Tuesday, 15 February 2011


What does it mean to you?

I'd really love you to think for a moment. Is there a time when you could honestly say you felt exhausted? What had you done? How long did it take? How long did it last? How did you feel?

I don't mean a bit tired. I don't mean too many late nights or the pleasant aches of a day or two of heavy gardening. I mean burnout. The total inability to get out of bed or walk up the stairs or leave the house.

Maybe you had twins and suffered sleep deprivation for months on end. Perhaps you were a high flying workaholic who literally worked yourself into the ground. Perhaps you were struck down by a mystery virus that left you helpless and useless. If you've ever had major surgery, you might remember that even having a bath or walking to the nearby shop left you incapable of doing anything but going back to bed.

When someone with a chronic illness or disability says they're "exhausted" I think this might be the hardest symptom of all for able-bodied people to really understand.

There are countless auto-immune conditions like lupus or bowel disease that leave sufferers battling an almost constant exhaustion that can be worse than all their other symptoms combined. Many other conditions list exhaustion as one of the main symptoms including heart disease, cancer and lung disease. Medications used to treat illness or disability are often debilitating in themselves - chemotherapy, TNF-Alpha blockers, anti-psychotics - the list is endless.

I'm exhausted today. First a party, then a 3 year old who doesn't feel like sleeping at night, then a 260 mile trip to Cambridge for hospital, to say nothing of the endless articles and campaigns squeezed into the gaps have slammed me into the sofa. I'd be in bed if bed were an option. I'm sure those at Broken of Britain and other online disability groups won't mind me saying that they're exhausted too. The effort of making campaigns like One Month Before Heartbreak and Project V successful cost us all dearly and you'll normally find that for days afterwards, their twitter feeds go silent, their mails left unanswered.

We'd love to keep going. I can't tell you how much we'd all like to bang away at this 24/7 until our voices are heard, but we simply can't. And I do mean can't. Remember, my life's motto is "there's no such word as can't" but true exhaustion makes a lie of it. How will I collect my 6 year old from school later? How will I make lunch? Who will get the toddler dressed? Forget tidying or cooking or washing, I'll be lucky to make it to the loo. Literally. It's about 15 steps away - not even upstairs - but the effort seems inconceivable.


I broadly accept the argument that most people are better off in work. Being unable to work is depressing. It makes you lose confidence in your talents and abilities. It is insular and isolating.

I am, however, still waiting for just one MP or minister or health assessor to tell me exactly how people with conditions that cause permanent debilitating exhaustion (not to mention all the other painful, debilitating or embarrassing symptoms they deal with) are meant to hold down a job. Often an attempt to mould our mutated genes into any kind of routine just makes things worse - we get sicker, we feel more exhausted and we put ourselves swiftly into a hospital bed. So no, work isn't always the best answer or even viable. 

Yet, it is these very conditions that are most often refused state support ( it's almost unheard of for anyone with a "long term variable" condition to get DLA for instance) They are the most likely group to be put into the Work Capability Support Group of ESA, meaning that they now have just one year to find employment that replaces their benefits or they will no longer receive any help at all. Nothing. Their entire ESA payment will be stopped. Nearly £5,000 a year stripped from worthless nobodies in the eyes of our society. 

Exhaustion holds all the cards. When it hits, you're incapable of doing a thing about it. I know you probably won't believe me if you've only ever known "a bit tired" but it's true. Our bodies use real exhaustion as the very last warning - "rest or you'll die." I'm really not using overly-dramatic or emotional rhetoric, it's just the truth. If we had nothing else to battle - and some of our battles are mighty - exhaustion would be enough. 


  1. I was released from hospital in 2006 after having contracted Legionnaires' Disease. I was genuinely shocked to find that for some weeks a short walk left me panting for breath, that going up and down stairs took ages... I'm fortunate that in time I made a full recovery - but certainly in that time no matter how much I may have wanted to return to work it would have been impossible. Even after six months I only managed part-time. To have that hanging over you permanently is inconceivable - and to lose benefit because of it is nothing short of scandalous.

  2. Exhaustion. I haz it. I probably won't be online for a while, completely fried.

  3. I remember giving my first sicknote to my manager at work, while I was still undergoing all sorts of tests.

    Because I was (obviously) pre-diagnosis at that stage, my GP wrote "exhaustion" on the sicknote as the reason she was signing me off work.

    I was met with mockery, disbelief, and a suggestion that I should have kids and then I'd know what exhaustion was really about.

    I'd have been quite angry, if I'd had the energy for anger. I felt very upset, but only after I was tucked up back in bed and my brain had a chance to process what had happened. At the time, I just sat there in silence, because I was literally too exhausted to make any kind of response outside the notes I had written about passing along my workload.

  4. I have had Chronic Fatigue since I was 14. That's more than half my life. It affects every single thing I do.

    I can't hold down the freelance career I loved. I can't go on weekend breaks because I need a day in between things to recover and paying to sleep in a hotel bed in a different city is beyond depressing. I can't have sexual relationships easily because I'm too tired for extertions of shagging.

    I will never be able to have children because knowing my body as I do, I wouldn't not to be able to withstand pregnancy, childbirth or those sleepless nights that come with babies. Sometimes I go without food and showering for days because I'm too tired and worry about slipping or cutting myself. I live alone, so have no one to help me.

    I'll probably die younger than I should because I can't take the amount of exercise I need to keep my heart and joints healthy. I have to forgo most of the food I enjoy because deprivation is the only way I can keep my weight down to a healhty level since I can't exercise.

    Sometimes I want to lie in bed and sob with the unfairness of it all, but I don't have the energy.

