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Is it me?

Well, it’s that time of the week again and I need to let off some steam.

I’m really confused about my hypoxic/anoxic brain injury.

I’ve read stories on here about people who have had these injuries and been left in a vegetative state. I wasn’t. I also read about people who couldn’t walk, talk, read or write, and had to re learn all these. I haven’t had to do that.....I was able to do all of these almost immediately after the poisoning.

What I am left with is a head that feels like it’s filled with cotton wool, a constant feeling of nausea, a sense of being overwhelmed by the simplest of tasks. I have visual disturbances, headaches, and ache all over.

Oh, and the fatigue.....I haven’t felt so tired since my heart bypass. I don’t enjoy going out any more because it leaves me feeling really exhausted afterwards, and have to limit my contact with friends for the same reason.

I just feel really unwell.

So I’m sort of stuck in the middle. Grateful that things aren’t a lot worse than they are, but at the same time when someone points out to me how grateful I should be then I feel angry because of all the things I am experiencing.

I have my first neurologist appointment next week, so I’m hoping I’ll start to get some answers.

Anyway, whinge over....I haven’t got the energy to write any more lol!

Ian

PS I am very lucky to have a wife who has stood by me and supported me lovingly through all this, even though it has had a huge effect on our life.

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Yep, my experience is similar to yours. As time passes I've been able to figure out some compensating strategies as well as figuring out ways to deal with the whole thing better. Quality of life has taken a hit. I just do the best I can and call it good. I wish you a better life each day too.

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I think that’s good advice. I try to do the best I can each day, even if that means getting out of bed or getting a shave, getting dressed and making a sandwich for my lunch. I suppose I need to keep focussing on what I can do rather than moaning about what I cant. I’m in a better place mentally today. Thanks again.

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Hi Ian,

You have just described typical recoveries of brain injury sufferers.

We all experience this to a greater or lesser degree.

Some for a shortetr period some for longer, some for ever.

We are the lucky ones because we can build a new life and learn to live with those problems we encounter. Our brains are marvellous, it is amazing hust how resilient it can be but it does not regenerate, so our recoveries depend on where and how badly the traumas have damaged it.

I wish you well on your hourney.

Please come back and keep ua informed on how you fare.

Janet x

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Thanks Janet. I think I was just having a ‘fed up’ sort of day. I am lucky to still be here and to have the support I am getting. I really appreciate your replying.

Ian xx

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Hi again,

You are allowed to get fed up, who wouldn’t, just remember that although we count ourselves lucky, my GP told me my recovery was down to me and the way my body had been able to recover.

The physicians just do what’s in their power to provide the right environment for the body to fight whatever it is facing. It is then up to the individual to do that fighting.

Some of us fare better than others, some are just too damaged, and a certain amount of luck comes into it.

But never underestimate the power you have to improve your lot. We all have”fed up” days but they pass and the sun comes out again.

Well done to you and all of us on here.

We are facing daily one of the hardest challenges anyone will ever face.

Love

Janet xx

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My ex husband (& good friend) didn't survive a Subarachnoid haemorrhage, yet 6 months earlier I had the same and did survive. So I was lucky............everyone tells me I'm lucky.........but I don't feel lucky !

It's all relative, so if you're not as unfortunate as the next person but still sometimes dare to feel life's a chore then that's OK, because it's not a competition, and when you feel like a stranger in your own body it's not a good feeling.

My tactic is to try to stay positive, outwardly at least so as not to worry others, treat (so far as possible) my deficits as a laughing matter (often swearing & stamping my feet first when things go badly awry).

We're human, with normal, healthy emotions so, whilst respecting the feelings of others and not abusing them, we should be forgiven for having the odd 'bad' day or tantrum.........surely ?? 😓

Cat xx

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Hi Ian , you asked to hear from someone else who had the same brain injury as you or from a carer who is caring for someone. This is the first time I've posted on here , so hello , my son has a hypoxic brain injury it's been 9 months since it happened , it seems like it's been a long journey 3 months in hospital then 3 months in rehabilitation us visiting every single day then at last home to live with us he's family , but I know it's early days every one tells us , it's been a very Rocky road behaviour problems , frustration and anger and very fatigued , I ask how he feels but he just says he's fine feels fine but I know he isn't some times he opens up to me and says he feels he's head is hazey . I wish I knew how he felt inside he's head it must be so scary for him . A couple of months ago we was doing board games , playing cards , memory games and written exercises and doing some gardening, then it's like he just shut down hid himself away wouldn't come out of he's room only for meals we had a rough time with he's anger , he ran off loads of times which was very scary for us , we are not giving up , we give him he's space and give him lots of love and praise , Ive had support from some new friends I've made from a careers group they are great , He's psychologist gave advice to , then slowly slowly he's started engaging again won't play any games though but what lad would In normal circumstances ? so I try to motivate him during the day just doing little things trying to build up on he's concentration he's dad takes him out to play pool at the local social club , and sometimes they play a game of 9 hole golf also we go out for meals , he does get very tired and has a sleep during the day and is in bed vey early in the evening and can sleep up to 13 hours of a night . 😊

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Hi Diane, sorry for taking so long to reply......I have to limit my time on the iPad. I’m so sorry t o hear about your son. If you don’t mind me asking how did it happen? Did he lose consciousness? You might not feel like this but to me it sounds as though your son is doing very well if he’s managing to get out and do stuff like playing golf and pool, I wish I could do that. I do manage to get out for a meal every now and then with my wife. I can totally understand the sleep too....I had really bad broken sleep at first but like your son I can sleep for hours now. Sorry to hear about the anger though.....maybe it’s just frustration at his new limitations. Take care, Ian.

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hi ian, you sound fedup. i get that way too. carbon monoxide poisoning differs from other brain injuries in as much as symptoms can get much worse after exposure stops. i think i remember saying to you ages ago about this. then things start to even out. what did your MRI show? i found headway information more useful than anything the neurologist had to say, easier to understand too. there is still a lack of knowledge about the impact of carbon monoxide poisoning and the long-term injury to the brain. the head full of cotton wool, the fatigue, feeling nauseous and generally unwell are all familiar to me too. my symptoms began to get significantly worse again towards the end of last year and i visited my GP for some help. he said 'i believe that you are seriously mentally ill' and prescribed prozac, which of course i didn't take. when my cat began vomiting about two months ago i contacted a registered chimney specialist. i said to him that i must seem paranoid as i had everything rebuilt and new after the explosion five years ago. he investigated and immediately told me that i must not use my fire under any circumstances, that a fire-box explosion had occurred and had perforated the chimney lining and that toxins including carbon monoxide have been leaking into my home. i am now a week without heating and waiting for insurance. my headache and nausea have subsided and my wee cat has stopped being sick. yep, very mentally ill, not!! you know your body better than anyone else and even 'experts' get things wrong. i hope you have a positive experience with your neurologist, keep in touch.

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Good grief Deborah - a lucky escape ! .............well .............not down to luck as to your own hard-learned experience. Your moggy might have saved your life, bless its little heart.

I know you have long standing health issues from the previous CO incident but I hope this hasn't set you back, and that your 'wee cat' is quite recovered.

Hope you'll have your heating back soon..........this isn't the time to be without ! Take care m'love. Cat xx

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