Up Front by Emma Hart

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Up Front: Something Chronic

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  • Deborah,

    I forget that I'm walking on a thin layer of icy Fine over a deep lake of Oh Fuck.

    Brilliantly put.

    New Lynn • Since Nov 2006 • 1447 posts Report Reply

  • Zippy Gonzales,

    Your words are good medicine Emma. It's like Synecdoche, New Zealand. We are all hurtling towards death. May as well make the best of it.

    Wellington • Since Nov 2006 • 186 posts Report Reply

  • Julie Fairey,

    I too struggled with describing it. The closest I came was to say it was like feeling like you needed a lie down when you were already lying down. Just feeling so heavy that you couldn't get out of bed, despite weighing less than 60kg. For me the most frustrating part was having brain fog so bad that I couldn't even follow conversations on the telly.

    I've been so lucky to be sick for such a short period - 3 years of intense sickness (and no FM, thank goodness) followed by a couple more years of general poor health. For some strange reason getting pregnant helped a lot. I've heard it does the reverse for others. The warning sign for me is eczema on my the index finger of my right hand - when that starts I know I gotta back off big time.

    I lost friends during those three years. A med student who was always trying to diagnose me with something else, friends who relied on me to drive our social contact, people who gave up when I was too sick to follow-up their invites for a few months.

    The internet and my partner and my parents saved me. The internet gave me new ways to keep in touch with people, and to do stuff on my terms (often in the middle of another night of insomnia, which seemed like a cruel cruel trick). I remember getting keyed up waiting for 8am so I could reasonably ring someone about something once, and another time getting a rare burst of energy at 3am that I spent by going to the 24 hour supermarket and doing the food shop. Email was a lifeline - I couldn't do phone conversations and I so rarely got to see people face to face.

    I was so lucky to have the support of a partner who had the misfortune to start a relationship with me three months before diagnosis (i.e. as you outline, I was already sick when we got together just didn't know it). He's still around, and I'm still lucky.

    Ok, I'm going to stop now. But thanks.

    Puketapapa Mt Roskill, AK… • Since Dec 2007 • 234 posts Report Reply

  • B Jones,

    For some strange reason getting pregnant helped a lot. I've heard it does the reverse for others.

    How interesting. Emma's description sounds a lot like how first trimester pregnancy affected me (only for a few weeks, thankfully, and not as severe) - just like you were getting up after a long illness. I'd make it through a shower but need a lie-down afterwards. I wonder if there are any similarities in the mechanisms.

    Wellington • Since Nov 2006 • 976 posts Report Reply

  • Isabel Hitchings,

    I was so lucky to have the support of a partner who had the misfortune to start a relationship with me three months before diagnosis (i.e. as you outline, I was already sick when we got together just didn't know it). He's still around, and I'm still lucky.

    Ditto I'd just moved in with my partner when I got hit by a nasty bout of glandular fever followed by depression. I don't remember 1998 at all and am, frankly, amazed that when I emerged from the fug he was still around - a lot of other people weren't. It took a long time to get back to normal functioning and a lot longer to trust my wellness.

    I really wish I had a time machine so I could go back and unthink the dumb stuff I assumed about some chronically ill people before I got to experience first hand how someone carefully managing their energy reserves can look like they are coping far better than they really are.

    Christchurch • Since Jul 2007 • 719 posts Report Reply

  • Sacha,

    Thank you, Emma

    Ak • Since May 2008 • 19705 posts Report Reply

  • Emma Hart,

    For me the most frustrating part was having brain fog so bad that I couldn't even follow conversations on the telly.

    Yes, you're right, Julie, the brain fog is particularly frustrating. Okay, I can't stand up, so I'll just read this... well, okay, I'll watch this... wait, what just happened? Oh, this is what day-time TV is for...

    My trigger was a post-natal infection from retained membranes after the precipitate and kind of petrifying birth of my daughter. (She was nearly born at a red light I wouldn't let my partner run, and again in the hospital corridor.) But it seems fairly accepted now that CFS is an immune-system disorder and pregnancy does have immune effects, so perhaps it does 'reset' the problem for some people. Who knows. Not doctors or researchers, that's who.

