Alone in this: Hi. I had a TBI in December from a... - Headway

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Alone in this

Flosmum04 profile image
32 Replies

Hi. I had a TBI in December from a fall. It’s been a really hard road getting back to a stage where I feel I have most of my life back on track. The problem is, I have spent the last few months fighting this and telling everyone that I’m fine and am moving on and I now appear normal to most people. But I’m not. Each day is hard work, trying to appear normal, getting on with life, it’s hard work. I always have pins and needles and numbness on my left side of my body and a constant headache, but I just pretend to everyone that I’m fine. I feel totally on my own with this. I don’t want to go on about it to people so I don’t mention it, but my life has changed beyond a doubt, just no one else sees it. Should I have not pushed so hard and pretended everything was fine? I hated being treated differently but I could do with someone understanding. Hence why I’m writing this! I’ve been getting weird flashbacks from the trauma of the accident I think. Haven’t mentioned them to anyone. The other problem is that no one really knows what happened. I’ve told people what I want the to know, what’s easiest to cope with, but if I’m honest, that’s something I also need to deal with. Thanks for listening. I feel better already! X

32 Replies
pinkvision profile image
pinkvision

Hi, coming to terms with the reality of your situation is important. Have you been to your GP, hospital or specialist? What did they say and do? Phoning the headway help-line may help with advice in moving forward. There's a bit of a health authority lottery in getting treatment and therapy so let us know whats happening and going on because people have been through it and may be able to give advice to help you out.

The good news is that finding the right path can lead to a full recovery. Don't be afraid and stay positive.

👍

Flosmum04 profile image
Flosmum04 in reply to pinkvision

Hi. Thanks very much for your reply. I’ve not had much support other than from my OT. She helped me initially to learn ways to adjust but she’s so busy I don’t hear from her much. Apparently I’ve slipped through the net with neurology, my GP is chasing an appointment up but it’s been months since I’ve seen anyone. I know they can’t fix it, I would just like to have a chat with someone who knows and try and work things out a bit more now that my cognition is better. Initially I had phone calls from neurology and the Gp when I first got home from hospital but I can’t remember much from those days. Headway is a good idea. I will give them a ring. Thank you for your support, I know I’ll get there and most of the time I try hard to be positive but some days I just want to give in to it all and give up for a bit. It’s so hard keeping up a false front to the world. I’m sure I’ll be ok, and wishing it hadn’t happened is no good, but I feel so different from before, even my family don’t realise. Thanks again for replying. It’s been very helpful x

pinkvision profile image
pinkvision in reply to Flosmum04

It may be a good idea to be honest with people, hiding your condition will take a lot of energy out of your system and people will expect you to be who you were rather that what you are now.Slipping through the net is a very common excuse from the health system, what they mean is that they have very limited services.

Joining your local headway group would help because there will be others in the same situation and will understand you. Sharing experiences will provide you with recognition, maybe take someone with you so they can learn to understand also.

Youtube also has many channels and there are also peer to peer groups on social media such as facebook.

Here's a really good resource for yoga activities dedicated to TBI

loveyourbrain.com/yoga/videos

Flosmum04 profile image
Flosmum04 in reply to pinkvision

Thank you very much x

Morinagirl profile image
Morinagirl in reply to Flosmum04

Hi, I too had a fall which caused my tbi. I realised quite quickly that recovery wasn't going to be easy because I rang Headway very early on. They are very supportive. I haven't had any other support from the nhs system. I haven't had one face to face appointment with my consultant who has now declared that any symptoms I am now suffering are likely to be permanent and therefore I am disabled. Well, that's his opinion ! I am not giving up just yet. Be kind to yourself, telling everyone, especially family, that you are not feeling okay will be a huge relief. The biggest thing I have realised is that recovery can take a very long time

Writeronstack profile image
Writeronstack in reply to Morinagirl

So glad you decided you weren't 'disabled', Morinagirl - the rest of your experience is mine too. Most doctors seem not to know about brain injury. Love your patience - that has given me a great deal of encouragement - thank you for being there. I made the mistake of deciding I was okay, after a month, and then started acting 'normal' - of course leading to a major collapse - unable to get up in the morning etc. So one morning, thinking 'there must be others in my position' - looked up headway. Invaluable.

And to Flosmum04 - I am in the same boat - Bits of my family are not really taking this on board, particularly close family, who cannot reconcile themselves to the fact that I am no longer the helpful person who one could ring up, and they would drive over at the drop of a hat to help out with something..... :) does this sound familiar?

Morinagirl profile image
Morinagirl in reply to Writeronstack

Even the consultant doesn't seem to be fully understanding of the aftermath of a tbi ! I am sure he is a capable surgeon but there is so much more to brain injury and my final diagnosis was in his words, an educated guess !

