Lizum

As well as mTBi/PCS, I have pre-existing depression, so I know how you're feeling. Some stategies I've learnt about, though admittedly not great at doing myself yet, are:

-keeping a positive log of things that have gone well, good things people say etc.

-Keeping a gratitude diary - write one thing a day you are thankful for.

-Mindfulness/meditation

- go for a short walk, do a spot of gardening, something else that gets you out of the house, in nature, even if it's for ten minutes.

Hope you feel better about yourself and life soon.

angelite

Please don't hate your brain - not it's fault and it is doing it's best for you, in spite of all it has been through ! Your brain is remarkable, to have kept all your major body functions on track and maintained basic abilities, albeit not at the standard you previously enjoyed. It is working it's little grey wrinkly socks off, diverting signals around damage behind the scenes - no wonder we get so fatigued !

I know when I had my movement disorder, I would only go out after dark for exercise and avoided all public contact - shopping all had to be done by partner. It is no fun to have a 'puppeteer' living in your head. This 'vampire hermit' lifestyle was a huge change from the active, sociable person I was normally. I am wondering if your own lifestyle has been curtailed in this way, due to the social discomfort of your dyskinesia ? x

NooNooHead1981 in reply to angelite

Thanks Angela... yes my life has very much changed, and my lifestyle is somewhat curtailed although I try not to be a hermit too much as I don't have a choice with a daughter to look after! Playdates and school friends come first, and I guess all my friends are great in the fact that they accept me for who I am now and know I am still the same person underneath all my odd twitches and grimaces!

Brains are marvellous, you're right... getting others to understand TBI and dyskinesia isn't easy but I guess I have virtual friends who can at least empathise a bit! xx

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Elenor3

Sending you a big hug - sometimes it all gets too much doesn't it? You bob along as best you can but then it all overtakes you and you get rally low. I do hope you're feeling a bit better today......my mum used to say 'life goes on' at every opportunity.......whatever the issue - even about disasters on the news 'Life goes on' And it seems to be true, and that's how it is. However bad the day might be, in a week from now it'll all be gone, just a memory, and so on and so on. It's hard to remember that when you're feeling really sad, but when you think about it - it makes you realise that there is always the potential for things to get better. I understand about your involuntary movements.....I have a couple now, but they're decidedly funny - so I try and laugh at them,many my partner does too - and that's one way of getting by. They've changed over time (thank heavens) and are definitely lessening, but that's something I hope to look back on as well.....with a great deal of luck

angelite in reply to Elenor3

A sense of humour certainly helped me with the involuntary movements from spasms that I accrued after recovery. They can be intrusive and make tasks difficult when they keep going off during fine movements ( I spill a lot of liquids ! ) or in instances when you need to keep very still ( hairdressers, MRI ! ) not to mention annoying/painful when tired/muscles are hurting.Strangers can be judgemental when you are obviously 'different'. Some make the assumption that your mental capacity matches your physical state, others just seem genuinely uncomfortable/frightened by what they do not understand and give you a big swerve ! I am loving the current advert by Scope, regarding how to act when meeting a disabled person : ) x

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Elenor3 in reply to angelite

Yes : laughter is the only way. Spills are a part of life now, but the upside is that the kitchen floor is much cleaner (getting mopped at least three times a day). I'll look out for the Scope advert, thank you.

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angelite in reply to Elenor3

Just in case you don't catch it on TV, Eleanor : ) x

scope.org.uk/end-the-awkwar...

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Elenor3 in reply to angelite

Oh that's excellent.......I watched the other you tube videos as well. They've really got it right with that one. I'm afraid I've been on the receiving end of a few of those Thansk so much, I've shown it to my partner as well.

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Kayann in reply to Elenor3

Elenor, what a lovely response. Thank you. Hope it helped NooNooHead. Forgive my ignorance what is mTBi? I haven't a diagnosis, just symptoms. Involuntary movement is a very occasional symptom and like you I have looked upon it with humour, not to diminish it. Sorry for the daft questions.

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Elenor3 in reply to Kayann

A TBI is a traumatic brain injury .

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Gaia_rising

Your last paragraph sums it up, for me, with all of my weird background, and various training courses. Not the 'woe is me', or victim statements, but the quest to move on.

I'm trained in 'Applied Suicide Intervention', and, while there's never an absolute script, because every person-at-risk, and every practitioner are different, the desire to move on, in a positive, rather than negative direction is what I, the 'practitioner' in this situation, would look for.

You haven't always felt this bad, you have had times where you have felt much, much better, possibly long years of happiness, or maybe fleeting snatches recently, I don't know, Autumn sunlight, your daughter's smile, the satisfaction of having completed a task- it's hard to do this 'remotely', and I'm cautious not to make assumptions about you.

You might have felt this bad before, or maybe not quite this bad. You might have felt worse. Those periods were temporary, transient, they passed, as this one will. Human beings, for all their magnificence, don't tend to exist or remain in a constant state, show me a person who is happy and positive all of the time, and I will look for the flap in their back where the batteries go. We peak, and trough, coasting on those waves of internal-chemicals, and external-change, sometimes up, sometimes down, sometimes just floating along in the pleasantly mundane middle.

In my personal practice, I'd want you to think of a time you were happy, to immerse yourself in the sensory elements of that scenario, to re-live it, the sights, the sounds, the smells, every detail. You might never have 'that' instance again, but there will be others like it, there may be others better than it, because that's how life works, constantly presenting us with challenges, surprises, and love.

This stage will pass, it always has before, and it always will, every single one of us is testament to the absolute fact that we come-through that stage. It's not always pretty, and it's rarely easy, but we come through, because it's in our basic nature to survive.

If the feelings persist, or intensify, I need you to seek professional guidance, because you might need assistance to steer yourself out of this dip.

Stay safe. It passes, it always passes.

Elenor3

Wow - that was really helpful and insightful. Thank you so much.

sca2013

Thanks for your honesty. I can relate, as some days just seem too impossible. But I just keep taking action to move forward the best I can, that is once I get past the bad day or days. And making it ok that I had bad days. So my main strategy to move forward is to keep taking actions on things that look like they can help. Some work, others do not. At least I am finding what helps and what doesn't. Given that I am still alive I keep searching for things that can make my life as good as it can be given the situation. Humor/laughing really seems to help me too.

NooNooHead1981

Thank you so much for all your brilliant and kind replies.

I'm trying my best to keep going every day, immersing myself in lots of social and work activities as best I can and try not to focus on all the setbacks and reduced abilities etc.

We'll all get there!