# "How we learned to live with ME"



## M&M (Jan 20, 2002)

Posted to the Co-Cure list...It might be interesting, at the very least...


> quote:INSIDE OUT'How we learned live with ME'Once derided as "yuppie flu", ME is a serious, incurable condition that canmake the simplest tasks impossible - as Nuala Bingham knows only too well.Her husband, Harry, tells how they refused to let it stop them leadinghappy and productive lives .The year is 1996. I'm 29 years old. I've just been headhunted by aninvestment bank. My new colleagues are fantastic; the money is awesome; andI get two months' holiday before starting work.To be sure. there are one or two minor problems. My wife. Nuala, has beenill with ME for the past 10 years. The symptoms are well known:debilitating exhaustion, brain fog. a kind of mental and physical parkingbrake that gets locked on. But that's the dark side of it. She's beengetting better and has started to train. part time, as a psychotherapist.Then we go away on holiday. Eight weeks in Spain, in a wonderful old villacrammed between the mountains and the sea. I run and swim. Nuala reads andsunbathes. We pick plums and lemons from the trees outside our bedroom,avocados from the grove beneath the house.And then it happens. Not fast, not overnight, but like a slow-motion fallinto a nightmare. Nuala becomes more ill. First a cold, then flu, thensomething more bronchial than flu, then an eye problem that turns out to beconjunctivitis. And the ME, which had been so gradually relenting, is back,fiercer and fouler than she's ever had it.We cut short our holiday and run back to England.The various specific ailments she has are treated one by one. But nobody isinterested in the abrupt decline in her overall health. There is nospecialist anywhere who actually cares that an attractive. bright, 30 yearold is having her life trashed. A few weeks later, Nuala is still terriblyill, but my new job starts and I can't afford to let it go. I hire a careassistant for Nuala and start work.This arrangement works up to a point. Nuala is now mostly bed-bound, butmore alarming is her neurological condition. Light. sound and movement are,for most people, the ingredients of life itself. But for Nuala, each ofthese things has become painful, almost unbearable. She spends much of herday in a dark and silent room. She's too ill to read, to watch the telly,to speak to people.Things go on getting worse. Our care assistant is great, but there's nosubstitute for being there myself. So I start working two days a week fromhome. Then three. In June that year, I quit completely. That was six yearsago. And, little as we've wanted to admit it, Nuala has made no progress.The physical side is as bad. The neurological side is worse.People's attitudes have varied over the years but, thankfully. there aren'tmany now who regard ME as trivial. In fact, we've found people very kindand sympathetic. But the disease still has a low profile. It's not widelyunderstood that 20 per cent of sufferers never get better. nor that bad MEis as crippling as any disease you care to name. One American specialistmeasured the ability of various patient groups to function normally. Thosewith ME often got lower scores than Aids patients in the last week of theirlives. Another researcher found that ME "caused greater functional severitythan heart disease, virtually all forms of cancer and all other chronicillnesses". So the next time you hear someone talk about "yuppie flu",please thump them.We've seen doctors, of course. Not NHS ones, because there aren't any. Thebest the average ME sufferer can hope for from the NHS is a kind butuninformed GP. In most cases, you will simply be offered cognitivebehaviour therapy, which encourages sufferers to raise their exercisethreshold. This may be modestly helpful for some, but can actually worsenthe condition of the more seriously ill. Those with severe ME haveradically reduced aerobic capacity. Telling them to exercise more doesn'tkick start them - it just kicks them.Current research suggests the illness is multi-causal - that is. lots ofthings can give it to you."People's attitudes have varied, but thankfully there aren't many now whoregard ME as trivial"Yet while MS (and numerous cancers) have no known cause or cure, neithergroup of patients is maltreated or neglected by the system in the way MEsufferers are. Fortunately for us, though, a handful of brave doctors andmedical researchers are swimming against the tide of neglect. There is workbeing done, breakthroughs are being made and patients are being cared for.To begin with, we were assiduous about trying every new approach.Travelling was hard, but I'd built a bed in the back of the car. I'd darkenthe windows and off we'd set. Our results were mixed. The more we learnedabout Nuala's condition. the more terrifyingly total it seemed to be. Wefound ways of managing symptoms, but nothing that came close to a cure.A lot of things we tried were naturopathic. Most people with ME will havedigestive problems, no matter how good their diet. When we had Nualatested, we found a range of abnormalities. So we improved her (alreadygood) diet, cutting out allergenic foods. taking key vitamins, minerals andprobiotic supplements. Naturopathic interventions help up to 40 per cent ofsufferers but though they helped Nuala to stabilise, they did little tobring about improvement.Of the other things we tried. from