Exhaustion wall

[victoria conway]

Does it ever disappear - or, at least get down to just a few bricks? Spectacular crash into mine yesterday. I should have recognised the signs, of course. Wednesday, poor old brain had no inkling of where my feet were from first off. Stumbled on (literally) and went to work. Someone there asked me if it would get better as the day went on and I moved about. What's the answer to that? I HAVE NO IDEA!

Thursday - my regular day off work. Husband, kindly, took bus to get to the train so I didn't have to get up early. Expected grocery delivery between 9 and 11am. Decided it would do the deliveryman no lasting harm if I greeted him in my jamas and dressing gown. Sourcing latter when mobile phone rang - downstairs. Staggered down just as it stopped.

House phone rang - answered - work - can't get into one part of accounting system. All other parts OK - just one member of staff who can't. Response terse. Reboot her computer and try again. If I don't hear from you, I will come in and sort - but not till delivery received.

Man came - grocery bags all over kitchen floor. What to do now? Unpack? Get dressed and go? Follow normal routine of my day off - bath and hairwash? Decided on latter (which wears me out anyway - but at least reduces the stiffness in my legs which exacerbates mobility. So bath - hairwash - abandon idea of hairdry (haven't done that since the horrible event!) - leave grocery bags all over kitchen floor.

Now 10.45 - get keys and go. Reached 1/2 mile from home, mobile phone rang. Luckily, I have sorted out Bluetooth connection through the car radio (husband v jealous of this!) so press button to answer. Recalcitrant member of staff reporting has access to accounting systems. Bite tongue (it's pretty short now!) - and turn back home.

Grocery bags still all over the kitchen floor (where is that unpacking fairy?) - need breakfast. Make coffee - tripping over bags. Slop some yogurt into bowl. Add muesli. So tired, it's difficult to swallow even that. Sit awhile - because it's all I can do. Clock strikes 12 noon. Grocery bags beginning to look sullen on the kitchen floor. Decide I need to unpack, at least, the things that belong in the fridge. But the fridge is in the utility room - involves a step and my feet and the bags are heavy.

Decide to unpack the things that go in close cupboards. Start with wine rack - an easy one - and disposes with three bags because they're so rubbish at packing! Not so much luck with the coffee/tea etc cupboard. Seems to be stuffed full already but poke it all in holus bolus. Sit awhile - because it's all I can do. Clock strikes 1pm.

Have 2.45pm appointment with hydrotherapist - first since five weeks ago. Christmas, my mother-in-law's needs and her mother's needs have got in the way. Need to think about where swimming stuff is, whether I have £1 for the locker, what has happened to my little bit of cloth which is applied to the end of my stick to stop it skitting about on the pool edge etc etc. Abandon unpacking - rationalise by fact that kitchen floor cool and fridge stuff won't harm too much.

Sort all that out - bit of panic over the little bit of cloth but it reappears in the bottom of the bag, even though I "know" I've looked there before. Get to appointment - lovely to see my hydrotherapist again. She has been my saviour in all of this. She's kind and gives me an easy session but still, I trip and wobble - and, when it gets to some sort of tap dancing routine because nothing will obey me and I start the yawning - she brings me gently out. She is magic as she can somehow still give me a sense of achievement, even when I've been so rubbish.

Get home - remainder of grocery bags still all over the kitchen floor. Could sit awhile but have to pick up husband from train and feel grocery bags should be sorted out. Redistribute fridge stuff into vacant bags and make several trips up/down step to fridge. Redistribute remainder to worktops to make it look like I tried.

So - how many signs did I need? Feet not in connection one day - next, a whole day of indecision? Why should I be so surprised that, on Friday morning, I simply could not get up. Could not contemplate eating - and, when I tried that, could not keep anything down. The exhaustion wall simply stood before me and said stop.

But - back to my question. I think I have accepted, at least, that, though I could do all in the past, it is not the case now. I am 2 1/2 years after the event now. What I want to know is - does it get better? Or is this it? Is that wretched wall there forever?

[Louise]

I'm not surprised you hit the wall after a time like that!

For me at 2.1/2yrs I was still very bad, and there were still LOTS of improvemts to come along...

