So I'm fairly new to this world and thought it would be good to share my story and hopefully connect with others in a similar situation. Nice to meet you all! 🧠👋
On 3rd August 2020, I went out for a solo cycle for some exercise. Unfortunately I didn't make it home that day and instead ended up in hospital. I had lost control of my bike (police believe I had skidded on some service drains in the road 🤷🏻♀️) and my head and face took the brunt of the fall.😣
I fell unconscious and luckily, a man that was driving on that road, found me face down in the middle of the road in a pool of blood. He phoned for an ambulance and I was taken to Southmead hospital where I remained for 11 days.
I suffered a bleed to the mid brain (in the nucleus of the ocularmotor nerve or '3rd nerve') which has caused a complete 3rd nerve palsy in my left eye. As a result of this, my eyelid doesn't open, my pupil is dilated and I whilst I still have vision in that eye, it doesn't move up or down or towards my nose very well so if my eye is open, I have horrendous double vision. As well as this, I had cuts to my left eyelid and my lip which needed stitches.
I am still coming to terms with my injuries, both physically and mentally, and the excruciating headaches and fatigue that come as part of the package. 😔 My eye recovery is unknown and I'm finding that the most difficult at the moment as I feel like I'm grieving for my former self.
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OasisDreams
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Hi there, I has 3rd palsy with double vision due to a car accident back in 2016. The double vision did correct itself thankfully after 4 months but my eye sight was affected and wear glasses permanently. I have a lot of pressure in the right eye that was affected but it should eventually correct itself. I'm thinking of getting eye laser surgery if I'm allowed, have private healthcare through my job. It will correct itself in the end, hope you're keeping well 😊 🙏
Hi Emeraldgal, thank you so much for taking the time to reply to my post, it means a lot 💕
I'm so sorry to hear of your accident, but I'm glad you're okay! I've not come across many people with the same symptom as me so this is reassuring. Was your eyelid completely closed too?
I would 100% recommend laser eye surgery. I had that 7 years ago and it was life-changing. Unfortunately at the moment, I'm only getting half my money's worth 🤣🤭 (I seem to use humour as a bit of a coping mechanism)
I was in ICU for a long time so can't really remember if my eye closed down, but do remember I had a patch in my glasses in the right eye to help me see. This lasted for over 4 months, but eventually did straighten. I am definitely going to look into laser surgery, you've reassured me, thank you 😊
I'm so sorry that you have had this accident, very frightening to have an eye injury. I don't know much about this except for my own tbi recovery - but it's good you have made contact here - there's a lot of support and information both here and directly from Headway.
Yeah, it really is frightening and unfortunately I don't know a huge amount about it either which makes me panic a lot. I keep thinking 'am I going to be like this for the rest of my life?' 😔
I try not to feel too sorry for myself, but lately I seem to be consumed with anxiety and I used to be such an outgoing person. Now I just feel trapped.
It is a very early stage in your healing and recovery, and I think its quite reasonable to feel sorry for yourself - there must be a huge shock factor involved too. And it's pretty difficult to be positive with a massive headache - let alone everything else. So above all try and be kind to yourself and give everything some time. Tell people around you how you feel, and gather as much support as you can around you.
And keep posting here, reach out whenever you need - I think that Headway and the people here are incredibly supportive, and a fund of information, emotionally and practically - you won't need to do your recovery on your own.
Yeah it's still early days in my recovery, yet I feel like I've been like this for an eternity 😕
My partner, family and friends have been incredibly supportive so I am very grateful to have them but unfortunately they don't understand how devastating this is 😔
I haven't phoned the Headway helpline yet as I almost feel like a bit of a fraud ☹️ like I'm not 'injured enough' or that I don't have as many symptoms as others on here. Am I being ridiculous? 🤔
No, not ridiculous at all, don't be hard on yourself, because you've got a load of stuff to deal with at the moment. But you're definitely not a fraud. ( I wonder if that feeling is sort of 'normal' with head injuries - I still get that too?)
