I have been avoiding writing this post for a while now… I was scared. Frightened. Terrified of the truth. The reality of what had happened to me… it was all too much. The extent of the damage within my body… I could not handle. I was not able to accept nor admit that my time was running out. The actuality of the pathway I was on, the pathway that was leading me to the end of my life journey. The pathway I so narrowly escaped. I am ready now to finally share it, once and for all.
July 2015: I had just been discharged from my local hospital after being an inpatient on a stroke ward. During my time there I had undergone investigative tests to try and find the root cause of my health problems. The NHS suspected bone cancer, multiple sclerosis, tuberculosis, a stroke, lupus, meningitis and brain damage. On admission to the hospital I experienced paralysis of the arms and legs, I had no feeling in them at all and reflex tests confirmed it when my hands arms legs and feet would not move. I had been told that I wouldn’t be leaving the hospital until I had learnt to at least sit, stand, walk and talk again so we were preparing for a long-term inpatient stay. As the time went by it became ever more clear that the NHS could not and would not continue to try and find my cause. I questioned, “What am I supposed to do now?! Spend the rest of my life in bed?!” I was no better than when I had entered the hospital and in fact I was probably much worse. “How am I supposed to get nutrition? I’m unable to eat, unable to chew!” The stroke consultant I was under told me that I would have to be tube fed & there was nothing that he nor the hospital could do to help me as they didn’t have the ability to understand what was going on deep inside. I was deemed a medical mystery, a patient too complex to understand so ultimately, I was discharged – unable to walk, unable talk, unable to stand, unable to sit up, unable to lift my own head off the pillow. My family lifted me out of the hospital bed and into the wheelchair, lifted me from the wheelchair into the car and carried me from the car back to my bed, where I remained for another 7 months. I was stuck with the three diagnosis/labels that I already had before I’d entered the hospital:
- Myalgic Encephalomyelitis (ME) also known as Chronic Fatigue Syndrome (CFS) also known as Systematic Exertion Intolerance Disease (SEID).
- Fibromyalgia (Fibro/FM) also known as Fibromyalgia Syndrome (FMS)
- Multiple Chemical Sensitivity (MCS)
These diagnosis’ are based on symptoms only; there are no diagnostic tests to come to these conclusions. Everyone who has an ME/CFS diagnosis will have gone to their GP at some point complaining of an overwhelming fatigue/exhaustion that is DEBILITATING – meaning that it affects their every day life, preventing them from being able to undertake daily activities. The exhaustion is not comparable to the type of exhaustion healthy people experience as it’s PERSISTENT and CHRONIC – meaning it’s NOT relieved by any amount of sleep or rest. It NEVER goes away! After being made aware of this ongoing debilitating energy problem, the GP will run tests (usually a combination of blood & urine) to try and find the cause of the patient’s symptoms. The patient may then be referred to a specialist such as an immunologist, rheumatologist or neurologist for further investigation but ultimately when a cause cannot be found with the basic tests the NHS offers (yes even their investigative tests are basic), an ME/CFS diagnosis is made. As well as the ‘exhaustion’ experienced, the patient has to have just one other symptom that lasts for 4 months or more in an adult & 3 months or more in a child for an ME/CFS diagnosis to be given. These are the other symptoms people with ME/CFS may have:
Similar rules apply to diagnosing Fibromyalgia. The main symptom is widespread pain all over the body but as well as widespread pain people with Fibromyalgia may also experience:
If you go to your GP complaining of these symptoms with the predominant symptoms being pain, they will routinely do tests to identify a cause & when their tests do not show anything you may also be referred to a specialist, usually a rheumatologist. If they cannot find the cause of your symptoms then a diagnosis of Fibromyalgia is given. See my previous blog post here for more info about Multiple Chemical Sensitivity.
