Fatigue and anger

[BaronC]

It's been a while... 30 years

youtu.be/WPKjZ6HQpNg(Not working as expected?)

[cat3]

Wish I had a remedy for the merciless fatigue, balance issues, hair-trigger anger etc., etc. that I could pass on to you Andy. ! 😧

Maybe the heat's been wearing you out ; since the Bi I can't handle the crazy temperatures every summer ; exhausting ! But also I guess we spend most of our time playing the 'I'm ok' game 'til the fatigue builds to intolerable.

When asked "How are you ?" the truth would be "Up and down" but, like most people, I smile with "Fine....and you ?"

Keep on smiling through A ! But more importantly ....who/what is the character on your Tee shirt ? 🤨

Love as always, E. Xx

[BaronC in reply to cat3]

E, it's my hero, after you, of course 😁

Wile E Coyote

Whatever life throws at you, get up and keep running! He's even tattooed on my back

[cat3 in reply to BaronC]

I'd forgotten about Wile E Coyote. I used to find his run-ins with Road-Runner hilarious ! Love the Tee anyway 👍.

How did Sharon fare on the 15th ; please tell me you filmed her zipwire feat ?

I'm still hobbling, waiting for an ortho appt 14months on. 😕 But I hope you're true to hero Wile and 'up and running' soon m'love.....

Take care of yourself and give my love to the girls..... Xx

[BaronC in reply to cat3]

Hi you! Sharon hurtled down the zipwire at 40MPH after leaping from a crane 30 metres above the ground, essentially at exactly the same height as the floodlights. She was terrified in the cherry picker but loved the descent! She was too far away to film but the club will be posting some film and a few pics in the days to come. The club raised £30,000 with Sharon raising £500

[cat3 in reply to BaronC]

Give Sharon a hug from me ! What a brilliant way of raising funds for the Dementia charity .....and with such balls. 😁 Xx

[Kirk5w7 in reply to cat3]

Hi Elaine🤗🤗

I’m finding this year difficult. Bouts of vertigo and now on betahistines because” if they help you can take them indefinitely, as you need them”.

More in the arsenal of drugs!

I found myself saying to the dr “ I know there’s something underlying but I can’t put my finger on it”. He replies “ what do you want from me? What can I do to make you feel better today?”

So blood tests to see if I am fighting a virus and check cholesterol levels to see if the new medication is doing its job. If all is well then that shuts me up again doesn’t it?

Hope you are coping as well as possible.

I think of you often.

Janet 🤗🤗

[cat3 in reply to Kirk5w7]

All sounds familiar Janet ! After 3 months and two steroid shots for injured shoulder & knee, my physio's remark was " I don't know what you want me to do".

I suggested a referral to someone who does know what to do and I'm now waiting to hear, 15 months after referral. Walking or using right arm is a nightmare !

And I empathise big time with the dizziness. I had Prochlorperazine (Stemetil) withdrawn after it was decided they interacted with heart meds ; such a shame as they'd worked so well ; (didn't you use them at one time Janet ?)

If you're like me you'll be hoping the tests show there is a health issue to explain your symptoms ...(so long as it's easily treatable !)

I hope you'll get to the bottom of what you 'Can't put you finger on' and that the Betahistines relieve the vertigo . I see my GP on Tues and I'll be asking about them for myself, so thanks for the mention m'love.

Think of you fondly too Janet..... 😑🌷

Eileen. Xx

[Teazymaid]

hi 😁I don’t think they will ever know the answers about BI .. but I do think the medical side should listen to survivors of it and actually understand what it is like and how some people improve and others not so much and also stop referring everything after the BI to it being the cause … I’m 2.5 years past accident and still improving which I’m very lucky for that ..

I wish I could find whatever needed to help and the only thing I’ve found is this group as it stopped me feeling alone and helped me understand this new world and kicking my own ass daily 😁 .. love the vid Sue x

[Painting-girl]

Made me think, and smile again, thanks Baron... x

[Nafnaf87]

And a very good morning to you as well BaronC

Thanks for reminding me, I can't believe you've done 4 years more than me with it .... I mean, you look and sound normal so you must be okay .... right?

As I keep telling all these very clever people with rows of letters after their names, unless you've been daft enough to have given your bonce a good bang you do not understand .... always reduces them to blustering bullshit .... so then when they've finished foaming at the mouth I tell them my bang was completely different to their previous "customer" and they don't understand that either they go apoplectic .... but of course because I can fish a 10 letter word from somewhere I must be okay .... right?

