It often seems to me that many ME sufferer's stories are quite similar in terms of the way their illness began & developed ... but of course in & around those basic stories flow very individual experiences, pains, and joys. I want to share my M.E. story with you, but I also want to encourage you to share your own in some way. Maybe in the long run those stories might cause some change in people's attitudes about & understanding of M.E. - and that might lead to better treatment & more respect from our friends, family & doctors; more bio-medical research; & new treatments - which might eventually even lead to a cure!
And so, onto my story!
I somehow managed to get home, and spent the next several months barely leaving the bed or sofa, at times just about avoiding being hospitalised, with my housemates looking after me as well as they could around their own busy lives ... slowly getting more and more behind on my university course. It was glandular fever/mononucleosis. Believe it or not, this was the second time I'd been hit by it in my life - first having had it when I was in my mid teens, directly after a bout of chicken pox. Again, I had had chicken pox before, as a baby. Now, you're not meant to be able to get glandular fever OR chicken pox more than once in your life, so there was definitely something unusual about this picture right from the beginning. Wasn't I lucky!?!
Despite how ill I felt, my first instinct was to push through my symptoms and go back to work - but I couldn't, because being a nurse, I couldn't return to the wards until the glandular fever had run it's course, due to the infection risk. Still, I told myself, eventually it would be gone, and I could catch up at uni, and get on with my life. It could be worse.
Eventually, months later, my blood test finally came back clear, and I immediately pushed myself back into my busy uni schedule again - this time working even harder, to catch up on all the work I'd missed. To be honest, it was a terrible time. I'd have to painfully force myself through my lectures, with a LOT of caffeine ... then in every break, small or long, I'd literally lie down in a corner of the common room, near my friends, and fall asleep! Looking back, it was just insane to have gone back to uni in that kind of state ... but I had no idea then that doing so could trigger a permanent condition. (I'd spent my whole life, pretty much, working hard despite numerous and constant illnesses - this wasn't any different, right?) Well, despite the struggle, I DID manage to graduate, albeit several months after the rest of my class.
Fast forward through the next few years of working as a Neonatal Nurse in a highly pressured Intensive Care Unit; (for the first few years managing to work full time, then dropping to part time as my health began to deterioate and I was literally unable to keep up the pace), getting diagnosed with post viral syndrome, then M.E., getting married - to a man I loved very much but who turned out very quickly after our wedding to be abusive both emotionally and physically (but that's another story!); & finally leaving said man ... to 2003. I was living in a rented house with a good friend, just a few weeks after a very sudden flee from my marital home - feeling like I was finally free, and could live my life the way I wanted again ... when I was struck out of the blue with a really serious kidney infection, which landed me in hospital for a week.
And that's when my life fell apart all over again. The infection finally cleared up, of course, but between that and, I imagine, the stress of leaving my husband, (within a judgemental church environment) my M.E. went into a major relapse - my biggest ever. This was around 8 years ago, and I haven't been capable of working a day since. Looking back, it just seems so unfair. I'd worked so hard to get where I was in my career, and had gone through so much over the previous few years - finally breaking free of an abusive relationship - only to be landed in a place worse than any I'd ever been in my life!
Over these years of extreme illness, I've had to learn that there are some things in life that you can't just push through. (No matter how much your doctors and the benefits system might like you to!!) It feels impossible to convey to you just how bad things have been over these years. How can I describe the days, weeks, months spent lying in bed, covered in sweat because my temperature can't regulate itself, my body releasing insane amounts of adrenaline for no reason whatsoever causing my heart to pound often at over 140 beats per minute - staring at the wall in semi-darkness, because even watching the goings on in my bedroom was too overwhelming for my brain and would cause an increase in the heavy, crushing exhaustion that felt like I was being literally pulled and pushed into my bed - like somehow gravity was overwhelming me. Not to mention the ever-present pain : Muscle pain, Bone Pain, Migraine, Burning Pain, Sharp, Dull, Numb, Weighted, Claustrophobic, Spasms - & many other types.
