isolated

[Percylovesbees]

feeling cut off from everyone due to sensory overload and not being able to pick out one voice or think straight. Just having someone alongside not judging or forcing anything, not expecting anything from me is life affirming and answered prayer.

[cat3]

Hi Percy. Please tell us more about your injury and how it impacts on your everyday life. Do you have family or friends for support/companionship ?

Look forward to seeing you again soon... Cat x

[Life-Goes-On-2021]

Hi Percy, the social isolation is hard and frustrating. I’m lucky to have one particular friend who doesn’t make me feel broken, but just does those things that make a difference- (ie helps me sort my shopping, walks on my right to as it’s easier for me somehow). I think it takes time even to identify those things yourself and trying to explain them is even harder! Over time, I’ve learnt to cope with more and unfortunately it’s only ‘exposure’ that makes it happen, but I’m still wary of busy/unfamiliar places. I found a wall behind me or better still - sitting in the corner looking out helped so much initially. I still prefer to ‘cut down’ the possible inputs and directions, but can cope for short periods now if this isn’t possible. Good luck.

[Percylovesbees in reply to Life-Goes-On-2021]

it’s an invisible life changing thing isn’t it and it’s learning how to navigate day to day and be upbeat. You’re right about it taking time to identify things yourself. It’s also tricky knowing who to share with as it makes me feel vulnerable and set apart. I am now definitely apart from my old life and very much on the outside looking in but I’m getting more used to it. At the start (for the first six years) I thought that if I just tried harder I would get my working memory back and my cognition would improve. Thought I’d be restored but it’s clear that’s not the case. I’ve always helped others so it’s a really hard thing to know how to be now and what my role is. I’m trying hard not to let it define me. It’s a day at a time I think. I’m very grateful for your reply. It just takes a while to respond and get my head around things!

I’ve gone from the fast lane to hogging the slow lane often! My journeys into the world take planning now so I’m less carefree and I find that hard.

It all takes time I guess. We’re fortunate to have good people in our lives aren’t we?

Thanks again for your reply. Wishing you well

[Oppo24 in reply to Percylovesbees]

Hi Percy

Life does indeed go on and it does get easier as you learn how to manage the 'new you' and adapt to new ways of doing things. Don't ever let it get you down.

Likewise I used to live life in the fast lane and it took some adjusting - but actually, faster is not always the best policy. Taking your time in the slow lane means you get time to appreciate things more, spend time with those you actually like and do the things you want to do in the way you want to do them.

Keep your chin up!

[Percylovesbees in reply to Oppo24]

thank you - tortoise and the hare comes to mind. I prefer going slower and being patient with others comes easy to me but that’s not so for a lot of the world 😂

It means I’m savouring the good things more and picking out what matters most or is most manageable. I’m not used to these board things but I already feel less alone. Thank you very much for your reply

🙂

[Leaf100]

Hi PercyLovesBees

It's hard to deal with the overload thing and balance anything social with it.

Have you talked to headway about it at all?

I don't really have any answers, lived with that being really bad for many years - not so bad now, still very isolated though. I never know how I'm doing so it 's hard to plan, and also my elderly parent isn't well and I want to spend as much of my capability with them, while I still can. It's really helped me understand a few things about my life and life in general I wouldn't have known otherwise. So, I am glad to be able to do it. (In due time I will have to face the task of figuring out something social... can't say I'm looking forward to it, but I do have some ideas.)

Keep us posted and pop in, don't sit out there alone...

Leaf

[Percylovesbees in reply to Leaf100]

I did have my name down for the counselling at Headway but that funding was withdrawn and therefore counselling no longer available. That was quite a let down. I had other counselling that was non specific to brain injury because of that.

Sensory overload is tricky but I’ve found loop earplugs very helpful and also planning in lots of time to get things done in a manageable way. I guess the hardest part has been trying to learn how to just be with the new brain. It’s not easy but it’s inescapable so we have to get in with it and any small victory needs celebrating x

[Oppo24 in reply to Percylovesbees]

I have found that leaving plenty of time for planning is key - you can work out what you need, when you need it by, what else you need to do etc and I always keep notes as a kind of checklist. Checking things off gives a real sense of achievement and ensures nothing forgotten. Trying to think on the hoof now I find almost impossible, as the stress causes my mind to go blank and I can't remember things.

