Hi all, I had a TBI in December 21. It’s been a real challenge and a tough journey up until now to move on from it. Now it’s 20 months since it happened and most people around me have forgotten about it. I look normal and most of the time seem normal to everyone but on the inside I’m trying so hard to keep going. I find it so hard to know how to be.. I want to be treated as normal but then I feel so alone and that no one understands. I have left sided numbness which I manage most of the time but when I ask it to do excersise, it gets really heavy and hard to make do things. I then end up really struggling but can’t say anything because I spend my time pretending everything is ok. I went for a big walk with my grown up son yesterday and found my leg so hard to negotiate at times but couldn’t explain it to him as he thinks I’m doing fine. I don’t want to be one of those people who constantly moans about symptoms but on the other hand I feel so alone with it all. My headache is a constant thing which gets worse with any physical or mental stress. I end up struggling to form thoughts and get confused. Most of the time I can avoid situations where it gets bad but sometimes I can’t and then I feel so vulnerable and on my own. Part of me wants to fight and carry on and be normal and not let this thing get me and part of me wants to crawl in to a hole and hide and not come out ever. How do I get this balance right? This is definitely the biggest challenge so far. Do I ask for help, give up on who I have always tried to be or do I keep pushing on through and hope it gets better? Thanks for listening x
Getting on with life: Hi all, I had a TBI in... - Headway
Getting on with life
'Do I ask for help, give up on who I have always tried to be or do I keep pushing on through and hope it gets better?'
Flosmum, your words really got to me. Protecting loved ones (especially sons or daughters) from our issues is perhaps the most exhausting part of being a survivor. And 'survivor' is often the sum-total of how we're seen (awful business -but better now).
Brain injury changes how we function ; not who we are. And when our protectiveness gets in the way of honesty our true self is supressed.
I tried the 'All's well' act for a year or two after my SAH but it was unrealistic. 11 years on I guess I'm seen as a mum who tries to go the extra mile ........but mostly has to settle for the extra yard. But it works fine, and if I'm really off colour it's seen as normal under the circumstances and not a big worry.
I realize now I also had a self-esteem issue in accepting personal limitations. That's hard for all of us, but it gets easier with time and I still surprise myself with bigger achievements here & there....
'Pushing on through' with a brain injury doesn't work for most of us ; in fact it mostly results in mental/physical meltdown.
Relieve some stress by coming clean about how pushing through all these months has been exhausting and how you need to start pacing yourself realistically. Pushing here & there is good ....as is stepping back when needed.
Hope you'll find a compromise to suit you all m'love... Cat. x
Thank you .. it’s so nice to feel like someone understands. I feel like I’m in a constant battle with myself which is exhausting. You are right. I need to try and be more honest. I’ll think lots about what you’ve said, thank you xx
You need a physio to help you. They have worked wonders on me.
Very similar to me. Hardest part is accepting the changes in u, others can even accept or not. There seem no day centres any more. Was helpful to me to be surrounded by obvious disabilities. Actually volunteered there. Met and befriended many stroke sufferers, they are now my life, lost friends, husband, and parents( caters). Have 3 siblings, only one accepts me for who the new me is. Hard for them because I look like the old me, by nature very different, struggle on. SMILE helps greatly!!
Hi Flosmum, it's still quite early on for you (though you must be really fed up with that remark). please don't push through, it makes it worse. Despite masses of coaching from all the medics I saw, I never fully realised the truth of what they were saying, until we got that first lockdown and I was doing so much less than I'd been trying to do ( while I was still pushing on and not getting better...)
The rule of thumb is to only do on a good day what you would do on a bad day, jot down on a planner how many minutes you think you can do in a day, of cooking / housekeeping, reading, walking, tv watching, phone use.... whatever..it went be very much. Keep that up for a week, adjusting times as necessary if you'd over-estimated, and then increase one activity by 30 minutes (in that week, not every day!). So you have another week of only doing what you would do on a bad day plus 30 minutes activity. So if you can cope with that, and you're still fairly symptom free, try another 30 mins. Note that you are still only having as much activity each day as you would have on a bad day, plus one hour or week. Just keep going in this way slowly, If you get a setback, and your headache and fatigue is worse, then go back to the previous weeks level of activity. I know, super slow, but honestly worth it, to end up being able to do so much more in the long run. Until lockdown I never truly realised that my fatigue and headache could reduce so much when I did consistently less.
Think about communicating with your family as a mixture of being self assertive and using collaborative problem solving. If I can't work out how to cope with something, I explain what my issue is and ask them to come up with the solutions. It's quite hard to do, if you were the one who always solved all the problems, and always kept everyone else happy. Try to see it now as empowering others by giving them a hand with the problem solving process (rather than them waiting like baby birds for you to fix things for them). Also ask them to help you spot when you are getting tired, you'll find that other people notice way before you do, I didn't know how my daughter in law could always notice, until I saw myself in the mirror and realised I looked 102.....
I sympathise so much, the bout of Covid I had in July seems to have set me back fatigue-wise to where I was a couple of years ago, am now tediously trying to build myself back up again. But even now, my Mum asked me to go watch the local carnival and seemed dumbstruck when I asked how far I would have to walk and how long I would have to stand, but she did suggest the best place for me to park - so helped me plan, and then we had lunch in a cafe to refuel before I came home.