August 2015: Not long after I was discharged from hospital, I remember a friend asking me, “Were you in hospital because you were extra exhausted?” I was in shock; totally speechless and completely frustrated. No actually… I wasn’t frustrated, I was angry. I was so ****** angry! That’s when I realised… this is what people think! They actually believe I’m tired, i’m fatigued and i’m suffering with exhaustion! I know it makes sense considering the name of one of one of my diagnosis’ is Chronic FATIGUE Syndrome but fatigue is just one of my 30+ constant chronic symptoms I experience every second of every hour of every day of every month of every year for the last 10 years. For once in my life I was actually speechless. People actually believe I’m fatigued. I’m not fatigued. I’m not tired. I’m not exhausted. I’m sick! I don’t even remember what it feels like to feel exhaustion, let alone feeling fatigued or tired. Those years were long gone… That moment in time sparked something within me. It was when I realised that something had to change. I could not and would not accept what went down during my hospital inpatient stay. I would not take no for an answer. I would not spend the rest of my life bedridden with a diagnosis of symptoms based around the word ‘fatigue’. People are not bedridden because they are fatigued! I was a prisoner in my own home and I did not know how much longer I could go on living my life like this. That’s when I decided, ‘If the NHS are not going to find out what’s wrong with me then I will find out myself!’ I had no idea how I would do this due to the severity of my ill-health but I WOULD find a way. A way out of this living hell I endured day in, day out, 24 hours a day, 7 days a week, 365 days a year. Oh and by the way, me being speechless didn’t last long and the response to my friend’s question went something like this:
Autumn 2015: There isn’t much to tell about Autumn to be honest. Those months I spent bedridden felt like years. I managed to get dressed twice that Autumn. Once for my birthday and once for Halloween.
These photographs show a snapshot of a specific moment in time. To the outside world they represent the truth but those photos are not the truth. They are a lie. They are a front to the world and a mask of the reality of what goes on behind closed doors. I know I said I got dressed that Autumn, but I didn’t. Someone else dressed me. Someone else spent 8 hours dressing me. Between each item of clothing, I was left bedridden for an hour. Those photos show me sitting up, holding my head up high but they don’t show that the second the camera finishes clicking away I collapse in agony, unable to hold my own body weight up for more than a few seconds. The way I’m sitting is a lie. They don’t show my head as heavy as a bowling ball as if it’s being held up by a twig, rolling, falling to the side, too heavy, too big for my muscle wasted neck to support. They don’t show me being lifted, carried, cradled for 2 metres from my bed into the wheelchair only to be carried back just a few seconds later as soon as the camera turns away. They are a lie. What a difference clothing, make-up, a smile and a brave face can make. They were my shield, my armour and my protection from the world.
I fooled you. I fooled all of you. I even fooled myself. To be honest I was afraid, afraid of sharing the truth. Fearful that people would judge me because of how sick I looked. Little did I know that hiding the truth meant people would judge me even more. It led to confusion and disbelief with comments such as, “Well you don’t look sick!” and, “How can you be sick when you look so good?!” I didn’t mind the comments though. They made me feel good about myself. I was doing a good job at lying to the world. I was doing an even better job of lying to myself. I saw the look on people’s faces when they entered my room. Those close to me tried to hold back the tears at the state I was in. At times that wasn’t possible and they cried for me, cried at me, cried as they left and walked out the door. I thought I would scare people away if they witnessed the truth and that others would dislike me for who I had become. This wasn’t me. It was disease. Disease which had taken over my body, my life and my soul. I’d already lost so many people along the way. I just couldn’t bare to lose anymore. Many former friends had vanished, disappeared as the length of time I’ve been sick has gone on, whilst other friendships have flourished, prospered and thrived during these dark times. The ones you least expect to stay are the ones who surprise you and stay and the ones you most expect to be there for you the most have silently said their goodbyes.