    Christchurch • Since Nov 2006 • 4651 posts Report Reply

  • Joanna,

    But every time I do break my initial promises for Up Front and whine about my health, someone writes to tell me how much it's helped them and the whole thing seems humblingly worthwhile. Suck on that, Protestant Virtues.

    I like the way sickness occasionally randomly has sort of benefits - like for me, it was when I got an email from a guy in Canadia telling me he was going back on his meds for bi-polar because my writings about depression had inspired him to try and help himself too. Another fringe benefit of depression is that when your meds start to kick in, you get a week of absolute amazing euphoria, like every coffee is an orgasm in your mouth, every shower is being touched by angels etc. Do you get that with Chronic Fatigue as it ebbs? Or is it just back to business as usual? Oh, and I suppose I should have started that question with a "if you don't mind me asking questions about it..."

    Wellington • Since Nov 2006 • 746 posts Report Reply

  • Emma Hart,

    Do you get that with Chronic Fatigue as it ebbs? Or is it just back to business as usual?

    The bursts of energy, like Julie was talking about, are amazing. Euphoric. But after you blow a couple, for me anyway that happiness was always tempered by having to be so goddamn careful that you couldn't really enjoy it.

    Showering... I'd forgotten about that, about how hard it was to breathe steamy air, how Karl would have to come and check on me in case I'd had a respiratory attack and I couldn't call out and I couldn't crawl out.

    Christchurch • Since Nov 2006 • 4651 posts Report Reply

  • Isabel Hitchings,

    Another fringe benefit of depression is that when your meds start to kick in, you get a week of absolute amazing euphoria, like every coffee is an orgasm in your mouth, every shower is being touched by angels etc.

    Damn! All I got was a gradual return to the point where I could figure out which bits of shit were real problems and which were just my subconscious screwing with me. (Not that I'm complaining about that or about having been OK off meds for a decade mind - I am profoundly grateful for that)

    Christchurch • Since Jul 2007 • 719 posts Report Reply

  • Jackie Clark,

    Everyone who has a chronic illness has my most sincere hugs and loves. It's a shit, is what it is. Being tired, having chronic pain, being stuck in a fug of grey - I'm so thankful that having been through all that, you are still here, Emma, and Julie, and Joanna, and Isabel, and others who won't show themselves, I am sure. I used to think that the human spirit was pretty indomitable. Now I know that for some people it is too much, and they choose not to live. Thanks for deciding otherwise.

    Mt Eden, Auckland • Since Nov 2006 • 3136 posts Report Reply

  • 3410,

    Everyone who has a chronic illness has my most sincere hugs and loves.

    Yeah, me too. Right now I'm feeling rather grateful that, physically, I'm pretty much okay.

    Auckland • Since Jan 2007 • 2618 posts Report Reply

  • Julie Fairey,

    That's an interesting idea, about pregnancy offering a reset for some. My own experience tends to fall in line with the theory that for some with CFS it may be the result of a form of brain injury suffered during glandular fever. Maybe some of the preggy hormones did the final job of healing it?

    The basic idea of this theory, if I remember correctly, is that for some people who have had glandular fever it does this thing to your brain that puts your immune system into hyper drive, kind of like sending Super Man every time someone doesn't contribute to an honesty box. This of course stuffs everything up. Your body acts sick when it is well, and then when you are actually sick it acts like you are on your death bed. That matches my experience, but I know that it manifests very differently in different people, and there are theories that CFS covers a bunch of stuff we can't tell apart yet (kind of like how "cancer" is actually a multitude of different kinds of tumours I guess? don't know much about medical science I must confess).

    Once I was officially well, but still had to be v careful, I found that where someone else might need a day or two off work for a cold I would need a week or more. Once when I was travelling I was hospitalised with a v high fever and the doctors couldn't work out where the infection was. In hindsight it was still this extreme over-reaction, probably to a sinus infection from a cold.

