Hope needed

[Jpdee75]

Omg does anyone ever get over this fatigue after 3 years I’ve tried to see my future with this gremlin and I can’t see it’s psychologically floored me the last couple of days which has taken any incentive to do anything and I can’t see any sort of happy ending. It’s a nightmare cause I can do things but I can’t because of the after math . Seems to be worse now I’m trying to control the boom and bust haven’t felt like this for long time

[haverfordwest]

I've just spent ages writing a reply and lost it!!!I thought I had fatigue sussed, but on Tues it knocked me for 6. I had a family day out, and walking up a small slope it was as if all my energy had gone, I just wanted to sit down and shut my eyes but I knew if I sat down I would struggle to get up so I just leant against a wall and tried to shut out the noise and hustle and bustle of people passing. We all know what it is like but it still catches me out. I felt my brain was working in slow motion and the simplest of questions felt like they were from Mastermind but 20 minutes of rest and leaving the world carry on without me having to participate and all was well. I felt slow/foggy/drained on Wed, and today I am feeling better, but still told family to go without me as I knew it would be too busy a day for me.

I'm 3 years since tbi and still struggle to accept how I cannot do/remember things.

Think I will wait till half term is over and then venture out into the big noisy world.

Things are easier but only because I am doing far less. Every job seems to take so much effort and thought to do, and then I am annoyed because I am so slow. All still very much a learning stage so don't beat yourself up about it, I am constantly finding different ways to do things even if they do take me a lot longer. I've got a weekly tablet dispenser as I can't remember if I have taken my tablets. When I cook I get all the ingredients out first or I will forget if I have used them or not. I can't taste or smell anything since the tbi, but getting a gas alarm and a kitchen timer have helped. I've yet to find something that tells me that I've left the tap running, or not turned on the washing machine after loading it 🙄

Enjoy the sunny weather and chill, I seem to do a lot of that, chill and watch the world go by.

[Jpdee75 in reply to haverfordwest]

Seems like your in a very similar situation and it was 3 years in march for me.I’ve just had enough of the everyday struggling and not getting anywhere with my effort to improve. This no fix for fatigue thing has hit me so hard, I was already down but I did seem to have a glimmer of hope. Sorry I’m vent but I’m on my own and that isn’t easy.

[haverfordwest in reply to Jpdee75]

That is ok I have days when it gets to me, I just keep on thinking it could have been a lot worse, so try to shrug it off. I just sit with a cuppa and enjoy the peace if I can, it always helps. I cant watch tv or listen to the radio when it happens as my brain feels like it is whirring, so I just sit and enjoy the birdsong.

[Jpdee75 in reply to haverfordwest]

You have a great outlook I’ve been recently knocked by neurologist and neuropsychologist who told me look it’s been 3 years your not gonna get better and the fatigue is here to stay over the last month or so I’ve crumbled. Everyone has said to me that I’m so positive but this has taken that. Thank you for listening

[haverfordwest in reply to Jpdee75]

I struggled for a very long time, as no one seemed to understand how everything had changed. Because I looked the same they thought there was nothing much wrong with me, to this day even my family and best friends don't understand, so how will strangers.

Then some one told me about Headway and the meetings that I could go to and it felt like my whole world had just got better. I met other people with the answers to my questions and suggestions to help me improve my acceptance of my tbi. I still cannot accept it, but I have to say that the monthly meetings are a tonic as we all laugh at ourselves and things that have happened over the years. They also help with advice on how to deal with your worries and give contact information you may need, and you can see that any new people coming to the meetings slowly realise that we are all the same and understand exactly what they are going through.

Don't expect all the answers from medical people, I have found the Headway meetings far more helpful, as some of them have been through whatever you have.

I have had to realise that I cannot multitask anymore, it is 1 job at a time, and notepads in most pockets, post it notes all over the house and I will still forget most of the things I am supposed to do. I avoid noise and conversation happening together, lighting in shops is a problem, I could go on and on.

I find if I am stressed (which I never was before, so another thing to add to my problems) I will read a book, I find that I can totally relax doing that, sometimes I don't remember what I have read and will have to re read. Try to find something which helps you, growing flowers or herbs and watching them grow day by day, walking, drawing, dog walking, upcycling furniture, making bird boxes,cooking, jigsaws etc etc. you may not find something straight away but hopefully you will soon. Try not to let it get you down, when you find a group to chat to it will be such a relief and pleasure to meet up with other similar people. Hoping you find something to help you chill.

