ME Awareness Month

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:

  1. Myalgic Encephalomyelitis (ME) also known as Chronic Fatigue Syndrome (CFS) also known as Systematic Exertion Intolerance Disease (SEID).
  2. Fibromyalgia (Fibro/FM) also known as Fibromyalgia Syndrome (FMS)
  3. 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:

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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:

fibro_symptoms

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.

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Can you spot me? My neck muscle is too wasted to hold my head up so my uncle held me up for a few seconds… I thought the camera had finished clicking (but it hadn’t) so I fell back down.

 

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%?

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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’:

  1. Costochondritis – inflammation of the cartilage around the heart that joins your ribs to your breast bone (sternum)
  2. 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.
  3. 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!

 

 

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  6. Cath . F . June 1, 2016 / 11:17 pm

    Also I read through some of these comments below and the responses. It leaves me feeling very mixed up. I am eternally grateful for what financial help my family have been able to give me over the past four years I have been ill but that does not make us rich by any means … It is a struggle and I do feel guilty at times about it. I don’t want to pass judgement on anyone and any fellow ME sufferer has my sympathy. It does strike me though that you are simply telling your own story here, not offering advice to anyone else. On the other hand I can sympathise with the girl whose sister is very ill. I always remember to be grateful that I have had access to help that others may not be able to have. Our health service sucks, that is the bottom line and it shouldn’t be creating conflict between us: the sufferers and our families. The bottom line is that we would all love to be able to provide exceptional healthcare to all but it just is not possible. It is true Emma that you are in a demographic that is “lucky” (though you may feel anything but !) – as am I. I am not sure if I am going to go down the same path as you (I have some questions for you and you kindly offered to answer so I will be in touch) but at least that kind of help is available to us, though it is hard on our families too. But for many private healthcare is an impossibility. I feel very sad about the inequality of that, and the fact it seems to have caused upset. We all need to pull together; I certainly acknowledge how privileged I am to even have options. I feel sad for your reader’s sister and everyone in that situation. It isn’t fair. I would like her to know I will never stop campaigning for the government to take invisible illnesses like ME/Fibro/Lupus/Chronic Lyme/parasitic infections more seriously. I am pretty sure you won’t either! At the same time, if we can access private healthcare we shouldn’t feel guilty about it. We should just thank our lucky stars we are that privileged! The fight goes on…..

    • Emma June 3, 2016 / 12:14 pm

      Hey Cath again 🙂

      I understand that it must be very difficult for some people to watch me get help when they can’t themselves and this leaves them feeling angry, bitter and jealous. It must be tough for them but it is possible for people to be compassionate and happy for others. This is a great quality to have!

      Most people with these types of chronic illnesses are not dying but i’m sure if there were, just like I was then they would sell their house, car, get a mortgage etc to save their child’s life. That’s what it came down to for us and we are having to sell our house because my mum had to quit her job to take care of me. I don’t need to explain to people where money comes from etc I think it is just a very confusing and complex situation! I also do not feel guilty about the fact i had to go to a private hospital to be saved because if I didn’t go to Breakspear then I would’t be here now. It does break my heart that others can’t afford it but that is totally different to guilt! We all just have to come together and do what we can to make a change. It is the only progressive way forward in this situation. Will speak to you soon via email 🙂 xx

      • Cath . F . June 3, 2016 / 12:52 pm

        Hi again! 🙂

        I think it is almost harder for our relatives than for us!! Watching us suffer; feeling powerless. That’s why I feel compassionate not only towards your devastating struggle but towards the girl whose sister has severe ME and their family. It makes for stark reading!!

        I don’t know if she is even reading this anymore but if so I would like her to know that I feel so sad for her family’s struggles. I can tell you don’t feel guilty (!) and like you say why should you? I don’t think you should. I try not to either. It is pointless.

        But to stand as a community we all need to support each other. That means not judging each other and not comparing severity – because we never know how unwell others truly are, and also because even if ME doesn’t kil you and you don’t have any other co-existing illnesses as we both do, it can still wreck your life and your family’s. This cuts both ways. To be honest I found it upsetting to see the anger in the dialogue as like you say that doesn’t fix anything.