I am grateful now to know the true meaning of friendship. Friends are those who lie next to me in silence when I’m unable to move, unable to talk. They are the friends who allow me to be comforted with their silent presence because I so terribly do not want to be alone. They are the friends who allow me to cry, not touching or hugging me because of the pain it causes to be touched. They don’t judge me. They don’t offer me their advice or their opinion. They are simply there for me and the best thing of all, are the most important and the most simple words they utter, “Emma, I understand.” They are the friends who text me letting me know that I’m in their thoughts whilst not expecting nor wanting me to spend my energy on a reply. They are the friends who ring my parents for updates on my situation, offering their help and their assistance, asking if there is anything at all they can do to lend a helping hand. They are the friends who offer to take care of me for the day or for the night so my mum can have a break from providing 24/7 care. Equally they are the friends who understand that being here for me involves them not being here for me, physically I mean, as I need time and space. They are the ones who say, “Even if it takes another year, another two for me to visit or for us to meet again, I will still be here for you. No matter how long it takes.” They know a friendship with a sick person, like me, is an uncertain and unreliable one to say the least. It’s been two years now being bedridden and many of those friends are still here, waiting for the day we meet again. I only hope that one day I will break away from disease and will be able to return the gift of friendship to those who matter the most. Sadly, I know of others who aren’t as lucky as me; they have lost friends; they have lost family; they have lost them all. So spare a thought, a text, an email or a card for those who you know who are sick, who are struggling and who have been left all alone.
December 2015: Let’s get back to the story shall we… where were we? Christmas was almost here and our extended family had arrived for our annual Christmas celebration. My uncle transferred me from my bed to the downstairs sofa. I guess I’m like a baby who can’t do anything for itself (at times my 2 year old and 4 year old nieces helped my mum to take care of me). So on that day I lay down for a couple of hours amongst the family; my feeble attempt at joining in with the Christmas festivities. Those couple of hours were the only celebrating I did that Christmas, it took its toll and after those couple of hours my body had nothing else left to give.
From reading my previous blog posts, you ought to know by now what was destined to come next?! Here we go then… In typical ME fashion… following those couple of hours I spent lying on a sofa, a downward spiral occurred. However, this one was about to trump them all. As the years went by, each significant deterioration was BIGGER and more SIGNIFICANT than the last. Almost as if ME was trying to show off and it had to out do itself every single time! 1 week later, 2 weeks later, 3 weeks later and the downward spiral continued… breathing became more and more difficult as the days went by. There was someone above me, pushing me down under the water… forcing me, trapping me, drowning me as the air was quickly running out. Whoever it was released me, allowing me to fight my way up, choking for a single breath. I gasped, grabbed and clutched at the air, begging for relief, pleading for it to stop. Only there was no-one there was they, it was just me, alone, struggling to breath. My breath, so shallow, so rapid, was beyond anything I’d experienced before. The air entered my throat and then it stopped, disappeared, vanished, not making it all the way into my lungs. My lungs were flat and collapsing, neither inflating or deflating. What were we to do? Call my GP? No. She wouldn’t do anything. She never did. Call an ambulance? No. They wouldn’t do anything. They never did. Go to A&E ourselves? No they wouldn’t do anything. They never did. Days later and my new symptoms continued to progress. I couldn’t keep up with the pain, shooting 100 miles an hour around my chest like jolting lightning bolts, as if fireworks had exploded inside my lungs. Tingling spread like wild-fire throughout my body, bombs exploding within me with every second that went by. The bombs ensured they destroyed whatever was in their way so numbness followed, taking over and leaving me with no feeling or sensation at all. The next thing I knew someone was stamping on me, jumping up and down, again and again, crushing, snapping and breaking every rib that was in its way. Whoever this was beat me with a baseball bat until I was left black and blue. Screaming out in distress, please stop!!! Why won’t you stop!!! Please me leave me alone!!! There was no one there though was there, just me, all alone. My muscle tremors were usually confined to my limbs but a few days later and they were no longer. They spread to the muscles lining my lungs causing my upper body to repeatedly jerk, shake and convulse over and over again. I feared a seizure was on its way. Something was living inside of me, a monster, an alien, ripping me apart from the inside out, tearing my body completely to shreds. The pain was beyond anything I could ever have possibly imagined and my body was completely out of control. There was no monster though was there inside of me; it was just me and my body, all on our own. My mum stayed by my side every step of the way, watching over me day in day out; she spent her nights in a bed next to me, tears streaming down her face, fearing what would happen to me if she left me on my own. There was no where or no one to turn to. There was no help to be found. Nothing. Absolutely nothing. It had been 8 years since I first got sick and it had been 8 years we had been left all alone. How many more years would I survive this way? How many more months? How many more days?