I think a sudden accident, which changes your life even in the short term is ample justification to reach out for help. It's probably getting on for the longest time you haven't been well too I guess? Those are both big things.
I know that it's hard for anyone that hasn't had a head injury to get exactly what it feels like (and brain injuries are all different anyway) but your family and friends will be very worried about you - I know that I would rather go through something myself than have anything happen to my loved ones. But they probably don't know what to do either. (Quite a few people post on here trying to find out how best to help their partner or child.)
The personal emotional support from Headway - from someone who does 'get it' is invaluable, but if you just need some pointers on the best things to do to start with, perhaps someone could ring for you first?
By the way, I think the neuropsychologist I've been seeing this year (mainly on Skype) has been brilliant to talk through emotional issues, and to suggest good practical strategies that have helped me a lot, and it might be good to get someone like that onside sooner rather than later? ( It's important to have someone you really click with - so chat to them a bit before you start ).
I've droned on far too long, but I think you're on the right track, you've posted on here - and you're using humour as a coping strategy - it's a good start, so take care, and yell when you need support 😊x
I get that 'fraud' feeling too, especially now that the main symptoms have subsided and I can see how raw it is for others. I feel like I shouldn't be bothering family and friends with all the lesser ongoing issues, even though in unison they can be a little debilitating.
OasisDreams everyone is different but what I have personally found on here is that time really is the common factor in the healing process. It can be incredibly frustrating, particularly if there is a long tail to the recovery and you aren't sure if you'll fully recover (or you're impatient like me!) . The thing that helped me was to journal my progress to ensure I recognised there had been some, no matter how small that may feel sometimes. Every step forward is one in the right direction. All the best with your own journey!
It's so reassuring to know that I'm not the only one that feels like this, but I do agree that even the lesser ongoing issues can be just as bad as the main bigger ones. I guess it all comes as a package deal as such.
Impatience is my downfall, and I feel like since I've been home I should be able to do everything I could do before. Mostly I can, but it's a struggle getting used to monocular vision and I am in fear of too many people seeing me when I venture out of the house as I'm scared of receiving cruel comments or people staring at me
Great advice on the journal and I have been keeping one since I left hospital. Hopefully when I read it back I'll see that I've made some progress, even if it's minimal.
It definitely seems to be a common feeling from what I've read so far and probably going to be the longest recovery so far in my life.
That's a very good point and I know they are struggling with this change as well and only want the best for me. I think I will phone Headway and see if I can get some advice.
Thankfully the hospital have set up regular neuropsychology appointments and she has been amazing and certainly someone I click with so I have been able to be open with how I'm feeling, even on the really dark days.
Really appreciate your reply, so thank you so much x
Just saying Hello m'dear. Good to see you've had lots of good advice here. I'll just echo that you're in no way a fraud with the injuries you've been dealt and which have impacted on your quality of life so suddenly.
It's really early days in terms of improvement, but please do talk to the Headway helpline for extra support & information.
Hi OasisDreams, I'm sorry to hear about your injury. It's important to stay positive and I would say that you are in the very early stages of your recovery. It sounds like you are recovering very quickly (and relatively well) from the injury that you had. You will learn that every person, and consequentially, every head injury is different.
My advice is pretty simple, hang in there and try not to get too frustrated with the current position that you find yourself in and grieving for the 'loss-of-self'. Your grievance is very understandable (and relatable,) but it probably won't help you in any way moving forward. I wrote at length in response to another user in the post below, which may be of use to yourself for when it comes to your recovery.
I had to re-learn to ride a bike again at the age of 24 because of my injury! I still get out on my bike when I can (like this morning,) and I'm sure that you will in the future. Stay positive.
No problem Becci! -It's nice to know that some of the stuff I write is useful to people. Haha, it's funny to hear you use the word "normal". You will learn that no two head injuries are the same (you may have even heard that already,) but it hasn't yet sunk in.