At the time of writing this, I've been completely bedbound for over a year, & my pain and fatigue are so far showing no signs of letting up, not to mention the massive & rather scary list of a zillion other symptoms - most of which go completely unchecked & even undiagnosed by a doctor, since I live in the inner city, and our doctors surgerys have little money or resources, and home visits are almost an impossibility. (I've had a home visit a grand total of once in the entire time I've been housebound!) Had I a different condition such as cancer, I would receive the medical care I needed despite being housebound - but in the UK, ME is belittled by the majority of medics - both seen and treated as either extreme hypochondria, or other psychiatric illness of some sort. Doctors are strongly encouraged not to run tests of any kind after someone has been given a diagnosis of ME or Chronic Fatigue Syndrome (as most of the medical world has now been taught to view ME). In fact, many of the tests which would prove there is a physical disease process, such as immune tests, are absolutely unavailable on the NHS for ME patients!
My condition waxes and wanes a lot, but in the last 8 years I don't remember a single day when it's been a simple task to just leave my bed and get to a bathroom, brush my teeth, make a cup of tea, or well - anything at all, really! Every piece of energy I use has to be paid back in increased symptoms at some point later - like my body is demanding taxes. And all the while the world goes on around me, my friends and family moving on with their lives, building families and careers ... and me feeling stuck in one place, with an illness that isn't understood, or even believed in by the majority of medical practitioners, never mind by the public in general. This illness has ripped almost everything of value away from me, so I've had to find new ways to hold onto hope during some very dark times. I suppose it's become kind of a mantra to always try to find, and hang onto, the good and beautiful and hopeful things in life - however small ... and to find meaning in my own life where at first glance there seems to be none.
Thankfully, and rather beautifully, although still severely physically disabled & sick, some of my neuro symptoms have eased up enough this year to be able to start coming online, on my laptop - me lying slightly propped up in bed - and I've been able to start to correspond with some wonderful women & men (& their carer's) who have ME or other similar, illnesses. It's suddenly given me the chance to actually participate in the 'ME world' again, and it's been wonderful. After such a long isolation, it's been nothing short of joyful to find like-minded people who are still fighting, still hoping, still dreaming! These people around me online are nothing short of heroic - I only wish society would see it that way!! Knowing on a personal level rather than head knowledge, that there are people out there like me, fighting this fight, and supporting each other to the best of their abilities has given me a new strength to keep fighting for myself.
To leave a response to this page, please visit the associated blog post : Welcome to my Life. :)
And so, onto my story!
15 years ago I was a relatively happy nursing student, working night and day to graduate. I had friends, a life, and a purpose. I was working 5 day a week shifts on the wards at Alder Hey Childrens Hospital, running a Sunday School at my local church, involved in lots of other projects, plus of course doing my uni work. I didn't have a spare minute to myself most days - and I loved it!
I was at work one day in 1997, (Ironically I don't remember the actual date, due to my swiss cheese-like memory, but it was the beginning of summer) on an Ear, Nose & Throat ward, when I very suddenly started feeling very, very ill. I was trying to just finish my shift so I could find my way home on the bus and collapse in bed, thinking that I must have a chest infection or something coming on. (Those are regular occurrences in my life due to having the wonderful combination of asthma, & a crappy immune system) I remember I felt so extremely exhausted that I could hardly hold my head up. I was bending over my paperwork at the nurses desk, struggling to concentrate - the noise of the ward pounding around my head, when a nurse standing behind me uttered a startled cry. Turns out I had a gland literally the size of a golf ball on the side of my neck. Lovely!
I somehow managed to get home, and spent the next several months barely leaving the bed or sofa, at times just about avoiding being hospitalised, with my housemates looking after me as well as they could around their own busy lives ... slowly getting more and more behind on my university course. It was glandular fever/mononucleosis. Believe it or not, this was the second time I'd been hit by it in my life - first having had it when I was in my mid teens, directly after a bout of chicken pox. Again, I had had chicken pox before, as a baby. Now, you're not meant to be able to get glandular fever OR chicken pox more than once in your life, so there was definitely something unusual about this picture right from the beginning. Wasn't I lucky!?!
Despite how ill I felt, my first instinct was to push through my symptoms and go back to work - but I couldn't, because being a nurse, I couldn't return to the wards until the glandular fever had run it's course, due to the infection risk. Still, I told myself, eventually it would be gone, and I could catch up at uni, and get on with my life. It could be worse.
Eventually, months later, my blood test finally came back clear, and I immediately pushed myself back into my busy uni schedule again - this time working even harder, to catch up on all the work I'd missed. To be honest, it was a terrible time. I'd have to painfully force myself through my lectures, with a LOT of caffeine ... then in every break, small or long, I'd literally lie down in a corner of the common room, near my friends, and fall asleep! Looking back, it was just insane to have gone back to uni in that kind of state ... but I had no idea then that doing so could trigger a permanent condition. (I'd spent my whole life, pretty much, working hard despite numerous and constant illnesses - this wasn't any different, right?) Well, despite the struggle, I DID manage to graduate, albeit several months after the rest of my class.