meditation through to allergydesensitisation, the most helpful was a blood-thinning drug called Heparin.The self-administered injections bring blood coagulability (stickiness)down to normal levels and also have an immune-boosting effect. Before,Nuala had an elevated temperature nearly all the time. These days thatpermanent low-grade flu feeling is a thing of the past.But a cure remained elusive, Little by little, our attention shifted.Instead of obsessing over the illness, we began to try to live with it. Nowwe asked ourselves: 'How can we make a worthwhile life from what we have?"The normal answers - kids, jobs, social life, hobbies - just didn't applyto us. Before her illness, Nuala had been a very dynamic type, and I hadbeen an adventure-loving international banker. Adjusting to the narrownessof our new life was a challenge of the profoundest kind.Three things saved us. The first - this is ridiculous, but I'm afraid it'strue - was getting dogs. Around the time when we would have been havingkids, we bought ourselves a puppy. Then another. Then a third. All of asudden, instead of silence, our house became full of life. We had youngbeings to care for and our house felt like a young, joyful, lively place: asick-house no longer.The second thing was family. In the rush of our 20s, we hadn't exactlydrifted away from our families, but somehow a busy and crowded life oftenseemed to intrude. The shock of illness changed our family relationshipsfor the better. We're closer to all our parents and siblings than we everwere before.And lastly, we found pleasure in the most unexpected gift of all. When Igave up work, I needed some other way to earn money. I'd always thoughtbanking was so exciting that somebody should write a book about it. So Idid. That book (The Money Makers) found a publisher and sold well. Thepublishers wanted a second book and they wanted it soon.I began talking ideas through with Nuala. Mine were good, but hers wereoften better. We talked about plot, character, pacing, atmosphere, romance- everything. I was the one who actually put words on a page, but she wasmy writing partner. We'd go over chapters, arguing about what worked andwhat didn't, The arrangement worked so well for the second book that weworked more closely on the third. And then the fourth... Just as we hadbegun to accept the new conditions of our life, there came a letter fromour doctor. He suspected that Nuala might be carrying bacteria thatwouldn't show up in normal tests. He'd been researching new diagnostictechniques and offered to test her.Within days, a blood sample of Nuala's was under the microscope - and cameback strongly positive for the bacteria in question, borrelia, which isimplicated in Lyme disease. Our outlook changed completely. Viruses arehard to treat, but bacteria can be killed. The suggested course oftreatment was high dose antibiotics combined with (yes. really) low-dosearsenic - a combination that Alexander Fleming recommended, though it'slittle used now. The treatment offered the hope of a real cure but it alsopromised a stormy ride. As bacteria are killed off, the body has to dealwith a flood of bacterial debris. This can cause the patient to feel awful- although, for once, in a good cause.Nothing is guaranteed. The borrelia bacteria can live in several differentstates and will adapt from one to another when under threat. What's more,having lived in Nuala's body for so long, they have learned how to liveunder the radar of her immune system, and made themselves at home in theplaces hardest for drugs to reach. Our doctor thinks Nuala's course oftreatment will need to last months. Even if it succeeds, she may always bedependent on drugs. Nuala has finally started a course of aggressiveantibiotic treatment. It's still very early days. but just possibly acorner has been turned. It's too soon to say. But here's to hoping._____________Harry Bingham is the author of The Sons Of Adam (HarperCollins. ï¿½6.99 - seeExpress Bookshop, page 66). For more information contact Action for ME(01749 670799: www.afme.org.uk )Harry and Nuala's ME tips:Take this illness seriously. You have a very severe condition and you can'tget better if you over-exert yourself. The longer you have the Illness thelower your chances of recovery, so get real about it early on.Sort out your diet. You know what you shouldn't eat (sugar, caffeine,alcohol, additives, and the bad carbohydrates - white bread, white rice,potatoes). You also know what you should eat (plenty of fruit, veg and goodquality protein). So do it!Cut out all gluten and dairy produce completely for two months. Nevercheat. Then, try eating dairy again and see how you feel. Wait two weeks.Then try eating gluten. See how you feel. If you feel worse, then cut themout for good.Take really good multivitamin and mineral supplements. All ME suffererssuffer from poor digestion and will be low in nutrients, no matter how goodthe food they eat. We'd also recommend supplementing with CoQ10, NADH,vitamin B12, magnesium and fish oils (all available from health food shops).Aim to get nine hours' good sleep a night.Become expert in your Illness. Read From Fatigued To Fantastic by JacobTeitelbaum (ï¿½12.99, Avery, page 66), and use the Internet -www.immunesupport.com is good.Get your doctor onside. GPs receive almost no training in ME but you canexpect them a) to believe you, and
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