Do you feel isolated as a result of your brain inj... - Headway
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Probably very difficult not to, folks drift away.
have you found they more disappear do you think they are nervous you might be in trouble mentally
It’s very physical for me half my scull has been removed and people actually wince if they see it
Loss of professional contacts, loss of status, reduction in social opportunities, lack of social care, just being a new version of what was, judgement by others without understanding, stereotyping, there are so many reasons I can understand that have lead to isolation.
I have been so badly isolated for five years now that it has a negative impact on my quality of life. My fatigue, both cognitive and physical, makes it hard for me to socialise at all, plus sensory overload stops me from being in groups of people and I have mobility issues. Telephone calls exhaust me and I can't do Zoom or social media.
Thank goodness for HU, although cognitive fatigue can keep me off this too at times.
My local Headway group has been my only contact with other people for several years. I don't know what I would do without it.
I am currently trying out a local wellbeing group that meets in a woodland setting, as being outdoors seems to help with the sensory overload issues.
Big socially distanced hugs to everyone who is isolated. 😊🌸
Because of speech difficulties I screen and prepare the social environment as much as I can as also have startle reflex. Today and yesterday tried to see GP and told would get call back after 2 days of trying after 2 years of putting it off ended up bursting into tears 😭 sometimes it’s all too much. I had a great job before TBI now medically retired ... it’s tough for us all and big love to all of us x
I don't think it's as simple as yes or no. Yes, there have been times when I've felt isolated, but to be honest, I think I've just become so used to my own company over two decades, that I no longer *feel* it as isolation; it's just become my new normal, I guess. And, of course, Covid has done nothing but compound the situation...
Whenever alone i get slow and sad and I am prevented from ongoing access to or help from social services and my health and wellbeing coach.social services have already denied me help and access to a support worker
This was more initially due to illness. Now it is less but Covid hasn’t helped although my lack of independence is also a factor.
That it happened during the pandemic and associated lockdown doesn't help!
Although I am very grateful for the ongoing support from health professionals, the side-effects from medication are not pleasant, e.g. not hearing, talking or walking properly. This can make me feel embarrassed. I then either have to reduce the medication or try another one. It seems to be a constant battle to control my seizures. I find being physically and mentally active beneficial. I have joined groups, like keep fit, table tennis, etc., although these are not operating due to Covid. I am lucky enough to work a few hours a day, allowing me to meet others and socialise. At first I used to be frightened to go out on my own, but realised I need to live.
trying new medications for sleep and headaches has been a nightmare! You try a new one with high hopes, then you get a bunch of side effects.. then withdrawal symptoms.. it’s difficult to see the light at the end of the tunnel sometimes. I’ve been on a new medication for 3 weeks now… I have some hope, though I have to take antihistamines because it makes me itchy
Yes very much so..I expected a follow up from my go.. even a phone call ..nothing considering I'm a carer for an elderly mum and have blood cancer as Well..nothing..I get medication by an automated message and it gets delivered. I've heard from.my Haemotologist regarding my chemo medication but no one else. Very disappointed..feel let down and sad
This is a more difficult question than I first imagined as I could say yes I have been isolated because I lost friends, work and so on and so on but that would not be the true cause of my isolation, I am. Since my accident I find it necessary to isolate myself from people on occasion, far away in the countryside if possible, walking and cycling as this recharges me. One positive following my injury, and there are positives, is that I see things differently nowadays, instead of just enjoying the beauty of nature and fresh air I now feel revived by it. Sometimes, I need to be alone, even if I am doing nothing and I don't really see that as isolation as that word conjures negative impressions and there is nothing negative about my time alone.
Life definatley changes after suffering an ABI.. for many reasons.. I don't feel safe going out alone, I have now become a little bit of a recluse
I understand and I have overcome much of this by adjusting my attitude and 'feeling the fear and doing it ANYWAY! I am new to post, but a brain injury survivor since 1969 motor Vehicle head on with my 1965 Austin 1800 and an American sedan. I have many happy memories of overcoming fears. I also enjoy my own company 😷
It affects the carer as well
Husband sustained TBI in first pandemic March 2020, I got him home after 16 days from life support due to poor care, safety aspects, 14months later absent brain injury team, meeting last week hes not at stage for brain injury occupational therapist hes too unsafe to access community with professional. Yet I have no family, no friends 3 year old and 15 year old just managing 30mins going out. Were only 38 and 42. I've only just reached out to my local Headway this week because were beyond isolated.
I live in Supported Living and therefore have Staff visit me regularly, I am also quite 'close' to my Mother and see her a few times a week. I haven't yet been back, to 'my' Headway, or indeed, any of the Other activities that I used to do- pre Pandemic.
So NO not 'alone', as such, but certainly Not as 'engaged' as I used to be. I've cooked some Interesting Meals, many shared with my Neighbour. I have also been to the local Pub- Very Covid Aware- for a few meals out. Later this year, or maybe next, We- ALL of us that live in our Flats- ARE going out.... on Mass, well ok maybe fifteen of us!