[Jpdee75 in reply to haverfordwest]

Thank you

[Lite75 in reply to haverfordwest]

Yes I often just open the window and absolutely love listening to the birdsong. I can get lost in that-who needs TV or anything else we have beautiful birdsong. Even TV, when I do have it on, takes up mental energy taking in what is being said. Switch off with birdsong and I’m lucky enough to have it from my house.

[haverfordwest in reply to Lite75]

When I am tired I find tv tough with the sounds, flashing lights and movement of people, that is why I find shutting my eyes and listening to the outside world helps.I hope you get to JSP on Sunday.

[Lite75 in reply to haverfordwest]

Fatigue-I find the worst of the after effects of BI. My Support Worker put on a buffet yesterday-she did all the work, but just being with and talking with the people there has completely ‘panned me out’ today. I didn’t have enough rest before it started and had also had a therapy session at 10am. I’m hoping to be able to join in the Jubilee Street Party on Sunday-it’s all a matter of thinking everything through before it more. We all know the problems and that’s a big plus. It’s 11 years since my TBI and still I get very frustrated… on the other hand, I have to make myself ‘think positively’. But I know that REST is the key!! My ‘adult’ kids tell me they know when I haven’t had enough rest by my speech which was almost taken away completely, but with a lot of expert Speech Therapy and hard work, I can speak again. It’s an uphill battle isn’t it and I empathise with everyone, especially with the ‘fatague frustration’! 🙄 Lite 75

[haverfordwest in reply to Lite75]

W e all know we need to rest, it is the doing it I find hard. I always know that if I am struggling I can look on here and find other people giving and receiving good advice.

[Skulls]

Coming up to four years here and it doesn’t seem that long since I told the occupational therapist that I longed to leave the crushing fatigue behind. Of course, one cannot fight it and I have found it better to surrender and go for a lie down when it hits. I have no neurologist or neuro-psychologist since I wasn’t referred or followed up when discharged from hospital. All I know is that I shall neither get any better nor receive any sort of prognosis which means, surely, the DWP will have to cough up my benefits and look cheerful. At least I could then escape this house arrest…

[Jpdee75 in reply to Skulls]

Got to get benefits sorted cause now I am a ware I’m not getting back to work anytime soon I’m truly in the do do with my home and everything . I never made hay in the sunshine. If come a custom to telling people my wows lol thanks for reply

[paxo05]

Hi there,

Basically no and yes.

No it will probably not go away.

That doesn't mean it will not get better. Or rather you will get better at handling it . At planning your time and factoring in rest times.

It soon becomes second nature like making sure you eat. ( yep I used to forget that to).

If you've seen the film "about a boy " then think of it alond simular lines. Using units of energy for tasks and jobs and recharge time. You will get used to how much energy each task uses and how much energy a day you have. Then if you have a high energy morning you know how much recharge you need in the afternoon.

You can also get away with borrowing energy from the next day so long as you factor in extra rest time.

All the best

Pax

[Jpdee75 in reply to paxo05]

I’m slowly getting my head round my future thanks for insight

[Painting-girl]

I'm heading up to my fourth year in July and have seen continued small improvements. I do know those feelings about how to keep going and trying to manage fatigue, and they are horrible, when it seems that managing fatigue is ever present - but I think sometimes trying to manage it does make me more aware of my limitations - which isn't always nice to face. Realising I have to lay down for a break every day and that I can't keep up with my peers is hard. But I can still do life affirming things and have a good life.

But I've had a good four - five weeks when I've done more each week then I would have believed possible a year ago. I think there is something about fitting in things you enjoy doing, as they can help either to indirectly top up your battery, or to let you feel that you still have a good quality of life. And making sure to eat and drink, nap and sleep regularly to support activity is really important to sustain extra activity.

I've very gradually increased my weekly activities over the year to the point where last week I was seriously wondering how much effect I had left from the TBI. Though the last couple of days I was expecting a crash and it's come along with a manky cold at the same time - so don't feel great today at all ( but a lot of that could be the bug - am coughing a lot, which is super annoying and have one of those irritating flares of blood on the white of of one eye - so not at all pleased!)

What I did to 'earn' the crash was to take part in our flower festival at church as a new member of the local flower club.