Thank you, sorry for not replying sooner xx
How are you doing at the moment? X
Not so good. I am exhausted after being social for my dads birthday on saturday. I usually dont do much other than work, its so frustrating that it affects me so much. All the things I struggle with get so much worse. Im having a day at home today. Thanks for asking. Its so hard to keep putting on a front all the time x
Must be jolly hard working and keeping up a front. Have you got any accommodations on place at work? And anything extra like social things is an extra strain, has a bit of a knock on effect on the week. Hope you can be gentle with yourself for a while x
Its part acceting that things have changed and partly taking on too much i suppose. I have been so determined to not let my head injury change me, but it has and i definitley need to get my head around it. Thanks for your message, it meant a lot x
I suppose we all got here by some sort of accident, and it's the sudden changes that are hardest to deal with and adjust to. You are still you though, and that comes over in your constructive posts on this forum. Keeping pushing back at the fatigue doesn't tend to work unfortunately. I've noticed that when I'm getting fatigued that the other weird range of BI symptoms will still get worse. I've noticed this week where I've been under much more pressure with family than usual, that going back to the old strategy of flopping down on my trusty yoga mat for between five and thirty minutes quiet with my eyes shut, still works a charm in helping me function - it's unbelievable how much actually. But if I push my luck too much, my body will catch up with me, and I'll almost just stop. Hopefully these 'crashes/ busts' stay smaller than before - but one of my consultants did warn me that burnout was a real risk, so do take care.
I think it takes a while to put your own needs first, be confident in saying what you need from others, and what things are difficult for you to do. After a long day Saturday I had to confess to my Mum and sister that I couldn't sit with them in front of the tv, as I can't actually watch all of Strictly in one go (I still have to pause it every so often). And I felt a bit self conscious having to say that - but going home at that point was the best way for me to cope.
What help and support have you had from the medics/ occupational therapy people? Might be worth talking to the Headway helpline about what further help you could access? Neuropsychologists are great people to help with practical coping strategies.
Thanks agian for your reply. I completley relate to what you said about more pressure making symptoms worse. How long ago was your injury? Its hard to speak out and say how your feeling isnt it, but i think im starting to accept that i need to. I havent had much support aprt from the OT in the first few months. She was amazing. The consultant i have now made me feel silly last time i saw her. She said that as im 46, some of my symptoms could be due to menapause! Even though all the things i told her about have been since the accident and i dont have any obvious menoupause symptoms. I felt like i couldnt really talk to her, she didnt understand and that i basically am on my own with this. I have thought about speaking to headway, but dont want t waste there time and feel silly again. The only place i get and comfort and reasurance is on here, because people understand and i can see that im not the only one going through these things. I will see if there are any neuropsycologists near me that i could see. thank you xxxx
Hello F, mine was in 2018, but not as serious as yours. I thought I was doing pretty well this year until I went down with Covid, which has been quite a setback. Everyone's trajectory is different though, I'm older, and had a previous concussion which apparently wouldn't have helped. And though I'm feeling wiped out at the moment, I did go and put up my paintings in my group exhibition this morning, so that feels good.I'm absolutely fuming (and steam coming out of my ears...) that your consultant said your symptoms could be the menopause. I think at that point you ask for a second opinion from someone specialising in post TBI treatment - not all neurologists are the same or have the same specialisms.
The Headway helpline isn't like that - it was amazing when I first rang them and finally felt like someone 'got it,' They can offer a sympathetic listening ear and practical support - they're just open in office hours. 0808 800 2244. Possibly explain where you are in your recovery and ask for what you could ask your GP for next?
It does help massively on here though, doesn't it?
Speaking out seems almost weirder to me now, as I'm sure family just forget -it's sort of an assertiveness thing, to just calmly let people know what you can't cope with, or that you will find very hard, or will need a couple of days off before and afterwards to recover from. I think possibly a neuropsychologist might be helpful in that a good one (that you get on with) will help you work out your own parameters - which will in turn perhaps make it easier to explain them to other people? They can offer a battery of tests that show up what particular things you find difficult now, which perhaps gives some validation as to how you feel too.
Take care xxx
Thank you for making me feel less alone. Im going to ring headway and see if that helps a little. Hope you are doing ok and that your exhibition is a success. xxx
I understand everything you are ‘complaining’ about. It’s so hard to push through at time when all you are doing is keeping up a facade to get through each day. It does get better! I’d have never believed that but this year I started thinking it a little. 🙌🏻
Keep on keeping on! We are here to listen when you feel overwhelmed. 😊
Just make sure to learn your own limits and not push too hard. That often is the hardest part when others expect so much from us!
Thank you x
Hi
I understand those feelings too! It seems in the beginning all I could do was try to be “me” push through and relearn how to do tasks.
Now I can see other people’s reactions to me and that is hard. It has triggered a process of acceptance and honesty with myself.
Something practical, is to make a list of your day and grade it .. red, yellow, green. Then you can prepare for the Red times. (I did not realise how exhausted I got by social encounters). I thought it was the physical activities that drained my battery but trying to concentrate and interact socially is hard work! I allow myself quiet time before and after this type of activity whereas before I pushed until collapse.
I talk now about my battery and how I don’t know how charged it will be every day. I also give myself days off from seeing anyone other than my husband.
I really struggle with “ letting my grown up children down” but five years in, they get it and allowing them to respond and help is still hard but we’re all growing together.
Good luck
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