Fast forward through the next few years of working as a Neonatal Nurse in a highly pressured Intensive Care Unit; (for the first few years managing to work full time, then dropping to part time as my health began to deterioate and I was literally unable to keep up the pace), getting diagnosed with post viral syndrome, then M.E., getting married - to a man I loved very much but who turned out very quickly after our wedding to be abusive both emotionally and physically (but that's another story!); & finally leaving said man ... to 2003. I was living in a rented house with a good friend, just a few weeks after a very sudden flee from my marital home - feeling like I was finally free, and could live my life the way I wanted again ... when I was struck out of the blue with a really serious kidney infection, which landed me in hospital for a week.
And that's when my life fell apart all over again. The infection finally cleared up, of course, but between that and, I imagine, the stress of leaving my husband, (within a judgemental church environment) my M.E. went into a major relapse - my biggest ever. This was around 8 years ago, and I haven't been capable of working a day since. Looking back, it just seems so unfair. I'd worked so hard to get where I was in my career, and had gone through so much over the previous few years - finally breaking free of an abusive relationship - only to be landed in a place worse than any I'd ever been in my life!
Since that initial relapse, I've bounced between being 'only' housebound & being completely bedbound - with the occasional days, every few months, when I was well enough to be able to leave the house in my wheelchair & do something fun (albeit iced with a layer of pain) - and boy did I make the most of those few & far between days!! Each day I woke up unable to leave my bed, I'd tell myself a good day was coming, I didn't know when, but it was coming! And they gave me the hope to continue on.
 |
| Kiya & Jessa |
The friend I was living with at the time of my relapse generously and lovingly took on the role of being my carer, and she has continued to do so ever since, often giving up a life of her own to do so. I can honestly say that she is the most amazing best friend you could ever hope for! Her friendship has been the rock that I've stood on for many years now - I wish I could adequately describe how much she means to me. She has literally saved my life over and again, sometimes on a daily basis, when hope has waned. She has no literal responsibility for me, yet has taken on more than most people ever would, with rarely a complaint.
Alongside her friendship have been my ever faithful & funny West Highland White Terriers. (Who, sadly, have in affect become almost as housebound as me as there is no-one able or willing to walk them regularly. One of the things I most grieve for, both for my sake and theirs, is the simple ability to be able to take my dogs for a run in the park!) It makes such a difference just to have one of them curl up behind my knees and go to sleep! Amazingly, they've learnt to be much more gentle with me than they would have needed to be before.
"My friends have made the story of my life. In a thousand ways they have turned my limitations into beautiful privileges, & enabled me to walk serene & happy, in the shadow caused by my deprevation."
~ Helen Keller ~
Over these years of extreme illness, I've had to learn that there are some things in life that you can't just push through. (No matter how much your doctors and the benefits system might like you to!!) It feels impossible to convey to you just how bad things have been over these years. How can I describe the days, weeks, months spent lying in bed, covered in sweat because my temperature can't regulate itself, my body releasing insane amounts of adrenaline for no reason whatsoever causing my heart to pound often at over 140 beats per minute - staring at the wall in semi-darkness, because even watching the goings on in my bedroom was too overwhelming for my brain and would cause an increase in the heavy, crushing exhaustion that felt like I was being literally pulled and pushed into my bed - like somehow gravity was overwhelming me. Not to mention the ever-present pain : Muscle pain, Bone Pain, Migraine, Burning Pain, Sharp, Dull, Numb, Weighted, Claustrophobic, Spasms - & many other types.
How can I explain what it's like to experience paralysis for hours or days at a time, where I couldn't even lift my finger, or take a drink without help. Where I would jump awake from a restless sleep, terrified because I was barely able to open my lungs & breathe, trying to speak or reach out for help but being completely
locked in. Trying to take my mind to a place of beauty - anywhere that wasn't my dark bedroom where the paralysis, pain, fatigue & almost complete isolation were slowly but surely winning the war for my sanity & my hope. But I struggled and fought and never quite let go of my last strands of hope. Though some battles have perhaps been lost over the years, I refused, and refuse, to let this illness win the war, because the war is for my very life.
"In the midst of winter, I finally learned that
there was in me an invincible summer."
