My ME Journey


In 1991, at the age of 23, I went to work on a luxury cruise liner.  Previous to this I was reasonably healthy, very physically strong and worked out several times a week lifting weights in the gym, riding my bike to work and doing dance aerobics.  I’d also spent a couple of years single-handedly renovating my Victorian house.

Within months of being on the ship I caught a fairly innocuous tummy bug.  Staffing levels on cruise ships are bare bones, however, and no-one can just take time off to be sick.  So to stop me vomiting so that I could carry on working I was given an anti-emetic injection.  The trouble being, I was allergic.  So on top of the bug I had an Oculogyric Crisis, which necessitated a different kind of injection.  I still didn’t miss a second off work.

Over the next few months I started to feel really, really tired and went from staying up til midnight with my friends to going to bed at 9pm and sleeping like the dead.  I put this down to the fact that not only was I working 7 days a week, 12-16 hours a day, I spent my off-time partying like it was going out of fashion (as 23 year olds do on their first forage away from home).  I was too exhausted to go to the gym and piled on 2½ stones (35lbs) in weight.

Luckily my contract ended in Australia, where I have family, so I spent a month in Perth doing nothing much other than eating well and resting in the glorious sunshine.  I didn’t feel back to normal but I did feel better and when I returned to the UK I started exercising again to get rid of the excess weight.  But I did notice that exercise wasn’t easy like it used to be – no matter how hard I trained I still felt tired and de-conditioned and I simply couldn’t do the amount of exercise I previously had.

Fast forward 18 months to 1993 and I was in a stressful job I despised, working long hours, and not really taking care of myself (eating convenience food and not getting enough rest).   In the Autumn I picked up a fairly minor chest infection, but over the next 4 months this was followed by tonsillitis (which left a lingering sore throat I couldn’t get rid of), colds, and various other viral-type illnesses that I couldn’t really put my finger on.  I also started to have insomnia which I’d never had in my life before.  I’d go to sleep, then wake at 1am and it would be impossible to nod back off.  I had to be up for work at 6.30am and after a few months of living on 3 hours sleep a night I felt like the living dead.  I couldn’t concentrate, my brain felt muzzy, my joints ached and by 10am every day I had my head down the toilet vomiting.  I would often spend my lunch hour asleep in the car and have to stop on the drive home to throw up.  In the New Year of 1994 I caught a tummy bug that was so severe I ended up in hospital on a re-hydration drip.  I didn’t realise it at the time but a lifetime battle with Myalgic Encephalomyelitis (M.E.) had begun.

I just didn’t get any better.  I could barely get out of bed, I felt ‘ill’ all the time like my body was being poisoned, all I wanted to do was sleep but instead was plagued with insomnia.  My muscles felt like wobbly jelly, I felt dizzy and disorientated, and all I was capable of was lying in bed curled in a ball feeling horrendous.  Initially I was diagnosed with post viral fatigue syndrome, but after 6 months my GP (who was ahead of her time in 1994) diagnosed M.E., about which very little was then known (in fact, about which very little is still known 20 years later).

After several months of resting and recuperating I was being pressured into returning to work.  A date was set to return part-time initially in the Autumn of 1994, but as the time approached I went down with yet another series of viruses (flu, tonsillitis again, and another chest infection) which left me absolutely poleaxed.  The deadline to return to work came and went.  I was still in denial that anything major was wrong with me.  I had every test known to man and nothing abnormal could be found.

By this time my relationship with my boyfriend was suffering, he was also “tired” and feeling run down, so in June 1995 we decided on a last minute beach holiday to Kenya.  With the benefit of hindsight this was absolutely ludicrous but I was frightened of losing him if I said I wasn’t well enough to go.  Of course we needed vaccinations, including really potent things like meningitis and yellow fever, and we had to take a course of anti-malaria tablets.  And something really amazing happened.  Only 24 hours after my vaccinations I felt absolutely brilliant.  I suddenly had bags of energy, I could sleep through the night, my brain fog lifted and I felt about 80% of my former self.  I felt truly alive for the first time in 3 years and set off on holiday so full of hope that I might, actually, be beginning to recover.

