Hi everyone,
You might have noticed that we passed the amazing milestone of 10,000 members a few weeks ago! We wanted to celebrate this by finding out how Headway's HealthUnlocked community supports people and the impact it has on people's lives after brain injury.
Please tell us your thoughts in the comments below, and we'd like to take this opportunity to thank each and every one of you for contributing to the wealth of knowledge and support ❤️
From Laura, Gemma and Andrew (moderators)
The love and compassion from my son and daughter is priceless. But, in a nutshell, Headway offers something which no one else, however well intentioned, can.
It's only the kindred spirits here on the forum who have first hand understanding of brain injury issues and, from living with it every day, know us as we truly are .....and help curb the isolation.
Cat...
As Cat said - this is an invaluable service.
1) I can ask anything I want, however silly it sounds - for example, I asked what they mean when I am asked to 'rest'. Never would I have worked out that this means, curtains drawn, eyes shut, lying down, resting.... I was just putting up my feet with a cup of tea, in the middle of the day. Only people with experience of this recovery can tell me what works
2) I can offer help to others - and that is SO useful, because it feels like I did something useful that day. Helplessness is really bad for all of us.
3) I come here to this platform and realise that I am not alone - that is really priceless.
4) That others have the same experience on this platform is VALIDATION for my family, that this (whatever it is that I said happened) actually happens to other people too. So it feeds back into the family dynamic.
5) Some people have developed a sense of humour around their circumstances - and when they write something it really lightens the load.
You do good work. The only other thing you can do is get known by doctors more.
I joined Headway after a family member pointed me in this direction. I'd struggled to remember what the neurophychiatrist had said to me, I even thought I had frontal lobe dementia at one point.
Coming on here sorted me right out. Explained in detail what was wrong with me and introduced me to others who have the same problems. Importantly, when I forget I can come back here to refer; eventually it sinks in.
I can't overstate how wonderful it was to first "meet" others who feel that sense of grief over the loss of their old self. Im not alone. To see that others find post it notes a waste of time. It's not just me!
But it's the other members who really make the site. Sharing coping strategies is invaluable.
I'm so glad I'm here.
Jim
Very much a life saving somewhere to rant/vent our dark moods, get support from unseen survivors who share the same survival!! I love u all!!!
Headway means a huge amount to me and my family. In the early lost days I would phone for help and advice. Now over 2 years later, I still check the forum several times a week, it helps me to feel less alone. Our lives have been devastated and changed beyond recognition by my husband's huge stroke. He still has a track and PEG feed, almost total paralysis, and can only communicate by using limited eye movements. I visit him daily and the forum helps keep me motivated as I attempt to keep up with his therapeutic exercises and also find suitable diversions for him. He has less official therapy now at the centre where he lives. I totally understand this.... I still keep up with friendships from before his stroke. People are kind but can't really understand what it is like, but 'forum friend's do! Also people don't want to visit as they find the change in him too upsetting. It is sad. The forum has helped me adjust and accept these things. Our lives have not finished, although they are completely different, we are different, but we are coping now, thank you Headway.
This has been so helpful. Getting replies to any questions I have posted gives different ideas to look at and reminds me there are people who can help me not feel alone. On other side, giving replies is a positive in how I feel about myself. Feeling I can help someone else who may be struggling to come to terms with a head injury makes me feel worthwhile.
‘My Lifeline’ - only a couple of words but encompasses it all.
Thank you so much for being there.
Best wishes Nanapal. x
I'd like to thank all members of the Headway community on this forum, including moderators and the the Helpline staff. I personally havent used a Headway meet-up. The Headway Community has helped me in ways that are too numerous to mention. This community means I ALWAYS have somewhere I can go to either write or talk and that is invaluable. I have had questions all along the way and they have been answered by knowledgeable people - this is brilliant. Having this outlet and support means that I feel less alone and my journey has definitely been affected for the better in terms of my understanding. If you were to ask, what would your journey have been like without the Headway community? then I am sure that others will agree, there would be a lot more complicated mental health and misery. Not saying we do not struggle with these things, but it is with support and education and that is quite different from being alone and not having essential information.
The Headway Forum proves that 'lived experiences' help those with a condition that many in society do not understand, even medical professionals. Some of us fall under the hidden disabilities bracket therefore our experiences are unique to a small segment of society and a society that is not geared up to understand or support us well.
I don't post much but I look in everyday and it's my safe space to be with others that truly understand.
First and foremost, thanks to Headway and the mods plus everyone for contributing to this safe place that is both a font of knowledge and somewhere to express our fears and concerns plus experiences.
Helping each other is a big factor because so few people understand how brain injury in its many forms affect us and our lives. No other charity or talking therapy come anywhere near.
So thank you all and long may it continue.
We depend on it when we are down and it pulls us back up again and makes me realise how lucky I now am to be able to even read and use a mobile to contribute which at one time I was unable to.
I think everyone else has said what I feel about the forum here. I had good external support initially, but I think coming on here and reading other people's experiences, did more for me to understand and cope than months of rehab therapy. The feeling of not being alone is invaluable. Will be forever grateful to Cat, PairofBoots and the Baron - and everyone else here who said the right thing at the right time. There's all the weird symptoms to deal with that I never mention to anyone else, except in here - to the old normal outside world all I say is I 'get a bit tired, or 'the fatigue is quite bad'. Appreciate it doubly lately because catching Covid earlier in the year seems to have knocked me back a year or two in recovery.
I was so pleased when I found this site. You feel so alone when you are out of hospital. My husband is fabulous helping with anything I can't do physically, he has done most of jobs round the bungalow. But it's mental side that's a struggle. I was desperate to talk one to one with someone who could understand the problems I was going through mentally like, I kept saying this is not me. I used to be very organised.. I would help my grand children with school work. Not now I wouldn't know where to start.. you think you are the only one like this. But when I started sending messages or asking questions, I got replies from like minded people. Headway is so important, I attend most weeks to local branch. I also write on here if I am struggling about something. Keep up the good work.
What a pleasant community!
This community is great
Being part of this community