I think we plato then woosh improvements then nothing then again kind of like a child growing up - for me that was...

I now find yes I cant 'hit that wall' but 1. Not as often as it used to be. & 2. learn when I'm doing way to much & can sometime avert the 'wall'

I hope things are a little easier today for you try to relax maybe your needs are more than others now honey...

take care, keep warm its freezing out...

[kempse]

Hi Victoria,

I'd like to offer you a bit of hope on this very frustrating wall of exhaustion. At the 2 and half year mark it was much the same as you describe for me too and I had resigned myself to the fact that that was how it would be for ever more.

I know not everyone will follow suit, but for me this wall fell down, almost overnight. I kept thinking it would reappear any time soon and was cautious not to get too excited that finally I may be able to live life as I did pre sah. My memory doesn't serve me too well these days, but in my case it was somewhere between the 3.5 and 4 year mark. (my fifth anniversary was last November).

For approximately 3 years after my sah, I had one part time job, which, with a family of 5 was more than enough to contend with on a daily basis - I now have 4 part-time jobs and still have the family of 5 in the house. I even had the energy to put a coat of paint round the landing the other evening - starting at 10.30pm! In those early years I wouldn't have even stayed awake till 10.30!

It still does ware me out occasionally, but probably no more than your average 52 year old woman!

Only last week, my kitchen floor was covered in bags of supermarket shopping - it wasn't till the next morning I discovered I had missed a bag when putting things away - typically it was the bag with all the frozen items in:frown:

I appreciate everyone is different in their recoveries, but I just wanted to say it is a possibility that this wall could eventually fall down - I really hope that in time, it will for you too.

Best wishes,

Sarah

[victoria conway]

I mean it - both of you. Any hope - and the feeling of care - helps. Been a tough few days for me here. Didn't get up till midday today and felt so guilty about it - but I didn't want to/couldn't.

Wish I was with you in Scotland, Louise - though resident these days in Devon, I'm a Sutherland girl by upbringing - from God's own country. Down here, it's not cold - just wet wet wet and grey and bleak these days. But the days are lengthening a bit and I keep telling myself that spring will come - saw some catkins the other day up on the moor (that's Dartmoor here) - there are hills here - but not those wonderful majestic mountains.

Hope - for spring, for better times. Thanks for your help.

Victoria

[Daffodil]

Oh Victoria. I read your post and thought to myself that I have been struggling with the same thing. Sending hugs.

All those small tasks we used to fit into a day and we used to do unthinkingly and with certainty that we could do it and yet now it seems that really we can only manage a proportion of what we did. That's the thing isn't it, every time we feel a little bit better we seem to just fill in with more and more. The list of your day sounded exhausting, I know I couldn't have done all that without hitting major exhaustion. That said I haven't got any of it sussed yet by any means and I have hit some horrible walls too so am keen to learn a bit more acceptance of my new speed. I too hope that it will continue to improve and I think it will.

One thing I have picked up as a new habit which helps me a bit is to put breaks and rests in between doing stuff, everything, if I do something then I rest afterwards. This also means I can do far less because there is less time too but it doesn't stop the feelings but just helps me spot when I absolutely must rest. An example is Yesterday I cooked Sunday lunch with hubby helping but I could feel myself beginning to flag and by the time we ate I was awful. So I went and lay down for 30 minutes away from kids and noise and hustle of weekends and was just quiet. I then had a bath and was back on track enough for cuddles with kids in front of TV , but I was still in bed by 9 pm. I do the same on my work days. Little rest breaks. If I put the shopping away I do a bag one at a time and sit in between , have a drink. Just sitting quietly can be enough. It's hard to do, I resent it if I'm honest but if I don't do it then I am in bed for days.

I know it probably feels like you are already going slow but honestly just try to put a little more white space into your day , moments to let your brain take a breath. In computer terms I think we have less processing power after our SAH and so sometimes it will just shut us down unless we don't take care to connect to a regular power source. Rest breaks, good food to refuel and quiet moments, that's my power source.

[Wem]

Victoria, this is a subject so close to my heart.

I have posted on numerous occasions on this very subject and like you live in hope that one day I will be able to live my life without the constant need to plan and re-plan when and how I do things.