You might be like me and have a very different perspective on life and the world. I think that a lot of people get caught up in thinking about their lives in the wrong way. By that, I think that a lot of people get hung up in achieving/acquiring things. In my opinion, that's a pretty crappy way at looking at it because if ever you don't achieve or acquire something that you want, you will only ever feel sad. If you think about it, would you really want to live a 'normal' life? I would guess not, because nobody wants to be just 'normal'.
You can flip anything on it's ear and into a positive if you really want. For example, after my fall, I never drove again and my injury wrote off a lot of my 20's from not being able to have as many "experiences" as I would have otherwise, but I get around on my electric bike and trains, so it's all good. I was never one to spend money on things and always tried to keep my financial liabilities as low as I could, so after a while of saving and investing I have just bought a place. Sure, it's only small, but it is new and it's all that I need. Could I have done that without the limitations that were imposed upon me? Maybe, but I wouldn't know how my life would have turned out!
Also, in your original post, you spoke about the problems with your vision as a consequence of the neurological damage from your injury. It is early days for you yet, but you will learn that the human brain is very adaptable to positions that it is put in. You've probably heard of "neuroplasticity", so I would give it a year or two and see if there is much noticeable improvement. If your vision is still causing you some problems, I know that for other people supplements such as lucetin can be useful. There are actually plenty of supplements that have track records of improving brain function in certain domains. Please note, that I said that to wait for your brain to naturally heal first. As I'm not an ophthalmologist or a neurologist, I cannot give you good advice for you personally, but I can talk about things that I've read.
Haha, I try not to use the word ‘normal’ as there is no such thing, but must be force of habit!
Completely agree with you there, and it’s so wonderful to hear how positive you are and congratulations on buying your new place, that’s amazing! The whole situation has definitely made me realise that the things I used to care or worry about are pretty insignificant and has shown me what is really important, like my family, friends and my dog who I adore.
On the good days, I feel like I am capable of doing everything I could do before the accident with little adaptations here and there, but the bad days are completely soul destroying when I can’t leave the house for fear of someone staring or commenting on my droopy eye or my bust lip. I was self conscious before the accident, but even more now - it’s like I’m scared of seeing people.
I’ve heard a bit about neuroplasticity and the brain is an amazing organ. I’m just struggling to feel positive about the recovery as no one can tell me what’s likely to happen as it’s so rare It’s the fear of not knowing, but I guess we’re all in the same boat in that respect.
Don't worry about the 'normal' thing Becci, I was mostly playing, although it is true!
Don't get me wrong. I have bad days too. I'm pretty sure that I have said it in another post before, but this modern idea that we should be permanently happy and in a state of euphoria is pretty childish and completely flawed. Put simply, we are just relatively hairless apes with bipedal mechanics and enlarged prefrontal cortex's to have complex emotions to enable us to navigate the world and to survive. I think a lot of people loose sight of that. It's all about perspective. The fact is that if you are posting on this message board that there is a good chance that you fall in the category of the top 1% of humans that have ever existed in terms of quality of life. IF you've got a roof over your head, food in your stomach and friends and family to support you, what more do you need?
Regarding your fear of leaving the house and being prejudged by your appearance, try to bear in mind that other people are drawing erroneous conclusions from what they might perceive to be the situation. Speaking for myself, this is why I would always rather judge a cover by it's book than the other way around. However coming back to the 'ape thing', it is understandable for people to do that as we would have evolved such a habit to both survive and thrive in the world. The world today isn't what it once was though and certain people haven't kept up with the times!
You will be a very different person to me, but (even before my fall,) I could never get too excited about words that other people say or what they might think about me because they will be ill-informed on me and my situation. It got me in trouble a bit recently though as one of my best friends has stopped talking to me over something that I think is crazy. Although, I am aware that my judgement in emotions and reading people will be off due to my fall. I'm sure that we will reconnect one day though...