        I feel deeply sorry for anyone who can’t access any private help, who perhaps doesn’t own a house or have any resources except inadequate state benefits. I am v broke myself but luckily have a supportive family, not with unlimited funds (we too have had to make many sacrifices, like your mum) but at least with options. I am always thankful for that even on my worst days when the combination of severe ME and severe bladder disease feels too much to stand. I try to remember we are all suffering and all wish to be free from suffering…..

        Thanks so much for being there for me – it means a lot. I am here for you too – and for all ME and chronic illness sufferers. We need to stand together because like you say that is the only way forwards that makes any sense. Hence my hope that the current petition will take off. The government will then be forced to debate ME research funding and their attitude towards this devastating current situation where doctors like your own GP turn and walk away…

        Look forward to talking more on email.

        Sending love and an extra spoon

        C xx

      • Michellina June 5, 2016 / 4:54 am

        Hi Emma and Cath,
        Please don’t ever forget that, even though you have some privalige to go private–and I suppose selling your home could be seen as privalige to those who don’t have one, but for those of us who do have a home, selling it just adds to the heartbreak of being ill, losing friends and family, and being deserted by mainstream medicine–you, my dears, are paving the way for the next group of women, men and children with ME/SEID. Don’t ever forget that every step you take will make life easier for someone else. Don’t forget for every person you educate, you’ve just made it easier for someone else or someone they love.

        It’s the only thing that’s got me through going to Uni and other places where I’ve needed major accomodations just to fit in. For now, I no longer fit in anywhere apart from with a doctor and another specialist who’ve done an MRI on my brain and found I’ve got mould lesions and atrophy caused by mould living in my body. Another label: CIRS.

        I understand that hope that they’ll find something, finally, when you go back in. It took 14 years to get this label of CIRS and it explains why breathing in various chemicals causes such disabling pain. The MCS diagnosis, for me, was very vague; and I was never given ‘MCS’ (in Australia) as a diagnosis: ‘Inhalant Allergies’ was mine. It didn’t offer any hope. People have blocked me put of their lives because of designer fragrances. They can’t ‘get’ that it’s not the smell but the solvents knocking me flat. 90% of people won’t go without it unless forced by the Disability Discriminaton Act. But sine I’ve been on oxygen, people are overcome with sorrow for me, which is not what I want. I just want to be treated with respect and not feel invisible just because I’m no longer able to partake of life.

        With CIRS, I can take antibiotics and hopefully kill it all off. However, I do have a bunch of other testing to do with Lyme-like illness and bacteria infections. And if I still have MCS, so be it. If I can recover enough to be able to function daily in the parameters of a safe, low-toxic, mould free home, then I will be happy. I know who my true few friends are.

        sometimes I feel guilty because I’m in a position to build a safe house, well, my carer is. Many people I know will never have this chance unless the Australian Goverment steps up to the plate. This is why I blog. So we are NOT invisible.

        I know that you know where I post all my testing and results, live, so others may see that if they, too, are suffering with something similar, then my pain and heartbreak has not been in vain. People will read your blog and be able to get help purely because something you wrote resonated with them! And for that, Emma, I commend you; and for all your strength and tenacity for not giving up on yourself! xoxo

  7. Cath . F . June 1, 2016 / 11:03 pm

    Hey Emma
    I know you a little on IG and we have a lot of mutual friends. I have finally had enough energy to read this post in detail. You have put your entire heart and soul into it. Well done you! And today I happen to see a photo of you standing up and smiling! Am so happy for you that you are finally getting help. We have to battle through every minute of every day, as Spoonies, and to find somewhere that actually helps you must be an almighty relief. I am a fellow ME sufferer along with other illnesses and I know just what it feels like to feel that you cannot take anymore of this…… I will message you more in private but really I wanted to congratulate you on a good piece of writing! Best of luck with your continued improvement and can’t wait for your next instalment xx

    • Emma June 3, 2016 / 12:08 pm

      Hey Cath!

