How I'm feeling last thing tonight - can anyone re... - Headway

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How I'm feeling last thing tonight - can anyone relate?

saville75 profile image
18 Replies

OK. This is one of those last thing at night things. I don't think I'm exaggerating here, the way that can sometimes happen at night.

It's been 13 years since my severe TBI and I've been trying to rebuild my life ever since. I lost my career, the relationship with my sister and some friends too. I feel like I've been trying really hard to reinvent myself. Find a new identity. Find a new me. But I feel low and have been for a while now, despite the fact that I'm on antidepressants. I put on a face so as not to make people worry - my mum being a perfect example. Sometimes though I need to let it out. Why. Why the hell has this happened to me? Sorry. I was just wondering, is there anyone out there who can relate to this? X

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Painting-girl profile image
Painting-girl

Yes, in a word.

Sorry you're low Lucy. It sucks.

I think it's probably normal not to let on to our families how bad things get sometimes. Though to be fair, I'm guessing your mother probably does notice if things aren't great for you, even if you think you're doing a great cover up job. What happens if you tell her?

Are you getting any talking therapy along with the antidepressants -I think you were? It's easier to sound off to someone outside your own circle - less fear of hurting or burdening someone I think. Is it useful for you - have you got the right 'voice' to help you?

Is it a new identity, or more finding a way of living that provides sufficient mental challenge or emotional reward, and social contact, to keep us functioning? I sort of dread getting older and still having to hack this. It's hard when you have a youngster too, because with the best will in the world their needs will take priority, and it's hard to find a chunk of life for yourself.

Losing a work environment that provided all that is pretty tough.

With fatigue constantly hanging over our collective shoulder, we need to prioritise like crazy and clarify exactly what has meaning for us in the here and now, but it's easier said than done. I'm trying to find a balance to look after myself and not get horribly fatigued and feeling ill all the time, and still do things that give me pleasure. bit of a work in progress to say the least - and keeping the motivation going to handle everything day to day is challenging. I don't think it's very easy coming out of lockdown into more normal times either- I think a pared down lockdown life was easier to handle.

Virtual hug from me

Jen x

saville75 profile image
saville75 in reply to Painting-girl

Thanks Jen. Yes, I try not to tell my close family - husband and parents - how bad it gets. That's mainly because I feel I've put them through so much by it happening in the first place. Yeah I know, I didn't choose to have a TBI, far from it, I just feel reallu to blame. Despite the fact that I say that to them and they tell me I'm being just plain stupid. My Mum is a sensitive soul. It's best not to talk about my TBI at all as she finds it so upsetting. If I tell her then she insists that I'm all better, there's no difference in me since it and that everything is wonderful and fantastic. Which makes me feel uncomfortable because it's wrong. I am different.

Yep I'm getting talking therapy by a lady who specialises in TBI and she's great to talk to. It's good to sound off to someone who won't feel put upon and can suggest useful actions.

Ah no it's not new identity, it's managing to get enough emotional reward, social contact and challenge in life. And thinking about it I'm not getting enough of any of those things just now. Talking of my youngster, he started school a few weeks ago which has produced a change in his routine as well as mine. Actually, could that change be fuelling this low I currently feel, yes maybe. I walk him to and from school which takes an hour each day and it shortens the day. That means that the painting which I usually do while he's away, has decreased. That's frustrating as I'm doing a commission just now that I kind of need to hurry with. So a bit stressful.

I need to prioritise like mad too. Do only the essential things. Try to get some good feelings as well as the normal every day stresses...

Thanks again,

L x

Painting-girl profile image
Painting-girl in reply to saville75

Oh very difficult if your mother can't acknowledge it, I think that strikes quite hard at us, at some basic level. Mine doesn't either all the time, she pretty much ignores it - and she's pretty demanding these days

I think it is quite hard when a child starts school, I suppose it's one of those milestone things. I remember being traumatised enough when mine started, to sit on the sofa with our dog and demolish a whole pack of chocolate biscuits that morning. The short days are tricky to get used to certainly. I've actually got to face up to those again as apparently I'm in the frame to pick up my granddaughter from school when she starts next year. I'm wondering how my stamina will hold up, and how I'll feel about foreshortened days again - but weighing that against more time with her. Plus I assume I'll make some school gate friends, which would be good.

Great that you have a commission - so good that you have your art. Don't forget to be very proud of what you have achieved.

J x

Painny profile image
Painny

I tick all the boxes in your post. So you are not alone. I genuinely feel for what you are going through, not easy at all.

I have become a loner because of the conditions I carry over my shoulder and goodness me…it is not one or two but plenty.

Lots of hugs 🤗

saville75 profile image
saville75 in reply to Painny

Thanks Painny, it is good to know that I'm not alone - that means a lot. Sorry for what you must sling over your shoulder and walk around your life with X

Hopefull22 profile image
Hopefull22

Saville75. Firstly can I say it’s great you have been trying to rebuild your life. Also that you’ve been trying to spare your mum pain, although as others have said she will have noticed you’ve been struggling. It is a positive things that you yourself are able to control things.

As others have suggested having a person out with your family to talk to and vent your true feelings.

Hopefully they can help you see the road clear. You seem to want to have a purpose for your future. That is to be commended.

Just wish my son would have your attitude. His life is all about what he can no longer do and what he’s lost.

Loosing his career but mainly loosing his ability to read. He was always a high achiever and like most 32yr olds extremely independent.

He blames us his parents for his accident. He could do a lot more for himself.

Personally if I wasnt his mother I’d walk away. I’ve had enough of his moods angry out bursts. Going over the same ground day in day out.

