Time...? Going back to the consultant.

Hi All,

Haven't posted for a while as trying to get on with life and finding it extremely difficult. Had a long chat with my wife and mum last night and it was pointed out to me that the Bi Nick needs a service as I'm not getting better and my decision making along with my thinking is that of a 21 year old or less. Im 50 next year so not good.

Struggling with decisions and life in general so was wondering if any one else had the same problems?

Had an accident in may 2015 which I sustained 3 brain bleeds on my frontal lobe so personality and thinking changes. Empathy is a major problem for me in that I don't have any and as said struggle with life well thats a question I don't...! I don't worry about anything and take everything in its stride and one day at a time, I don't plan things and I'm happy just being on my own with life drifting past me, I'm happy being on my own. Sad I suppose as I have 2 beautiful and brilliant kids aged 15 and 17 and my wife but I'm happy being on my own! is this normal?.

Its a trip to my GP and back to Basildon hospital to have a chat with my consultant to see if there is anything they can do.

I have had a long bout wroth the headway councillors who have helped and done wonders but its time to go see the experts.

Again has anyone else experienced this after 28 months...?

Nick

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26 Replies

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  • We're on similar time-lines, MXman so, yes, I have a sense of where you're 'at'.

    I think you'll agree that we both 'accepted' and 'got on with it' fairly early on in our bumpy journeys, I'm coming to realise now that a lot of my 'strategies' were probably denial about how difficult I found lots of things, determined to 'play the hand I was dealt'- there is a more vulgar version of that expression, but I'm behaving myself.

    I wonder how many of us do that? Accept that we have some new limitations, and just try to work around them as best we can, with little 'medical' support or guidance, because even the brain-doctors can't tell us what will, or won't improve. I need a re-referral to neuro-psychology, my general NHS counsellor is doing his best, but the vast majority of my issues are either disability related, or related to the trauma of the haemorrhage, no quantity of "You're doing really well, considering!" can bridge the gulf between what I was, and what's left.

    I wonder if we put too much hope on the fabled 2 year milestone, or, if we looked at where we were two years in, and thought "Hang on, this is not enough."? That's where I am, 'not enough', and, despite multiple requests, the neurology team are showing no inclination of picking me back up. I have less energy to expend now, and I'm using what I have bouncing between looking for suitable part-time work, and preparing for my PIP tribunal. Not brilliant for my general mental state, because I have to keep 'switching' my mindset from 'can do' to 'more difficult.' I know that stomping my feet, and DEMANDING a re-referral might help with the PIP tribunal, but I also know that if I don't find a job soon, I will run out of money. Catch-22.

    Keep fighting for you, and for the right level of support/intervention. I had my son home for the University summer break, and it was obvious to him that I'd declined, our BI don't just impact on us.

  • The 2 year recover although a joke is understandable.

    I managed to get a refarral some years after my bi ( about 6 or 7 years). I was convinced I had greatly improved.

    I was retested and dealt a body blow as I scored exactly the same as post 2 years bi.

    They put the improvement down to adaptIng to my new limits and not medically improving.

    The upshot was it caused me to actually get worse for a while as I had convinced myself I was recovering again.

    Maybe the consultants should add that you may improve after the 2 years as you adapt. This I feel would give people more encouragement to keep pushing well after 2 years.

    Pax

  • Adaptation and acceptance is what I'm living by and thats suggested from the headway councillor its so difficult though.

  • Thank you for your reply and you are absolutely right, I was putting the 2 year milestone on myself and my family who are the ones that have been saying Nick your not right. My poor wife is still thinking about divorce...! she's had enough of no empathy and no emotions. its heartbreaking so iv decided to go back to the consultant well I'm going to see my GP this coming Friday and get the ball rolling. Iv had enough too of feeling fatigued and constantly knackered especially after midday.

  • It came crashing home to me when I had my son home from uni over the summer. As you know, I chucked the ex out, and tried to do everything on my own. Some things get done, some don't.

  • This may seem strange advice but have you both tried marriage counselling.

    Not relate....They will not understand the bi issue. We started there and it made things worse.

    Luckily we managed to get to see a behaviour counseller that normally deals with sexual counselling in marriage. They made the link with the bi and tailored counselling. This was on the nhs and through our gp.

    It may not help....But it may just.

    It wasn't easy being totally open but we got back together and are still working on it.

    Hope you can explore every chance. But you both need to commit to it.

    Pax

  • Thanks, paxo05, but that ship had already sailed for me. The ex and I had both acknowledged that the marriage was over long before my haemorrhage, we were 'staying together for the child', and it was horrible. (We were actually staying together as not to upset the Father-in-law, who'd recently had cancer, and the ex got the benefit of a housemaid, but nothing else.)

    My cynical side thinks that the ex saw himself as a knight in shining armour at the prospect of me being significantly disabled, but it didn't turn out that way. I don't know if he thought there might be a chance of me wanting to 'try again' after my near-miss, but there wasn't, I was expending so much energy just 'acting normal' that I didn't have any left to play wife.

    I'm glad that you and Mrs Paxo were able to work through it, and hope that MXman and his wife can also be supported through these trying times, it's hard on everyone involved, and the most sensible thing for me to do was to cut the ex loose, rather than end up resenting him.