    While my pregnancy with my son started out with extreme morning sickness (lost a stone, went on for 12 weeks of unpredictable vomitting, etc) after that things improved.

    I can look back to a point in time 10 years ago when we went on our first holiday together as a couple and I never even made it out of the campground we were staying in. The following time we visited I made it to the beach. The time after I climbed up a hill. Two years ago we went back with our son and I felt no particular physical weakness, although I was still breastfeeding him once a day. I think when you have CFS you have to look at your progress not day by day, or even month by month, but year by year. Even that timeframe may not be big enough for the many who are sick for decades.

    Puketapapa Mt Roskill, AK… • Since Dec 2007 • 234 posts Report Reply

  • Danielle,

    Sending hippy vibes.

    I was never ill until this year. I realised that despite doing my best, I hadn't been particularly empathetic because I never 'got it'. It never occurred to me how knee-tremblingly difficult and exhausting it would be to walk across a small hospital room and have a shower, and then put a gown back on and get back into bed. Or how long it would take. It was quite sobering.

    Charo World. Cuchi-cuchi!… • Since Nov 2006 • 3828 posts Report Reply

  • Julie Fairey,

    Showers are hard! I would go days without washing my hair because I could not lift my hands that high. On the plus side it also meant I couldn't hang out the washing ;-)

    Puketapapa Mt Roskill, AK… • Since Dec 2007 • 234 posts Report Reply

  • Sue,

    How about being a human pincushion in those first few years when you are trying to find out what is wrong. Oh that one is a winner

    Julie I am with you on the internet, it saved my life at the time, it still does. It just make the isolation not so bad, and if you are tired and need to nap nobody needs to know.

    I'm incredibly lucky the doctors winz referred me to knew about CFS. Plus I had a blood test done in dunedin through the medical school and the amazing Dr Les Simpson that showed how my blood cells were different from 'normal people' which was a indication of CFS.

    I also think I'm lucky i never had the fibro problems, So I've been able to keep crafting, But oh the tiredness and oh the mess trying to deal with my cinical depression and anxiety and sort out the difference between that and the situational depression of CFS.


    But I still miss going out at much as i want to and bailing at the last minute becuase I'm tired. But I have got better at living by the 50% rule but sneakily planning ahead for the crash if i intend to over do things like sell for a day at a fair.

    Wellington • Since Nov 2006 • 527 posts Report Reply

  • Russell Brown,

    Love and support to Emma and everyone else who has to handle these challenges.

    Who are, so far here, exclusively female. Is there some science on that?

    Auckland • Since Nov 2006 • 22817 posts Report Reply

  • George Darroch,

    Is there some science on that?

    I don't know. A few years ago I dated a recovering ME sufferer, and her experiences were fairly similar. She'd spent a year in bed before I met her.

    I've since also had some low level immune issues, and the level at which I experience these things (long term bodily exhaustion, pain) is much lower and I wouldn't compare myself, but enough to give me deep sympathy. Something that never goes away, and threatens to debilitate you is not fun.

    There are a whole lot of people surviving out there, and beating these things, and they have my sincere respect.

    WLG • Since Nov 2006 • 2264 posts Report Reply

  • Emma Hart,

    Who are, so far here, exclusively female. Is there some science on that?

    Officially, CFS is more common in women. There does seem to be a genetic pre-disposition, but also it may be a factor that men either don't report it, don't seek treatment, or don't keep on harassng their health providers for long enough to get a diagnosis.

    How about being a human pincushion in those first few years when you are trying to find out what is wrong. Oh that one is a winner

    I have track marks on my right arm from the blood tests. I really whined on my fourth anaemia test: the irony of repeatedly taking blood to see if my blood iron was low was getting to me.

    Also... massive props to our care-givers. This isn't like looking after someone for a couple of weeks' convalescence, it just goes on and on... Karl had to stop working to care for our two pre-schoolers, I was no fun at all even when I was awake. And his take is that he's really grateful to have had those years with the kids when they were little. He's a fucking hero, actually.

    Christchurch • Since Nov 2006 • 4651 posts Report Reply

  • Russell Brown,

    This ...

