Fatigue is a killer

[Huwbo31]

So I've been working all day, I work in a pub so I'm dealing with people all day which can be tiring at the best of times! Tonight I just broke down at about 9pm I just hit a wall! My TBI was located on the right side of my head giving me a left sided weakness, this came back tonight and I was limping and struggling with my left sided strength. I also felt so depressed, just with the attitude of just "f*** it" and I'm not normally like that at all but this drives me to be like that! I can't hold it in, I get so wound up over how this still affects me to this day and I can't help it! It makes me feel pathetic and upsets me a lot! I feel like all the effort I have been putting into my recovery over the past year and a half is all wasted! It's so fustrating and it makes me feel like I just want to run away from everythung and just hide from everyone😔😔😔

[Kirk5w7]

Hi Huwbo, if you look back at previous posts from many individuals, a big part of recovery is acceptance.none of us want to believe our lives will be different for the foreseeable future but unfortunately that is the reality.

I believed that it would be a short time and I would be the old me, you see I had not even had a traumatic brain injury with bleeding or had to have surgery or anything like that, just swelling.

And I made a far better recovery than all the doctors thought, they said that if I survived I would most likely be in a permanent vegetative state.

How wrong they were, but my life has changed so much.

It is 3 years now, but I cannot work, 20 mins of exertion, be it walking or speaking or doing puzzles etc, warrants at least a half hour of rest.

Take this morning, I had a bath on getting up then got dressed, after making and eating breakfast, I fell asleep on the sofa, only for about 20 mins, but it was necessary.

I have to live my life now to accommodate my limitations now, I don't like it one bit but I can't change it, I can only hope that I will continue to improve, I keep pushing the boundaries, I will never give up, but anger and frustration are counterproductive emotions.

You are doing so well to be where you are now, channel that energy into accepting and enjoying what you can do ow, over time that will be more and more.

Best wishes Janet x

[randomphantoms]

Hi Huw

First can I say well done for being able to work in a pub at all.

Are you getting any benefits? If not claim for them and check out access to work (I think they can be got on the .gov site).

No effort put into improving is wasted but please try to be proud of what you have achieved already. It is so easy to get down and frustrated when things go pear shaped just when you were beginning to believe that you were getting "better". When you've had a good long rest try to work out what it was that made you " hit the wall" (longer hours than usual, too many days in a row, something different at home as well as work???)

As Janet says you may well be at that point when it is dawning on you that there is no quick fix (if there is a fix ). At 11/2 years on I'd lost count of the number of times I'd threatened to punch the next person who told me it would be a long haul to to take baby steps.

Accepting that you can't do everything all of the time is a really big step and it surprisingly releases you to be able to do more before the exhaustion kicks in because you are learning to look for or at least be aware or the signs that you are doing too much.

Hope you can get something out of the rambling.

Lovenhugs

Xoxo

[spartan300]

why are you doing so much working in a pub ? slow down accept that you have a

TBI

[Hidden]

Hi there. Hope you have managed a long sleep and are getting a day off today. Firstly, well done for getting a job. Your TBI is not that long ago and you have made amazing progress to have started working already. I know you dont want to hear it but brain injury takes a long long time to get over. Even years later, you will not be `better` or `cured` or the `old you again` The tough part is that you often long to be that person again, doing all the stuff you used to do. The sad fact for many of us is that we simply cant and the best thing is,to listen to your poor old brain and obey it. I felt pressurised to `be me` and made to feel it was my fault that I was not so much fun/ such a good friend/mother/daughter etc etc. You have survived something very serious and you look and even feel ok but there is invisible damage and changes, some subtle. I could never work in a pub because of the noise so maybe several hours of noise and people is too much for you and you could try working fewer hours. You would probably get tax credits and maybe other financial help and you would have more hours free to just rest. My ABI was 15 years,ago. I am doing 20 hours a week paid work and 24 hours a day unpaid single mother and that is more than enough! Be kind to yourself and take it easy. You are doing so well and all of us on this site are here whenever you want a chat. There will be bad days but just believe that good ones will come too. Its like being an ant climbing up a slippery wall. You will plod on and get quite far then slither back and have to start again. Thats when the frustration and anger kick in but you will learn to handle it and look across at all of us other brain injury ants plodding next to you. Very special ants, we are! Hope you have a good weekend and take care xx

[malalatete]

Hi Huwbo

Oh, that is a horrible hole to be in, I have been there many a time, but don't run away and hide, cherub, just maybe think about what it is you are fighting, and whether it is the right thing to be fighting for. My experience shows it takes a while to get the hang of that, mind.

I don't have a brain injury (yet - I go for surgery in September) but I do have the neurological condition ME, also known as Chronic Fatigue Syndrome, which hit me overnight in 2010. As the modern name suggests., fatigue is one of the symptoms of this condition; its original name Myalgic Encephalomyelitis explains another (pain) and the reason for it (inflammation of the brain).

So you could say I have got used to the kind of situation you describe, it is the MO of the comdition. As it happened overnight it was a huge shock: I used to be on the exec management team in charge of 5 departments at a local Council until I was rendered unable to walk from the train station to the offce or maintain enough brain activity to last me through an Exec meeting.

First thing to know is that acceptance is a long process, and one which is akin to grief. You go through that whole anger-denial-loss-acceptance cycle, again and again as you come to terms with each little loss. It took me probably two years to begin getting my head round the fact that there was a 'new me' and that the old me was not coming back, not a journey without its 'three steps forward and two back' by any means. Hope, whilst a Godsend, can also lead you to don those pink glasses from time to time, only to realise when you have to take them off to go for another lie down that life ain't like that.