For what it's worth, I remember the early days when I felt down a lot of the time. I think that there is a transitional period where you will still be making sense of your situation and what you want from the rest of your life, but I'm sure that you will figure it out.
I don't know the specifics of your injury, but with mine, I think I was in a coma for three weeks or a month and surgeons/doctors told my family some grim statistics that basically said that 'there is no coming back from that'. They obviously prepare people for the worst case scenario, but when I started getting a little better, I just saw this as something that hasn't been done before, but I don't know that it can't. From then on, I just looked at myself as an experiment. It sounds stupid, but that really helped me. I now have some pretty unusual habits with the way that I live, but I feel that it helps me.
Hopefully you can find something useful in this post,
The Brain is amazing and personally I’ve got back quite a lot in some areas, but this is only a few weeks for you! Personally at that point I spent most of the time flat out on the sofa/bed with occasional rash spurts of activity like attempting to go Christmas shopping 4 weeks after cracking my skull open! That worked as well as might be expected!
Getting on, for 7 years ago now, It wasn’t a decision made with capacity! As I had no idea how damaged I was etc, luckily my wife managed to find somewhere safe to park me, and then once she had got the presents, bundled me into the taxi home.
Father Christmas bought her a very nice dress that year!
You WILL improve. It's early days yet. Your poor battered brain needs you to give it as much rest as you can. Don't be told by anyone to 'push yourself' to get better. Check with us experts, us fellow survivors, 1st
I had my cycling accident over 22 years ago and I still mourn the loss of 'pre-accident Phil'
When I first had my brain injury my left eye didn’t shut, so kind of the opposite problem of yours. I totally understand what you mean about thinking people are staring. My hair has fallen out along the scars on my head. I never go out or be seen without a hat. At least it’s easuer to cover ones head. My eye did improve over the years though still doesn’t shut properly so I’m always getting something in my eye like dust or splashes or whatever. I hope your eye will improve too. I also have paralysis (or palsy? I’m not sure of the right terminology) in the left side of my face. I always feel like people are staring. The only good thing, is it terrible of me to say there’s a good thing, to come out of the coronavirus situation, is going out wearing a mask no one can see my face. I hope things will improve for you. It’s still very early days for you so please don’t despair,
Thanks HungryHufflepuff Oh gosh, that sounds tough what you have been through. I bet the bits in your eye get quite irritating too? How long has it been since your head injury if you don't mind me asking? Have you any idea if the facial paralysis will improve? (I've read a lot lately about neuroplasticity).
My eye has started to open very slightly which is causing terrible double vision so I'm finding I have to keep it closed or wear an eye patch. I feel like I may as well wear a balaclava as most of my face is covered anyway with the eye patch and a face mask. Bloody Covid!
I don’t readily say how long ago it wa, but it is about 20 years. I think it’s the thing we were talking about in the other conversation, like haven’t you got over that yet. In spite of knowing I’m doing the best I can, I sometimes (often) succumb to the nagging doubt that I should have moved on by now, I should have got over it by now. Like someone said to you, it’s no good moping around. But in some ways I have moved on. I’m still here, every day that I wake up in the morning is an achievement, I’m still alive. The facial paralysis has improved a bit. At first I had no movement at all in the left side of my face. After years of using an electrode machine on my face there’s been some nerve regrowth. Unfortunately it’s nerves from the right side of my face which makes my face even weirder. I have no sensation in the left side of my face so when I think I’m smiling, or have a neutral face, I’m looking like a hideous ogre. Surgery was proposed at one time but it had risks and not a great chance of success. It is frustrating always getting something in my eye. My balance is very poor and I misjudge distances, I don’t know how much is due to my eye or to my brain injury. This doesn’t sound very encouraging to you! Things can improve, they do improve, they just maybe don’t get “better”. But everyone is different Anyway and hopefully things will continue to improve for you.
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