I’m still here..

I haven’t written a post for a few weeks now. I’m still here bumbling along, at a very slow rate. During this time I have been doing my best to stay mobile, however some days are a real challenge and I am becoming more reliant on the use of a wheelchair. Matt is home at weekends and we sometimes go out depending on how I feel. I am becoming more accepting of my limitations, but some days I still mourn the loss of my old life and that in itself can be draining.

Instagram connections

I have found myself very settled on Instagram. Making connections with others, who have similar challenges. I have found it quite comforting! I have noted some fantastic snippets of wondrous resources and information such as: compression socks (who knew that tightly fitted, up to the knee socks would help) but they do! Also, I am finding some truly beautiful people on there, that despite their challenges, find humour in the every day. They find ways of cheering up others, with anecdotes of themselves and I love that as I like to do that too!

Follow-up appointment

I have recently had an appointment with the Neurologist, we are still waiting for results from the genetics test I had in September last year! Everything is backlogged here unfortunately, it cannot be helped. Adult Social Services have also still not been in touch. Therefore, I am still unable to get out of the house independently as I need a permanent ramp fitted. I also need a stair rail and a shower stool. Waiting is hard, but I need to be patient.

Wheelchair Services

Today, Wheelchair Services are coming out to assess me, I have no idea what to expect, but find that these days appointment times can mean waiting for someone to arrive between the hours of 9am and 4pm. I was told that they will be bringing a chair with them, so I’m not feeling that enthused by that. Mostly, because I hired two different chairs from the Red Cross and I was hoping this will be a better chair, one I can manage. We shall see.


So far, Winter hasn’t been too bad. I have been so grateful for sunny, dry days as it has enabled me to get out with Matt at the weekend. Lola (electric chair) doesn’t fair too well in the rain for obvious reasons. I definitely do not fair well in the cold either, it make everything feel so much worse.

Hanging on in there!

I have thinking about the future and what I can do to keep brain ticking over. I have ideas and I will share them when I feel more confident about how I am going to manage things. One step at a time, I need to keep that in my head. I’m doing okay. Life is very different and I’d be lying if I didn’t say that I am still mourning my old life. There are good days and not so good days that’s the joys of life I guess. Still on the ride, but a completely different rollercoaster!

I hope everyone is having a beautiful day!

Much love C x

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