Brain injury

[Atombomb]

Hi, I have decided to join and cannot believe how long I faffed about thinking shall I sharnt I. My ABI happened in September and I don't feel I am making any progress, I am the most positive person but the fatigue is really challenging my patients. My family are wonderful but I don't think they can understand how debilitating it is. Any advice would be very much appreciated 😊

[Bushman1926]

Hi Atom,

If you can have a listen to these podcasts. They are quite short to make them easier to take in. The fatigue discussion describes me.

(Hope we allowed links)

open.spotify.com/show/36jfe...

[Atombomb in reply to Bushman1926]

Thank you Bushman iwill definitely have a look at that.

[skydivesurvivor]

welcome! Suffered mine back in 2000, yrs it’s a hard struggle!! This site is a saviour, took me many years to even recognise the changes. Found it very frustrating. But also accepted it’s even harder for those who know us apparently is harder to accept. Chatting here with people who’ve been through the mill before helped me greatly. Hope y find the same! Text from those y only read on y phone? Who’ve actually been there & so know y exactly?!hope we can offer y support, somewhere to rant y frustrations, ask for support for silly things? Hope y know we will try, experience is a god send. Text soon, oh I found it relief to SMILE to spite the injury, they may see it & think nutter?! But we know different!! Take care & text soon? Xx

[Atombomb in reply to skydivesurvivor]

Thank you, so good to hear from you, i feel sometimes I am not worthy of this kindness, my injury was caused by a bang to the head ,clumsiness basically, no drama or story to tell. I thinks that's why I didn't feel this site was for me, but I'm so glad I joined and feel less isolated already!

[skydivesurvivor in reply to Atombomb]

Good!! Many use here to make friends & just to know we aren’t always ALONE?!!

[BaronC]

30 years for me and this still sums it all up...

youtu.be/wLs1P6Hy9aA(Not working as expected?)

[Nafnaf87]

Good morning Atombomb

After 25 (nearly 26) years the only advice I can give is take it easy. Your life, your brain, your future, do what is right for you.

Oh, one other thing: don't stop asking for the help you need from everywhere. GP, brain injury service, mental health service, local council, local MP, Headway - don't take no for an answer, keep going no matter how hard and demoralising it WILL be from time-to-time.

Best wishes

Michael

[saville75]

It's great that you've come on here Atombomb. I can tell you that I had a TBI 15 years ago and at times this forum has really, really helped me. The people on here understand what a brain injury is like. Which means so much. X

[Jpdee75]

hi atombomb I to suffer with fatigue 5years in and it’s getting easier for me. Everyone is different I have to say, you may be quicker to get better or not be in as bad shape as me to begin with. I now feel I can beat this maybe not back to my old energy levels but you never know the brain is extraordinary. My neuropsychologist back in early days told me to treat fatigue like a lodger and learn to live in peace with it, this was not the answer I wanted to hear so much depended on me getting back to my old self. I found to try and fight through this was counter productive as I took more steps back then forward I still pushed but found my limits and the lodger thing came into affect. One thing I will say is I know how alone you feel in this recovery and the self perception of negativity is all that you seem to hear, but there’s always a way. Stay positive change is hard but it may open doors that was meant to be. Ego is a fickle beast.

[Atombomb in reply to Jpdee75]

Thank you so much Jpdee75, this is so good to hear and you make so much sense. I feel today is going to be a good day so thankyou 😄

[LostGenius in reply to Atombomb]

I agree with getting to know your limits for fatigue and such and trying not to push past them in the early days of recovery as you’ll regret it.

Take things day by day and eventually you’ll see progress. It is slow and feels like one step forward and 3 steps back at times.

Be your own advocate with doctors to get the help you need.

Sorry that you’ve joined this club but wishing you all the best in your recovery ❤️‍🩹 process. Everyone has a different path to recovery.

I’m 7 years out and some days I fool myself into thinking I’m almost normal again but I went through hell for years to get here. 😉

[sashaming1]

Welcome! Keep doing things that help your progress whether you can feel it or not.

[TreesMTBI]

Welcome Atombomb and sorry to hear about your ABI.

As you've probably already seen, everyone here understands the best, what you are going through and you're definitely in the right place for support and some timely cheerleading from others.

I really hear you about all of this testing your patience. And the fatigue really does test us to the limit every single flipping time. I'm 6.5 years along and still coming to terms with the fatigue fluctuations (now not helped by perimenopause....)

The best advice I've had is to get familiar with how each task and activity you do affects your fatigue levels and also learn about your own overall energy levels - and then, try to only do a task or activity up to the point you have 50% energy left in the tank and stop, take a break.....

Lots of regular brain breaks, preferably in a darkened room, with zero distractions, no phones, screens or music, nothing sensory, the least that your brain has to process. If meditation is your thing, do that, or have a go at it if you've not done before. It works for me. It isn't for everyone but the benefits are being scientifically proven now even for brain injury.

Definitely speak to Headway if you haven't already, they've got some resources that you can share with family to try and explain what you're experiencing. As others have said, keep pushing to get further treatment. Neuropsychology is what you possibly need if you aren't already in the pipeline for it, as they can test your cognitive functioning and advise on how to deal with your symptoms. For me, I'm waiting for my neuropsychology appointment after being referred from Neurology. It's a small niche field so waiting lists can be long...