TBI happened March 2020.

You’ve given me some hope that he could see a brighter future.

I wish you well in you bright future. Thank you even in your situation you, you’ve given hope to the weary.

Leaf100 profile image
Leaf100 in reply to Hopefull22

Hi Hopefull22,Just a quick comment to let you know that many people with brain injuries tend to be quite angry and irritable the first while, and 1 1/2 years is still the first while. He may settle yet.

Do make sure you reach out to Headway for your own needs as well, there are programs and resources for family as well.

Take care of you, too.

Leaf

saville75 profile image
saville75 in reply to Hopefull22

Thanks for that Hopefull22. To be honest I *do* spend a lot of my time yearning for what I've lost, though less so as the time has gone on. I'll also say - I had some anger issues too, not long after my TBI, so I'm hoping that your son may mellow in that respect as he progresses X

Nafnaf87 profile image
Nafnaf87

Scary isn't it. After 23 years they've sent me a capability for work questionnaire and I'm supposed to be able to fill it in! Doctor said to me yesterday here's the telephone number to get social worker help and I'm supposed to call it and get the help. I am completely lost, dumped by family and friends with no idea where to go next.

All I can suggest is keep your bottle and keep stumbling on.

saville75 profile image
saville75 in reply to Nafnaf87

So so sorry to hear that Nafnaf87. All I can suggest is right back at you - keep your bottle and keep stumbling on too. I have found it's really hard to get any help out there X

Pairofboots profile image
Pairofboots

Hi saville. Yes, I understand the attempt to rebuild, to discover the different you, and the lows.

I have given up trying to share how I feel to others, they don't really want to know, and if they do, they have little chance of real understanding. The GP probably has a better idea of how I am, than anyone that is close, not that I have people queuing at the door.

Night's are hard, something about the darkness. There is a certain light that triggers the not so positive thoughts to build, and sleep is so far off. It's not like the mid day fatigue that can arrive at anytime, and sometimes multiple times in one day.

People say to counter this is to get out in the early sun to top up your melatonin and vitamin D. I don't know about you but the early sun, is a bit too early for me.

In the past, I'd hold on to the negative thoughts, meds helped tip the balance, but it was also acknowledging that these are just negative thoughts, and in the morning they will evaporate. It doesn't stop them returning, but I now know that they don't matter to me.

We can work too hard at reinventing, the fact is we are, as we were before, just different. Why, there is no answer. Not having an answer used to wind me up, so I give myself an answer, doesn't matter if it is right or wrong. In the absence of a definitive answer, it is good to kid a kidder. My reason is, because I am stronger than someone else, and the fact it isn't easy, just makes me all the stronger.

I have had the proverbial kicking of late, and the thoughts are all consuming if I let them take over.

If you find that you are staying in that dark place too much, please have a chat with your GP, there are numerous thing that can make the thoughts intrusive. Have a chat with Headway. Keep chatting here.

Best wishes 🍀

saville75 profile image
saville75 in reply to Pairofboots

It's great to hear from you Pairofboots and it's very interesting words that you speak. You're so so right about those negative thoughts in the night that evaporate in the morning. It is such a relief when they do so, it really is. i know that we're meant to get sun whether it's early in the day or not, but I'm a sitter insider type of person and also live in Glasgow. For that reason, the sun rarely shows its face! But I need to learn that there are times in the day when I'm going to be particularly negative and try and remember that. You're right X

Pairofboots profile image
Pairofboots in reply to saville75

I'm sure Glasgow must get a touch of sun? I'm more an inside type these days, too peopley, too hot, too cold, too dry, too wet, and every other excuse 😉

lcd8 profile image
lcd8

Hi there. So sorry to hear you are/were feeling like this. I really hope things are a lot better this morning. If you're anything like me sometimes it is easy to let things get on top of you, especially in the evenings and at night. Its even worse it you are generally feeling low, lonely etc. I have a congenital BI, so not really the same experience as you. But I do recognise the things you say about friends drifting away, feeling you have lost a bit of yourself etc. I get these feelings whenever my BI causes an 'incident' and I need to have a spell in hospital or an operation. Its so scary in itself without these outside burdens as well. So I feel for you. Do feel free to vent here where there's like-minded people that understand. All the best.

Lulu x

saville75 profile image
saville75 in reply to lcd8

Thanks Lulu. You are so damn right that I (and everyone) should feel free to vent here where there are like-minded people that understand. It took me a massively long time (a decade) to realise this so I can't recommend it enough to other people X

Astley10 profile image
Astley10

Your not alone I had a similar accident on the 13th September 2009 some days u just wish it is all over

saville75 profile image
saville75

Thanks so much for all your replies people out there - it means so much to me. I'll reply to you personally when I get a chance X

JimKirk1 profile image
JimKirk1

Hello , i to have had a sub arachnoid hemorage, quite some time ago now. I have a shunt if you have one to. I can relate to what you said about your career. Ive lost mine as well! i used to operate cranes-now a insurance risk and coupled with lost confidence and antidepresants like you, i suppose you have depression and anxiety, and at a guess have panic disorder. Ive also fallen out with my sisters. Do you get the feeling of unreality as well now and again , as though you can see and hear but u know yourself somthing is not right! As regards returning to any sort of employment its hard, the uk goverment got rid of remploy and similar organisations. Unless u have good family or a freind who would help u out you will find it very hard to get any sort of job. Having the hemmorage is a hard thing to hide as you act diffrent fom should i say "normal people" Your advantage over me is you seem quite young so still have some options to explore-try not to get in the benifits trap like me, try and get a job.Martin Fox (58)

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