This is crazy

I'm going to have to live another good 50 odd years feeling unwell. I really want to enjoy myself, but I still feel so physically unwell. It's still a lot to process is all, and way too much to take in. I hate that it's my head that's the problem, the thing that's meant to help you out of problems.

This doesn't really mean anything, just writing down what I'm thinking I suppose.

12 Replies

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  • My sympathies Ben, I know where you're coming from. Every day I have to live with the consequences of this BI.

    I never get a day when I'm normal, whatever that is.

    It must be so hard to deal with at your age, I just hope you are wrong, and eventually it will all settle down for you.

    My thoughts and good wishes are with you xx Janet

  • Sorry to read you are feeling physically unwell. Trust that your brain knows what to do and apologises to you while it reconnects the 10,000 neural contacts by the neurons sending out an axon that extends – often over considerable distances – into the target areas. By a process called axonal branching an individual neuron can establish connections to several target regions in the brain, thus providing the structural basis for the simultaneous processing of individual pieces of information. It is not a fast process but does use up body resources to do it.

    It may be that you are deficient in iron, Vit B, vit C, iodine, magnesium, selenium, zinc, potassium which is making you feel unwell. There are lots of foods and herbs available to minimise the 'unwell' you are feeling. Ensure you eat raw where you can to get your nutrient rich foods, eat soups and juices when you can to maximise energy towards brain regrowth and get some regular gentle exercise to take your mind off feeling ill. Seek a herbalist for more info. Peppermint tea helps to numb the nerves.

    Like you I felt my world had ended. Had I known 5 years later I would be back at work writing this to you, I would not have believed it. I could probably find some text I wrote back then when my world was seemingly ended.

    Glad you wrote your thoughts/feelings down, it helps to get perspective. Keep sharing.

    Hope you start to feel better soon on your journey to a balanced recovery.

  • As a young un, could be more than 50! I come from a fairly long lived familly assuming I,ve not damaged my self too much even at 40, I could easly have another 60 years.

    You,ve posted this question or one like it before. Have you tried going to the meeting, online is great but meeting folks like ones self face to face is great, for working out acceptances, I assume it's the epilepsy that is causing you the feeling unwell?

  • Hi Ben. Just wanted to say hello and no answers but understand.

    Keep writing. Take care. K

  • Hi Ben,

    This is the place to write stuff down and get it out mate. I too have to live with a BI and other problems which involve my thinking. As said by Roger if you can get yourself to a Headway meeting it will help.

    Have a peaceful evening matey. N

  • Yes it's cr*p Ben. And I agree it's ironic that the only tool we have for helping to manage our broken brain is our broken brain.

    My life has changed beyond recognition and my only answer to that has been to take each day as an individual challenge. Planning ahead isn't an option so I ask people to 'pencil me in provisionally' where invites/appointments are concerned.

    And as for feeling unwell, I'm even learning to accept that as the norm. :o Yearning for the unattainable is surely a recipe for greater unhappiness ?

    You're on my list should I ever stumble upon that elusive magic wand. x

  • Hi Ben

    Always better out than in 😯 such thoughts.

    In my previous life one of the things I did for a while was work with groups of disabled peoplè. Something that always struck me was that those who were disabled from birth often expressed the view that their disability was not an issue, so much as the reactions/perceptions/misjudgments of others. As they said, for them, things were 'the norm' as they were. They had already found the way to make it work for them.

    I think the difficulty for us is that we did have this previous life, so we are trying to adapt to a new 'norm' and this takes time. We have this memory of what it was like, and that can throw the present into a painfully acute relief at times. Things are not, however much we would wish it so, what they were.

    As I came downstairs yesterday morning with my toddler shuffle (two feet on each step, sideways on, gripping the handrail), I did wonder to myself what it used to be like when I would leap out of bed and come down full pelt, sometimes two at a time....but I can barely remember...it is more than 5 years ago, and slow and steady is, these days, 'the norm'. As Cat says, it is possible even for this to become for us just the way things are, just as it was for my disabled colleagues.

    So time is a great healer, which is just as well. When I was first ill I am sure I wasted a lot of brain injury worrying about being ill. It isn't that I have given in, more come to a place of acceptance, which is a positive thing from a physical healing perspective too - the less my brain is doing of the worrying, the more it can be doing of the repair work that RecoveringH talks of.

