Good grief a year has passed since last post, phew... - Headway

Headway

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Good grief a year has passed since last post, phew what happened :-)

Mack59 profile image
5 Replies

I keep forgetting how to navigate internet/computer stuff, ime not actually sure how I got back into my profile and thus here. Reading my last posts and replies I now know it's a year to the week since I was last on. My new hip is a year old, ile see my consultant in a fortnight, ime not sure what he gonna say, his main concern for my successful recovery was/is my Brain Damage/injury ( right frontal lobe atrophy ) my memory has definitely been a problem but I think worse is the constant anxiety and stress, i was told I should be pain free but am definitely not which is ok cause I've never known pain free. I was born with my hip out of the socket, unnoticed for 9months, then 4&half years in hospital, was supposed to wear callipers but apparently I refused, when I was 10years old (1970) when I was hit head first at 40mph by a ford Corsair, died 4/5 times (was told by Doc's) coma 4&half days then woke up with an anxiety attack (my first memory) and no memory of my previous life. My parents were handed a piece of paper which said "no neurological deficit" so just restarted my new totally altered life with no parental understanding. Have had basically zero help since, didn't get brain scan and diagnosis till 1996, put on Incapacity benefit until CAB (mindful mental health team) got me PIP in 2015. Still getting no help from medical side, am now 57 and totally traumatized by life, luckily got good sense of humour and great friends. Just got a PIP reassessment form !!!??? Local Cab has lost its mindful mental well-being team (funding ran out) and are so busy they can't help until a couple of days before forms due back...Sorry for rambling but ime not very well, hehe... My Doc's say I'm too intelligent so my brain damage is only slight...One has to laugh ( I can't cry unless ime having a breakdown ) sorry, hope ime not depressing anyone, will try phoning Headways helpline again tomorrow ( also very busy so no success yet ) Wishing all survivors and carers well :-)

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Mack59 profile image
Mack59
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5 Replies
TBI2015 profile image
TBI2015

Hi wow that's some rough journey you've had !

And the supports not much better now (in our area anyway)

Here's a website that I used to reference when applying for pop for my dad and I also had a person from our local headway help out with a bit of coaching

It was silly things like saying "sometimes I need help with..." would drop you a point cause it wasn't worded "I always need help with" crazy!

pip-assessment.support/#mai...

You sound similar to my dad e is very intelligent and able to cope most the time but struggles with anxiety/depression/fatigue and forgetfulness - some days are good some days are dreadful but it doesn't help when you have these stressful assessments cancelled with an hours notice (TWICE!)

Hope you get sorted and good luck

cat3 profile image
cat3

Hi Mack. Sorry to hear of your troubled history ; keep the humour going................ it's a lifesaver ! Good luck with the helpline, and in the meantime this link might be helpful for your PIP assessment :- benefitsandwork.co.uk

Best wishes x

TaIaV profile image
TaIaV

Dear Mack,

You are amazing. I am honestly in awe of your strength and spirit. Oh, I am sure that constant stress and anxiety take their toll on your good humor, but I know people who have not suffered anywhere near the setbacks that you have and who do not manage to perceive any good in the world.

I do wish we could erase your past and present challenges. It sounds like you did not even get the kind of parental doting that was befitting your situation and which might have reduced the trauma then and now. You seem to have done a great job of parenting yourself and avoided closing people out of your life: You cannot have good friends without being one, so you clearly manage to go past your pain and anxiety to contribute to other's lives.

So glad you found your way back to this site! I do not have a BI but am a relative of someone who does. I see how helpful everyone on the site is and what a difference it makes. I have learned so much .

Good luck with the bureaucracy. It does sound like your efforts to reach headway and the website that Amy suggested will re rewarding.

With respect to your consultant visit coming up. I hope he/she is good. In any case, it is always good to plan out explicitly what you want to get from the visit and perhaps take a friend who can help you ensure that you get that. We all know this but iI always find it hard to push myself to actually do it.

ll the best,

Taia

randomphantoms profile image
randomphantoms

Hi Mack

Glad you found us again.

A tip for finding us is to click on "keep me logged in" and opt for daily notifications.

Here's to being able to keep in touch and many happy chats.

Love n hugs

Xoxo

I totally do the above! I'd forget about it otherwise.

Good to have a ramble Mack- I feel your pain, you say some things I feel similarity with :)

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