  5. Great post Gherkingirl. You sum up very well how most of us feel.

    Talking of weekend breaks etc, hubby and I visited Memphis once. I was beyond excited as the Rev Al Green (Yep, THAT Al Green) still holds a genuine gospel service sometimes and we'd timed it to go to one of his services.

    We'd been travelling (by motorbike !!?!?!?) for about 10 days by then, and I was simply unable to get out of bed to go. No matter how desperately I wanted to, my body simply wouldn't comply.

    I'm eternally gutted to this very day to have missed such an amazing experience.

  6. I'm on Oncology nurse working on a chemotherapy ward. Many of our patients describe just such a state of total exhaustion.

    Thank you for the insight into the issue, it will help inform my practice in future.

  7. Keith - You have no idea how comments like yours keep me going. Thank you so much, not just for reading, but for thinking too! I bet you're a great nurse.

  8. Hope you have some time to just be for a few days. Its hard when you have to say Do you know how many days this week I have gone to bed hungry because I wasnt able to get up to get something to eat. Or explain how it feels to feel like spend most of your day hungry, thirsty or wanting the loo but you just cant move. And theres noone to help you either.

  9. I am able bodied, but not always able minded (if there's such a terminology) I'm very fortunate I've never had any of the conditions you've listed (other than baby crying induced lack of sleep) or indeed the awful chronic fatigue Gherkingirl suffers from. Depression has had me laid very low at times, whole days when my son was in nursery, unable to get off the sofa. Later somehow I've been able to blog, not knowing where the energy came from because there's no energy for anything else.
    You are right though, swathes of society do not understand or are not able to empathise with exhaustion (did you see Newsnight last night?! Welfare to Work? I'd have written about it today but I went off track onto something else - no comprehension of any barriers in that reportage)It's really important you are here. It's absolutely brilliant that you are here.
    I'd say give the blogging a rest after the weekend you've had, but I know first hand how difficult that can be when there's something you really need to say!

  10. Oh look, another fun subject that I have a little too much personal experience with! :)

    The word 'exhaustion' to me is when you feel physically and mentally drained. The word 'tired' means you need to sleep.

    I think the word fatigue is the best word used to describe the debilitating state that is beyond exhaustion, tiredness, weariness, run-downess, etc that is associated with many conditions… maybe add stupor into that to get an idea of how it feels!

    I assume Sue is speaking about this feeling as a Crohn's sufferer… which I believe is caused (amongst many things), mainly due to the lack of absorption of nutrients in the large & small intestines (specifically, Vitamin B12).

    Also having mild Crohn's I can understand how this feels. I also have a condition called Haemochomatosis, which is where your body decides to store too much iron in the organs. Before I was diagnosed, the fatigue from this was awful… horrible. It is often misdiagnosed as ME, CFS or Fibro, so it gives you an idea of how bad it can be. Compound that with the fatigue from Crohn's…

    Back on topic… trying to explain to people how you feel when they are saying, "Just have a nap" or "You should get some sleep at night" is very difficult and frustrating. You'd think they'd understand when you say it hurts to be awake and when you can't physically lift your head off the desk once you put it there to rest… just for a few minutes… zzz…

    (Sorry for the blabbing on, but I thought the personal side would explain where I'm coming from… :))

  11. Not blabbing on Kevin.
    I had a boss once who thought so much of me, she'd noticed when I went pale with exhaustion. She'd let me take a power nap under my desk.
    Now, if I can only find another boss like that....

  12. I keep getting asked from people who look from outside on my life "My god, how do you do all that?" honest answer "I have no idea." I guess the idea that I will not have my son going hungry, sleeping in his own filth, go unclean and unwashed, go unloved and uncared for means that I will literally crawl if I have to (and have done) to get him what he needs. I go without bathing or washing or eating a square meal (I ate biscuits and leftover bacon today). I make myself even more ill because quite honestly, who else is going to do the job?

    I think people must assume therefore that if I was REALLY bad I just wouldn't do any of the above. But my over-developed maternal instinct won't let that happen. Granted, when I finally grind to a halt and end up in hospital it's as if I let everyone down by not being made of steel anymore and then I am instructed to "pull yourself together, you don't fall apart like this, be STRONG."

    Yeah...even steel can get brittle, and rust. Eventually, it breaks with enough pressure.

  13. I was exhausted last night. I have ehlers danlos hypermobility type.

    I had done nothing in particular as normal exertion is difficult at the best of times so overdoing it is an occasional option.

    I know you get exhausted because I 'got' every single word you said in its regard.

    Sometimes when exhausted and I don't really know if others experience this. I am so overtired I can't even sleep.

    Constant pain, despite strong medication leaves me exhausted. Exhausted is not a friend, or even a happy companion. It is the reality that is my life living with ehlers danlos.

    Exhaustion for me is not just a physical thing, it affects my cognitive abilities.

    It is not depression, hidden behind a cloak of sleep. If I could in one week have one day that the overwhelming feeling of exhaustion does not hit me hard if I was physically able I would dance with joy. Then sometimes when I think I couldn't be any more exhausted I lose the ability to move at all. I fight with exhaustion a lot, I say no to it, I push beyond the pain barrier, then despite pacing as I have been told to do, despite distraction, relaxation techniques and all the multi disciplinary approaches taught to me on managing my condition. I find myself in a place I imagine that must be close to coma, on total shut down.

    & Again..

  14. Can I just say (if you ever come back and read the comments) You're all amazing.
    I know what you face and how bad it can be. I know we've all had times when we've wondered if we can go on.
    I love that you "get" what I'm saying, because for years and years I wasn't sure anyone ever would.
    I'm proud to have met all the people who comment on my thread.

  15. hi sue, i thought i would post this, its about a doctor who went for an atos interview and he has posted his comments:


    hope its useful