~ Albert Camus ~
At the time of writing this, I've been completely bedbound for over a year, & my pain and fatigue are so far showing no signs of letting up, not to mention the massive & rather scary list of a zillion other symptoms - most of which go completely unchecked & even undiagnosed by a doctor, since I live in the inner city, and our doctors surgerys have little money or resources, and home visits are almost an impossibility. (I've had a home visit a grand total of once in the entire time I've been housebound!) Had I a different condition such as cancer, I would receive the medical care I needed despite being housebound - but in the UK, ME is belittled by the majority of medics - both seen and treated as either extreme hypochondria, or other psychiatric illness of some sort. Doctors are strongly encouraged not to run tests of any kind after someone has been given a diagnosis of ME or Chronic Fatigue Syndrome (as most of the medical world has now been taught to view ME). In fact, many of the tests which would prove there is a physical disease process, such as immune tests, are absolutely unavailable on the NHS for ME patients!
I was lucky enough to have a fairly supportive doctor & consultant when I was first diagnosed - but since moving just after my major relapse, I've been discharged from my local ME clinic because I'm too sick to undergo their GET / CBT programme (small mercies, lol) ... and I've been through several GP's, eventually finding one who appears to believe in the physical nature of ME (as she has a friend suffering from it) only after going through several terrible, un-supportive ones who essentially wrote me off as mentally ill despite much evidence to the contrary. My new GP does seem to try her best to help me, but her surgery simply doesn't have the resources to properly care for me. With no financial resources of my own, I have had no choice but to just accept the situation and struggle to deal with this illness almost completely alone. It could be by far worse though!! Believe it or not, many adult ME patients in the UK are still being sectioned and placed in mental health facilities, simply for 'believing' that their illness is real & physical! Likewise, children are being removed from their parents homes and care, because their parents believe the condition to be physical.
My condition waxes and wanes a lot, but in the last 8 years I don't remember a single day when it's been a simple task to just leave my bed and get to a bathroom, brush my teeth, make a cup of tea, or well - anything at all, really! Every piece of energy I use has to be paid back in increased symptoms at some point later - like my body is demanding taxes. And all the while the world goes on around me, my friends and family moving on with their lives, building families and careers ... and me feeling stuck in one place, with an illness that isn't understood, or even believed in by the majority of medical practitioners, never mind by the public in general. This illness has ripped almost everything of value away from me, so I've had to find new ways to hold onto hope during some very dark times. I suppose it's become kind of a mantra to always try to find, and hang onto, the good and beautiful and hopeful things in life - however small ... and to find meaning in my own life where at first glance there seems to be none.
"Believe, when you are most unhappy, that there is
something for you to do in the world. So long as you can
sweeten another's pain, life is not in vain."
~ Helen Keller ~
Thankfully, and rather beautifully, although still severely physically disabled & sick, some of my neuro symptoms have eased up enough this year to be able to start coming online, on my laptop - me lying slightly propped up in bed - and I've been able to start to correspond with some wonderful women & men (& their carer's) who have ME or other similar, illnesses. It's suddenly given me the chance to actually participate in the 'ME world' again, and it's been wonderful. After such a long isolation, it's been nothing short of joyful to find like-minded people who are still fighting, still hoping, still dreaming! These people around me online are nothing short of heroic - I only wish society would see it that way!! Knowing on a personal level rather than head knowledge, that there are people out there like me, fighting this fight, and supporting each other to the best of their abilities has given me a new strength to keep fighting for myself.
And so, I'm writing to you lying almost flat in my bed, writing a little at a time, sometimes only a paragraph before my brain or body give out, sometimes bigger chunks - just thankful that I'm able to do so at all!! I can't say how important it has been for me to connect with others with this illness after so many years of isolation & silence ... and my hope is that this post, this blog, will reach even just one person who thinks that M.E. isn't a 'real' illness, and change their mind about it.
Thanks for listening!
Susannah
"Peace does not dwell in outward things, but within the soul;
we may preserve it in the midst of bitterest pain, if our will
remains firm and submissive. Peace in this life springs from
acquiescence to, not in exemption from, suffering."
~ Francois de Fenelon ~
To leave a response to this page, please visit the associated blog post : Welcome to my Life. :)
I'd love to hear your reply and I know it'll be valued by other readers too! I always try to respond, please just be aware that it can take me some time to find the energy to do so as I've been particularly ill recently and struggling to get online. Thanks for reading! :)
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