Sunday, I went to church early with a friend and went out to breakfast afterwards. Sunday afternoon I went and played with my young grandaughter. Monday morning - I went to a flower workshop ( this was bad planning, because I forgot it was scheduled in this week when I booked in) , In the afternoon I picked up my flowers and trimmed them and put them in buckets. Tuesday morning I went to a supermarket early, with a list to get a weekly shop and pick up some more flowers. I then did a couple of hours voluntary office admin ( and it was really busy - again slight bad timing). Tuesday afternoon I lugged my oasis and wire into church and set up vases. Wednesday I lugged all my flowers and buckets out to church, and flower arranged with everyone else. I was pretty shattered, but went back to the evening party opening the festival. So yes that all pretty well hit the definition of 'too much ' but it was a great experience and I did it. The fact it was mainly physical work helped I think. (Writing this message feels tougher by comparison).

Yesterday I had a do-nothing day as planned - even to having pre frozen food ready in the freezer. And today I do still feel rough, but I did get out this morning to water arrangements - and chat and listen to the music in church. But before lunchtime I realised I was wiped again so have crashed out at home. The cold really isn't helping! But being in a good mood really is.

( Oh and of course the big trade off is that I've done no housework this week, but I tried to do stuff, broken down into small spurts, last week, and have easy to heat food in the freezer - so lots of planning...but I could still feel that I was getting more headachey, particularly on Wednesday)

[Jpdee75 in reply to Painting-girl]

Well done you sound like your doing really well and it’s good to hear. Mood is key. I started decorating my daughters and toddler grandson’s lounge the other day paint and toddler doesn’t mix so I’m trying to do it as quickly as I can and I have completely done myself in and expect a heavy long weekend recharge to go back Monday, I’m a painting boy ha. It was my trade so a bit of a head start. This message was great to read it was worth your effort

[Painting-girl in reply to Jpdee75]

Oh toddlers and paint really don't mix, you're right there! Hope you can rest up well during the weekend. (I really want to do some decorating - so that's the next big target for me I think.)

[Silmarillion]

Hey there,

You just have to be patient and over time you’ll be able to manage it better. Cut tasks down into manageable chunks eg collect the washing,put it on, sit down and have a drink. Then get it out of the washer and sort it. Have a rest. Put the washing on a ledge or table beside the washing line, hang up half then have another rest for 10 mins. Then hang up the other half. If you’re going for a walk, walk to a landmark then sit down, walk some more, sit down etc. Do the household stuff over seven days rather than on the whole day.Make sure you eat properly. have a knapsack in the afternoon or evening. Go to bed early. Make a list of what you want to achieve for the week that is realistic. Do more when you’re having a good day and less when you’re having an awful day. Things will change over time. If it’s getting you down speak to the doctor, especially if you have a low mood, which is common after brain bleeds.

[TonyToo]

The only thing that's mitigated it is living "sensibly" with it.

braininjury-explanation.com...

[catrabb1t]

The word "fatigue" is always hard to gauge as the person describes it for their own situation and unless it is spelled out it is hard to know how much the person is achieving to do (or not). I know this because my daughter has chronic fatigue but is mainly in bed, yet over the years others describe it and they are able to be up and function to different degrees. "Fatigue" means something to the individual because they are not able to function in the same way or are debilitated to different degrees. The cost to all of these cases of fatigue is immense as the person struggles.

I am sorry to hear that at the 3-year mark you had hoped to experience less fatigue. We all live in hope that our recovery will be good enough to avoid constraints in the long-term. It must feel a disappointment when you reach that milestone and feel your recovery has not gone as well as you had hoped. Having been so patient too - BI recovery involves a lot of patience from what I have read on here! I understand how hard this must be with the fact you are able to do everything but are unable to because of the aftermath. It is a head banger for brains to navigate!! It is an invisible disability.

I am in the same boat now with fatigue (at the high end)... I barely get anything done. I am not yet 6 months post surgery and I am finding this fatigue very hard. I am only just beginning to do things in small bits and get mowed down by crushing fatigue which brings on a feeling of panic along with other things like light sensitivity.

You have good advice above. Thank goodness for this forum. Hope you like the decorated room when finished. You mention getting it done as quick as you can so that must affect your fatigue. Perhaps that added pressure brings more fatigue on? My OT told me to do something for only 10 minutes then rest as my point to fatigue is quick. Consider increasing the frequency of your rests and shortening your painting times between rests, you might see a difference where you are not feeling as bad. And hydrate and pee often (lol) it's important 👍