  • Hi, I'm experiencing this after 5 years. Am seeing the GP next week then hoping he'll refer me back to the rehab unit . I have a letter from them saying if I have any concerns they will see me.

    So it's time to take them up on it

    Janet

  • I never went to a rehab unit what does this entail as it might be good for me?

  • Hi MX,

    I had to wait 2 weeks for a place at the rehab unit but they kept me in hospital for that time as I was unable to care for myself at that point and I was bed bound, I could not walk and they were still feeding me by peg.

    Once I was at the unit I got physio everyday, they taught me how to use a wheel chair whilst teaching me to walk again. Also how to shower and care for myself and feed myself. They also taught me how to use the kitchen again. This took a huge burden off the family and I came on by leaps and bounds. They had me do neuro- assessments and I was allowed home at weekends once I was able to walk and get around easier.

    I signed myself out after I'd been in here 6 weeks although they wanted to keep me for another month but they wanted to move me into a room that I would have to share. I said no and that was that.

    I had 3 follow ups over the next 18 months s I was indebted to the care I was given, they were brilliant xxx

    Janet

  • Rehab units can be useful. I had a stroke in April 2016 and spent 3 months in hospital and then after a month at home my slot at a rehab unit came up. I was there for 6 months. It was great considering I could barely walk. Daily physio, OT sessions and 2plus speech and language sessions each week. Reviewed after 12 weeks and I agreed to their proposal that I spend another 12 weeks.

    The intensity took a while to get used to bearing mind I had been in hospital for 3 months prior.

    The challenge i have now is carrying on with the therapy exercises on my own or paying for therapists. One does get spoilt by the daily support of a rehab centre.

    It was a life saver for me even though I got to go home weekends.

    Would definitely recommend for anyone that is able and willing to spend the effort to improve.

  • Hi Mxman, I have found help from a neurological chiropractor. They are chiropractors who have done a course at the Carrick Institute in America, who specialise in head injuries. America is waking up to all the sports head injuries their young men are incurring They are not allowed to advertise! I found mine by googling. They are not NHS, they are private, expensive but soooo worth it. Definitely worth a try. Trudi x

  • Mmmm ill have a look at this I also have a contact who we are trying to get hold of a Dr Greenwood who specialises in neurosurgery and the brain so worth a shot.

  • I'd be interested to hear about this Dr Greenwood, please tell us more when you trace him

  • We have contacted him and are waiting a reply.

  • Hi there.

    Sounds so familiar. I don't cope well with plannew events (get worked up beforehand )yet function on routine?

    Sounds like your journey has been like mine. Pick yourself up and get back to life. Ignoring how you have changed then failing.

    Took me about 8 years to come to terms with the new unimproved me ( ok I am still getting there).

    Others feel I drift through life aimlessly. If only they knew I was trying to get through life the only way I can. If I plan to much I panic about completing things and nothing gets done.

    I do set things every week and have rest days so I can achieve anything.

    Holidays are a nightmare as I never know what day I am on due to no routine.

    I have realised my life runs at a different pace to those around me. I am not happy with this but it is what it is.

    I think we are the preverbial swan.....serenely drifting through life yet really paddling like #### .

    Pax

  • Hi Pax love the thing about the swan thats just so me, paddle like XXXX but i=on the outside I look like life is good. Im good at putting on a facade and making it look like I'm ok while deep down I'm screaming. So difficult at times.

  • Yeah I am accused at putting on a front. It's true but it's for my benefit and not others. It's a way of trying to blend in. Yep I know I shouldn't have to but I feel able to do more by doing so.

    God if I carried on how I feel I'm sure people would run for the hills.

  • Ha ha ha absolutely...

  • I'm too tired to contribute much this evening - but do wonder sometimes if we all go through some of this whether we have had a BI or not ...

    started panicking yesterday about life in general and rueing the fact that I may well only have " 20 more years" or less if this thing hits again etc etc

    Onwards ! :-)

  • Hi Moo,

    I am 65 next birthday, and it's really hit me that I could only have 10-15 years left do feel I have to get back to me soon.

    I find I'm horrified when I see celebrities dying in their late 60s or early 70s.

    Aaaarrgghh

    Janet xx

  • I try to enjoy the "me" I am now - in case I don't change :-)

  • Aaaarrgghh too! It is just too scary to think about. Totally with you on this one. Clare x

  • Personal question but what have you had with the brain? I’m had a much more less serious injury but equally just “got on with it” I’m due to go and Have cognitive testing and neuro reabbitaion then back to see the Neuropsychologist I assume.

    I should of have this years ago but I just got on with it etc!

    Personally knowing more about how I’m damaged helps me deal with it, I have to work with anger and empathy it’s been a hard time relationship wise but has improved even before being poked and prodded by the NHS starts!

  • Hi Roger, Slow reply sorry. Ye I have been getting on with it and to be honest my family are the ones that have pointed my changes out not me. I have an appointment booked for the 30th October with Dr Richard Greenwood through my Dad so more will be revealed then. Just like you no exactly like you I need to understand whats damaged to help me have an understanding of reason. It was the same with the accident that I couldn't remember what happened which I fought and fought to try and reason with but it was your reply about how the brain doesn't RECORD that moment so thats why you can't remember it. Ill keep you posted on my meeting with Dr Greenwood. Nick

    qsprivatehealthcare.com/our...

  • Enjoy the things you enjoy mate😊

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