[Percylovesbees in reply to Oppo24]

Yes slowing things down to my speed and factoring in extra time are key. Also not trying to keep up with the world out there or trying to be who I used to be have helped - trying hard to be the speed I was or the person I was held me back for six years. It’s so hard but I couldn’t achieve it. It’s calmer now and less stressful to a degree

[Oppo24 in reply to Percylovesbees]

I did the same - tried to be the person I was previously, doing what I'd done previously. Tried to keep my ABI and memory issues hidden, tried not to show stress or any effects of what I was actually going through. God knows why - once I'd accepted it and acknowledged the changes things got easier.

[Percylovesbees]

it’s really helpful to hear you did the same. It really is because at times I felt like a total failure and that I should try harder and that if I did, it would all be ok.. I think that knowing I’m not the only one who has done that is really helpful. The neurologist had said that he had never known anyone like me doing what I was doing and driving myself to distraction and depression by trying to regain my previous abilities. I had tried so hard to get back to where I was before by being determined and trying ultra hard all day and night but it just completely wore me down. I was on edge all the time and exhausted. It does help to know I’m not an anomaly and that others have done the same. Thank you so much for engaging in this chat I really appreciate it. It’s-a journey but one we didn’t chose to take. Getting better at being me now but realise it’s ongoing.

Thank you so much for your reply.

[Oppo24 in reply to Percylovesbees]

You most certainly are not an anomaly - we all cope with things differently and so coming to terms with and adapting to brain injury would be no different. Find your own path on this journey. A pleasure to chat. Stay safe

[Percylovesbees]

Just wanted to say I'm really grateful for this resource. I needed a way to be kind of sociable but with relevance in a way to my brain injury but that didn't overload me or try to speed me up because I'm so slow now and this is good. It's good to communicate and good to be heard and hopefully I may be able to help others this way. I want to help others because that's what I've always done but now I need help too it's so different to the old way of being (pre BI)

Thank you to everyone on this for sharing yourselves and your coping strategies etc. It's been hard for me to accept this BI and not try to keep fixing it. It caused depression and anxiety to a place of darkness I hope never to return to. Won't go into detail but I'm so glad to be here and wanted to thank all contributors. It's hard to share things and takes enormous effort to a lot of you (it really does for me). I've never been an open person or one who asked for help. It's been so humbling it really has

[Oppo24]

This resource is, I believe, to help us all to help each other and to help ourselves. There isn't really anywhere or anyone we can go to. Our families and friends of course help where they can but in all honesty they don't really understand - they can't because they haven't experienced it - and we don't really, either. After 20+ years I am still only just starting to understand how it has affected me.

[Percylovesbees in reply to Oppo24]

that’s helpful because I realised I need to stop putting pressure on myself. We all do it I guess. It’s honestly teaching me to not give soo much of a **** what others think about my slowness. It’s none of my business if they’re stressed by me. It is like learning how to be all over again but we’ll all get there…. Wherever there is! And we’ve done really well to keep going in spite of the challenges and I’m really starting to process that. Thank you for interacting with me. You are free to message me anytime and I’m a good listener especially as I have no working memory!!!

[Oppo24 in reply to Percylovesbees]

I'm so pleased to have been able to help in some small way and it has been a pleasure to interact. Yes, we do indeed need to be less harsh on ourselves! Initially, for maybe 10-15 years after my ABI, I tried to carry on as before, hide it, not mention it, tried to show that I was the same and found it really stressful. It was only whilst recovering from a car crash spending weeks on my back unable to do much, I finally accepted it. My son encouraged me to be less demanding of myself, to loosen up, adjust and embrace the new me. It took a while but it worked - now I am able to joke about my appalling short term memory.

Let me return the offer re messaging and likewise, my working memory is rather short 😋