep inside my arms, shoulders and neck. It’s like a fire is roaring it’s way up and down my nerves and muscles. My skin is hypersensitive to touch, so much so that it’s causing me to dread having hugs from my children. How bad does that sound?! I’ve never not wanted hugs from the boys. I love squidging them and showing them I love them. Comforting when they are sad, celebrating when achieved something, but right now I just cant stand it.
I’ve got constant pins & needles in my fore arms and hands & fingers. My finger tips are still numb and to be honest I’ve really had enough.
It’s not just the physical side for me that causes my dislike for the hot weather, it’s the affect it has on my 8yr old son and other children just like him.
Lewis cannot regulate his temperature properly and is unable to have more fluids, as we are all told to have in this heat.
He is spending his days lying in just a pad with 2 fans on him and a variety of flannels & towels soaked in tepid water draped over him to help bring his core temp down.
We’ve had to arrange for him to have a 3rd IV infusion of Saline this week due to the heat and his losses caused by antibiotics and a L/URTI. He joins myself and Adam with his course of antibiotics as both Adam and I both have chest infections. I can tell you I’m fed up of the sight of meds!!
This heat is really bothersome to so many people, friends we have have children who’ve had kidney transplants and need to keep a certain amount of fluid of board to keep the kidney happy and healthy. How they manage this I have no idea. I’m in awe of the parents and how they manage to stay on top of it all.
I’m sat trying to work out how I can help my symptoms and stay cool and happy in my wheelchair. Right now it is a beacon for heat as the arm rests, seat pads, back supports etc are all black and roasting me inside out!
I shouldn’t really moan. There are people out there far worse off who need all our support to remain safe and well in this heat.
Please can you all check on your elderly neighbours, check they are keeping hydrated and cool. Offer to help them our. Be kind and considerate and don’t let the heat turn you into a big grizzly bear, over reacting at everything.
Any signing off. I’m toasting and I need a drink.
Transverse Myelitis & Me, With A New Addition! 