Looking for people who related

Something I’ve found through this whole journey, is that having a brain injury is really isolating, my friends are out doing things and i desperately want to go but I can’t. I’m just always too tired to participate in anything. Nobody can help make me feel included because I’m just too exhausted to do anything 75% of the time. So I’m looking for some support on here, reading other people’s posts who are in a similar situation or even being in contact with people who have brain injuries, please reach out if you feel the same.

[Astley10]

Yea a know where your coming from, before my injury I was always on my feet I used to box and trained people had my own business worked from an Early age through being a paper boy and milk boy when a was at school then it all came crashing down.a feel your pain it seems as if the world 🌎 is moving on and you feel like your stuck in the same place ,everyone seems to get on with life going places doing things seeing 👀 the world and you don't its frustrating feels like your wasting the life you have. I have good friends that I keep in contact nearly every day which is some solace but it's hard.your not alone

[Dogsabighelp]

isnt it the saddest thing though?at first all asking etc then slowly slowly they move away.until you find nothing.o.its not you love people are what they are all have lives to get on with they can get on and fair play to them.i had recently a partner of a childhood pal of my son asking me to not give updates because he "gets upset".she said was planning a surprise birthday trip(responsible?)i did correct thing and deleted all contact.i know what it is to be alone beleive me im doing it,better this way i think?no one here will hurt or shame you and you will never lack support or friendship my best wishes to youxx

[JoannaHelen]

Hi Ourlar,

I had a SAH in 2020 and have another Aneurysm hopefully that is never going to rupture like the last one did?

Anyway, I can relate to you as I went out to visit a friend wjich before BI we woukd be up all night chatting/drinking/dancing etc, I lasted 2 hours in a pretty alert communicative state and the next 2 yawning and dreaming of being on my own at home with no noise in my bed.

I had to leave, fatigue won again, didn't even stay for dinner that we had planned.

On a positive note, she said to me "we are friends we can adapt (I wish my employers were as understanding as this!)

[Leaf100]

Hi OurlarI can relate as I had a busy full time job that required overtime, plus I liked to travel and went dancing a lot.

After injury I couldn't even take out the garbage or open a tin without an electric can opener... had tremors, could not walk well , or speak well, had the usual super sensitivity to light and sound... etc - someone said I looked like a crab when I walked.

Tremors really tend to put people off, I have noticed.

Anyway some years later I have recovered enough to pass for normal more often, but do not have the energy levels and am still limited as to locations that are ok.

Some people were around a bit til they figured out I wasn't improving. One ended up accusing me of something I did not do , to justify leaving , it was quite a bizarre experience. Then others kind of drift off cause you can not do what they are interested in.

Then you try sometimes and it is so unpleasant it turns almost into a sort of aversion therapy experience.

It is hard, but take it slow.

Trying to rebuild some kind of social life is really tough.

I found having pen pals really helps ,though of course not the same as being physically present with people - but you can write when you are up to it, and snail mail slows down the pace...

Just be careful on pen pal sites as there are a lot of scammers out there... the one that is the most scammer free is called globalpenfriends - they do have a free option. They give you 1 credit in 12 hours to use to contact a person you pick - this seems slow but it is enough -and it tends to stop scammers because they are not typically that patient. (Just watch out for the ones that are in love with your photo instantly, do not really answer your questions, etc. If not sure get them to send a photo of themselves with a recent newspaper, that usually sends them packing because they can't do it.) Anyway there are a lot of really nice people on there. (you can say if you want snail mail or an email buddy).

I do not typically talk about the disability with penpals, I just share my life and mostly that seems to work. I think if you say in your profile you are disabled people are afraid you are a scammer.

The other thing is to look for local support groups or programs. Some are on zoom these days. It is a way of hanging out with people who have the same disability so tend to be more understanding. Like there is a society here that has an art group and a music group and a few other things... was online due to Covid. I haven't tried those yet as getting into the building where they are is a nightmare for me, but I have talked to people who really like them. Maybe one day. So give Headway a call if there is one in your area and see what there might be, or a local brain injury society , (which is what there is where I live - no Headway).

There is also a postcard thing where people send each other a postcard now and then - so no pressure to write much. Some people get the ones you need to colour and so colour them and send them. I know this is a thing but do not have a site reference for it.

Then of course, there is posting here.

Only other idea I have is planning well, resting up ahead of time and then inviting maybe one or two people to do something with you at a place you have checked out ahead of time so you know it is ok for you.

[Hidden in reply to Leaf100]

Thank you so much for your advice!