Monday, 24 June 2024

Reflecting (a freewrite/mind-dump).


It’s been three weeks since my studies finished for the academic year, and although I’ve liked being free of study guilt, I’ve felt a bit lost. Getting back into studying has given me a sense of purpose which I’m otherwise missing from my life, and it feels a bit strange not having any deadlines to meet (although less stressful, which can only be a good thing).

Although I always feel like I should be doing something, I’ve been feeling this more intensely over the past couple of weeks. I possibly need to learn to relax a bit more over our questionable summer, and maybe come up with a new routine.

This is the first piece of writing that I’ve written since I submitted my final project, so it might be a bit rambling, but I wanted to write something to get going again. This could also be why I’ve felt weird, as I haven’t been writing at all, when I was used to doing this every day for several months. There's a chance that I might repeat information that I've written about in previous posts, but as it's a freewrite/mind-dump, I'll pretend I haven't.

I think not having the distraction of my Masters brings my attention to other areas of my life, my health obviously being the main area that I have to focus on. One positive is that I don’t have any new lesions on my brain, so no new MS activity in seven years! The other health conditions do exacerbate my existing symptoms, so the MS monster is still there, it’s just less powerful than it was, which is obviously great!

The dizziness and feeling faint all the time took over my life for the first few months of this year, but now it isn’t as bad, although I’d like to know what is causing it (I imagine PoTS but it isn’t confirmed).

I’m still waiting for a Tilt Table Test to help diagnose PoTS , which I was referred for over two years ago. Two appointments they offered had to be cancelled, but on a positive note, it looks like this might happen soon. Lupus might still be on the cards, as a doctor at Guy’s in London recognised further symptoms that could be related to it. I’ve also been experiencing strange stomach pain, which my doctor thinks could be my Gallbladder. With the potential PoTS I can’t have large meals (especially with carbs), or I nearly pass out. I have to eat small amounts of food so not to aggravate my Gallbladder, and if I dare forget to apply SPF, I have a horrible fever, rash and various other Lupus-like symptoms.

I often wonder that if I had been seen sooner for the dizziness symptoms maybe I would still be employed. Although it would be working in a job I don’t enjoy, so maybe this was a blessing in disguise, as I doubt I would have pursued writing as a possible vocation.

It’s difficult, as lack of employment interlinks with my independence, especially being able to be financially independent. I’ve been feeling quite down as I can’t work it means that I can’t really move on with my life. I know that I am in a better position than many others as I have a supportive family, I have a roof over my head, etc, and I’m thankful for not living in a war zone of course.

Years ago, I wouldn’t really acknowledge my feelings like this, which isn’t healthy. I think our society has an unhealthy attitude of saying it could always be worse to most problems, so many people’s feelings don’t feel valid even if they are. I don’t like to dwell on things too much as I think it causes more stress, so now I acknowledge the pain, process it (as best I can), and try to find a way to move forwards. I’m making it sound simpler than the reality, but I guess the gist is we all find a way to cope and survive.

Writing this blog post is a part of me acknowledging how I feel and why I feel it, and highlighting the good things in my life. Yes, I have a variety of annoying health issues to manage, but I’ll get to where I need to be eventually. Being chronically unwell I’ve learned that I need to find alternative ways of doing things, it isn’t always impossible. My goal is to be self-employed (a mix of writing, editing, TEFL teaching), write a book (I’m writing this as part of my MA), and to hopefully move away from the UK. I find that my symptoms are worse in the UK because of the climate, and I appreciate that climate change will influence my last goal, but I need to live somewhere less humid.

I’m going to try and write in here more regularly and have themes for my blog posts surrounding living with chronic illness. It’s all good writing practice, even if no one reads it.

Anyway, thanks for reading and hopefully the next time I post we will finally be rid of the Tories (good riddance), and I will be savouring the study break (the calm before the storm!)

Jo xx

*Photo of the view in my garden on a rare sunny day

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