I broached the subject recently with my neuro surgeon consultant who advised that in his opinion there was no clinical reason for the fatigue. His advice was to just 'get on with life' and he cited an example of one of his team who had returned to full time neuro surgery following a SAH. Don't mean to be churlish, but the words - bully for him came to mind (!!).

Aside from the bluntness of his response, the one piece of advice I took away from the conversation was that I need to re-train my brain following the extreme trauma it has suffered. If I started out as a non runner, I would not expect to be able to run a marathon after achieving no more than say a half a mile jog.

So my new year brain (marathon) training includes, days when I undertake moderate exercise, followed by days of little exercise, with one or two days of harder exercise thrown in. I am careful to assess which tasks create the biggest 'hits' in terms of zapping my energy and work my routine around them.

I have in the past fallen into the trap of avoiding certain tasks, because they were the biggest hitters. Now I am striving to include everything, but in a much more managed way. In much the same way as when training for the real marathon it is always sensible to include some hills in the programme to help you to sustain short sharp bursts of energy.

My shiny new training regime doesn't prevent me from hitting the wall, yesterday was a fine example when I felt so weak I could barely lift a teaspoon. Today I am marginally better, but I am aware I need to be careful to slowly ramp things up again. It is very frustrating and I take heart from everyone on BTG who who have offered support and advice to help to get me through.

I am nearly 2 years post SAH and I have come to the conclusion that we have to develop our own coping techniques to manage the fatigue. I live in hope that things will continue to improve and whilst I accept that I will probably never have the same high energy levels that I had pre-SAH, I am determined to attain a level that will enable me to participate in life again.

Be assured you are amongst friends on BTG Victoria, who all understand how difficult it is living with the constraints of post SAH fatigue.

Sending hugs and warm wishes your way,

Wem

[Winb143]

Victoria,

I find that if I do not do it in the mornings(work/wash etc) I fall asleep thinking about it lol

You will get there albeit slow but sure and if you need a break have one like a long lunch go 5 mins early and come

back 5 minutes late.

I wish you well and you Wem xx

Love

WinB143 xx chin up the pair of you xxxx

[kpaggett]

Vic,

All I can say is that my own personal rhythm has changed several times since the SAH. What makes the wall easier is to listen to yourself as you give off all the signs. At first, you can't recognize them.

Become curious. Take notes. Put your activities into the context of your day. Even as you discover what makes you hit the wall, a new level of energy all of a sudden appears and you'll have a new wall to find. Listen. Watch for new signs. You are your best knower.

When you do hit the wall, don't get down on yourself for not being able to go on. Don't feel like you have to answer the phone, don't feel like you should go out, don't feel any 'Should'. Just watch, your body is saying stop. So you stop.

There is no judgement. Just pure guidance from your own intuition and harmony with your strange and unusual body/brain. Get to know it and it will get to know you too. Working together to promote your well being.

~Kris

[kayleigh39]

Hi

I was thinking about the same things , I'm 9 months on now and although am well, when you hit the fatigue barrier it's horrible , and was wondering if this does improve as time goes on , or is this as good as it's going to be ? But then when you remember what we have been threw , it helps a bit to put things in preceptive

I'm 39 but feels like I'm a lot older some days

Helps to come here and read other peoples journeys though.

Best wishes

Kayleigh x

[victoria conway]

Victoria on a break here. Sort of sausage stew on the hob and it's sit awhile time again! Thanks for all the responses - BTG really does help because it lets you know there are other understanding folk in the boat!

Learnt a few things too - like never ask a neurosurgeon about the "fatigue" as they call it - I don't call it that - it's too little and vague a word. No clinical reason there may be but I think my response would have been somewhat more ....... robust than yours, Wem! But then I am not renowned for my patience - or rather, when pushed beyond it, the results are kind of ugly - my children learnt that at an early age!

Think it's in my genes - my great-great grandmother was schoolmistress of a village school for 45 years - and during that time gave birth to 13 children. For each birth she was given a whole 10 days off. When 2 of them died as a result of an outbreak of scarlet fever, they closed the school - for three weeks! I have all this from the log of the school from the 1860's onwards which I have and is just magic.