It wasn’t to be.  Five days into the holiday I was rushed to hospital in Mombasa with suspected meningitis, which I had bizarrely been vaccinated against only a week before the trip.  I nearly came home in a coffin and was so ill on the flight back to the UK the Pilot seriously considered diverting to London so that I could be taken to the Tropical Diseases Hospital.  As it was, I made it to Manchester but had to be wheel-chaired off the plane as I could no longer walk.  By the time I got home I truly felt like I was dying and, if I’m honest, there have been numerous occasions over the past 17 years that I’ve actually wished I had died on that trip because I had no idea the hell that was in store.

After the meningitis, my body was decimated by M.E.  I was almost totally bedridden.  I couldn’t sleep at all, despite being on some serious medications.  I was in constant pain all over my body: nerve pain, muscular pain, bone pain, shooting pain, burning pain, electric shock pain.  At times I lost the ability to speak, or when I did speak I’d developed a stammer.  I could barely sit upright or at times even open my eyes.  I was unable to chew solids and my weight plummeted to under 6 stones (80lbs).  I vomited all the time and developed incapacitating migraines.  I had seizures and my hands and feet turned inwards like is seen in head-injury victims.  I couldn’t think or concentrate.  I had severe light, sound and touch sensitivity so I couldn’t bare to watch TV or even listen to people speaking.  If someone shut a car door in the street my brain would explode with pain, which then left all my muscles twitching and jerking.  I had intermittent paralysis, particularly in my arms, and used to pass out after I’d had a bath or shower as I was completely unable to maintain adequate blood pressure.  I had severe Dysautonomia and the world would constantly spin like I was drunk. I lay alone, in my bed, with no company or stimulation for 23 hours a day for the next 6 years.  I had no idea a person could feel that ill and still live.  I prayed to die every day so that my misery would end.

The medical profession were at best dismissive and at worst abusive.  Their tests couldn’t find anything wrong, so I was blamed for my own illness.  My GP, to be fair, was the only person who genuinely knew I was ill but could do nothing to help.  I took drugs for sleep, drugs for pain, drugs for muscle spasms but they really didn’t help that much.  I tried everything to get well.  I meditated, I did yoga breathing (which put me in hospital with a terrifying relapse for 3 weeks – yes, just breathing deeply in and out decimated my body!), I tried every supplement known to man.  I tried acupuncture, homeopathy, reflexology, hands on healing, chiropracty (which again made me so ill I was blue-lighted via ambulance in the middle of the night with suspected heart damage).  I ate super well – everything was organic, with easy to digest proteins in the form of high oil fish like salmon.  I ate pro-biotic organic yoghurt and sprouted my own seeds and beans.  I juiced and drank loads of filtered water.

I dumped my boyfriend.  He was only a kid and totally ill-equipped to deal with my situation.  I also dumped some so-called friends, and much of my family, including my brothers and cousins, dumped me!  When the chips are down it’s true that you really do weed out the wheat from the chaff.  I was ill-health retired from work in 1998 at the ripe old age of 30.

I battled endlessly with the Benefits Agency to get the illness and disability benefits to which I was entitled.  The first time I applied for Disability Living Allowance (which is given if you need help with daily living such as bathing or cooking and have difficulties with mobility) I was actually having respite care in hospital and my neurology consultant backed up my case, but it was still turned down!  That time I ended up employing a welfare rights solicitor to go with me to tribunal.  It took 14 months, I won my case, but it had taken so long the renewal forms hit the mat before the ink was dry.  They turned my renewal down and the whole process began again.  This happened every 18 months for the first 8 years of my illness, until I threatened to sue them for harassment.  I was then given a lifetime award of disability benefits (although with the recent changes in the welfare state this is now under threat).

With my DLA I could afford to employ a Carer for just 6 hours a week, to do things like change my sheets, clean my home, do my shopping (the internet was in its infancy then folks!) and drive me to medical appointments.  My mum, bless her heart, made my main meal every day (after doing a full day at work herself) and my dad drove it round to my house on a tray then microwaved it for me (leaving his own meal at home stone cold every day in the process!).  Looking back I’ve no idea how I survived.