So who did we call??? My friend. My friend who is a medical student because by this point in time I trusted her more than I trusted the NHS. She had been trying to convince me for days to call an ambulance or to call my GP at least but she knows that for me that is the ultimate last resort. She drove out to the countryside where I reside at 2am on a Saturday night and when she saw the state I was in she wouldn’t take no for an answer. She phoned for an ambulance who arrived shortly after and guess what they found???? Absolutely nothing! Absolutely nothing at all!!! Well what a surprise that was! They suggested taking me in for further testing but something inside of me held me back… I think I have no worked out what that was…
I couldn’t do it. It was as simple as that. There would be no point going into hospital, I just knew it. What more tests could the NHS possibly do that they hadn’t done already? It had been 8 years and the NHS tests had found nothing wrong with me! Not one single thing so what would be different this time around? It wasn’t just about the tests though was it, it was about the joy and the hope that entering a hospital filled me with. The hope that there was a possibility they would find my cause. The hope for answers and the hope for an explanation of my failing body. Over the last 8 years hundreds of doctors, specialists, consultants and GPS, have filled me with hope only to snatch it a way as quickly they handed it to me, telling me that I cannot possibly be helped and leaving me with nothing at all. 8 years is a damn long time! I couldn’t do it to myself anymore, I just couldn’t put myself through it any longer. I had had enough and there was absolutely no way in hell I would spend my Christmas on another stroke ward. Not long after the paramedics left, my friend lifted me out of my bed to carry me a couple of metres to the toilet. She looked at me as she hoisted me off the toilet and said something to me I had wanted to hear since this journey had begun, “This is not fatigue. This is not exhaustion. You are not exhausted. You are seriously sick. Something needs to change and something needs to be done.” That special friend later went on to choose ME/CFS as the subject of her 4th year medical student project. She taught her entire class about ME/CFS and her tutor who is a practicing GP said that she will never treat her patients with ME/CFS the same again. I would like to take this moment to say thank you to my friend and thank you to every single individual who fights our corner for us when we are too sick to advocate for ourselves. I am simply a tiny part of a much bigger picture of people who are too sick to fight for themselves so please do what you can, I’m telling you now that one tiny step you make will help lead the way to a shift in society we really do desperately deserve. No matter how big or how small, every step we make, we are one step closer to making a great change. Change so that there is a hope even if it’s not in our lifetime, there is hope that future generations will not have to suffer just like so many of us have.
January 2016: The last few years haven’t felt real to be honest. I mean physically my body has been here but inside I haven’t really been present. My body and my brain have been switched off and I know that in a strange way I’ve almost been MIA. I feel like I’ve been living in an alternate reality, most of it is a blur, a hallucination or a hazy fog as if I’ve been asleep for two years and my life is me acting out some sort of bizarre dream. I had been functioning at 0% on the CFS Functional Ability Scale for a while now (see below) … we started to wonder, what would happen if I went below 0%? Was that even possible? I’d been on a constant decline for 8 years so why would it stop now? How long could i sustain living at 0%?
I vaguely remember a brief phone call with a friend, a sick friend because I always fear a healthy friend or family member will never understand. I spoke softly with a whisper, my voice weak, incoherent, almost unrecognisable but Taylor had only known me since I was sick so this is the me she knew and this was the me I felt I was allowed to be. This is probably the most honest conversation I’ve ever had, “I know this sounds crazy Taylor… but… but… there is something inside of me. There is something living inside of me and I can actually feel it moving around. I can feel it taking over different parts of my body and gaining control. It is a parasite and I am it’s host. I’ve spent the last two years searching for answers and I think I can understand something of what’s gone wrong. I still don’t know what is causing it though Taylor I still don’t know my cause. Whatever this is, last month it took over my lungs and now Taylor, it’s taking over my heart. I can feel it Taylor. I can actually feel it infecting and taking over my heart. I have nothing left for it to take Taylor. This is it Taylor. I’m dying. I am dying Taylor. I am dying.” I never thought those words would leave my mouth but they did. That one time and that one time only. I don’t know how to tell you how I knew, all I can say is when you know you know. Her response was, “I know Em, I know.”