Apparently (and this is family lore), when someone once commented that she must have undue amounts of patience to cope with it all, she retorted that the only reason she could cope was because she had no patience whatsoever! I'm with her there.

Maybe I'm better off without the patience and enduring the frustration - surely, it makes me keep trying.

[DawnS]

I'm 2.5 years in and although I am much, much better than I was to begin with, I have to say that I'm learning more about my abilities and the fatigue now that time has gone on. As I passed the 2 year mark, I found that I began evaluating where I am at in my recovery. While I still see changes, these have slowed down a lot and I began thinking that maybe the life I was now living wasn't the one I wanted to sustain.

I had been working full time since Dec '12 as I changed my role to a new department (and new manager thankfully)and my 'phased return' which had been stopped at 20 hrs per week literally doubled to 40 over the space of one weekend.. I wouldn't recommend this to my worst enemy, but it was important at the time that I get the new role and work with a manager who had empathy and acted like a human being.

I've reduced my hours at the beginning of this month and am still exhausted. Suddenly, I am learning that I've been approaching the whole fatigue thing so wrongly. I've been going and going and going with the thought in mind that if I'm going to feel awful anyway, then I may as well get things done and then wondering why I get headaches for days at a time.

Now I realise that if I need to clean the bathroom for example, I can spread this out over a couple of hours. I clean the sink then watch a programme. Clean the loo and watch another programme and so on. Eventually, the bathroom is done and I don't feel shaky, have ringing in my ears or the sign that I've really gone way beyond - a metallic taste in my mouth.

I saw my GP yesterday about the headaches and he told me that 2.5 years is still early days in the grand scheme of things and that I've to be more patient with myself

[MaryB]

Hi,

My 2 1/2 years out came with me greatly reducing my hours at work even more. I was told to apply for disability, I was told my damage and the effects from my neuro testing showed I have no attention span or short term memory.

I realized last fall I was literally blacking out on my long days and not knowing what I was doing. I was completely exhausted and it was my own fault for thinking I could power through this. I was actually going backwards. I have never asked if I did permanent harm or not. I was told to slow down, quit my job and take it easy for the rest of my life. Mind you it is not like we can afford that and I may certainly have more damage and age on the some of you. What I found was it took awhile to decompress and get a home routine as I can tell anyone what vaccinations your dog needs but I did not have a proper routine at home as all I did was work and rest.

I have started my routine but no matter what I am needing to rest by noonish. I hate that but I do not care what I am doing I hit the wall at noon or at least by 1:00. I have to make that point everyday to rest. I do not always fall asleep anymore but I need to lay down. Powering through the afternoon does not work and I can honestly say I have much less head aches.

I literally had to write out what people do daily - drink a cup of coffee, read email, do any meal prep for dinner.... I did not have this in my head at all in my life since SAH. Now I still struggle with it and have to make a list ( ok I make several of the same thing!!). But now I can do a daily check list. "Task" may be only cleaning a kitchen drawer but it is a "task".

Working Saturday morning is a kick in the teeth to me......augh... it wears me out and I have to spend most of the weekend recovering from using so much brain energy. I also administer medications to hospital pets and boarders on weekends 3-4 times. I work Monday morning is the final blow. I am back to normal by Wednesday. But I do not care if I go to the doctors or go anywhere I am wiped out like I worked by noon. It takes so much energy but I have to give myself some credit as I am doing more like menu planning ( Gosh, that is a CHORE for my brain), and keeping up on things at home. As well as I am rested enough to add stretching / yoga, brain games and other things that are good for my health! Plus I planked for 30 seconds today!

[JayKay]

This is my main problem! I'm just 9 days off my fourth anniversary and it still hits me like a ton of bricks sometimes. I have got better at "pacing myself" but it's not always possible. I also have to contend with very low Vitamin D and psoriatic arthritis, both of which can make you tired. I work in the NHS and I went back to work gently, 10 hours a week, after about a year. Then at 2 years I got a part-time job 18.5 hours which is a jobshare. Luckily this means I only have to get up early 2 days a week. I don't know how I'd cope at all if it was every day.

