My M.E story

My journey began back in January 2005 when I suddenly developed a mystery illness. I woke up abruptly, one dark and dreary winters morning, staggering clumsily as I struggled to stand up from my bed. Immediately I was hit with a wave of the most excruciating pain and quite literally, I was knocked off my feet and I have been clawing my way back to health ever since. The pain was accompanied by an endless list of symptoms; unbearable dizziness, extreme nausea, migraines, inability to eat, sleep, walk or often talk, sensitivity to light, sound, smell and temperature, intolerances to a plethora of foods and environmental chemicals, a suffocating exhaustion and the list could go on and on and on. I felt as though I was trapped on a boat, on the most ferocious of seas, with no way to calm the insufferable tidal waves. No way to stop the room from spinning around me. 

Initially, it was diagnosed as a severe case of labyrinthitis “that should clear up after a few weeks like a cold or flu virus” a Doctor said dismissively as I sat bleery eyed with a green tinged complexion, trying with all my might to keep the vomit down that was never too far away. After months of drastically deteriorating and being entirely bedridden, unable to do anything for or by myself, Drs became concerned that I was showing many signs of having an aggressive brain tumour. Thankfully, that wasn’t the case, however the elation of having cancer ruled out of the equation left me with no diagnosis and therefore no form of a plausible treatment on the NHS.

At this stage, I was in my final year of high school with my GCSE’s only a matter of months away. Having had to stop attending school at the end of January, I was assigned a home tutor who would talk at me while I propped my weak and failing body up on the sofa, while my Labrador lay protectively at my side. I have no idea if she tried to teach me anything during that period, I was too ill to sit and listen, let alone learn. I could hear her voice, sing-songy and shrill, but the words were jumbled, incoherent babble, drowned out by my body begging me to speak up and say I can’t do this. I need to be in bed. I had teachers turning up at my house looking for coursework and I couldn’t provide anyone with answers as to what was happening. They could clearly just see I wasn’t the quietly determined, capable, intelligent, a “bit too nice” of young girl they had known. I was an empty vessel, rapidly losing weight with eyes darker than the dead of night, barely able to lift my head off a pillow, shaking profusely if I attempted something as minuscule as reaching my hand to lift a glass of water from my bedside table. I genuinely thought that I was dying. I feared so deeply that fifteen would be the last age I would see.

Despite my undeniable physical symptoms, my blood work would come back as “normal” albeit fairly anaemic, but not only was no one offering me possible answers as to what was wrong with me, they simply weren’t even attempting to help. 

Eventually, thanks to the persistence of my mum, after about 8 months I was diagnosed as having post viral chronic fatigue syndrome or myalgic encephalomyelitis (M.E). Being able to put a name to it was a huge relief, until, of course, it became painstakingly obvious that the name of this illness holds a stigma that renders gaining any sort of treatment out of the question. A name that holds a judgment, founded on ignorance and the dismissal of (predominantly) the female experience of pain. A name that can cause a GP to do as little as roll their eyes and passive aggressively tut, and as much as scream in your face, because they think M.E is nought but an imaginary condition and you are a lazy, work shy toerag. You are treated with the same level of quizzical, patronising humiliation as someone making an elaborate claim that they’ve been abducted by aliens and returned to earth, after a curious case of probing, with a mystery disease. Or someone called Tarquin, 33, who believes he’s Jesus reincarnated because he’s grown his white guy dreadlocks beyond shoulder length and taken Ayahuasca, once, on a gap yah in Peru. Despite the dismissal and at times creatively cruel encounters with medical professionals, I knew that what I was dealing with was real. I knew my pain was valid. I knew that as a fifteen year old kid I wasn’t going to change the opinions of middle aged, male doctors. I knew I had to tackle this my own way. How to achieve that however, was entirely unknown. 

