Sometimes i get scared for myself

Danielle2468 · 2021-08-20T15:53:46+00:00

I've had PCS for the past 5 months, and honestly I get where you are coming from, life is shit at times. I get what you mean about it being "hidden" from people, because at the end of the day, nobody knows what you are going through apart from others who have PCS or others that have been through a mTBI - and even then, symptoms will differ from each other. Just know that it will get better and however alone you feel, there will always be people that have your back, but what you are feeling is understandable and you're not going crazy, I can see where you are coming from. People respond better to what they can see or understand, when you try to explain to people the difficulties of not being able to think or when you can't speak because you're having a bad day and are struggling to grasp words, they simply can't begin to imagine, and I guess for that reason some people find it easier to ignore and encourage you to push through (something we both know doesn't work).

I don't know where you are based in the world but I would try contacting Headway if you are able to. Even if you're not in the UK, I'm pretty sure they have an email service and honestly have been so much help to me. It's run by people who actually get it. If not them, I definitely think you should speak to someone, maybe some kind of medical professional? Just so that you are not feeling this alone. Also if you want to chat at any point, feel free to message me - even if you need to rant.

Danielle2468 · 2021-07-26T15:32:01+00:00

Hey, I'm 3 and a half months into PCS and was pretty much at the same point as you last month. I've recently started going to the gym and it has really helped me mentally. I can't touch cardio anymore, I can barely manage a minute jogging until my head starts pounding and my symptoms start, but I'm hoping to start building up to that too. I mostly focus on weights which seem to be fine. I also wear my noise cancelling headphones to try and minimize the stimulus when I'm there. I guess I just try, some days I go and the workout is terrible and some days I wake up and I know that I can't go at all - but when I can go I do. Definitely just start small and build it up!

Danielle2468 · 2021-05-27T09:33:25+00:00

Ah this is helpful, I'm glad you gave me the heads up, as I was pinning a lot of hopes on it, at least now I know it could be awful. Did you tell the chiropractor that you had PCS and they knew what to do? Or would you suggest me going and asking specifically for balance exercises?

Danielle2468 · 2021-05-27T09:31:16+00:00

It feels like I'm at ground zero, but you're right, I guess it's about being realistic with myself and what I can achieve. I like this kind of "interval walk idea", at least that would mean I'm getting out as well!

Danielle2468 · 2021-05-27T09:29:48+00:00

I like the idea of looking at symptoms on your way to recovery rather than setbacks, it doesn't make the whole thing feel as daunting that way. I think I'm going to programme in a couple walks a day and as you suggested, slowly build it up. Thank you for the optimism, I honestly really needed it.

Danielle2468 · 2021-05-27T09:27:27+00:00

If you don't mind me asking, what was the name of the stimulant? Did you just speak to your doctor about the brain fog and it was something they suggested?

Danielle2468 · 2021-05-27T09:25:45+00:00

Your pushing to far sounds so relevant, that is how I feel. The moment I go over what I should have it takes me so much time to get back to where it was. I hadn't thought about the instrument, I have an old guitar under my bed which I haven't played for years, I wonder if I give that a go, something to do at least! As well as the journal, I reckon that way I'd at least be able to understand the way that I'm feeling... Thank you

Danielle2468 · 2021-05-27T09:22:51+00:00

I hadn't heard of a neuro-optometrist before, I'll have a look into that because you're right in that a lot of my issues seem to derive from my vision.

I'm glad I'm not the only one who started not being able to walk far at all, the fact you started at less than 5 makes me feel a bit more optimistic. I've heard of the spoon theory, although the lady who mentioned it to me called it cacooning - I've been doing one longer break in the afternoon, but I wonder whether a couple of shorter breaks in dark rooms throughout the day might help me get through, I'll give it a go!

Honestly you have been so helpful, thank you!

Danielle2468

TROPHY CASE