I have recently realised that I have adjusted my ways - I used to just say yes to everything and was busy all the time. Now I'll turn things down if I'm tired. It's not been easy but now it's second nature. I don't worry about "letting people down" any more either! If I'm tired, you don't want to be around me, trust me!

Wem I'm not sure why the neurosurgeon said what he said. Look at the first line of this! http://www.stroke.org.uk/sites/default/files/Fatigue%20after%20stroke.pdf

Anyway, as long as the clinical reasons for fatigue are eliminated (vitamin deficiency, thyroid etc) then fatigue is just an after-effect we have to learn to live with.

Keep smiling

[Diduck]

Hi

I had my "event" just about same time as Jen and I have watched with interest her progress alongside mine.

I still have many issues with fatigue and have to keep convincing myself I am not lazy.

I work fulltime as a manager within a Council office and me work is complex and diverse. I find myself overwhelmed with information frequently and find the "grabbing" of my brain from many directions very very tiring and I come home exhausted most nights and sleep as soon as I have eaten the meal my husband has made for me.

There are days when I go into work knowing I am already at capacity and I find it almost impossible to block out the other workers conversations to allow me to concentrate on my own work. I use earplugs to help and ask to be ignored as much as possible. Most times now I recognise the signs building and will take a day off or finish early but sometimes work committments dont allow and I push on knowing I am not really productive and that I will pay later!! The result of trying to push through this wall for me is lost of ability to find easy words, names, tripping, crying, sleepiness and just shutdown - like a mobilephone that has just run out of battery. And much like if your phones battery was running low you wouldnt start editing all your photos or checking websites I have learnt that most times when energy is running low I must concentrate on important things and dump the rest of it

Also I still find very busy and noisy places unbelievably tiring. I was at a party last night where there was a loud disco and I was having to concentrate so hard to lip read and try to hear the conversations with people that I jus shut down after 2 hrs and we had to leave. I yawned all the way home!!!! Then went straight to bed.

But the week earlier I was at another party where I was not required to make conversation so could just eat and drink and dance and I managed the whole night without any problem - up dancing and everything.

The party last week was in a huge hall whereas last nights was claustraphobic with a low ceiling and the type of building has effected me before.

So after my rambling I would say that the wall doesnt go but you will eventually find the door in the wall which you can go through but there will be times you will find the door locked and you cant find the key. Note to self keep the key on a chain round your neck and use it before you make yourself ill with fatigue.

cheers

Di

NASAH 10/02/2010

[victoria conway]

Di

You describe it all so well with that mobile phone analogy! And you are clearly in the same boat as me with a demanding job - I don't work for a Council but as manager of a charity which deals with them in the shape of direct payments for disabled folk. And like you, if I understand your post aright, it is the bombardment of things that I can no longer deal with - of chatter, demands (why does everyone think that I should deal with theirs whenever they make them?) - and, yes, sheer noise. This year, I have not rejoined the yacht club because, honestly, I cannot enjoy those social get togethers with lots of people in a confined space.

I can't sail any more, anyway - insufficient balance - and our yacht has recently been sold - much to my relief but to my husband's regret. I'm not sure he's ever going to forgive me for not getting "better" enough to use her. He still has another boat which he owns with a friend and races that - and I am not stopping him. It isn't that I haven't tried getting "better", "back to normal" (he thinks I should be by now) - but, with the best will in the world, it just does not happen - which is one of the reasons I worry about that exhaustion wall continuing to be there - now and in the future.

I saw my hydrotherapist again this last week and told her about my crash - and, interestingly, she said - you don't crash into it - it comes up and stops you. Someone else in reply to my original post said that she had to keep trying to persuade herself that she wasn't lazy - and I truly empathise with that. But we are not lazy - far from it, we have to work brain-wise so much harder just to function. For me, just getting upstairs to bed is an exercise in brain effort of how to climb without stubbing toes and remembering where to stop and turn on the way.

Think I've lost a plot here on what I was trying to say - not abnormal these days! I think it's just I've come to a conclusion that I should not beat myself up about being less capable - just wish others could feel the same.