Flosmum04 profile image
Flosmum04 in reply to Morinagirl

I haven't seen a consultant since I was discharged from hospital, I really feel like I could do with talking it all over with someone who hopefully understands how it all works and can give me some idea of if the things im left with now will be permanent. Its so hard to get someone who understands isn't it. Im glad you are not giving up, I think we have the same mindset. Thank you for your comment and good luck with your recovery.x

Cornishboxer2 profile image
Cornishboxer2

I can pretty well understand how you feel having had some sort of similar experience. I tried to carry on as normal with work etc. despite symptoms of severe headache, fatigue, nausea and dizziness. It was only with persistence and the support of my partner that I eventually was referred to a neurologist. COVID meant little face to face contact which wasn’t much help either. Having now had some support and having come to terms (to some extent) with where I am at and taking part in a brain injury group here in S Wales it is clear every case is different. Try to open up with your family about how you are feeling and what for you is the reality. Explain this to your doctor in case you can still get a referral and don’t be afraid to search out who is the local neurology consultant and ring them or their PA direct. My TBI fell somewhere just past Mild yet I have memory issues, cognitive overwhelm and more. Reaching out is a great first step. Extend your support network and you don’t have to hold it all in. Wishing you the very best.

Flosmum04 profile image
Flosmum04 in reply to Cornishboxer2

Thank you xx

DTBI profile image
DTBI

Hi, I appreciate your frustrations, and I recommend visits to your local Headway Group, where you’ll get to know people with similar and worse TBI experiences.I visited my local for a couple of years after my TBI eight years ago. I’m more settled and accepting of my circumstances nowadays. Good luck with it x

Flosmum04 profile image
Flosmum04 in reply to DTBI

Thank you. I think there is a group about 40 minutes again, I will look at when it’s on x

Teazymaid profile image
Teazymaid

Hi and welcome to this group and headway’s as this is the place to realise your not alone .. I can also relate to where you are but I did tell anyone who didn’t know as my speech was bad and I didn’t want any one to think I was drunk 😂with the speech and the balance I would fall and walking the hedges 😂 …. I have had to find the funny side but days when the anger and depression is thought the roof … but even when people know what’s wrong I still felt very alone as one one had a clue what I was fighting … I got sympathy for the shoulder injury and op as it could be seen but the head no understanding at all …This is where I realised I was not alone and support from mainly read others comments …

My advice would be tell everyone who you feel you didn’t need to live in your own world .. you don’t need to keep it a secret as with people telling others what it is like how will people ever understand what it’s like … for me I would so much like others to understand so if they have a TBI they will have just some idea .. and headway’s should be known about … not just when you have a TBI . This is all my thoughts and not for every 😁 I still don’t get much understanding but they are aware of what it is like 😁 … I’m 20 months past accident and am still improving . So welcome to this group with amazing support from people who do know how you feel .. sue x

Flosmum04 profile image
Flosmum04 in reply to Teazymaid

Thank you xx

Pairofboots profile image
Pairofboots

Hi Flo's, your penultimate sentence say's it all, "..........…something I need to deal with".

You can fool everyone else, but you can't fool yourself. You know that everything isn't ok, and that you are struggling. Please speak to your GP or the rehab team, also contact Headway to sound out what and where you can get support. Apart from the physical symptoms you are experiencing, there are the psychological symptoms that you cannot ignore, like the flashbacks, and your need to protect others from the reality.

When we experience something like this, we do find it difficult to say how we are, it doesn't seem real, and how can others believe or understand. None of us like the sympathy, to feel different, to stand out. We have to at some point, accept the reality. It doesn't stop us from moving forward, if anything it lifts a weight off our shoulders, and makes progress easier.

If you have a trusted friend or relative you may be able to start to open up a discussion. It comes down to you taking control, rather than your injury dictating.

Keep in touch 🍀

Flosmum04 profile image
Flosmum04 in reply to Pairofboots

Very wise words, you are making me think. Thank you xx

Nemo24 profile image
Nemo24

This sounds so familiar and am at similar place I feel. Why do we tell family and friends we are ok when we are struggling? Probably for several reasons to include not worrying them. Just starting some help with NHS and been to couple of Headway meetings. There is help out there so good luck.

Flosmum04 profile image
Flosmum04 in reply to Nemo24

Thank you x

Skulls profile image
Skulls

It really is a postcode lottery with regards to support and treatment post hospital so make sure you grab whatever is offered. Don’t be afraid to be who you are even if that is not who you used to be. You don’t have to adapt - others do. That relieves you of a whole lot of responsibility.

If the going gets tough, you still have your fellow sufferers (us) to talk to.

Flosmum04 profile image
Flosmum04 in reply to Skulls

I really feel less alone just from all of your wonderful words x

Leaf100 profile image
Leaf100

Hi FlosmumI agree about chatting with Headway. Also ask about psychological support, groups, whatever research they think might help.

My guess is feelingbimpister syndrome of a sort is common, I myself do the 'passing for normal' thing when I need to.

Whether you tell people or not is a thing to consider,not everyone is going to be understanding. I found it better to be specific- in not 'I have a brain injury' but 'oh can you help me with this form, I have a tremor and if I fill it out no one will be able to read it.' I also tend to say ' oh I got my bell ring too hard' I think people can relate more easily to the less clinical. You must also be careful because some will try to take advantage if they think they can. There is more of that than you might like to think.