(It took me 5.5 years to finally accept I needed to follow up in the NHS after head injury/loss of consciousness abroad that wasn't dealt with sufficiently at the time, hence still waiting my referral, but you hopefully won't have to wait too long!)

People do assume that you're 'back to normal' because you 'look fine' and this is so far from the truth that it really isn't funny, is it?!

And of course, keep coming here anytime you need support or have questions. Someone usually responds as best they can

All the very best healthy wishes to you

Tx

[Atombomb in reply to TreesMTBI]

Thankyou so much, it really helps hearing others. Today my Neurology practitioner who I have been speaking to for the last few months has said she won't be calling me anymore, its good because it means they are not worried about my injury, but I think I needed those calls so feel abit lost. Your words of support are so appreciated 😁

[TreesMTBI in reply to Atombomb]

I’ve been having some therapy with NHS Talking Therapies while I wait for specialist support - they focus on depression and anxiety primarily but they’ve shoehorned me in and I’m having some CBT, maybe you can speak to them if you think you need to? It’s self-referral which makes it easier.

[Atombomb in reply to TreesMTBI]

Sounds good, I've been referred to occupational therapy, there is abit of a waiting list but see what happens. To be honest I don't know whats going on with me myself so explaining to someone else is difficult. I just know I'm not me any more, everything has changed but still the same, if that makes sense 🤔

[TreesMTBI in reply to Atombomb]

"I'm not me any more, everything has changed but still the same"

Totally.

I think this sums up TBI perfectly. Sadly.

I've been writing something, an essay I'd suppose you'd call it, titled "Who am I" and one of the lines, just like yours, is

"I'm me. But not really me."

I had amnesia after my injury and that question 'who am I' was what I came around saying in my head but I didn't even recognise my inner voice, never mind who I was 😂🤔 Didn't last too long thankfully but has left such an impact.

Hope you're feeling OK today Atombomb and that you hear back from Occupational Health soon.

Very best wishes.

Tx

[Atombomb in reply to TreesMTBI]

Thank you T

SX

[catrabb1t]

Hi Atombomb

For the first 12 months I was asleep more than i was awake.

For 12-24 months after I am still sleepy and need to sleep nearly every day. The rest of my day is very slow paced mainly trying to get through housework and I need short bursts of activity and plenty of rest. I am still in bed quite a lot because that is where I feel most comfortable. I can close the curtains - this is a big thing for me. I am much more light sensitive and it drains me when I feel tired. I had neurospychology testing and I had quite a few therapy sessions with the neuropsychologist which were so valuable to me that I do not have the words to describe.

I am now 25 months post surgery and I have been referred to a chronic fatigue clinic. I am still struggling with normal day to day chores because I get so tired. My mood is low. I have to work very hard at reframing my thoughts if I feel low. I continue to overwhelm quite quickly. I feel I would benefit from more therapy sessions, talking to someone who understood definitely helped me with my understanding of BI and my journey towards acceptance of the changes in me - also techniques to try and alleviate my high fatigue levels.

I tell you all that so you can sort of follow my journey with fatigue and main symptoms. Fatigue has dominated my life.

Your injury was quite recent. I felt like you and the people on here explained to me that the timescale was too soon. It seems your expectations and possibly your family's too, are not aligned with brain injury timescales. The good news is that Headway has wonderful leaflets that you can request for your family to read. It is important that your family members understand more of what is happening to you. The leaflets will provide you with strategies. Implementing strategies like energy accounting and pacing is very important for your wellbeing, ability to function and recovery times. Google the Spoon Theory to read a really good description of energy accounting. It is important to know.

Also phone the Headway phone line. They are excellent at explaining why your situation is the way it is.

[Atombomb in reply to catrabb1t]

Thank you so much your advice is appreciated and I will definitely look into the Spoon Theory. Take care

S X

[catrabb1t in reply to Atombomb]

i should have said that the Spoon Theory is not covered in the Headway leaflets, they use a different description for energy accounting which is good but i cannot remember it just now. For many years I used the Spoon Theory with my autistic daughter who struggled with fatigue levels. The Spoon Theory is well-known in the neurodivergent community and the way it is explained has always helped us. Basically pacing for brain injury is a must. You take care too xx

[Steveau]

hello,

It sounds like you are very early in the recovering process. I didn’t use the word recovery because it seems to suggest that the end product is a healed person. Recovering fits my experience. I am still trying to recover 21 years later.

The fact that you are communicating on here so soon is amazing.

I can’t compare your experiences to mine as we all have different specific injuries that show common and shared problems.

Just don’t place expectations on the speed of your recovery. Don’t expect others ( those not affected by an ABI) to understand. At all.

I have found that it is me, the sufferer, who has had to learn to cope with the non injured healthy people around me. This has been a long and painful process and is still one of the major problems in my life.

Make sure you get enough time in your day under the terms that give you a sense of peace.

Be patient for improvement.

I have only recently started using this way of connecting with other ABI sufferers.

It’s really helping me to make contact with you and others .

Hello to you from me .

Good luck with your continued journey.

Don’t be afraid to contact people like me if you have any really dark times. I’ve had lots of them, and may be able to make helpful comments if you need some to assist you out of them.

Best wishes for 2024