I suffer with long covid since 2021. In October 2023, I suffered a fall which resulted in a bleed on the brain and subsequent brain injury. I'm ok in many ways, I just struggle daily. I don't know what day it is, what time, I can't write down number sequences that are right in front of me, I can't spell correctly anymore (thank god for spell checker)I'm just so tired, confused and angry all the time. My temper rages & I don't know if this is because I'm so tired, the brain injury, the confusion or all 3.
I just don't know when this will end & although I wasn't seriously injured in the fall, I feel that I'm battling every day to feel normal again. Dealing with LC & now this is taking its toll. Everything & everyone irritates me but I'm sick of feeling alone in all this. Sorry for the long rant, but is some of this normal after a brain bleed?
Please help me understand
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Missy_Ports68
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This is ultra normal Missy. Short-term memory, concentration, anger levels, literacy & numeracy, can all be badly compromised after a bleed on the brain, as can mobility.
You say you weren't badly injured, but a bleed on the brain can disrupt normal brain function, and only 5 months on from the bleed is such early days ; brains don't mend so predictably as other organs can.
Many of us have had to let go of who we were before the injury, to accept & manage the changes over the following months and years.
I hope you'll be one of the lucky ones whose issues will gradually become less severe, but please allow more time, along with rest periods, gentle exercise, good diet and plenty of hydration to give yourself the best chances.
Hi cat, thank you for replying, I feel better just knowing that this is normal for now. Sometimes it's the unknown that can confuse & scare you more.I definitely need more rest, relaxation and to take more care of myself. I've been acting like this was just a bang on the head, that I'm ok as I'm not too badly injured & all I've done is prolong my mental recovery..I even moved home 3 months after the fall, I must be crazy. I will take up my mindfulness again, and look after myself more. Thank you for helping me see that all of this is a new normal for the time being & that I'm not exaggerating or imagining all this, it really helps knowing other people know how you feel. Thank you.
After coiling for a SAH, my consultant warned my family that my life would be very different from then on. But, once I could think for myself and heard these warnings, I clearly remember thinking 'No Way !'
Once home, I decided to prove I was unchanged in any way but went about it in a childish fashion. I ordered a bright yellow bicycle (bright yellow to prove the point with bells on) and insisted on walking alone to the local shops ......despite partner annoyingly following at a distance.
It took around a week or so to realise my ignorance of brain injury issues. My daughter had done research whilst I was away and joined Headway for support. She convinced me to join and I found post after post describing similar failed attempts to resume 'normal' life.
It was so reassuring coming here to find the only folk who could truly empathise. I hope it'll be the same for you Missy.... x
hi missy and welcome to this group .. yeas everything you wrote in your post is normal for a head injury .. you are very early on in its recovery and you will find plenty of ups and downs along the way .. this place has helped me understand the new me . I’m 3 years pass my accident and been finding it difficult to except my limitations I had always thought I could beat it but it’s not always about winning your challenges it’s also about excepting your limitations .. your will have some honest advice from people who really do understand .. once again welcome to the group .Sue 😊
Thank you sue, and I do think I need to accept the new me and work on what I can do, not on what I can't do. I've been so lucky to not be badly injured & I think that's why I've downplayed my injury & I am now struggling to accept that 5 months after I'm still not back to me. Its nice to know others know & whilst the doctors are good, they don't really understand how you feel. I need more rest and to talk more. Thank you again.
💯 true .. I did injury other bits of me apart from my head and they were difficult and painful but the brain is a totally different scenario .. I as doing well with the other bits of me now I’m realising how difficult life is with the new brain 🤪 I’m sure we will get there with exciting and no Dr has a clue to what is invisible and this is the best place to ask questions , moan and groan , and get sympathy and support 😊 sue x
You poor thing it does sound awful and if you were not expecting to still have problems at this stage then you have been ill advise by the doctors I’m afraid.
We seem to get give a leaflet that says we will be better in a few months and that’s it. I was lucky my GP said it would be months and signposted me to here quite swiftly.
The symptoms you describe are typical I’m afraid. Pushing through and trying to ignore them will only make it worse. You do need to ease up on your expectations and just do what you feel able to do for now.