Edited February 2, 2014 by penny
Paragraphs/line spacing inserted for easier reading

[JayKay]

Wow it's amazing how similar we are isn't it? I can't deal with lots of noise either. At work I'm coping because it's part-time, but I do relish the days when I can sit in a back office and get on with it (normally I'm in the open plan office). I don't do well with big gatherings any more either.

The noise levels really just overwhelm me, and it's no fun at all! I too try and tell myself I'm not lazy. My relationship broke down for more reasons than I'll go into here, but I did feel he didn't understand why I wasn't back to 'normal', even though I'd say he's jolly lucky I wasn't more disabled personally!!

Anyway, I like the fact of not crashing into the wall but the wall coming up and stopping you. Great visual!

Night all

[MaryB]

Love this "you don't crash into it - it comes up and stops you". Very good line. I may add I have been a on stimulant for about 10 months and I still crash by noon. If I do not take it I crash 2 hours after I am up in the morning. I hate taking it but literally was very interesting in the beginning how light bulbs were being turned on all of a sudden.

I really look at the fatigue wall as you are just doing too much, I make time at noon no matter what that I am going to rest "before" the wall "STOPS" me. I am missing work and when I go there either I think I can push it like a crazy person again or I am just overwhelmed by noise and commotion

I am always so surprise when I am in some office when it is so quiet- I think I could work in a quiet place but I do not have the attention span to start a new job.

[Winb143]

At least we know we are not imagining it after JayKays/Jens link.

I thought I was being lazy falling asleep so much, but then I said to myself "Well Win you must need a rest"

I've stopped replying to myself as I never listen !! joke.

Keep well all and when the wall comes just take things easy.

Now to send link to my hubby x

Good luck All

Love

Win xxxxxxxxxxxx

[DawnS]

I worry about being considered lazy too. I wonder where we all get that from? My partner loves housework and he gets home from work and gets stuck in. I like to have a jolly good sit down first. As he's busy, i feel like i shouldn't be sitting and will start doing chores when i am not ready. We've been together almost 14 years. He understands my fatigue and doesn't want me tiring myself out on housework....so why can't i take that at face value and do things at my own pace??

[MaryB]

I am so very happy my husband has never ever made me feel bad about my limits. There is a stage in your life when I think you just know you cannot do it all. I think medically we have seen and had our share of how lucky we are. I know it is harder for him to do more but at least now I feel I can just now carry my share with working so little hours per week. I think this is "In sickness and in health".

I was never a lazy person and still do not feel I am. I just have to do less. And it is not as important as it use to be to have a perfectly cleaned house. I should say I am a little OCD so this has been big for me to let go......personally the sounds of my husband even emptying the dishwasher breaks my ears, someday when he walks upstairs and I can hear his footsteps it literally throws me over the edge. I wish he just sat in his chair with his I pad.

I have to say that I worked my last 1/2 day today for the week with so many barking dogs I am mentally shot. I am just over the edge and finally now with working less I can wrap my head around having a meal with left overs for days like today. I totally lost cooking and it was difficult to cook, shop, plan a meal etc. The whole thing was just crazy for me and I did not get it. I am working on that now.

But when I work I give myself permission to take the rest of the day off and if I can do something it is a bonus.

I think if you were not lazy prior you won't be lazy now you are the one that over does it constantly! I would let that one go. Therapy has really help a great deal the testing to see my new IQ and where my deficits are. I learned if you are distracted and have no attention span you must rearrange how you do things.

The therapist also has helped me let go of so much stuff that really was nonsense now looking at it. She kind of scares me. But she is right and will call me out on things that "are none of my concern" at work etc. she just draws a nice line for you on getting well first. Now I really for the first time think taking care of my brain is the most important thing I can do for my husband, family and myself.

Maryb

[Diduck]

So many of us worried that people think we are lazy

Nobody who had suffered a broken leg or had a hip replacement would beat themselves up for turning down the challenge of running a marathon

Well we run marathons with our brains everyday resulting in exhaustion but because nobody sees inside our heads we feel guilty for submitting to the overwhelming fatigue

How bonkers are we??? We are our own worse enemies and need to own up to the problems instead of pretending we are the same as pre SAH

Good to read everyones responses as if helps make the problems real

Di