Mind you it IS a 'Good time' to Catch up With, all those Recording you made- that Book you wanted to read- that Recipe you wanted to try- that Puzzle you were given- the Art Set you Bought (at a house clearance).... even that Decorating you promised to do! (you might even have the time to 'Look' at Brian's bicycle.... steady on....)
Alternatively, you ca always 'talk' to your Friends on here.
AndrewT
Self inflicted isolation following behavioural issues following my TBI which I was constantly being told about
Yes! Nobody understands me now, as hard as they try to they just don’t. I want to join in with people doing things, but I have zero energy so I can’t 😥
I feel the same ! Noone gets it except if you have it .Your whole being is changed its so hard isn't it .
Where I live there are no support groups ,I feel really lonely at times even when I have people around me .
yes! I feel like a lot of the time I pretend feeling better than I actually do when I’m with other people
this question is not a Yes/NO/Unsure answer, I would like to see a further answer included which would be sometimes
Yes I am isolated most of the day. I don't have 'social filters' so I say and do silly things, so yeah people drift away or I tell them to drift away.
I have always been content with my own company, and as time has gone on and I have become more aware I understand and see the impact of isolation more. I do go to groups but also find I have trouble relating to people there for various reasons. Because I have a great deal of difficulty physically going out due to overstimularion and my brain not processing space easily, I find even when they group gels, they tend to go fo coffee etc after and since I can not go I end up being left behind...again.I also have found that a lot of the support services available to me are on walk in , over the phone, or zoom - but do not provide any help in the home. It has its benefits but also means I see very few people in person, especially since Covid.
As t9me has gone by I feel I am losing, have lost, my ability to make friends or have any confidence in my social skills, or being completely candid...believing anyone would actually want to socialize with me.
Feel painfully alone right now.
Most certainly & I've been one of the lucky ones. I had my severe injury in my late teens and that virtually made the previous 18 years personal development pretty academic going forward from my perspective. I eventually got a job after a decade (not my chosen profession), lived from day to day, avoided much & couldn't be the person that I wanted to be due to my residual physical & mental disabilities. I started at the bottom and stayed there which wasn't the real me. I relied on my late parents and lot and their circle of friends rather than making my own life (which I'm not sure that I could have done & coped with anyway?). Now after another 3 decades I'm retiring early, alone and pretty isolated. I should be happy but it's not a particularly nice prospect at the moment and I don't feel that physically or mentally I can do too much about it.
I feel isolated at times. I'm a full.time carer for my elderly mum.and I.have blood cancer . Sometimes you just want someone to knock.on the door and say I'm.here to help ..but there's nothing . It's a battle some times.... my dog keeps me sane I talk to him.alot ..I.never thought I'd end up.like this I had plans to travel ..it's frustrating but I have no choice..my.outlet is yoga and Pilates classes at the gym...and gardening .
isolated is useually an understatemnt for how most are treated. Ive been stuck out the way, on my own in a rodent infested crap shack for 2 decades, with about the same medical aid as A medieval badger. Breaks, fractures ignored and weigh leighed until too late, other debilitating illness shrugged and fobbed off. people regergetating .gov decisions to blame things on those with mental health (like we dont know whos useing that money to buy another yaught). while meantal health doesnt seem to have much info about brain damage or the unique way it affects people (as each cause is different obviously so is the effect in something as complex as the human brain) this is answered with words to the effect of muh! I have found that rebiulding is the only worth while way to invest time, consequently creative writing, solving problems, drawing, music and wherever possible Doing as much as I can to reignite, not just synapses but for pressious possitive motavation. breakdowns are as common place as inebriated people slipping on ice. this and other treatment has had me living in this medieval exile since i was late teen, that was over twenty years ago! Since C - virus I am homeless and underfoot of friends and family. on the bright side my graph of decline can be illustraighted with a water slide 
weeee!
yes, of course. To the point of utter despair and misery.
100 % it's soul destroying
People are so complicated and hassle
give u all a laugh! Some 20 years on, having redefined the new me, saw a psychiatrist today who sent me for another brain scan. The scan shows how severely I injured the grey matter! In a panic over the results needs to review it with another doctor, may need to do another, this time with dye to show how bad it is, able to present as normal?!!! We’re told any improvements would be 3 years there after, still useless in so many ways but can waffle words I ain’t used in years!!! Never give up hope!!!🐸
Very isolated as difficult for other people to understand. I have felt better reading comments from like minded people on this forum.
it has led me to a very dark place once and life is hard. Have to try and remember the good stuff so I can fight it and try to organise self but that’s really difficult to do. People misinterpret what I’m saying often or what I mean. I get very depressed often and feel alone even tho I’m not. Fatigue is overwhelming
same here, good news is as u adapt y personality, hone the NEW you?! It does get better, meet new friends, coming to terms is the hardest lesson, once y done it does get easier. Y obviously need to earn more brownie points befor y rattle the pearly gates again???? See, was that a little wee smirk?!! Just SMILE to spite it!!! Works for me! & I haven’t been dragged away by the men I. White coats yet?!! Well, the other ones , without stethoscopes?! That is!!.. saw the corner of y lip twitch just then!! Waffle soon& SMILES!!
Answered no at first then changed to unsure as I have good and bad days but happy to spend time alone as it’s less stressful!
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