In 2000, at the start of the new Millennium, I gave up trying to get better and concentrated on simply living with my disease.  I stopped all the supplements and treatments as none of them had helped to any significant degree.  I developed a pacing schedule, where I alternated periods of activity (eg. 10 minutes on the phone) with periods of rest (usually a whole hour) throughout the day.  I ate as well as I could, bearing in mind my energy limitations in preparing food or juicing fruit and veg.  I kept this up for a whole year before I began to see my body start to stabilize, but eventually I started to see tiny tiny changes in my stamina and ability to sleep for longer periods.

I bought a computer, taught myself how to use it, and began to have a social life via the world wide web.  It was wonderful to speak to other people in my position and I made friends that I still have to this day.  And then Tesco.com was invented and I was actually able to choose my own groceries and have them delivered to my home.  Yippppeee!  I’d been eating the same food for 7 years as I had no idea what other products were available in the  shops.

Another 4 years followed where I saw periods of slight improvement although these were tempered by terrifying relapses often for absolutely no reason.  Some of them lasted for several months and I had no idea at the time if, or when, they would end.  I treated myself to a small mobility scooter, and managed to go outside on it for about 20 minutes when I was having a ‘good’ enough day.  It felt wonderful to be out in the world again, even if the trips made me feel like crap!

By 2003 I had improved enough to use my Disability allowance to buy an automatic car, a little Vauxhall Corsa.  I loved that car.  Whey-heyyyyy to independence and being able to visit my parents house under my own steam for the first  time in 8 years!  And because of this mobility I was able to finally move house from the noisy town to the peaceful countryside, which I did in 2004.  I love my little cottage and its view of the rolling hills and stunning Pennine fells.

For the past 9 years my health has been relatively stable, at least ME-wise.  Don’t get me wrong, I’ve had some truly terrifying relapses which have involved hospital visits and having to move back in with my parents for months at a time as I once again was confined to bed.  But thankfully they haven’t lasted and I am, with help, able to live independently.  I still have days (sometimes weeks) stuck in bed, and have to spend a large portion of every day resting, but most of the time I can drive short distances and take my dog out on my mobility scooter or some days actually walking short distances!  I have no idea why I’ve made the degree of recovery that I have after being so ill for so many years.  A huge amount of luck I imagine, although the pacing (which is the hardest thing I’ve ever done in my life) contributed, as did eating well – I’ve written a blog post on my recovery here.  Of course, I’m now faced with new challenges in the form of my EDS and MCAD but that’s a whole other story!

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17 thoughts on “My ME Journey

  1. Ruth Heasman

    Fascinating blog, I am devouring it, thank you! I have many of the same issues as you, but mine started with rheumatoid arthritis aged 15 and have steadily grown into an intolerance for meds, and a strong intolerance to my own estrogen, histamine, bacteria and adrenaline. I’m so glad the worst of the ME symptoms are past of you and that you are getting out into the world again. I often sit in bed and lament the missed sunny days. I have two young kids so have a guilt layer on top of my own sadness at missing out. I have huge difficulty travelling long distances myself and this puts me off trying to get to see a specialist. My diagnoses came via a private clinic called Breakspear in Hemel Hempstead. I am slowly improving, but my menstrual cycle is my main source of worsened symptoms and I can’t tolerate the pill to override my cycles! Hang in there.

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    1. bertieandme Post author

      Thanks for taking the time and energy to comment Ruth and really pleased you’re enjoying the blog 🙂 Sorry you have similar issues to me though – I can’t imagine how difficult being a parent with chronic illness is.

      I received no testing for anything when at my worst either because I was too ill to travel for any help. It’s scandalous that severely ill people are left in isolation purely because they are too sick to get to see a specialist 😦 It could so easily be gotten around: you could Skype a consultant, and any blood tests could be done by a local district nurse at home! The only things I’ve really had to travel for was my endoscopy and MRI scans, but they were done at my local hospital and hospital transport was available if needed. I have NO clue why consultants won’t do Skype appointments – makes me furious. There was absolutely no need for me to travel all the way to London for my mast cell appointments – he didn’t examine me in any way and I could so easily have Skyped him from my bed on my web cam! Our doctors need to step into the 21st century. Jak x

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  2. Ruth Heasman

    I quite agree Jak. It really infuriates me that they don’t give a physical exam when you are sitting there in their office. There is really no excuse for that at all. Fortunately, the doctors at Breakspear give extremely thorough physical exams (usually every time I go, which is about once a year) and the rest of the time I have a telephone consultation, as their patients travel there from all over the world. But on the downside, I have to pay for all these appointments out of my own pocket and the neurological investigations were very expensive and probably would all have to be done again on the NHS to get any NHS treatment for them. You can’t win basically, and you need a certain minimum level of health in order to get access to treatment. It’s nutty really.

