Living along with a TBI

[Ideogram]

Hi all. Anyone in this situation - how do you deal with it?

Three months into TBI and maybe making some minor progress (very hard to tell) but a long way to go yet.

The thing I'm really struggling with is isolation. I can normally get through the week, but weekends are the crux - I've had one *wonderful* friend who comes and hangs out and takes me for walks, but when he's not here, I'm feeling pretty stuck, and it's really bringing back all the depression of living alone and working from home during lockdown, which got me really low at the time.

Main issue is that what helps me is being able to walk in the countryside (even tiny walks) - that's why I moved here - but I can't drive, and the local friends I used to hike and climb with mostly don't seem to have any interest in meeting up (I guess I can't do anything fun enough to spend rare free time on) - or they suggest counselling, which isn't really the point - anyone on their own for days on end would get a bit down!! Family are good but 4-5 hours away on the train.

Trying not to spend money unnecessarily as I don't know when the sick pay will run out, and public transport here only really takes me to shops and cafes. I can walk round the block locally, but it's company I really need.

This weekend I would have been going on a wonderful holiday (which I didn't get my money back from, gr) so I'm feeling it particularly keenly.

How do you get through it?

Cheers.

[Ideogram]

* this should obviously say 'alone'!

[Trevor78]

I'm 40 years on from yourself but feel the same even though I worked full time up until 2021 when I was able to retire early. I spent a lifetime fighting tbi effects and avoiding people and situations. I never felt that anyone really understood enough to offer the advice/help that would make that daily difference that I needed. I got through it just living day to day but even that's getting tough now! You've got time to heal and turn it around. Try not to avoid people and situations in the best way that you can would be my advice.

[Ideogram in reply to Trevor78]

Thanks. I'm not really avoiding them that much so much as not that many people want to hang out with someone in this state.

I will go back to work when I can, but sadly horribly bright lighting in the office (with no off switch!) means I'm going to have to work from home for the foreseeable.

Thanks though

[Trevor78]

Yes people drifting away is a problem.

That is a reasonable adjustments office situation if you want to go in to the office. If you can see a solution that you think that your employer could make/afford then you could ask for it?

You might be happy to work from home. I had reasonable adjustments when working in terms of light, noise,distractions etc, as well as a flexible working home agreement. I was blessed in that respect! We were just about to move offices again when I left work. I couldn't be bothered to fight my corner yet again!

[Leaf100]

Hi IdeogramYes, it is hard.

We find people who were activity buddies vanish when we aren't doing the activity anymore.

Ansld as time goes by it can be hard to know what to talk to people about when you've not been doing much.

If you can pull off working from home that is really worth doing.

Otherwise it is one day at a time.

You can also ask Headway if they have any programs on zoom, or perhaps some peer support.

As the healing happens we will do what we can socially and it goes how it goes. I think isolation is quiet common.

And hard not to compare with what we would have been doing.

Keep us posted.

Leaf

[Tezzie29]

hi Ideogram. Sounds very familiar having loads of free time. I guess I was lucky that I had a reasonable fit background and started running/jogging. Really helps kill time. Get an audio book or music. I can spend up to 7h 45mins running the equivalent of Ben Nevis over 42.2km. Maybe don’t start trying to do that but if your after company try joining running/rambling club. Hope this help.

[Charente]

totally understand where you’re coming from re isolation, we ve found on local fb that headway does special inclusive local walks , also there’s a walking group locally ‘ Valeways ‘ their president is Derek Brockway Weather man walking and they do special walks for people with mobility problems called ‘ strollers’ . Pembrokeshire also do walks for people with disabilities and have transport. search or ask on local fb hubs what’s about.

Hope that helps, not easy … good luck

[lcd8]

Hi there. I don't really have much to add that the wise people above have not already mentioned. But I do think isolation is an issue for many of us. I have been working from home since Covid hit too but use resources such as Microsoft Teams to talk to colleagues, some of whom are in different parts of the country anyway. Pets can help also (I talk to mine). And if you have a dog and need to take it out you often find that you see other regular dog-walkers who will stop for a chat. Good luck.

[Trevor78 in reply to lcd8]

I worked at home 2020/21 before early retiring at the end of 2022. I thought that the lack of contacts and daily structure would have and effect but I didn't realise how much over time. I too had a dog that filled much of the isolation void but I lost him Aug in 2023 and after a rough 6 months it's hitting home now more than ever. I often only got washed and dressed because I had to take the lad out. And now, as has been the case for 45 years, I know all the answers regarding how to improve my life but the confidence, self esteem and motivation switch in my brain got disengaged during my tbi and my default setting has always been to do nothing, avoid unknown situations/people and suffer. No doctors or psychologists have ever been able to reset that switch or grasp that I can't cope with their standard solutions to such mental issues - sorry for the rant. It might mean something to someone, but I feel better for saying it.

[Ideogram in reply to Trevor78]

Thank you for being honest. Tbh I know it's very well meant but it's the genuine experiences of people also in this situation that I was really after. I'm sorry you're in this situation, but appreciate you being upfront about what it's really like. Putting on a front gets exhausting eh.

[Jodac8]

Hi ,when you say that you dont want to spend your sick pay unnecessarily have you not applied for PIP because with a brain injury you're entitled to it that might give you a little extra to do things good luck

[Ideogram in reply to Jodac8]

I don't think PIP applies when just 3 months in I'm afraid, but thank you.

[Ideogram in reply to Ideogram]

Should say I'm not struggling, but I don't want to spend all my money on shopping and cafes to fill the time!

[Jodac8 in reply to Ideogram]

I applied after 3 months simply because with a brain injury its going to last a lifetime it's about making it as easy as possible and I too was determined to continue my lifestyle as best I could and that was living on my own, sorry I didn't mean to suggest you were struggling to me pip is there to help me compromise when I need to,good luck with your journey

[Ideogram in reply to Jodac8]

Oh no you didn't! Thank you

[Jodac8 in reply to Ideogram]

Your welcome ,I've managed to do it I had my accident at 59 and was determined to be able to still live on my own and make the best of my 2nd chance at life,the first year really had its ups and downs friends dont understand the different you only you do but now 5 years on life is good,good luck on your journey

[sashaming1]

It may help if you connected with a local church to meet some people. Or, maybe there is a local city program that would be helpful.

[Painting-girl]

Hi Ideogram, see if you can track down some local walking groups - I see there's one advertised in my GP's surgery. Plus this is the sort of thing advertised in my local library - who also run social drop in sessions, as do some local churches. Plus check out your local community centre for day time classes for exercise or mindfulness. Your local council website might have something useful too. Anything you can do to meet people casually helps I think, even if the people you meet are older than your usual crowd. I got quite good on my local buses early on, even if I needed a large pad of paper and some dedicated time with Google maps to plan for the following day.

( Don't forget to claim statutory sick pay too).

[westbury200]

Hi

I'm two years into my TBI. Sorry to say I'm still where you are. Isolated at home, can no longer work or drive. Don't see my 'so called friends' any more. Have mobility problems so can't go for walks or do any of the things I used to do. I don;t know what the answer is but you just have to keep going and hope that things will get better.

[Ideogram in reply to westbury200]

I'm sorry to hear that. Sounds ruddy tough.

[Steveau]

I’m 20 years with my TBI.

Another post with lots of replies that are all filled with similar experiences.

Even having stayed married , the isolation is still there. I think it can’t be avoided.

Much of the effects of TBI are for life and recovery is not going to arrive ever.

If I knew people like me nearby I’d make an effort to hang out and do stuff with them. It could be the best therapy…..