Although two years have passed since I received a serious head injury whilst cycling, I still have many 'invisible' difficulties that I am hoping others may be able to support me with.
I have had to take early retirement from my demanding but extremely rewarding job and still find it very hard not to compare my life now to how it used to be. I get extremely tired, depressed and incredibly frustrated at times and worry about how intolerant and impatient of people I am sometimes.
I intend to read community posts on a regular basis but am still finding it hard to discuss my own issues so my own input may be limited initially.
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Aug-2014
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Hi. Am pleased that you have felt able to make an initial post. I think many of us likewise browse the posts to begin with until we reach a point when we feel able to say more about ourselves or join in replying. You take the support and help in what ever you feel is ok for you. Lots of reassurance can be gained from just reading the threads and you will start to realised you are not alone with your post bi struggles. Everyone is unique in what they are experiencing but collectively you will find others who have similar difficulties.
I likewise went from being a working person in a job I loved to overnight no longer able to work. I also struggle to come to terms with that. previously I was a very 'people' person and now I find it very hard to get on with others so have become somewhat a recluse.
Welcome Aug-2014. You really are now amongst people who understand how life is for you now. Most of us here have undergone life-changing injuries, whether by impact to the brain or 'natural causes'.
The loss of our previous lives can be devastating, but once we overcome the temptation to look back and compare, and stick to looking forward, life becomes more tolerable. Easier said than done because memories have a massive part in our lives, but for me, after 4+years, the yearning for who I used to be has kind of worn thin and I'm finally getting to know and respect who I am right now.
Acceptance is the biggest, and probably the most relevant goal after brain injury. I know I've become short-tempered and intolerant of all types normal human behaviour, I struggle with short term memory, I can't stand other people's noise or bright lights etc., etc., but I've learned (most days !) to take each day as it comes, and make of it whatever I can without comparisons or regrets.
I hope you'll come to talking a bit more about yourself when you're ready ; meantime you know you're in a safe place and you're very welcome here. Cat xx
Hi and welcome I hope yiu soon feel comfortable here. There's always someone who understands where you are with your recovery, and more often than not,someone's had experience of similar situations and symptoms. I also 'stood on the sidelines' for a while before posting. It's normal to do that I look forward to reading your posts when you feel the time is right.
Hello and welcome. We are a friendly bunch who will do what we can to help.
Have you spoken with the Headway helpline? They are a lovely bunch.
You can download the leaflets that may help you understand and manage the fatigue.
Speaking for myself I had zero tolerance for others for a long time.....I was too busy trying to get better.
In the past 6 months I've noticed that I am beginning to make allowances for others and taking time to listen.
As it's been 2years I would suggest you consider counselling. I feel that you may not like the idea but it can be really helpful to help grieve for the loss you've experienced of self worth ,job etc.
My accident was just over three and a half years ago. It took me about two and a half years to fully accept the 'new' me! I used to showjumping at a high level, and now I don't even like horses! Very different!!
I still have moments of frustration, and often have panic attacks, but I think I am now better at handling those moments. Like you say, it's the hidden disability! I can never have a paid job again, so I do Voluntary Work for Headway and also do an hour a week in the Portland Ward in Poole, which is the rehab ward. I mainly try and talk with other BI patients.
'Finding it hard to discuss my own issues'. Yes. After a BI from natural causes, I lived a lie for over a year before I went for counselling and discovered I was also lying to myself. I was then worried, depressed and panic attacked through several months before disclosing to my dad on the phone. Put the phone down and cried - with relief but also anger - it was then I started to accept where I was. Reality sank in. The worst part was my bank account was near empty - I had lost the ability to spend wisely. Grave times. Bad spending decisions. No concept of planning. Had lost executive function in the brain.
Somehow in discussing where you are, it makes it real. By not discussing it, you can pretend you are making it all up. Day to day life becomes difficult, stagnated, unhappy.
With hindsight, I recommend writing to yourself in a diary first. To become aware of your 'issues' fully, you must understand them first, then you can talk about them to others and if need be, they can offer help or advice, with an outcome of fixing the issues. Some issues are or appear unfixable. Park them to one side. Deal with the ones you can see a road to fix.
For instance I had a stammer for over a year before someone had the kindness to tell me! Sounds silly now, but I just didn't clock it, bring it into awareness, my family were too polite, and I was more or less a recluse. The person who told me - had previously had his own injury - so thought nothing of it - to be honest and help another on the healing path.
I find nowadays if people have gone through a major healing experience, having to give up things in their life, they get you very quickly, they say helpful things, they help you accept where you are.
Steer clear of trying to explain to people who have not undergone these difficulties - where you are now - its not nor never was on their radar of understanding. They tend to say unhelpful hurtful things which can put you back months while you withdraw to process it.
Do check you are getting all the vitamins you need, extra B12 for nerve pain, fish oil for brain, hemp powder has 20 amino acids (put it in a smoothie in the morning), Vit D for depression, Iodine for immunity to support healing.
Welcome to post as you feel - some very lovely people on here - many strong cookies.
Hello, Aug-2014, and all the other things you are, too.
This forum is a fantastic place to air issues that the broad majority of people wouldn't 'get', we all have our different back-stories, and we're all adapting differently to the limitations we find ourselves with. EVERYONE here is supportive, and nobody is judgemental. We each have good days and bad, as everyone does, but we're all intent on making the most of what we have to work with. (Even on the 'bad days', it still comes through, the desire to survive, more-than-survive, to live through this.)
I thought I'd 'accepted' my changes, my limitations very early on (My haemorrhage was February 2015, so it's still a relatively 'new' set of injuries.), I've come to realise since, that what I was actually doing was trying to live more or less as I had before, and that wasn't sustainable. If you try to sweep a brain injury under the rug, you'll eventually trip over the lump, and end up with other issues to deal with.
In your own time, at your own pace, have a browse at posts that interest you, to get a 'feel' for us, nobody's going to poke you and ask you 20 questions, and there aren't any agonising 'intro' or 'team building' games. We mostly just bob along, pulled by our own currents, chatting, or commenting when we feel like it, and staying out of the way when we don't.
You are amongst friends here, Aug-2014. Some of us are brain injury survivors, for various reasons.... Others, like me, are Carers of loved ones who are travelling their own journey at the moment. There are some amazing people on this site who are strong, knowledgeable and very sensitive to the challenges you may be trying to overcome. Look forward to hearing more from you. X
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