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  3. Donna Woodward Taylor

    Hi Jak, I was ‘diagnosed’ with ME/CFS at around the same time as you but fortunately after doing an exclusion diet I found that gluten and dairy products were causing most of my symptoms. I also react (but it takes longer) to egg by struggling to breathe. Until the mast cell prolems started I was doing really well. I hope that you are able to find your triggers too x

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    1. bertieandme Post author

      Hi Donna

      ME isn’t diet related so nothing I eat, or don’t eat, has any impact. I’m glad your diagnosis of ME turned out to be wrong and it was an intolerance issue for you 🙂

      Jak x

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  4. Donna Woodward Taylor

    Hi again, I think the ME diagnosis was probably correct but by reducing the things I was reacting to my body had more energy to start to recover. Sorry if I talk jibberish and contradict or repeat myself -I keep waking up at 1am and not being able to go back to sleep, so I’m not even sure what month it is half the time. I didn’t mean to sound patronising. The overwhelming fatigue never went away but the skin and tummy problems and the asthma did 🙂 x

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  5. suzi

    Hi jak I am so glad I found your website!! 😊 When I read your m.e story and the. Seizures and anaphylactic reactions and histamine I was amaaaZed you had the exact same symptoms as me!! It is like reading my own. Story!!! Do you have an email address or Facebook where I can write to you at all? x 💗

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    1. bertieandme Post author

      Hi Suzi

      Really sorry to hear you have similar symptoms to me – wouldn’t wish them on my worst enemy. I’m so sorry but I’m just not well enough, or have the energy, to email people privately as I have over 300 visitors to my blog every day 😦 If you have a specific question though please do post it here and I’ll try to answer, or if you have a specific question that’s too private to post here let me know and I’ll get in touch.

      Jak x

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  6. suzi

    Hi jak. OK I understand. Thanks.

    I was wondering how on earth did you manage to eat food with the anaphylaxis reaction? I can’t eat food for three years as my throat closes up \ trouble breathing with anything, potato. Fish, egg, rice, etc. Its the worst part of my illness worse than not walking! I currently just drink a food supplement milkshake which is only thing keeping me alive 😥 but im still losing worrying amount of weight -6 stone x

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    1. bertieandme Post author

      Hi Suzi

      What a nightmare for you 😦 My worst reactions are to drugs, not food, but I have friends with similar severe food reactions to you who live off liquid diets and really empathise.

      I don’t know what your diagnosis is. Have you been diagnosed with ME, or diagnosed with Mast Cell Activation Disorder? ME doesn’t usually produce profound food reactions, though it’s not unheard of, whereas MCAD is characterized by multiple food reactions.

      If you don’t have a mast cell diagnosis my advice would be to pursue that route. Many people, once diagnosed and prescribed mast cell stabilizing drugs such as Chromolyn or Ketotifen find they can increase the range of foods they eat without reacting (though sadly others dont).

      Jak x

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  7. Pingback: Fatigue and EDS | Oh Twist!