You may see some improvement slowly but I am a year down the line and still struggle to read and process what I see and hear. The headaches worsen when I overdo it.
Rest when you can and try short spells of brain activity with regular rest.
Try and get support from a neurorehab team if you can. The bleed shows that there has been trauma and you had fatigue prior to that as well. The fatigue from both will be a lot to cope with.
Be patient. Stay in touch on here and let us know how you get on.
Thank you for your reply and I feel better knowing I'm not so alone. I'm trying to focus on rest now, doing things that make me happy (I'm at the hairdressers today, that will be fun as I can't lean my head back) but sometimes it's the little things that help.I've bought myself an art set, I can't paint or draw but it may help me relax and put my feelings down on paper, even if it's a mess.
The neuro team did say 6-12 months but sadly the support isn't great. I'm waiting on a referral to ENT & neuropsycology and I'm trying to accept my limitations every day.
Knowing I have other people who know how I'm feeling, will help.
As everyone has said M, the fatigue and anger, and the problems writing down numbers and spelling are all part of the brain injury. I had the same problems with numbers, I couldn't write down so much as a telephone number, and I stopped being able to spell - both very confusing at the time as my major was mathematics - both things have come back now, but it took a while.It's important to remember that every brain injury is different and everyone has a different healing trajectory, and the seriousness of the injury doesn't always indicate how long things take to clear up - but there are also a great deal of symptoms in common between different injuries, and as you've found with Covid, things can take a while to resolve.
By the way, I caught Covid last year and it knocked me back in my brain injury recovery for months - so it can definitely have a neurological impact.
A bleed that picks up on a scan is pretty serious in the scale of these things, so please treat yourself gently. Pushing through to normality is usually counter productive, although it's a natural reaction - and what people around you tend to expect, which can be harder to handle. You need some gentle exercise and to take a brain break away from any screens, noise and light for 10-15 minutes every hour - sounds crazy, but it helps a lot.
Hope your referrals come through soon. The neuropsychology and neuropsychiatry labels aren't to be worried about by the way, no-one seriously involved in brain rehab thinks that this is 'all in your mind' ( as everyone has said, it is actually all a very normal result of a brain injury) but it's the way the branches of medicine have evolved over time and both neuropsychologists and neuropsychiatrists that specialise in brain injury are the absolute best people for helping you deal with this ( apart from all the lovely people on here, and the Headway helpline of course!)
Hi Missy, welcome to the group. You've had great advice from the lovely folk on here, which is how this group works! Medical people will try to help us, but none of them truly understand the experience of losing the life you used to live, and having to adapt to living a new life. People here understand and will share their experiences with you.
I'm two years into my brain injury now. In the early days I listened to a podcast that talked about the terrible depression we all seem to go through. The podcast suggested viewing the depression as grief instead, a natural and understandable mourning for the old version of ourselves. In those early days, it made sense to me that Purple v1 had died. Now that I've re-tuned a little bit, I think it's more about getting used to living in a brain that operates on a different frequency to the old one. My fundamental self is still the same, I have the same beliefs, morals, love of nature etc. But my memory is shot, I don't recognise anyone's faces, and I absolutely need routine to keep anything in my head. I went to the gym last night, to a class I've been doing for around 15 years. I haven't been able to go for a few weeks, and it was like a whole new experience. Things don't stay in my head for long unless I see or do them regularly.
But, as usual, I'm waffling. It's all been about baby steps, learning as we go. By the time we realise we need a break, we've usually overdone it and will need a day or two to recover. Take the time you need to rest, we all need it very badly. I'm lying in bed right now with a cat on my lap. I'll be relaxing all morning to charge up for my visit to the hospital this afternoon (lung docs, I've got long covid too).
Hello missy I didn't have a bleed on the brain I had a brain tumor. But I get it I really do. 2019 I got mine out. But its hard I didn't know my age date of birth or my address for about 2 years. What I'm trying to say is it takes time and it's so hard. It's sole destroying but you will get there. Please remember it taken time and please take time. I didn't and we'll that's a different story.
It is very hard because people do not realise you have changed. My biggest hurdle was accepting my life had changed. I think that is the starting point and it calmed me - the new normal is different.
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