Accepting the fact that this is how it is, that is only the first part of the process though. You then have to get to the point where you are happy with the new me, that this new person is an improvement in many ways on the old one - where you can say you like him, despite his new idiosyncracies. That probably takes a while longer, in fact for me it has probably only been the last 18 months...

The first part is very much, to use that old Irish prayer, about accepting something you can not change. That this has happened and things are not how they were is....immutable. We can never go back.

I spent a lot of the early part of my illness trying to find out how to get back to my old self, my old career, my old life. When they officially retired me in 2012 on the basis of a report from a doctor which basically said it was unlikely I would ever work at that level, if at all, again, i finally realised I had no option but to take it on the chin. So don't be surprised if it takes something outside of you to make that 'click' in your head.

Accepting the second part comes as you start to consciously focus on your blessings, what is good about this new life rather than how it compares negatively to the old one, and on what you can physically and mentally now do and achieve, rather than trying to achieve what you can not, and as you frame your life comprehensively around those two points.

A lot of this comes by trial and error, there are things I took on at the beginning but had to pull out of because the commitment required was too great and I learned the hard way. Sometimes the hard way is the only way to learn though...

Perhaps you are still clinging on to where you were, and it is all getting very difficult, and those fingertips are sore, starting to feel like they are slipping off the edge of that precipice? It is very scary, but letting go, and finding a new path up the mountain, one which doesn't involve a vertical climb up the incline, but which takes the meandering (gravel, so occasionally slippery, sometimes still quite close to the edge too) path can be the safest way forward.

Making that jump is hard, and the resulting slow climb is a long, time-consuming and at times very painful process. But reshaping your life round the 'new me' instead of trying to recreate it round the old me will be the thing which means it is built on rock, rather than sand. For me, these days, whereas I used to see my old life in colour, and my new life in monochrome, I feel like the old life may have been in colour, but this new one is in HD!

Sorry for the long ramble Huwbo but I do hope it has given you a picture or two to help you to see things differently and reflect, and also a bit of an assurance that there's a rope ladder here to be thrown into that hole you were wanting to crawl into.

Very best

xxx

[ashj]

Hi Hubwo

Sorry to hear about you exhaustion but please slow down and don't push yourself.

In our situation our energy has to be managed carefully and treated like something precious, so needs protecting. If you find yourself in the situation of 'at it all day' then it's best to stop before the inevitable energy crash happens, because it will.

It takes some getting used to but you'll gradually recalibrate your recognition of when you need to stop and take it easy, because we can't do as much as we used to so try slowing life down in general as a quick win to give you energy for longer during a day.

I hope you slept well last night though and take care.

Ash

[sca2013]

Looks like we're members of the same club. My brain injury was Dec 2013. What you're describing are some of the same things I have been thinking and feeling at times, especially when I have hit the wall too. I'm sorry you're having to go through this. I know it sucks. I wish you all the best in creating your new life. I'm still trying to figure mine out too. Thanks for sharing this.

[angelite]

Hi Huwbo,

If you have hit the wall, then you have done too much - it's that simple.

I am stubborn by nature and have often tried to force my brain and body to exceed it's quota - I have hit the wall so many times its a wonder my nose isn't flat !

I only work a few hours part time but know that during the working week I have to be sensible and pace myself or it all goes pear shaped. I don't always manage this, sometimes out of necessity, sometimes because I try to push my luck and have to suffer the wrath of fatigue payback - which can be very much like going back to early recovery in terms of weakness, lack of muscle control, cognitive fog etc. When I end up in this kind of a mess, there is nothing to be done but rest it off. Frustrating, yes but at the end of the day, if I don't respect my limits I need to be prepared to face the payback ! If there is a particular event I want to attend ( love live music and a dance ) I try to book annual leave from work so that I have some recuperation time afterwards - it is just how the system works these days : )

Hope you have been able to rest off the payback and are feeling better soon,

Kind regards, Angela x

[Gaia_rising]

Yep-

I had one creeping up on me all day yesterday, and realised, as I was about to punch a woman in Asda, because the way she was speaking irritated me, that I had the full-blown brain-fog.

It's about adapting, not about recovering, none of us are ever going to be exactly the 'same' as we were before. In some ways, I'm 'better', because I have to calm myself, and accept that sometimes I'm not going to be able to do whatever-it-was that I wanted to do.

I appreciate it's not much consolation, but we all have good days and bad.

[MXman]

It seems to me that some times it gets us when we are least expecting it and we push ourselves too. Im exactly the same Huwbo, trying to do too much and then I get brain fatigued and have to except sleep or (power nap) as i call them. Talking to clients this morning chatting and chatting for about an hour then back in my truck and thought bloody hell I feel exhausted so shut my eyes and had 5 minutes it always helps. But then back to it and not stopping no wonder we are brain fatigued... Trouble is with me with this is that I want to be or think I am the same as before and I'm not. As said by others we have to accept and adapt. Hope you have a good evening. N

[DanielX3]

Hello Huwbo31 my name is Dan. Don't let thing's get you down so much when you are doing so well mate. You've just got to keep looking forward and when you feel down just think of all the good thing's you've got in your life, thing's like your job. Take it from me I had a TBI 12 years ago and it still affects my life in a lot of ways. I still think about what happened to me every day in life and find it very hard to accept but that is exactly what you need to do.I work as well as you and without my job, I am an estates caretaker by the way, I don't think I would have made it as far as I have. I have even managed to get my driving license back last year so keep thinking of all the positive thing's in life and you will do well just like you would have done without the TBI. Never give up mate.