Days later and my usual chronic cardiac symptoms – pain in the chest wall, heart palpitations, pain and tenderness when touched on the chest, shortness of breath, a pressure on the chest as if it’s being crushed, shakiness, blurred vision, dizziness, light-headedness and blackouts were becoming ever more severe than usual so we decided to monitor my heart rate for a few days. We phoned my GP surgery to let them know I had a resting heart rate that was consistently at 160 BPM. A normal resting heart rate is anywhere between 60-100 BPM. The GP we spoke to told me that I would have to be admitted to hospital ASAP. My regular GP was sent out to see me with the intention of admitting me to hospital. Did she actually do that though? Of course she didn’t! What she did do is give me three new labels to slap onto my symptoms and add to my current diagnosis’:
- Costochondritis – inflammation of the cartilage around the heart that joins your ribs to your breast bone (sternum)
- Postural Orthostatic Tachycardia Syndrome (POTS) – a consistent abnormal increase in heart rate when going from a lying down position to a sitting and standing position. The increase needs to be above 40bpm and over 120bpm when sitting or standing for a POTS diagnosis. When a healthy persons stands up, blood vessels contract and heart rate increases slightly to maintain blood supply to the heart and brain. In POTS, this automatic adjustment to an upright posture is not working correctly because there is a dysfunction in the autonomic nervous system, resulting in excessive heart rate and reduced blood supply to the brain which causes a group of specific symptoms. See here for more information.
- Postural Orthostatic Hypotension – a drop in blood pressure when going from a lying or sitting position to a standing position which causes a group of specific symptoms. See here for more information.
I was SO sick of accumulating labels for my symptoms. Everyone accounted for by the NHS was absolutely pointless. All I wanted was someone to tell me why this is happening to me! My GP went on to explain, “Your body has forgotten what to do. It has forgotten how to work properly. Your organs are slowing down. These symptoms are because your heart and lungs have begun to shut down. This is what happens to people when they reach the end of their life. What happens to 80 and 90 year olds is happening to you. ”
Then she got up off the stool she perched on beside my bed, she turned around and she walked right out the door and she never looked back…
I would not be left to die in this bed for any longer. Mum phoned for another GP who came out to see me straight away. This GP was absolutely horrified at the state I was in. She could not believe that no-one, not a single GP, consultant, specialist, physiotherapist or the likes had been out to see me in the last 6 months. No intervention whatsoever. She was gobsmacked that I had been left like this. She was lost for words, in total shock. She said that she would be coming out to see me each week but unfortunately she also did not know how to help me. She justified it with, “I don’t know how to help you. The NHS cannot help you. We are under strict rules and regulations to follow certain guidelines and protocols. Your complex case does not fit in within the guidelines. You need to go private and you need to do it now. You don’t have the time to wait any longer.”
At this moment my darkest thoughts were confirmed. Whatever this is, it is killing me.
The diagnosis ‘Chronic Fatigue Syndrome’ had fooled me. It had blinded me and my family for the last 10 years. By now we were left with no other options at all… We knew that if I didn’t go private immediately then there was little chance of a better future ahead. There was no guarantee that a future even existed at all. You are probably wondering as people often do, why didn’t we go private any sooner? The gods honest truth is that we had already gone private… I’ve seen specialists in immunology and neurology who diagnosed me with ME/CFS, Fibromyalgia and Multiple Chemical Sensitivity but even though they are both private, they also work within the same guidelines that the NHS uses (NICE Guidelines) so they weren’t any different or any better to the NHS as a matter of fact. We had trusted the NHS. We had trusted them entirely and we had trusted that my life was safe in their hands. We trusted that they could do their job to keep me alive and breathing. We are brought up in a society where we are taught that they know it all. We are raised to believe they hold the key to the answers and that they can do no wrong because they are trained above and beyond anything we can comprehend at all. We were wrong to have that blind faith and only hindsight has told us that. And so it was our time to leave the NHS… we left it behind as we set out on a new journey of discovery with a quest for answers, explanations and ultimately for solutions as well as resolutions. Little did we know at the start of our new journey, what we were about to discover and realise now is that they; the NHS doctors, do not know it all. This new pathway we were on meant that we were about to uncover the truth, once and for all.
PS. Please share this post to help raise awareness and understanding these complex chronic illnesses so desperately need!