You definitely need to talk to someone professional about the flashbacks, there are treatments for those.

It is pretty normal to try to push through and then wonder if you went too fast. Not really being aware of the whole tomale from the beginning is part of it. It comes with time and experience.

It is good to let those close to you know what you are dealing with. They may have noticed things you haven't. There are programs for friends and family as well, you can ask about those. Sometimes it helps for term to hear others as they may find it easier to get somethings are the injury and it isn't personal.

This is a marathon, not a sprint. People heal at different rates but it still tends to take longer than say a broken leg. There are often also residual effects. Sorry to say it, but no point sugar coating it.

You are still you. You'll find your way. You will have to try different things to see what works for you. Everyone is a bit different.

It's good you are here. We get it. It is a relief to be around those that get it. Welcome.

Leaf

Flosmum04 profile image
Flosmum04 in reply to Leaf100

Thank you so much x

Elecheetah profile image
Elecheetah

There will be so many people here reading your post and feeling great empathy with you Flosmum and you are definitely on the right track talking about your feelings. For me the 8-9 months stage was so frustrating - half better half not and still living with the consequences of a fall. Have you spoken to a neuro psychologist? I found that really helpful to deal with the flashbacks and nightmares - she also helped me come to terms with a the behaviour of the person involved in my accident. I would recommend you speak to your GP and try to get an appointment with someone in your local neuro team. Keep talking - and keep doing what you are doing - it’s working !

Flosmum04 profile image
Flosmum04 in reply to Elecheetah

That’s great advice thank you x

1949liz profile image
1949liz

You poor thing, maybe it’s denying your condition to yourself and others so be open about how you are really feeling about your condition. Next time someone asks you how you are feeling tell them the truth. You might find that you have such a relief to be open and honest that people will listen and understand you better. Don’t forget if people,are,asking you how you are feeling it must be because they see you are different than before your accident or illness. Please ask your doctor for a referral to a counselling service which might help you come to terms with your condition.Take care and well done for sharing with us how you are really feeling. God Bless Liz 🌹🙏

Flosmum04 profile image
Flosmum04 in reply to 1949liz

Thank you x

Survivor37 profile image
Survivor37

Welcome to this amazing group of people firstly sorry to hear about your struggles..just a brief picture for ya..I've spent my whole life living in denial about my daily struggles with BI..my accident was back in the 80s back when there was zero support or understanding of BI for me it were a case of the lump n blood clot in my forehead and gone so everyone said he's fine now..little did I know my injuries were life changing at 10 years old and let's just say the bravado of saying I'm fine don't worry put me in some dark places n nearly killed me 4years ago when I were guna take my own life..I'm SO SO HAPPY that I didn't and I've started to face my injuries head on with the fantastic support from Headway UK n now Headway local to me..I've found a real strength from within to tell my story..Don't hide anything other people's reactions to what you share is purely on them I found sharing my a bit of my story for all too see definitely sorted out the real friends n those who are fake....SHOUT IT LOUD N SHOUT IT PROUD..who wants to be like everyone else anyway👍..good luck and best wishes on your journey into the unknown....💪💪💪 X

Flosmum04 profile image
Flosmum04 in reply to Survivor37

You are very brave. Thank you x

haverfordwest profile image
haverfordwest

Hi, all I can say is join a Headway group. They were a godsend to me. I spent the first 4 month taking codeine and paracetamol with no help from GPs, spent the next month in a neuro rehab ward, who explained everything about my injury and the after effects of it. Friends and family to this day do not understand the effects of a TBI, so same as you, I say "I'm fine". The wonderful thing about Headway groups are you realise you are not alone with your symptoms, and can talk about anything and get answers from the other people, and also we tend to laugh about ourselves and the stupid things we do since getting BI's. Remember you are not alone and there is always someone on here to answer you, whether it is to have a rant about life or to tell about a funny experience you've had due to injury. Take it all at a pace that is good for you, don't let anyone rush you. Three and a half years on I still struggle with noise and crowds and light, but you will find your own way to deal with things. I have just come back from coffee and cake ( which to me is a total waste of time as I have lost my taste and sense of smell since TBI ) and my friends both asked me "what's yours like" 🙄😠 !!!!!

Good luck in your journey, it will be eventful.

Flosmum04 profile image
Flosmum04 in reply to haverfordwest

Thank you xx

ftt1960 profile image
ftt1960

Only a few people really ‘get’ me since my accident. My partner has been amazing and so supportive. My elder daughter and my closest friend, who has her own health ussues, show great understanding and tolerance. Like you, I have an”I’m fine face’ and from the outside that’s how I look. Everyday bri gs a whole variety of struggles.

Have you contacted your local Headway group? It’s a group of people who have suffered a brain i jury of one form or another and are all at different stages in their recovery journey. I was unsure initially but actually get a great deal from the group, even just acceptance and understanding. If you Google Headway you will find contact details We are all supposed to be referred by the health profession and it simply beggars belief that we are not. Good luck x

Flosmum04 profile image
Flosmum04 in reply to ftt1960

Thank you ver much, I have emailed the local group so fingers crossed I hear back. x

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