Lonely: I had a grade 5 brain heamaridge at the end... - Headway

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Lonely

Gym1bunny profile image
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I had a grade 5 brain heamaridge at the end of may last year I have no memory of what happened my stay in hospital I was in a coma for a long while I only have the words of what happened from my partner and his daughter I'm struggling terrible with anxiety and depression and I have days when I can't go out and just want to sit in a dark room does anyone else experience this ? My friends have slowly trickled away leaving me feeling very lonely and isolated even though I've got family I'm lonely every day again does anyone else have these feelings ? I've not worked since this happened I've worked all my life over 40 years i just don't know what to do or who to turn to my partner is brilliant and I don't know where I would be without him is it just me or do other people who have had a TBI feel like this ? I feel awful not working but at the moment I feel like I could not cope mentally in a work situation

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Gym1bunny profile image
Gym1bunny
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cat3 profile image
cat3

You need help Bunny, but firstly I suggest you put the idea of working aside for at least another 12 months. After working for 40 years, your life will seem unstructured and your freedom will feel unnatural but, until you let go of your past and accept the changes, the discontent and frustration will add to the already troublesome after-effects of your brain injury.

At the 12 month point after a haemorrhage there's no way I could have held down any type of employment, owing to a decline in abilities such as mobility, memory/concentration, emotional stability and more. The fatigue alone can be a tough barrier to break down.

Perhaps you could start by asking your GP for a change of meds. The Citalopram needs to be phased out if you're still taking it after 20 years and the higher dose isn't helping. There are many other SSRIs which might be more compatible for you and which could help your mood and motivation SO much more.

Perhaps you're still grieving for your old life ; something the right medication can help remedy. But by letting go of the things you can no longer do and building on those you can , you'll hopefully become more forgiving and tolerant with yourself to clear the way for optimism and quality of life. Love Cat x

Gym1bunny profile image
Gym1bunny in reply tocat3

Hello cat 3 thank you for your reply your experience sounds slot like mine I find it hard to cope with the no memory of what's happened to me one day at the gym that's my last memory and now in this situation I just don't know how to cope with it or get past it I know I need help professionals say I need help but it's all a waiting game I was always a positive person who loved to socialize laugh joke go to the gym but now even to go out and walk down the road is hard work I feel like I've lost all my confidence and become unsociable I stutter when I talk I find that embarrassing and people take over my conversation I get so angry and at times blow up shouting and crying my friends have moved on I feel like I'm old news now !!! Physically I look ok even though I need a stick to walk becomes of my balance but mentally I'm all over the place my short term memory isn't good I try so hard I exhaust myself with this constant fretting about everything I don't want to be this person !

cat3 profile image
cat3 in reply toGym1bunny

Bunny, after discharge and 18 months of waiting for improvements I asked my GP for a referral back to the neuro-consultant. One year later the appointment came through and It turned out to be a different consultant, but one I trusted immediately.

I was especially troubled by my 'drunken' gait which he agreed was a problem for many and recommended daily practice and a stick. So I had to drop my pride and practice to a point, where I only look tipsy rather than full-on paralytic, in order to get outdoors. I can drive ok but refuse to always take the car as I know I need exercise.

I also had a severe overheating issue for which he referred me to an endocrinologist. The Endo doc put my overheating down to delayed menopause after years of HRT, so I'm still waiting that out.🙄

He explained that the short term memory problem was for keeps, but I could maximise my brainpower to some degree by exercising my mind with anything taxing such as crosswords, sudoku & any problem solving games. I already used reminders on a whiteboard or on my PC calendar with notifications and he concurred that it's what most people do after brain injury.

The word recall, I'll admit, is still a problem for me ; possibly one of the worst. Conversation/discussion/playing devil's advocate used to be what I did best, so it's robbed me of that ability and I the social life surrounding it. But I'm alive and still able to get satisfaction from other activities.

Life is very different after brain Injury m'dear and it takes 2-3 years of practice before we get the hang of managing the many issues. For me, I believe it's the SSRI which keeps the frustration levels manageable and I'd advise you to ask your GP's advice on finding a more effective one. I switched several times at first without the need for tailing off periods.

Take more advice on medication Bunny ; life's too short to live in limbo. We can't always change circumstances but we can alter the way we perceive & deal with them. 🌷

All best wishes, Cat x

Jamajo profile image
Jamajo

You have just summed up exactly how I feel to a T. I had a brain infection in April last year. I went back to work in October, which now looking back, was too soon. I am a shadow of my former self. I hate leaving the house and only do to take my son to school and go to work. My "friends" have disappeared. I dont have a partner. I have 1 person to offload to and thats my mam. She however is increasingly fed up with me as I just cant get to grips or accept the new me. I hate the new me. Useless, forgetful, constantly tired. I wake up every day hoping its been a bad dream. It isnt. I KNOW how im meant to stay positive and think differently, I have done many courses and read alot of books, i just am numb within and dont believe it. Its so hard and when we look ok its harder as people assume we are still the same and treat us that way. I understand entirely how you feel, so, no, you arent alone in feeling like this.

