Time: Hello I’ve just joined. I fell down an... - Headway

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Catchya profile image
11 Replies

Hello

I’ve just joined. I fell down an escalator 15 months ago. Suffered two brain bleeds. Still can’t work. Been left with vertigo and balance problems. Finally started neuro physio before lockdown but that is obviously now on hold. Didn’t feel I had any real support after the initial accident. Was just told it will take time. Is there anyone out there in the same sort of position? So fed up with this. Just want my life back...

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Catchya profile image
Catchya
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11 Replies
AndrewT profile image
AndrewT

Dear Catchya,

I Will answer you, in much more, Detail tomorrow. For now however it's almost 1 am, so Good Night Catchya.

AndrewT

New_beginning profile image
New_beginning

My husband sustained TBI March 2020. My refusal to send residential on discharge as he didn't meet cognitive baseline. 8wks Tuesday be home told 3 weekly visits from Brain Injury Team. Weve not had one visit. In this time hes been back to hospital as he presents stroke symptoms with fatigue, attacked postman, obsconded. They gave hope prior to Boris speech about home visits, but due to speech not giving clarity home visits still postponed. Ive been soley supported him with challenging times with 2 children and no family/friends support. On my knees is a understatement, but i hope we get services soon and i hope the same for you. Just feels injuries have been pushed to the side with virus and its shameful now.

Catchya profile image
Catchya in reply to New_beginning

How awful for you and your family. Difficult times as it is. I hope you get the support you need. I’m just gobsmacked at the lack of care or knowledge for brain injury patients from the nhs. Everything I’ve done I’ve had to do myself.

New_beginning profile image
New_beginning in reply to Catchya

Sounds like your doing marvelous and you hold on to your strength. There has been no ethical practice from health professionals and no Governing Body Guidelines been carried out. The virus sufferers (which is fab) have been getting home services purely due to media/ publicity, yet if i listened to professionals putting him in residential with 1:1 support (costly as well) he would of not be at this stage in his rehabilitation/recovery, he would of deteriorated mentally. Lets hope the Health Secretary gets this sorted ASAP.

sospan profile image
sospan

Hi,

Sadly, there are many, many people out there in the very same position as yourself. Head injury patients are probably as common as those with asthma, heart disease diabetes etc.

Whilst ours may limit what we can do even to the point where it can ruin our life, because it doesn't put our lives at significant risk, we get little time from the medical specialists. Indeed you may find that after 15 months, you are more "expert" in Head injuries than your GP.

Many members on here have found support within the NHS is limited but there are local help groups such as Headway, Mind etc. That can help and direct you to other local services.

Fortunately, you did get at least some good advice in that your symptoms will take some time to change. By change, they may not disappear but get to the point where you can work around or cope with them.

i received mine from a fall, after some bad advice from a GP, it took me 2-3 years to seeing some positive changes. However, everybody is different and their recovery journey takes different paths.

All the best on your journey

Catchya profile image
Catchya in reply to sospan

Thank you for your kind words. I wish I’d found Headway sooner. It’s nice to talk to people who at least understand. I look ok so people don’t get it!

sospan profile image
sospan in reply to Catchya

No problem. There is actually a very good series of videos on Youtube with the "You look good" where someone in our position describes his story of trying to get friends and family to understand his injury because all they would say is "but you look good"

Fortunealty, the old adage "Time is a healer" is pretty accurate in our case

all the best

Maweesqweeral profile image
Maweesqweeral in reply to sospan

Hi there, just did a search On YouTube for the video series ‘you look good’ and nothing’s coming up. Can you post a link as I’m very interested in them. Thank you 😊

sospan profile image
sospan in reply to Maweesqweeral

Sorry my mistake "it is you look great" - the joys of remembering incorrectly after a head injury

youtube.com/watch?v=x9Xso4q...

Catchya profile image
Catchya in reply to sospan

I found them. Also ordered the book “You Look Great!": Strategies for Living Inside a Brain Injury

sospan profile image
sospan in reply to Catchya

Glad you found them useful.

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