It’s been a good few months since I posted an update of how I am and what has been happening. So I thought while I’ve got a bit of energy, and some quiet time I would do a bit of an update.
A lot has happened in the last four months or so since I last properly blogged. In that time my health has been rather up and down, and the summer heat here in England was quite a challenge to cope with given the heat intolerance that I suffer from thanks to M.E.
I got my wheelchair from wheelchair services in mid July, and have started writing a post about my experience with wheelchair services which should be ready to be posted very soon. Although not perfect by any stretch of the imagination, the wheelchair provided supports my body a lot better than any previous wheelchair I’ve had. There have been a few niggles but these can be lived with and are much better than being trapped in the house; which without a wheelchair I would be.
I managed to have an afternoon out at the coast during the summer too, it was lovely to be out in my new wheelchair giving it a proper test run. And for once we made it to the coast when the weather was actually nice; although to be fair there wasn’t a lot of bad weather to be had over the summer this year!
The heat though was especially difficult to cope with, and some days it was just too hot for me to be outside, even in the shade. And so I spent many days inside doing my best to stay cool in front of the Dyson fan. Possibly the best thing I’ve bought this year as it has been an absolute god send during the hot weather, where previously the entire family would have to do without a fan because the movement of a standard fan makes me feel sick and dizzy, and the noise of a tower fan is too loud.
Thankfully the weather cooled down a little in August when I had to travel to London by train to Kings College Hospital. Again there is a post in the making with details about travelling by train using a wheelchair. This was the most frustrating and disappointing day I’ve had in the past four months, as having travelled all that way, with a few difficulties during our travels, I arrived to find my appointment had been cancelled because it was with the wrong doctor! They had sent a letter out to inform me of the cancellation and my new appointment date the week before (which actually arrived at home while I was being told this at the hospital!). So now I have an appointment booked for the end of May next year; that’s the earliest one available with the specialist clinic I need to see apparently. The only good thing to come from the London trip, other than the obligatory McDonalds (family tradition from previous London hospital trips!) and the experience we gained in managing a wheelchair on trains, was that I got the details required to request transport for the appointment in May. So hopefully there will be no more train drama, and the trip will be a little bit easier on my body, as I struggled with the crowds, the noise of the underground particularly, and the stress of finding the right trains when we had to make all the changes required to get there!
September saw an appointment with the Occupational Therapist at the CFS Clinic. Now this was an appointment I was dreading, after my experience with the consultant there back in May. However it went a lot better than expected, and I’ve been managing the very gentle stretches she has given me to do each day. I have another appointment in the coming week, so we will see how things progress. I’m still a little on the wary side but at the first sign of things worsening I will stop.
At the moment life isn’t proving to be particularly easy. The waves of fatigue hit earlier in the day than I’d like, and the pain some days is ridiculous. I am however coping, and managing to do a few bits and bobs like blog, knit and even read a bit of a book as long as I’m careful with how much time I spend on each one.
There’ll be more from me soon, all being well.