Danger19 profile image
Danger19

Hello my lovely,

You have been in my thoughts and my prayers. I know from you previous posts that you were feeling low but it sounds as though you are struggling more my darling. Have you spoken to your Doctor about Benzodiazapines that may help you to feel calmer and happier, Or a better antidepressant, different to what you take currently.

Let me tell you my story about people, it might help, it may not? So I was married to the father of my children. Ten years ago , my son was three and three weeks before I had my daughter. I came home from a night shift at the hospital and he had packed his car with all his belongings and had hold of my son. With no warning or previous problems. He told me he was leaving me. I told him if he tried to take my son he would not live to drive away and I seriously mean't it! He drove away with no explanation and we have never heard or seen him since. He doesn't even know my daughter is a girl or her name. The children have not had so much as a birthday card. I'll be honest, I don't even have friends, always been a bit of a loner, I trust nobody and will not introduce strangers to my children. It has always been just the children and I. When he left I felt like you feel now. I know my bipolar would have increased my feelings. I am so aware of how stress, anxiety, depression, worry and low self esteem can affect an individual and their daily life.I could not allow my feelings to take me over because my children deserved better.

I really feel for you. It says more about these negative, nasty, useless people than you my love. I have seen in a few published medical research papers that the feelings you are experiencing can be heightened following a brain injury. Is there anybody you can trust to talk to face to face about your feelings? I would love to meet with you and support you if I could. I don't suppose you live anywhere close to me. I live near Chelmsford in Essex. Please don't feel responsible for the way these people have treated you. I know friends trickling away can make you feel low and responsible but if they were real friends they would never have done this. Remember all the wonderful work you did before your accident. You are still the beautiful, lovely person that you were before your accident and you fought to survive a life changing incident. For this you are strong and talented. The way you are feeling does not change the wonderful individual that you are or the amazing, great things you have achieved. When you feel as you do, it is so hard to feel positive about who you are. I know my love, I despised myself for years.

I am more than happy to support or offer advice where ever I can. Your partner sounds like a good person. If I can help with anything I know, whether it be from my history of bipolar or my medical knowledge please just ask. I am not offended easily. I will continue to research medicines that may help. I'll be honest, I think you need a better antidepressant, that works in a different, stronger way but will not change you as a person or cognitively, just help you to feel better.

I wish you a lot of peace and some serious medical support and lots of luck,

Take care,

Vikki

Gym1bunny profile image
Gym1bunny in reply toDanger19

Hello Danger 19 thank you for your kind words again yes I've been rough the last few days but I did get up eventually today and went for a walk in the sunshine it made me feel so much better and made me realize I've got to get out of this rut when I was working if one of the people felt like I do I would be saying exactly what you have said to me I think I've put so many years into other people's needs I've forgotten about my own I used work to cover up my feelings but now I haven't got that at the moment its making me face up to my own needs and it's scary I've decided I'm not going back to my old job it's to pressurised and theirs no gratitude from management so I've decided when I'm well enough I'm going to get a lighter job with less responsibility so that's a possotive I'm seeing the doctor next week about my medication so hopefully that will get sorted . You sound like you've been through the mill in your life you sound alot like me and deal with things the way I do your children are very lucky to have you I would love to keep in touch with you but I live in Tamworth Staffordshire I'm not driving at the moment I've been told I can ( even though no one's seen me to assess if I'm ok ) I've decided myself I need to get my head sorted becouse I get behind the wheel of a car Thank you again and I'm always here if you need to off load Julie XXX😚

Danger19 profile image
Danger19 in reply toGym1bunny

Hello my lovely,

Thank you for your lovely reply. I really hope things move forward in a positive way. It is a short we are so far apart. But even though I can’t be with you, I sincerely mean it when I say you are in my thoughts.

Take care,

Vikki

Gym1bunny profile image
Gym1bunny in reply toDanger19

Thank you it's so nice to talk to you you've given me so much encouragement more than you would ever know anytime you need to chat I'm here xx take care

Friends ? If they have drifted away were never true friends so not worth fretting about.

Gym1bunny profile image
Gym1bunny in reply to

Thank you so much for your reply I know you are right but it hurts I was the life and sole of the party all the time I organized everything and your right they are not true friends

in reply toGym1bunny

Most people say they get it when in reality they have no clue, I find myself getting angry with them, but it's not their fault. I just try to concentrate on day to day making tiny improvements it's the only way I can cope. Being hard on yourself is counterproductive. The facts are life has changed and things will improve but extremely slowly. Hope you get better asap.

