recovery

[rubyking27]

hi there, so im in my 2nd year of recovery...and want to know how much more change will i be faced with...they say its the first 2 years that the recovery takes place, but does it take longer???

[Kirk5w7]

Hi Ruby, improvements can happen all the time.

I'm just coming up to my 5th year and still seeing improvements albeit very slight and subtle at times.

It's fair to say the first 2 years saw the biggest and most frequent improvements, it's now fine tuning and of course some things will never be the same. So don't give up, get on with your life and you will continue to see those improvements, sometimes when you're not expecting it.

Good luck Janet x

[swedishblue in reply to Kirk5w7]

You have summed it up beautifully. I can't really improve on that, except to say, never lose hope and keep a check on expectations. I thought if I tried hard enough I could beat this brain injury - there's no way, without giving yourself worse health problems later down the line.

[rubyking27 in reply to Kirk5w7]

thank you for the reply!!!!

so what would you consider improvments now?? this forum is great...so many more questions to ask!! x

[Kirk5w7 in reply to rubyking27]

Hi again, improvements now is a difficult one.

For me, I've been left with balance issues, severe fatigue at times, visual problems and some nerve pain in my arms and hands.i have a strange sensation in my head, very difficult to explain and it leaves the various consultants I have seen scratching their heads with a puzzled look on their faces, not very helpful.

I didn't have a trauma to my brain as such, with encephalitis it was a global swelling of my brain which was more severe in some areas.

Anyhow, I have been lucky to recover as well as I have with no personality issues, the real me is back, and no loss of intelligence either, my processes are slower but that is improving as time goes on.

So, improvements that I am still seeing are the ability to do more without the exhaustion. I attend Tai Chi lessons every week which help with the balance, and fortnightly I have acupuncture which is helping the nerve pain.

I have also just started vision training to rewire my brain to recognise my left and right, this also helps with the balance issues as it is a vestibular problem, common in brain injuries I believe, but not always helped by the NHS. I am paying privately for a course of 6 of these rather than push and push and wait for the NHS.

I am waiting for my GP to send me to an endocrinologist to check my hormones are all in balance, but again I have been pushing for this for a while now, basic thyroid tests etc say I have normal levels, but these basic tests are not always enough and the pituitary gland can be damaged in BI.

Mostly I am back to the old me although I doubt I will ever drive again and although I had intended to work til I was 65 I have not worked since my illness 5 years ago, wouldn't employ me!, I am now past retirement age. I'm just trying to refine the new me now.

Take care Ruby, and never lose the faith😀.

Janet xxx

[randomphantoms]

Hi Ruby and welcome.

You have touched on one of my hobby horses!

Question for you......What are you expecting?

If you are expecting to be exactly who you were before that is simply impossible. You would have changed in these 2 years anyway.

Progress is always possible. As Janet says the longer it is since the injury the smaller and more subtle the improvements are but they do happen.

The more you work at it the more results you are likely to get.

Keep working at it and enjoy the new you.

Love n hugs

Xoxo

[rubyking27 in reply to randomphantoms]

thank you for the reply!!!

ok so im just gunna fill you in...and i know your not a specialist so not expecting a huge long answer... its been a year and i think 95% of me has actually come back..my love for art and design, food, yoga and medition, travelling to new places is all back in place its just unfortunatly my fatigue which is letting me down, which means i cant work at teh moment.

im not expecting anything really...and im very aware that i would have probably changed anyway...even if i hadnt had a cash. so its not like im feeling sad or out of place....i just wanna know what to expect in the next year.

x

[randomphantoms in reply to rubyking27]

Aha! Fatigue. The perpetual stone in our shoes and the joy of living with a brain injury.

Download the headway leaflets on fatigue.

Practically :staying well hydrated, taking extra Omega oils, avoiding caffeine can all help.

The thing about fatigue is that we get tired quicker than those without a bi purely because of the rewiring we do and the detours our messages have to take.

Love n hugs

Xoxo

[paxo05]

Hi

They say (doctors) that two years is genrally the recovery period for a bi.

That does not mean you wont improve as you adapt to the new you.

Seventeen years on and I am still finding new ways to adapt and " get better".