    He's a fucking hero, actually.

    Made me weepy. Lord know what it does for you ...

    Auckland • Since Nov 2006 • 22817 posts Report Reply

  • Sue,

    it also affect loads of nurses and schoolteachers and often people in high stress situations.

    One theory used to be that sufferers are in high stress situations then you get an infection and your body never stops fighting the infection, it's why so many people with CFS have super high Tcell counts or white blood cell counts i forget which

    Wellington • Since Nov 2006 • 527 posts Report Reply

  • Sue,

    ok is it wrong to ask which was the weirdest treament suggested by a CFS specialist doctor?

    which yes does mean witchdocotor

    I met one who recommended taking blood out of your system and then re inejecting it X hours later. And they seemed more sane than the one who recommended the copious amount of vitamin C

    Wellington • Since Nov 2006 • 527 posts Report Reply

  • dyan campbell,

    Feel better greetings from me, Emma!

    I think it's completely accepted that CFS is a very real disorder - cytokines (inflammation) gone mad - and like a lot of other hormone mediated diseases, it can certainly be triggered by pregnancy.

    You're probably read this information as it's quite old, but if you haven't it may be interesting

    Neuroendocrine perturbations in fibromyalgia and chronic fatigue syndrome

    Also - Julie Fairey:

    My own experience tends to fall in line with the theory that for some with CFS it may be the result of a form of brain injury suffered during glandular fever.

    The brain injury observation is also consistent with post-stroke fatigue syndrome - often misdiagnosed (though usually accompanying) depression.

    Chronic Fatigue

    What is more, in the first study of its kind, these doctors discovered the actual size of the adrenal glands in a small group of CFS patients was half that of normal persons. However, like Demitrack, they feel the origin of this problem may not be with adrenals themselves.

    Interestingly, immune system problems often seen in CFS correlate with neuroendocrine imbalance since adrenal hormones including cortisol regulate various aspects of immune activity. Under-functioning of the adrenal glands, called hypoadrenalism, could “encourage a state of chronic immunological activation” according to Anthony Komaroff M.D. of Harvard’s School of Medicine. Thus a Dutch study published earlier this year found that ‘the interaction between neuroendocrine system and the immune system is disturbed in CFS.’

    Any kind of inflammation reducing thing - virtually anything that will reduce the inflammatory markers in your blood - will be of benefit. There are a lot of different things - you already do yoga I think, which is excellent - but everything from fanatical gingival health to eating blueberries, salmon and walnuts every day is beneficial. Absolutely anything that helps to lower inflammatory markers,which help just about all conditions come to think of it.

    By the way, your writing is excellent and I am far from the only person here who is an enthusiastic fan. If dazzled fans could chase away CFS you'd be fine!

    Thanks - and check out what Bertrand Russell thought about idleness:

    In Praise of Idleness

    auckland • Since Dec 2006 • 595 posts Report Reply

  • Islander,

    Emma - you are so right: reading about the extremes of illness can make a person feel - much better!

    Severe clinical depression runs in my family: I'm lucky, I'm just dysthymic (low grade depression, long-term, no effective treatment) but it has echoes (apathy - did you know it used to be considered a cardinal sin?! - and the desperate difficulty sometimes of finding a reason to get out of bed, let alone showering & getting on with life.)
    I am truly lucky inasmuch I know what real depression is like - a vicious & disabling & life-threatening disease- and I learned relatively early the distinction between the 2.

    I thank you very much - and others on this thread - for making poignantly clear- that recovery is possible and life *can* be worth living.

    Michael King had CFS for the last decade of his life...

    Big O, Mahitahi, Te Wahi … • Since Feb 2007 • 5643 posts Report Reply

  • Islander,

    dyan C - that's a really interesting observation apropos gingival health: I've had rotten teeth & fraught gums since I was a small kid.

    However, I cant *stand* people poking round in my mouth, and gave up on dentists 2 decayeds ago.

    Another good anti-imflammatory = beetroot juice.

    Big O, Mahitahi, Te Wahi … • Since Feb 2007 • 5643 posts Report Reply

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