      Thank you so much 🙂 I am alive and breathing thanks to Breakspear so I will be forever grateful to them for saving me! There are no words to describe how it feels to be given a second chance at life 🙂 xxx

      • Cath . F . June 3, 2016 / 12:20 pm

        Absolutely. I have followed your journey on and off since you joined the IG Spoonie community and I know how awful it has been for you. To see a light in the darkness must be amazing; I can only imagine right now as very sick myself. I think it is miraculous how they have been able to help. I think you and me and anyone else who can access private help shd be thankful not just for the treatment/hospital but for the very possibility, which is denied to so many, and keep raising awareness where possible so one day help is available to all. The ME petition I mentioned to you is a great way we can do that: lobbying the government for funding and change.
        Hugs xxx

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  9. Tanya May 31, 2016 / 6:03 pm

    This post…I’m crying. I want to hug you. You are so courageous for writing this. Thank you. I’ve had M.E. for 11 years. I would say that there are ups and downs but in reality there are downs and further downs and a few rock bottoms. My life, everything about it, has changed so dramatically and god, it can be such a struggle just to hang on to who you are. But somehow we do, right?

    Please keep writing. Your words are so very needed.

    • Emma June 3, 2016 / 12:15 pm

      Hi Tanya,

      Thank you so much for your lovely comment. It sounds like you are trying your best and that is all we can do in this situation! I wish you all the best with your journey xx

  10. Ann Rowbory May 31, 2016 / 9:18 am

    Thank you Emma. I know exactly where you are at because I have a daughter with very severe M.E. (12 years). We too have spent a fortune trying to find answers and still are. We even have moved to be nearer Dr Myhill who is wonderful. But, like Breakspear, she is private too. However, there is a researcher and his team at Oxford University who are developing facial recognition technology in order to help NHS GPs diagnose rare genetic disorders. Just as we all recognise a Downs Syndrome face, in future GPs will be able to diagnose things like Ehlers-Danlos Syndrome and Marfan Syndrome, which often get missed currently (over 50 drs missed our daughter’s) and put in the CFS/ME bucket diagnosis. Our daughter is a facial double of Lynn Gilderdale, a severe M.E. sufferer, whose face was in the papers when she died. Our daughter has Ehlers-Danlos Syndrome, as well as M.E.. We think EDS is a predisposing factor for getting M.E. because the collagen around the dura of the spine is faulty in this condition. This allows infecting agents such as mono, Lyme, etc to get to the brainstem area, via the cerebrospinal fluid, and hence can possibly mean an acquired Chiari 1 Malformation, or affect the hypothalamus, or stay in the CSF and cause syringomyelia or a CSF poor flow problem. The Oxford Uni team are in the early stages but the Lead researcher told me that they are doing their very best to get this to the NHS drs asap.

    • Emma May 31, 2016 / 12:14 pm

      Hi Ann,

      I know of Dr Myhill and we looked into her but she no longer takes new patients. Breakspear are similar to Dr Myhill and some of my team there work with her. I am pleased to hear your daughter is under her care as I believe she is one of the best in the country.

      Thank you sharing that info with me. It’s very interesting! I have many friends with ME/CFS/Lyme/Fibro/Mono etc who also have EDS so it is very common amongst these types of illnesses. My Dr at Breakspear was very surprised i don’t have it considering everything else I have going on!

      Wishing you and your daughter all the best xx

  11. Jess May 30, 2016 / 8:40 pm

    Emma I’m so sorry you’re experiencing all this. I’ve been recommended an energy healing practitioner called Tony Mills by a good friend in the past. He deals with entity possession. The way you describe being inhabited by something makes me think that your condition is psycho-spiritual in origin. I’m not an expert by any means, but I know that if you’re a sensitive soul, or if you’ve been to open to some negative influence in your life then it’s possible that an entity has attached itself to you and is feeding off you. I’m sure you’ll look into this if you feel it strike a chord, but one thing you can do to begin is to state loudly, in spoken words, that you are not available to anything that is not for your highest good. You can declare that you want anything that is living on or near you to leave. Burn some sage to clear the space and repeat your mantra every day, with strong intent. Much love xxx

    • Emma May 30, 2016 / 9:02 pm

      Hi Jess,

      That is a very interesting idea. I go to a private hospital now who have done investigative tests & found that my body is plagued with chronic active bacterial, fungal & viral infections which have taken over my body, infecting my muscles which includes my heart & my brain, suppressing my immune system & damaging my nervous system so the reason I feel like there are things living inside of be is because there is! Hahah Will write about the causes of my ill health in my next post xxx

    • Michellina June 5, 2016 / 5:00 am

      I think it’s ideas like this that stop people with serious illness reaching out for conventional or Intergrative treatment. Woo can be dangerous if it’s the ONLY treatment. However, as something on the side, so long as it does no harm to the patient, then what’s the harm? Although, if I burnt sage, my head would hurt for a week and my lungs would burn. Just saying!

