Personal · The Vision Diaries · Trigeminal Neuralgia

I’m Falling To Pieces: A Big Health Update

Both my physical health and mental health took a turn for the worse over the last few months – I’m having more issues than I know where to begin with and I haven’t been able to write for a while, which, in turn, affected my mental health too. In terms of physical health, I’m feeling probably the worst I’ve ever felt in my life and like my poor little body falling to pieces and there’s nothing I can do about it.

Thankfully, mentally, I’m feeling a lot better than I have done in several months. It’s taken me a long time to be able to write this update, because I’ve been feeling so down and I absolutely hate writing a negative post. I’ve been waiting for the inspiration to write something good. This is the longest I’ve gone without writing since I started this website, so I’m back with probably a really long update..

Firstly, the basic one – my neuralgia. I’m obviously still in pain and I’m okay with that, because I can manage my TN and it hasn’t been causing me any extra concerns. I’m currently writing this blog post from Pisa Airport. Just after checking out of my hotel, I ate a tiny tub of cherry gelato and it hurt – a lot! I followed it up with a big mug of hot chocolate and my husband pointed out that I know exactly how to cause myself the most pain; he’s right, the drastic temperature changes are the most excruciating.. But it’s my honeymoon and I’ll eat gelato if I want to!

The TN has actually been pretty consistent lately and absolutely the least of my health concerns. The weather has been good in England – fairly warm, but little need for air con and I’ve been managing well. It’s the calm before the storm though, because I know winter is definitely coming when I land back in the UK in a few hours and I’m about to be in pain all winter.

Secondly, my vision. I still can’t see properly out of one eye, but what I’m really struggling with is the vision being distorted, even more than the blindness in my central vision. I may never be able to see a straight line again. I started writing an update about this about a month ago and got so upset writing about this and thinking about it that I just had to give up.

I didn’t ever consider that a blind spot in my central vision in one eye could affect my life so much. I have one good eye to pick up the slack and, in the grand scale of things, I don’t think a little missing patch of vision is anything I can complain about – a lot of people have it much worse.

However, I feel off balance all the time, because straight lines are so wavy, and I’m really affected by light. If I’m in a busy place and it’s suddenly quite sunny, I immediately panic, because I go from being able to see pretty well, to being able to see about half of whatever is going on – and not because I’m blinded by the sunlight, even though I’m completely aware this is how it sounds!

I experienced this last at Florence train station a few days ago. I was wearing my glasses (I’ll tell you more about my new glasses on a different blog post!) because I’d been on the train reading my book for a couple of hours and when I stepped out of the train station, it was 25 degrees with bright sunshine. This makes my blind spot look like it’s trebled in size. Then I have to weigh up whether I should be wearing my glasses, which magnify my good eye, or sunglasses to help make the blind spot less noticable.. Maybe I just need prescription sunglasses, but also the faffing around in my handbag, when carrying a little suitcase, in a big crowd of people felt a bit unsafe a tiny traveller too!

I could see I was immediately on a main road and I could see it was a crossing, but everything looked distorted and patchy. My husband had marched on ahead of me, but – thankfully! – the crossing on the road beeped to let pedestrians know when it was safe to walk across the road, so I could follow the white lines painted on the tarmac and hear that it was safe to cross. It’s the little things like this that I took for granted before. I feel very unsafe in busy places, or if I’m somewhere I’ve never been before, whereas when I’m at work or home, I don’t notice that I can’t see very much at all.

I also have to add – on the other hand, I read my first two books since I went blind! I’m so happy I can see enough to read again.

Thirdly, my memory. My memory has been getting worse and worse. I don’t usually talk about this, but a few months ago, I admitted to one of my closest friends that I couldn’t remember which side of the car to sit in as the passenger and this really upset me. My memory is getting worse and worse – if I read something, I’ve forgotten it instantly. If I don’t write down a place name or the name of a shop, I’ve forgotten it a couple of minutes later. My short term memory seems to be shot to pieces and I can barely retain any information. It’s so frustrating.

I’m also losing long term memories and can only remember details from several very pivotal moments in my life. I can remember lots of things from important times in my life, but I’m missing specifics and details. I don’t often ask, but I need help remembering everything. I use the ‘note’ app on my phone every half an hour ish.

Also, the fatigue, dexterity issues and the numbness. I thought these three went well hand in hand. I have lost feeling in my toes on my left foot and I keep getting pins and needles down the right side of my right foot. I often lose all feeling in my left hand. Sometimes I’m texting and I suddenly use the use of one of my hands completely. I’m also as bloody knackered as ever. I can’t stay awake! Generally, I’m just feeling pretty run down.

Finally, my missing period drama. This deserves it’s own blog post and I will write that over the weekend! I basically haven’t had a period for over 200 days at the time of writing this..

So as you can tell, I’ve had a bit of a time and a half of it lately and it seems to have worn away at my mental health. Thankfully, I think I’m back to feeling like myself a little more and I’m going to make sure I write once a week again going forwards.

Thank you for bearing with me during this difficult time and I’m so grateful for every one of my lovely readers! ♡

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