  8. Merle Hershfield

    Hello from across the pond! I found your blog while researching the “Subcutaneous Spheroids” and SO glad I found you at such an opportune moment!! My battery (ie, my cell battery) is down to 10.% so I’ll save my journey for another time.
    I Want to thank you for your splendid details about the hip problem; I feel like screaming whenever I stand up- or at least noticeably grunt. I Already had that hip replaced, but the ortho surgeon was kind enough to humor me with new X-rays. All the hip hardware happily in place – with the knee replacement and rods/ cages from 2 lumbar fusions. And screws in various body parts. (I made a sign to put on doors at hospitals and rehabilitation centers:
    BEWARE! FALLING BODY PARTS!!!)
    Anyway, the groin pains were a mystery to my docs for over 2 years now. I am fortunate to now have a great medical team who actually talk among themselves. More on that another time.
    I also bought my own hardbound copy of Gray’s Anatomy about 10-12 years ago. I find using (or attempting to) proper medical terminology seems to gain a bit of respect. They seem to listen more to my research and theories. My compliments to you for your impressive vocabulary. 😄
    A couple of ideas you may want to check out:
    1. I have had a spinal neuro-stimulator actually implanted into my back for the past 5 years. It’s so much more comfortable than the external TENS units. I can send more info another time.
    2. I had no food reactions until my 50’s, although I did have GERD and IBS since age 19. (I’m now proudly 68) I also had no idea why my throat always hurt and I’d lose my voice , although some family and friends appreciated that I stopped singing in public. 💡 duh! All related to the EDS.
    I Also did the elimination diet with guidance from my dietitian. OUT went dairy products, gluten, caffeine , and acidic foods- citrus fruits. Vinegar, etc. Lost 23 lbs (# of stones?) another food plan recommended by my EDS specialist (Really! Part of that “team ” I put together, finally) is the Antihistamine, or Low Histamine, diet.
    As my teenage granddaughter would say:
    TTFN! Merle

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    1. Jak Post author

      Hi Merle

      Sounds like you’ve had quite a journey :-/ But I’m glad you’ve managed to put together a good medical team.

      Thanks for the info on the stimulator 🙂

      Jak x

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  9. AJ

    Well you certainly are the embodiment of resilience, and though you’ve got me quite fascinated from a medical perspective (as I share a strange mixture of your symptoms also, complete with a few of my own), I’m really just inspired by your journey.

    Such a shame the medical establishment just is not so good at finding answers, or at the minimum, not timely with that. The only thing I am confirmed to have is Vulvar Lichen Sclerosus, but I have so many broader symptoms – ocular/aura migraines, debilitating monthly week-long headaches, a recent transition from softball sized poos (totally related to that) to really mucusy ones, that same weak feeling that you experienced after eating also with some odd electrical sensations through my body, neuropathy, inexplicable petechial rashes … just to name a few 😉

    I don’t however share the joint problems – at any rate, I won’t say I’ve “enjoyed” your story – but it certainly has given me food for thought. Thanks for the informative posts and willingness to share.

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    1. Jak Post author

      Thanks for taking the time to comment AJ 🙂 Really glad you’re found my blog helpful but sorry to hear you’re suffering.

      You don’t have to have Ehlers-Danlos to have Mast Cell Disease or Histamine Intolerance so don’t let your absence of joint issues put you off looking at MCAD or HIT as a possible reason for your symptoms.

      Jak x

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  10. Ellie

    Its bad enough dealing with multiple allergies & mast cell symptoms, I cant even begin to imagine what you’ve gone through with the ME. I can relate to the shocking amount of life spent sparked on the bed, sofa, floor, hospital. Unfortunately after many courses of antibiotics I became mentally ill aged 10 & its never left me, it was exacerbated by steroids at 14. Every time there is an inflammatory flare up I suffer joint injuries & my head crashes, it ranges from depression to psychosis to utter desolation. It doesnt respond to meds but does respond to not eating for two days. I’ve been telling the Drs for years – no one listens. Sometimes it feels like the lining of my brain(meninges) are on fire, if I control the inflammation I (mostly) have control of my mental faculties. I have at time serious sensory issues too, noise, visuals & chaotic situations can cause a shut down – without warning. No its not a panic attack or hysteria Its like something is attacking different bits in some random pattern. I have come across other people on the internet who experience the brain cramps that you say you get, Im not sure if it neurons firing off madly or something to do with ED, there is a condition with ED where the brain is herniated or trying to slide down the spinal column. Its all a bit worrying.I think you are very brave & admire your courage.

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    1. Jak Post author

      Hi Ellie

      Apologies for the late reply.

      I’m so sorry to hear about all you’ve been through 😦 Doctors simply don’t understand, or more importantly *want* to understand, these kinds of issues which is soul destroying as the sufferer.

      I really hope you can find something which eases your symptoms. I’m sure you know that mast cells and histamine have been linked to psychosis, autism, depression and other brain-related diseases. I certainly found my low level life-long depression eased when I’d been on a low histamine diet for several months.

      Jak x

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