  12. jo kuwekika May 30, 2016 / 7:43 pm

    I sat with Emma quite recently and her tears were for other sufferers. x

    • Emma May 30, 2016 / 9:02 pm

      Yes Jo this is very true xxx

  13. Caroline May 30, 2016 / 1:08 pm

    Wow. That must have been so very difficult to write. Thank you for sharing your story. As a long term sufferer of ME and other Chronic illnesses, I find your awareness blog to be very informative. At no time, did I see it as ‘wealthy jumping ship’. That’s not what this is about, and its wrong for anybody to suggest it. You’ve described in such fine, personal detail, the extent of your illness, and the feeling of death approaching. Your Mum, your Guardian Angel, how awful to witness your health decline. My parents have watched this in me. The photos of you on your Birthday and Halloween didn’t fool me. I could see your pain. I follow your IG page, and I’m so very happy that you are now making some progress. Small steps I know, but it all counts. I would like to see this blog in a national newspaper. Maybe it could shame the NHS into doing something proactive to help ME sufferers? I wish you all the best and I will highlight your blog on my IG page. Thank you again for sharing this.

    • Emma May 30, 2016 / 4:19 pm

      Hi Caroline,

      Yes it was beyond difficult to write! Thank you for understanding the way I write and why i’ve wrote what I have. I think if i was part of the wealthy jumping ship I may have left 10 years ago and never had anything to do with the NHS?! It feels good to know you can also see through the photographs as I haven’t heard that before. Perhaps it’s because you know too well what you are looking for. I’m sorry to hear that you are also sick. I am actually thinking of approaching the press soon so you have just motivated me to do so even more! Wishing you all the best with your journey xx

      • Caroline May 30, 2016 / 5:28 pm

        Hello again Emma,
        Your words describe how ME really is. Personally, I think this is where CFS cannot be the same as ME. It’s not just fatigue, it’s a completely different set of symptoms. I have experienced the feeling that I’m dying, I can feel my body, bit by bit, slowly dying. But I haven’t told anybody else for fear of being mocked and not wanting to worry my family. I was able to picture your GP standing up from your bedside, and walking away, leaving you so heartlessly, because that’s how it really is in the medical world. I’m so glad that your medical friend chose to educate her class and tutor about ME, a positive step forward. Please do contact the press. Everybody needs to read the truth about how dangerously ill patients are being neglected, and literally left to die. Your writing brought tears to my eyes, because you described my life. And I’m certain, that many others feel the same.
        I understand how much energy you will have used by writing this blog and that you will probably be experiencing the awful post exertional malaise. I hope others appreciate that too.

  14. suzannah jones May 30, 2016 / 12:49 am

    It sounds like your getting wonderful care at your private hospital. It is named above and we actually checked that place out (that Jay says he could maybe sell a kidney to attend)… It is so expensive for testing and treatment our family would go bankrupt. Of course you don’t say anything advising anyone else directly as this is completely your own story like you say, but still when you make your choice at the end after almost dying it does sort of make you (me) wonder what everyone else is supposed to do. You say you went to private doctors before too. But my poor elder sister has severe ME and has no access to any of this and I suppose when my friend mentioned your blog I hoped to read something that would give our family some hope instead of what your basically saying which is that we are up the proverbial creek if we can’t leave the NHS. I couldn’t be happier for you that youve turned a corner yourself that is amazing but maybe some of this blogging needs to be about changing the system not just the wealthy jumping ship? We left my sisters shoes in London last week. I don’t know if she will ever walk in them again. We want things to change not just for a fortunate few. That doesn’t take away from your pain and suffering and your better luck now. Best wishes to you and your mum who sounds as devoted as mine is to my sister!!