    And I think all of us get a bit floored if we look 50 years into the future...but honestly, what is the point? You didn't see your AVM rupture round the corner, and you won't be able to predict any other future events (including medical advances that can deal with the problem for good) any more than I can. Just try and live for now, by which I don't mean 'one day at a time', I mean right now. You can't do anything about the moment you just left, and all you can do about the moment to come is place yourself - slowly and steadily - in the best place right now to be able to tackle it, in your own way, and with your own strength and fraility. And in that you are no different from anyone else out there, however fit and healthy, trailblazing and successful, gifted and talented they might be.

    And Ben, looking back over the last three years to 2012, I think you will find that you too have been, at times, fit, healthy, trailblazing, successful, gifted and talented, and that endures, in spite of today's little wobble. You don't run and raise money for the hospital that saved your life without ticking every single one of the above.

    Blessings x

  • Morning - know what you mean - that the ONE thing I could usually rely on to get me through situations and problems as well as plan nice times - Is the one thing taken away ( mine not helped by a certain person in my life leaving me at A&E never to be seen/ heard from again - the more I recover physically - the worse I feel emotionally and my brain hurts trying to process that grief too ) .

    Do try to find nice things to do while your brain ( hopefully ) improves . However down or unenthusiastic I feel I do try to partake of as much as possible - eg just had message from a friend to say would I like a cuppa after my walk this morning ...... really don't want to get out of bed - but WILL go - sunshine / walk / cuppa with a friend must be better for me than lounging around even more ....

    I know the more I achieve the better I feel ( even if only slightly) and definitely know the better I eat the better I feel . .... but does take effort ....

    Hope you have a better day - and take care

    :-)

  • No worries. I have now done 8 sessions at Shaylers Vision Centre. I can't say I feel any different yet, but I'm not expecting to until I've done my 20!

    Each session is making me do more, and I feel quite tired after each one. I suppose it's a bit like going to gym for the first few times!

    I'll keep you posted!

    Love Debs

    Xx

  • Hi Ben .

    Like others have said your brain is still sort of reconecting or repairing. It may seem a long time since your bi but in the long scheme of things it isnt.

    Even when you brain is as reconected and repaired as it ever will be there then comes the time of adapting.

    The pain will ease or you will manage it more successully. Try a pain management course that your gp should be able to arrange.

    Has for being what you once was...that may return it may not. If not you may be a new improved person. Your outlook to others will change and you will have a more less judgemental attitude.

    It is pointless putting timescales on recovery as each bi and person is different.

    Please attend your local Headway but also keep on the forum . We do try and help .......honest.

    Pax

  • Hi Ben

    My daughter is only 25 so we know that feeling. She has made great progress since discharged in March this year after 13 months in hospital but they are little steps and she gets so frustrated at how her life has changed - paramedic to someone who needs 24 hour support. Take heart from comments from people such as Recovering H who will try and support us and show there can be recovery from BI. I do as I have to believe things will continue to get better. Love to all affected by terrible events.

    Kath

    x

  • Hi Ben,

    I comiserate and truely 'get' where you're coming from. As has been said, I think, in all the replies is the difficulty in coming to terms with the before and afters.

    The 'me' I was and the 'me' I am now are reversals. The losses, including my adopted way of coping with stress or worry before BI (driving) has been taken away and my main interests of playing in bands has become a memory rather than an actuality.

    I try and take strength from being with my family and the joy of watching my grandaughter changing fron a baby to a young girl and the funny things she'll say, "I love you the most Grumpy", "Why?", "Because you're so OLD!" lol, she's now 5 (only just made it to 5 after that comment!) and just started first proper school year.

    I've also sought out things I can do that I hadn't even thought about before, some may sound boring, I certainly thought they would be before I tried. We've set up a bird table to watch the birds and now go to sanctuary's with bird hides to see more, a small fish pond with ornamental fish and some wild life and I've taken a deeper interest in long held hobbie of photgraphy. My son takes me to motor events, track days n stuff when he's able and on leave from the Navy.

    My dogs, even though I can't take them far on my own, are great company and give an unavoidable reason to get up and go out.

    None of this a lot of help to the way you feel at the moment but as said elsewhere living for the moment is what it's all about. At 60 I probably don't have the same sort of length of time in front of me and the fact the tumour is inoperable at present due to location then the rate of deterioration is unknown as is the finish line. I often struggle with the possible face of the future but with help and support (currently having counelling from a local specialist charity) I do manage to break through the mood, sometimes fully, other times not. But here I am writing to you and reading what others who truely 'know' are saying and the isolation, the loneliness of dealing with the difficulties fades.

    Take care Ben and try to live for the now.

    Geoff

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