What makes you feel anxious, and how do you cope? - sharing your examples

[headwayuk]

Hi everyone,

Happy new year!

Our brilliant Research and Publications Manager is working on a new factsheet and would really welcome your support:

Living with a brain injury can often make people feel anxious, for many different reasons, including carers. Do you feel anxious after a brain injury? What makes you feel anxious, and how do you cope? Share your thoughts below to help us with writing a new factsheet on this topic!

If you would like to contribute please add in the comments below, although please don't feel that you have to.

Thanks so much

Gemma

[Meneage]

For me long waiting times for expert input. I have a need to understand what is happening and what I should do and should not do to aid my recovery. I don’t want to be told many months down the road that I could have been doing something to aid my recovery.

[lcd8]

I get anxious in any situation where I have to 'present' myself to someone. This includes just talking to someone such as a doctor or consultant. I have a fear of not getting my points over or missing something vital out. It gets even worse when more people are listening as I hate being the centre of attention.

[Oppo24]

What makes me feel anxious is when needing to remember things. For example taking part in meetings - I can cope better with online meetings as I read notes from the las5 meeting beforehand and have all notes etc open on screen to refer to and can take 5 when needed. I try to avoid in person meetings now as I don’t have that ability. I forget people’s names and forget what we discussed last time so even social meetings can be anxious.

[Beachlovingkiwi]

yes I used to be very articulate when it came to work and could always recall facts and reasons for doing things a certain way etc - I now struggle with recall and fumble over why etc when I’m on the spot conversations or interactions. I’m not an anxious person and I generally just get on with it - doesn’t seem to make me feel anxious that I’m like this now - I tend to just beat myself up later when I remember things I could have said 😬

At first after accidents ACC here in NZ did at times cause me stress as I felt I wasn’t believed or heard for a while there when all I really needed was help - I guess this made me anxious as I just wanted to get better.

[Morinagirl]

Calling people on the phone especially if they dont understand me or the automated stuff doesn't recognize me as a voice. Too many people in any situation. Too much information being thrown at me. Post is an issue, I always adressed things immediately pre tbi, now I pile it up

[cat3]

Walking makes me anxious (& sad) since my mobility is erratic owing to poor balance. I often stagger and veer from one side of a pavement to the other which I fear gives the appearance of drunkenness (haven't touched alcohol in 11 years) and no amount of ENT treatment has helped.

And the loss of my once excellent memory is a really big deal. Keeping abreast of appointments, birthdays etc., and locating belongings is a daily chore with even reminders & alerts getting lost in the mental chaos. Worse still is missing out on conversation since word-finding became akin to finding needles in haystacks.

My solace is my family and my garden. My son & daughter accept me unreservedly and my garden cares not whether I wobble or can't find the right words ! And Headway is my daily fix of sanity...

[Nemo24]

Anxiety triggers with trying to maintain a job. Need to work to pay bills and trying my best to return to level of previous attainment. Early days in my recovery so trying to get head around my new me and how life has changed.

Had a trigger Christmas day when sat eating lunch and family were talking about a day out we had had about 6 years ago. I couldn't remember it and was wracking my brain to recall it. So distressing as it would have been a fun day out with young nice and nephew. Something else to add to list to get a strategy to help manage.

[skydivesurvivor]

hi, in counciling at moment, some 22 years since my tbi. Lost mum in march. She was my carer. Had dementia/ alzimers & I became hers!! Bro lived next door but having recently lost his wife, was of little help understandable. 3 siblings fighting over mums inheritance. Causing much stress, glad of my brain injury?!!! Forget reason for stress within minuets!!! See there is a good side to tbi!!

[Trevor78]

When reality sets in that you'll never get back to where you want to be and/or who you wanted to be. That was about 12 years for me because I returned to new work (not my previous work or something that I was keen on) after 10 years but I was still struggling in many respects, and it was then that the reality of my new situation really set in. I coped by means of work & social situation avoidance & free time alcohol use at home (didn't need much at all to have a total calming/sleep effect) to dull the pain of my situation. I did that for approx 20 years until I got a really bad stomach and I also couldn't risk falling over any more. I stopped alcohol immediately & have only had 2 Xmas glasses of wine in the last 10 years. I used minimal amounts of tranquillizer during the period if encountering new or stressful situations that were overwhelming me. I'm now economically inactive awaiting my pension in a few years and that strategy hasn't left me in a very good place mentally or emotionally but being able to work for 30+ years has taken care of the material side of life. It's a lonely existence now but I am able to do as much or as little as I want without any pressure so it's about coping with boredom now at the expense of anxiety, although health anxiety with age is an unpleasant add on these days.

[Smilerdi]

having to undergo constant PIP reviews make me anxious. it’s a permanent brain injury I have. Yet every 4years I feel like I’m being cross examined . And made to feel like I’m a fraud. I have to dig out all the old evidence of my injury even tho they have been given it Already. The whole process of having it rejected, then an appeal, rejected a 2nd time and a further Appeal Then 3rd time approved can take the best part of a year.my short term memory no longer works. It takes an awful lot of concentration and brain power to prepare all the papers all over again and I find this one of the most stressful experiences and I dread it every 4 years 😬😩. I do have some health care team members who help me with this overwhelming task but it still gives me sleepless nights and increases my mental fatigue significantly for that whole period it’s under review and hanging over me. I really appreciate Headway for all the hard work they have recently done to Help the DWP staff be better trained deal with us and I hope this next review will not be as previously traumatic ,‘so I will keep you posted😗. The only way I cope is knowing i have helpers to support me and I’m not on my own. But it’s still very scary that the DWP organisation who are supported to be the org supporting you and your disability are commonly the ones causing unnecessary stress and anxiety. Many thanks for your great support to this cause👍

[Trevor78 in reply to Smilerdi]

That was a big reason that I didn't transition to PIP. Completing the forms once (which I did without posting) was bad enough, but to have to do it again in a few years despite a stable but disabling head injury of 40 years was just too much to deal with. I'd had one DLA review in 20 years and that was enough.

[RogerCMerriman]

I appear to be more generally anxious sometimes about nothing, sometimes for legitimate reasons.

For going out/balance type stuff I’m able to use the physios advice and not let the vertigo run away to a panic attack, just because the world is spinning/overwhelming.

This said I also use the physios advice and be kind to myself so will say no to certain things as it’s just too much effort and will hurt for too many days to be worth it.