    • Julie May 30, 2016 / 11:52 am

      Suzannah, I can understand your frustration and anger about your sister not getting appropriate treatment, but I certainly don’t see Emma, as the “rich jumping ship”. She has written her blog to show the inadequency of treatment via the NHS, and how much needs to be improved and she has been active despite her illness in raising both awareness and money via sponsorship for the ME society which campaigns for all to get appropriate treatment. Yes, she is in a lucky position that someone in her family after years of Emma, trying to get treatment on the NHS, can support her to go private. If you were in a position to do the same for your sister, would you not do it, if all other avenues have failed? Emma certainly isn’t concerned with a “fortunate few” but all those who have suffered from ME, and other hidden illnesses like Fibromyalgia, which I have. There is no doubt that much needs to be changed regarding the treatment of ME by the NHS. The more people realise that by sufferers like Emma raising awareness that it’s not available, the more chance change is likely to happen.

    • Patricia franklin May 30, 2016 / 8:25 pm

      Suzannah in answer to your comment which made me feel really uncomfortable as Emma’s mum ; the reality is that I have given up work to care for Emma 24/7 leaving me with no income whatsoever and too young for a pension and in addition to that I am having to sell the house in order to not go bankrupt but the health of Emma means more to me than a comfortable lifestyle. We spread awareness on a daily basis of the stark reality that there is no adequate testing & treatment for ME/CFS – Emma uses all her energy to support her friends with this illness. Her single motivation for recovery is so she can do more for the people who do not have the funding for reliable testing to establish the cause of ME/CFS & then obtain the correct & sufficient treatment; her idea is to set up a trust for this & trust me when I say this she is more than aware and eternally grateful for this opportunity she has for treatment. She has a long long road yet and still spends 22hours a day in bed but when she is able she researches what she can, spreads the word including doing her missing millions post & cannot wait to be well enough to speak to the press, her MP & attend protests & conferences. I am sorry your family are suffering as it it affects everyone around the person with ME/CFS but keep fighting in any way you can to get what is necessary for recovery . I wish you well.

      • suzannah jones June 1, 2016 / 2:47 am

        Dear Emma, Patricia and Julie
        No offense at all was meant to you’re family you all seem lovely!And as I said several times I think it is so great for Emma that your family are able to fund private care of tens of thousands of pounds. I didn’t expect personal details and if you are a single parent Patricia as you make it sound then I doubly feel sad for you as my mum is the same and me and mum care for my sister and basically live on carers allowance (I get the feeling its probably a bit difference). My point was more that I was left feeling that everyone with severe ME who cannot leave the NHS is goimg to die and there is nothing to be done. You mention campaigning and I know Emma how hard it must be to do any of this now but hopefully as you get better you can do more. We campaign tirelessly and nobody listens to us. There is no treatment on the NHS, as Emma truthfully says. I think it was a fair comment that the rich can jump ship. Emma of course you would have tried everything first and it sounds like you did but you have a way out and my sister doesn’t. I know you will be exhausted by writing what you did and your treatments and if you travel and whatever. I don’t forget that of course not. I am sure you cry for other sufferers; we are religious and pray every day for all ME sufferer’s and all with longterm illnesses fatal or not. If we won the lottery Julie naturally we would give the money to my sister B for treatment rather than going on a holiday but somehow I don’t think that’s going to happen. I didn’t mean to say Emma’s not amazing and her journey is not tough. I meant to say that for some they won’t ever escape and it must be hard hey for all those sufferers to read that there’s a way out but to them the exit is locked due to money.

        • Julie June 1, 2016 / 9:34 am

          Suzanne, it is hard, if you haven’t got the money. I have had Fibromyalgia for 30 years. Alternative therapy helps with my symptoms but I can only afford short bursts of it and the benefits don’t last. I have often wished I had enough money for ongoing treatment. It is because I know the difficulty of not getting NHS help and how I could be better with regular treatment, that I am delighted for Emma that she has this opportunity to get well. I wouldn’t blame anyone for taking that opportunity. I personally don’t find it helpful to divide people up in terms of whether they can afford treatment or not. It’s an assumption they are rich when we don’t know where they have got the money from. They could be selling their house, have a relation who thankfully has the money to help, or have a generous benefactor. It doesn’t mean they personally are rich. We all suffer if we have chronic hidden illness, and knowing how much we do, I can only be glad someone has been able to support Emma through this treatment, and be glad others may get the opportunity to be well, through Breakspear. That doesn’t mean I am not sad that your sister isn’t getting the help she needs. I can understand your frustration hoping to find help for your sister, and then realising it’s not available to you. It must have been really disappointing. My hope is that the campaigning you do, as do many sufferer’s of ME, and their families, makes a difference, to ensure that everyone with this illness gets good and effective treatment. You are justifiably angry that your sister can’t get the treatment she needs. However, please don’t think of it as “jumping ship” when someone gets the chance to improve their life. That will only lead to bitterness and resentment, and that doesn’t help. I know, as I have been their. Best wishes to you and your mum, and especially your sister. I really feel for you all.