Gym1bunny profile image
Gym1bunny in reply to

Thank you again your words make sense and mean so much to me it's nice to know I'm not alone hope things improve for you very soon good luck xxx

boxergirl777 profile image
boxergirl777

Hello Gym1bunny

I totally feel for you my friend...

I and probably all of us who have had life changing Bi's find the changes are the

hardest thing to adapt to......

My Bi was in 2015 I when I was attacked by a subhuman waste of space who hit me over the head with something while i was walking home from work in the early hours...

Like you i too went into a darkness and despair of "Now what " i'm scared," I can't do this and I can't do that"..... I'm never gonna be the same??...but what I learn't is that no i will never be the same woman as I was before, but that it's me that has to adapt, others won't, i say this to you because no matter how loved we are by family and friends they just don't get it!...as we didn't before we got our own bi?... if you met someone injured with bi chances are you would feel sorry for them etc but unless you have that problem you can never truly understand? ...Bi's are hard to deal with as outsiders can't see it.. when the brain that takes the hit it takes everything we once knew as normal to another level!

Yes folks try to understand, they still care but like you my friends and family slowly left my side, they decided it was just to difficult, but truth is they don't know what to do or say? it's a lie when they say misery loves company, it doesn't ...

Only you can change this for the better ....... time does heal a lot, you will find your way through this no one can do this for you.... sitting in dark rooms will not be cutting it my friend..., you gotta put on your big girl pants and say Ok i'm scared but i'm still alive and I need to start living! ....begin slowly and when you begin to get stronger life will get easier.....there's nothing gonna change while you continue to feed your fears hiding behind closed doors...if you stay in the darken room then you may as well exchange it for the coffin you avoided!!...you LIVED so there was a reason for this.....where there is life there is hope ..right? :)

You have loving partner and he's going help i'm sure of that :)

Start with small steps...... say i'm alive! I fought and have come through the worse, you faced death and won!!...there isn't anything else more frightening that's going to happen? it's already happened! and your not living anyway if your sitting hiding from a fear of a repeat of this same problem happening again....so it might?...it might not?... it's something you gotta get past! Yes dam right it's hard ,sometimes i just feel i can't do it anymore...but what option do you really have but to keep trying and some time in the future when your laughing, loving and living you will realize why we all keep getting up off the canvas and keep going!.... is what it's all about.

It will not be easy, all the others folks reading this with bi's will tell you it's hard but you gotta try... trust me you got this covered :) it can only get better than where you are.....you are so much stronger than you think...

Personally don't agree with antidepressant medications, you're depression comes from the lost of your old life so your having a reactive depression, this is because you have been through terrible ordeal....it's natural to be depressed? why suppress it ?...go through it...antidepressants will leave you facing a whole load of problems when you realize you want off them...please don't put on a sticky plaster with this kinda natural depression.. it will go .....your starting another part of your life now it will not always be this dark if you don't want it to be.... You used gymbunny as your username so i'm guessing maybe your someone who likes to workout?... Endorphines will help you way more than drugs, obviously you might not be able to train hard yet get advice from you doctor if need to but just gentle walking or maybe a gentle swim, some yoga, get into the sunlight it's little steps that help make big steps.... anything that takes you out of what is a mind set of negativity and will bring you closer to the old you and who your gonna be in future, you have your own set of keys you just need to start the engine and drive off.... :))....life will go on....it's what kinda life you have in the future that you choose....best of luck...xx

Gym1bunny profile image
Gym1bunny in reply toboxergirl777

Thank you so much for your lovely reply you are right about everything you've said I've got a doctor's appointment next week so I'm going to discuss my medication with him I stopped in bed today feeling down and I thought this is not right on my partner he's been my rock through all of this I don't know where I would of been without him so I decided to get up get dressed and go out for a walk in the sunshine together it was lovely so thank you your words have me the kick I needed

Yes I loved the gym body pump spinning fast fit etc I had a very stressful job ( that I've decided I'm not going back to ) I know now I wouldn't beable to cope with it now going to the gym was my way of relieving the stress it was at the gym I had my brain haemorrhage after a spinning class my partner was told I had no chance of survival !!! I've got alot to be grateful for and I'm lucky very lucky but at times thoughts in my mind take over and I've got to get help to deal with them I've spent 40 years looking after people with all sorts of disabilities and I know I'm luckier than alot of them I can't thank you enough for your kind and thought provoking words xxtake care 😚

boxergirl777 profile image
boxergirl777

Hey hello you!!