Good luck and never stop improving .

Pax

[Hidden]

Keep reading on here as it's really helpful hearing other peoples experiences of brain injury- even though everybody is at different stages. I was hit by a car in 1996 and went into a coma but not for long. 20 years ago and I still have problems but I can manage them much better now!

[AliCathy]

Four years after my brain injury, caused by a virus, I have recently insisted being reassessed regarding my memory ability. The difference in the results between now and two years ago are, if I say do myself, amazing. I still am not who I was before all this occurred. Most of my life before the illness doesn't exist. Memory difficulties are somewhat unique, all I am attempting to say is consistent brain and physical training seams, for me, to have positive outcomes. Well done if you got this far! Take care and give yourself time.

[sospan]

There is this difficult balance between acceptance of who you are now and determination to get "better"

Whilst I have accepted the new me, if some said take this / do that and you could return to your old self I would in an instant !

The big question is "what is improvement" and how do you measure it. This takes more thought than people give credit to. Is it doing things better or faster, doing new things or doing more things. ? You can set targets or deadlines which can be motivational but also demoralising and detrimental if they are too difficult to meet. This is where OT nurses are usually great. However, as many of us have found many OT nurses disappear off the scene a short time into our injury.

One of the simple things that people do is to keep a diary or blog and then once in a while go back and re-read where you were in the past.

Me, I find myself battling with my head injury, some physical injuries and getting older, so whilst I see improvements in my cognitive skills, sometimes I feel myself going backwards in terms of physical ability.

However, the one sure fire thing to get improvements is to keep busy and where possible keep moving.

All the best on your Journey

[jayne_h]

Try Tina M Sullivan's Nourish Your Noggin Cook book. Well worth it and has good recipes. Might help you even more.

[Gaia_rising]

Hello, rubyking27 , and welcome.

I'm just approaching 2 years myself, so it's something that's been playing around my head, too. (Just had a look at the scar in a mirror...) Like the scar, which means I part my hair a certain way, a lot of life post BI is a process of adaptation. Personally, I've had a recent setback, which has made me re-evaluate how the original haemorrhage has impacted on my life, I'm in one of my weird over-processing stages, but I know that 'before' isn't the same as 'better', so I'll come through it.

All of our injuries impact on us in different ways, and we were all different 'before', so there's no real linear how-to-guide for recovery/adaptation, we just fumble through, learning as we go. I don't think any human being ever 'stops' changing, developing, adapting, I don't think any of us 'before' would ever have thought "Right, I'm x years old now, that must be how I'm going to be for the rest of my life!", the 2-year 'window' is bandied about a lot, and I've fallen into expecting progress, or some sort of defining 'Tah-dah! All better now!' epiphany- unlikely to happen, I'm not going to wake up on the 2-year anniversary, and suddenly be able to play the violin, or speak Italian...

That's my skewed sense of humour, please don't take it out of context, we're all bumbling through our own journeys, and I tend to resort to ripping the proverbial out of myself as a coping mechanism. The physical structures and impossibly complicated pathways within the brain probably do 'repair' more in the first two years, but we're not souffles, we're not magically 'done' at that two-year point. (Yes, I opened the oven door too soon LOADS, I'm impatient.)

We adapt, and we keep adapting, because the world doesn't really adapt to us, so we need to take our lives in hand, and see what we can do.

Will life get better? Of course it will, we're human beings, and we want to be 'better', whether that's losing a stone, learning to ride a unicycle, or donating all of those clothes we'll never wear to charity. Is there a defining point, an absolute date where we stop improving? I don't think so. (Apart from the obvious one, and I'm not going there.)

[Joannebirley74]

Im now coming into my 6th year and still have all the same probs...mood swings depression stress not really knowing the reason why leading me to be even more confused... aswell as many more symptoms. guess we are all different and all recover differently u are not alone

[fedupspark]

hi rubyking you have come to the right place full of people with good advice and good listeners my personal case i had a severe stroke jan 2014 three years now initialy i had to learn how to walk and talk again im still trying to master writing again i feel i made most progress i the first year i seem to have levelled out but everone is different

take care peter