        • Cath . F . June 3, 2016 / 1:12 pm

          Dear Susannah

          You don’t know me but I am a friend of Emma’s from Instagram. Your comments really got to me. Firstly because it is not Emma’s fault that your sister cannot access similar help. She has been through hell; would you want someone talking to your sister that way?

          Secondly because I too have severe ME along with other co-existing illnesses including debilitating bladder disease. I am ‘lucky’ that my family have some resources to help me but this doesn’t make us über rich and believe me there are many tensions involved! Also, I remain very ill and as a single mum, going in and out of hospital is hard all round. Of course I am grateful, though, as I have more options than many in my situation and I do try to appreciate that.

          My overriding sentiment was a deep sadness for you and your family. It isn’t fair. It just isn’t. If sufferers like Emma and I could fix that with a magic wand, we would!! However, with the media attention we may be able to generate we might make a start. There is currently a petition to lobby government to address ME : plz let us know if you would like to sign or help with it.

          I just wanted to send you and your sister all my best and to say that I really empathise with you while at the same time feeling that anger at other sufferers can’t be productive. We need to pull together to effect societal change.

          C x

    • Michellina June 5, 2016 / 5:22 am

      You know, I have friends with all the labels too but they, unlike your sister, have NO family, carers or friends to help them. It’s a day to day struggle only lessened by advocates who speak on her behalf. The fact that Emma has gone public with her story should be enough of a gift for society, collectively, as a whole! I don’t know Emma personally, only via social media, but I do know that she has a strong desire to help others. And I also know, from personal experience, that this selflessness comes from somewhere deep within. It might or might not be God; it might or might not be genius–but what it is, is an innate ability to assist others even though the girl is flat on her back most of the time.

      I feel for your mum and your sister; but I feel hopeless, devastated, for those who have these conditions and NOT one to help them. Some even get labeled with mental illness when they don’t have it; or they have the label of mental illness but cannot access care, here in Australia, unless it’s under the mental illness label. All because, yes, they don’t have private.

      But I can offer you extensive hope: for the ones of us who do have private health cover–and a few of us who don’t but rely on the goodwill and charity of others–we will be loud and proud (to borrow the term) of our illness, our trials and tribulations, our darkest hours, our lightest light, and the ways in which we can tell our stories, pushing for change for people like your sister. As well as for all people with ME/SEID, MCS, CIRS, Lyme, Fibromyalgia and so many other overlapping medical conditions relating to ‘Fatigue’ and sensitivity to chemicals–often the last or first step on the way to being diagnosed with these labels.

      Emma is a heroine in my eyes. I wish for the world to read her last two posts. They say it all. Cut down in her prime; pushing back so she can attempt that climb. I wish her, your sister and ALL suffered the best and for positive change in the future. xo

      • Patricia franklin June 5, 2016 / 4:28 pm

        Michellina your eloquent post is full of passion & shows a deep understanding both of the illness, the effect it has on the sufferer & their loved ones & the absolute resourcefulness which many sufferers find to carry on so that they can pave the way for future improvements in our broken system which precludes sufferers from the competent testing & treatment that they deserve. …. Emma is gaining strength from the support she receives from you and others like you all the love she feels is readily reciprocated and your post shows your perception that this is the case. I am proud to say I am her mother. You too should take stregth from the collective and feel truly loved and encouraged to keep on going with the raising of awareness and pushing for change as well as the greatest personal recovery possible. Thank you x

  15. suzannah jones May 29, 2016 / 6:20 pm

    What are people supposed to do who can’t go private? This is an emotive piece of writing as they all said aabove but it pre-supposes that we all have the resources to go to a private hospital that costs tens of thousands of pounds. Maybe this is not easy for your family either but the truth is that most people in the UK cannot afford to do this at all. What are they supposed to do? This is what needs media attention. But I am so happy for you that you are receiving the help you need now.