After 25 years I just forced the latest Neurologist to do something about the headaches, so a course of some steroids and something else with a long name start this weekend .... couldn't start 2 weeks ago because I had to be weaned off the Sertraline, you can't just stop it in case something goes wrong. I expect this will be another failure but being an eternal optimist got to give it a go.

Keep going

Best wishes

Michael

[haverfordwest]

It is infuriating to talk to so called knowledgeable people who know all about how your feeling 😡. Try this , try that, big fancy titles to what amounts to "organisation makes every thing easier". But when your head injury means you can't organise, or you don't know where to start, or you forget what and why you are doing something, their likely to be told to "shove their advice where the sun doesn't shine", well I would like to, but as always I say "thanks I will try that". As you can probably tell I'm sick of people saying "you're much better", I totally agree with Cat who wrote, when asked how you are you reply "I'm fine". Yesterday I was trying to talk to a friend and was concentrating so hard on getting the words I wanted and listening to what she was saying that after an hour I had to leave as I was knackered. But of course all those with letters after their name totally understand this!!!!!! How? How can they understand, it is only the likes of the people on here that can have any understanding and offer sympathy, humour, ways to cope etc. I'm just realising that today I may be better keeping out of everyones way as I am likely to offend some unlucky recipient! Loving the chats on here, keep them going they keep me sane 🥴😵🥴 well sane ish 😂

[cat3 in reply to haverfordwest]

....'I was concentrating so hard on getting the words I wanted'. I feel for you h/west, but also those words are quite supportive & reassuring for me... x

[haverfordwest in reply to cat3]

Thanks cat3, no one seems to get it, only the people on here. Between the tbi and losing taste and smell because of tbi, sometimes I do get a tad rattled 🤭🙄🤭 you have to laugh as crying doesn't help. Tomorrow is another day to try not to get riled by idiots. 🤦🤦‍♂️🤦🤦‍♂️😉

[cat3 in reply to haverfordwest]

The distortion of taste and smell happened a few weeks before my haemorrhage but, despite it being a common pre-curser to brain illness, it was ignored by my GP.

It felt really invasive for a year or two (favourite fragrances smelled rancid and food tasted sickening) but both are gone completely now, so no longer a big deal. Just wish I could smell the flowers sometimes. 😏

Laughter & dark humour has been the best medicine for me ; my son, daughter and I have a habit of twisting seriousness into silliness !

Keep sane m'love... Cat x

[BaronC in reply to cat3]

I've noticed, I've met you

[cat3 in reply to BaronC]

And your silliness 😆 is more than a match for mine 🥴 !

[BaronC in reply to cat3]

How dare!!

No, fair comment

[cat3 in reply to BaronC]

🤭 x

[skydivesurvivor]

so between naps, why it chat to people who’ve been through the mill too? Share the same frustrations, challenges? U may find ur able to understand/identify with our warped sense of humour? Chat soon, oh & SMILE to spite u cituation?! Take care, love to hear from you!!

[dovrob]

Hi Baron C

I'm 40+ years post brain injury, though for most of those years I've tried to hide any condition and refuse to use what I thought was the 'excuse. Yes I had a massive bump to my head, through falling 40 feet, but come on now I can walk talk and act totally normal surely I should be grateful and just get on with my life.

Sometimes though life is difficult, what with the new technology, the constant rush to get things dome and the noise, aaagh.

Yes I'm tired, but I'll keep quiet about it. Just keep getting on with things and try and keep my temper in check because after you've exploded its so much hard work trying to explain why something which others can just ignore affected me so much.

Best of luck Baron c and all my other twilight zone wanderers.

[haverfordwest]

Just watched this again. This should be sent to ALL GP's ALL so called specialists, family, friends, just everyone, and in case they don't understand, send it again. 👍🙂👍

[BaronC in reply to haverfordwest]

Feel free to pass it on!! Genuinely it's something I've felt very strongly about for twenty years

[skydivesurvivor]

got 7 years progress on me, please tell me this struggle gets easier?!! Have suffered all the above, learnt to smile to spite it though, people think am crazy but I prefer to what a wonderful, expensive job the NHS did for me, owe it to them to continue!!

[Kirk5w7]

Hi Andy,

Well said as usual, caught me at a time I’ve been feeling the same. In the last 48 hours I’ve slept 20 of them !!!

It’s relentless.

But we keep on living don’t we? Hoping for a change.

Last year I coped with the summer this year struggled!!

[BaronC in reply to Kirk5w7]

Hi Janet! Fatigue has been a crippler for me this year and I've no idea why! Keep losing minutes here and there as I nod off uncontrollably! Yep, keep on living, it's the only way...