That's so good to hear, your taking back your life.

I'm real proud of you for doing something and opening the door a little and stepping a foot back in the pool of life again, well done you :))

It's kind of you to allow me some of the credit but it's all there inside you my lovely... i just helped you see it....

You sound like you have turned a corner and believe me when I say it can only get better, both for you and your wonderful supportive partner.

I too spin, aqua circuits and running has saved me many times when i'm drowning in depression ...a good run helped get me back out the despair ,yet at times it's so hard to actually put on those trainers and get to gym but there the times you need to more than ever!!....yes i also go for walks and just take in the sun and the sounds of the birds, feel the breeze, i do this as often as i can, it keeps me grounded and in the moment....i also found yoga! it's wonderful for helping with anxiety, before i was always too busy to actually take some calm "me" time it had always been fast and intense sessions... i'm back working and some days i struggle, the bi injury left me with a crappy short term memory but i can't allow it to stop me doing everything I love doing , yes i did changed from my original line of work to work in a different job, but i'm working and that's whats important for me, ...there is a life after bi....if you can and want to return to work nothing will stop you, ... :)

Trick is to keep moving forward always in your own time but with no excuses when things get tough :)

All of us can learn from our life experiences and for some of us these can help us grow stronger than we ever knew we could be....you my friend are going to be one of those strong people who got up and said " I'm not beaten yet"

I'm so glad you read my words as i intended with reassurance and kindness and not with anger or hostility as so many folks now struggle with tough love and their own sense of self belief .

Keep going, try not to stress if some days harder than others caus some days just will be harder, that's the recovery process....

It's a thought process for all of us in this world, what you think you become... with or without a Bi life is hard,.. yes speak with your doc about any fears etc ...but remember doctors can be overly cautious at times :) go with how you feel and listen to your own body and your own gut feelings ..... I'd say start slowly ...that's just common sense which I can see you have plenty of :)....big hugs to you.

You have a great future ahead ...i know it :)

Gym1bunny profile image
Gym1bunny

I do want to return to work more than ever I'm not a sit at home sort of person normally there told me 12 more months and I should be up for work I would like to go sooner but I think I need that time to sort myself out get my confidence back and try and mix more with people did you have to get clearance from your doctor to return to the gym ? I would love to go back doing exercise gentle to start with I do do exercises at home but I like being in a class it motivates me more big hugs to you as well and thank you again

Danger19 profile image
Danger19

Hello my lovely,

You are so welcome to any help I can offer you especially if it helps you feel just slightly positive. What I will tell you is that I am currently talking personally to a lovely lady from this site via sms and talking and it makes me feel happy and useful. If you feel that this might help you to feel less alone I am more than happy to give you my mobile number. There is no bad

Motive to it I promise you.

Take care,

Vikki

Gym1bunny profile image
Gym1bunny in reply toDanger19

Yes I would like that thank you xx

Danger19 profile image
Danger19

Ok hunny I will send the number via a private message here. If you have any problems obtaining it just let me know and I will get it to you. I feel we are on to a positive place here. Please don’t ever think, that I don’t want to talk to you, that you are bothering me or I’m ignoring you. I’m very honest. It takes a lot to offend me and my only deleted in replying is something to do with my children. I’ll get the number over to you, just me from your mobile phone to mine then I can save you.

Lots of thoughts and luv to you,

Vikki

Danger19 profile image
Danger19

Hello my lovely,

I sent my number via private chat. I hope you got it, let me know if you don’t. Text w you want to. I’m always here for you.

Take care,

Vikki

Gym1bunny profile image
Gym1bunny

Hello Danger19 daft question how to I find a private message ?

Kavib profile image
Kavib

This is quite normal for anyone that has been through what you have. It will take time and patience. You have to stay positive and know that you will get through this. I have done some short videos on my YouTube that may help you. As I struggled to relate to anyone after my SAH in 2015.

The link is here and hope it helps : youtu.be/qM7qgw79k_o

Gym1bunny profile image
Gym1bunny

Thank you just watched your YouTube video it was lovely (made me cry) I have no memory of my time in hospital just occasionally I might have a flash back of something but I don't know if it happened or if it's a dream best wishes to you and your family family is the best and most important medicine x

Danger19 profile image
Danger19

Hello my lovely,

For me to go into private message. At the top of all the message pages there is a tool bar and I have to click on the sign that is two speech bubbles. It should highlight to indicate you have a private message. I’ll send it again in case I have done it wrong. Let me know how you get on.

Take care,

Vikki

Danger19 profile image
Danger19

Just realised I sent the number to a web name that was very similar to yours but not yours. So it was my mistake.

Take care,

Vikki

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