    • Emma May 29, 2016 / 10:06 pm

      Hi Suzannah.

      This blog post does not pre-suppose everyone has the money to go private. When do I mention anything that indicates this? My blog is a story of my personal journey. I never speak about what I believe other people should? If I wasn’t able to have gone private then I wouldn’t be here now. I would have died. It’s as simple as that. For the 10 years I’ve been sick before I went private I’ve had to find things to help myself and manage as best as I can. That is all any of us can do as there is no treatment on the NHS available.

      Thank you. The private hospital I go to saved my life so I will be forever grateful to them 🙂

  16. Jay May 29, 2016 / 10:43 am

    Dear Emma,
    I am going through this in Australia with ou public medicare. So many features of your story strike chords to my own. I’ve just been discharged from hospital again, and the GP has slapped on orbital migraine and chostochondritis. They are trying to send me to stroke type rehab as well – I got rejected from that, the story is here: https://spoonhoodlum.wordpress.com/2016/05/26/shitty-things-people-say-to-spoonies/
    I hope that Breakspear continues bringing you what you need. Maybe I can sell a kidney and go there too :-p

    • Emma May 29, 2016 / 10:47 am

      Hi Jay,

      I’m sorry to hear that you are going through something similar. I recently saw a private neurologist who diagnosed me with chronic migraines. I said yes I know that I have that’s what I have because that’s why I’m here! I want to know why!!! It’s funny but not funny at the same time how they label our symptoms but don’t find our cause.

      Rehabilitation is great if you can improve without biomedical treatment but it’s not possible if the cause needs treatment. Now I’m having treatment I’m rehabilitating but it wasn’t possible before! I hope your cause can be helped with rehab alone!

      I actually have a friend at Breakspear who has come over from Brisbane 🙂

      Wishing you the best of luck for your recovery journey x

  17. Rachel Williams May 29, 2016 / 7:39 am

    Hi Emma. This is such an emotional and important read. It is so sad to hear that you were bedridden for so long with no real medical support. I really really hope that the right people take notice of this account and make some action for ME. It is unbelievably unacceptable that this disease has been disowned by the NHS whilst so many millions are affected by it. Your body was completely broken and there was no help for it, I am so sorry and frustrated for you!

    Really hoping your time at Breakspear will help you to see improvements. That you will have not only the right answers to work with but also the right, caring attitude to go with it.

    I will keep you in my thoughts and prayers. If you ever need someone to talk to I’m here! Much love!

    Rachel (cfs_me on IG)

    Xx

    • Emma May 29, 2016 / 8:44 am

      Hi Rachel, I think the saddest part about this is that it’s not just me there are hundreds of thousands are people left like this! Not only are Breakspear treating me but they are so caring & kind. They are incredible! Will write about it in my next post 🙂 Thank you so much xxx

      • Rachel Williams May 29, 2016 / 10:12 am

        That’s great to hear! Hope you see improvements 🙂 xx

  18. Julie Franklin May 28, 2016 / 3:17 pm

    Very painful to read Emma and brutally, courageously honest, but so necessary. I hope your honesty helps bring change so others don’t have to go through what you have.

    • Emma May 28, 2016 / 3:19 pm

      It was extremely difficult to write Julie but I’m pleased I did as hopefully in some ways it will do some good somewhere! I feel a sense of relief now almost like i can close that chapter of my journey and move forwards xx

      • Trish Franklin May 29, 2016 / 4:54 pm

        Well as you know just proof reading had me in tears Emma! I am conscious it has been an incredibly difficult journey which I have bore witness to and I am proud of your grit & determination to fight for what you deserve but always being mindful of how others can also benefit from your journey… Well done X

  19. Rachel hume May 28, 2016 / 1:19 pm

    Amazing Emma . You speak for me as well as so many others ! thank you … Well done xxx

    • Emma May 28, 2016 / 2:20 pm

      Thank you Rachel! I’m pleased to hear it represents others as well as myself 🙂 xxx

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