After nine months I forced myself from my bedridden state to drag my broken body towards a sense of normality and tried to attend sixth form. Just on the off chance that I might be able to beat this. If I got back in to a routine and was surrounded by old and new friends, maybe, just maybe I would be ok? I knew in my heart that the time wasn’t right, nor was I even remotely well enough to have the audacity to try, but I categorically refused to adopt a defeatist attitude without at least giving it a go. The looming presence of a potential year of ‘what ifs’ hanging over my head was engulfed by the forged optimism that I could do this and I was going to be ok. My determination to gain an education was not something I was willing to give up on, so I enrolled and walked through the doors of a large and impressive college, riddled with anxiety and holding on to hope....and I lasted a week. Yep, one measly week and then made the proactive decision* (*read as collapsed in a chemistry lab) to take a year out and do all that I could to get myself strong enough to go back and get my A levels.

I worked incredibly hard every single day and made healing my full time job, desperately trying every alternative therapy imaginable -I’ll share with you the good, the bad and the hilarious things I tried in another post if you’d like? Trying relentlessly with all of my might to build up my strength one tiny step at a time. I had to teach myself to crawl from my bedroom to the bathroom and slowly but surely to walk again, going from lamppost to lamppost with my dog by my side, tentatively trying to go a few steps further each day, independently into the world I longed to be a part of. I had to challenge my debilitating cognitive symptoms and practice being able to read and write, at first for a few seconds and gradually building it up until I thought I would be able to sit in a classroom again. More importantly, I had to challenge my doubts and fears and to simply try. Just try my best, with no expectations of outcome. Try with a heart full of high hopes and endlessly creative plans for how to get from A to B. 

Through some stroke of a miracle, grit, determination, the unwavering support of my wonderful mum and a sense of blind hope, I went back to college on a reduced timetable, got my A levels then progressed onto university, all the while still dealing with crippling illness 24/7. In hindsight, I don’t know how I did it. Going to university was one of the hardest but most fulfilling times of my life to date. Every single day was filled with laughter and I made and lived with a wonderful group of friends that improved my quality of life exponentially. While at times it was physically the worst I had felt, mentally, my life long battle with anxiety was the most manageable it had ever been. I felt calm, capable and free.

In 2012 I graduated from University with a First class degree as well as the academic prize award of gaining the highest grades on my degree programme. An achievement no one expected from me, as everyone strongly but silently doubted that I would be able to stick it out at uni and wildly underestimated my drive and desire for a “normal” student existence. However, the success was fleeting and when I had to move back home after my finals, my body came crashing down with an almighty thud. I suffered a severe relapse that I’ve been attempting to heal from ever since. I wasn’t well enough to work, but I always try to focus on what I can do, rather than what I can’t. Subsequently I threw myself into further studies and training programmes hoping that I’d be able to become self employed and work around my health issues in a field related to my degree. In doing so, I was working towards what I thought I “should” be doing but my symptoms screamed louder until I had no option but to listen. From the age of fifteen I had had to base every single decision in my life on what I was well enough to do. Not what I wanted to do, what fueled my soul, what genuinely made me happy and feel fulfilled. Simply, can my body just about cope with x y or z? I felt utterly lost, permanently anxious and like a total failure. I was existing, but I wasn’t living and what I was working towards was setting me further and further backwards. 

I truly believe that our symptoms are here to guide us and set backs are riddled with lessons that we have to uncover. In having to take a step back from the “shoulds” I was able to focus solely on what brought me joy and helped to reduce my symptoms. As a result, I found my true passion and created my little Instagram page to share my recipes and my writing to help others with chronic illnesses, allergies and intolerances to make life a little easier. Something that I’d always done for fun and as a form of therapeutic exercise has turned into passion project that I’m turning into my career. 

I hope to continue to help people find the joy in cooking and to take the hassle out of navigating what to eat, when it feels like everything makes you more unwell. I also dream of selling my raw cakes and other naturally delicious products in the not too distant future. 

I’m determined to continue to heal and hopefully to encourage other people to fulfil their dreams despite battling this horrible illness. I want to help people to feel seen, heard and understood and to know that they don’t have to go through this alone. I’m positive that M.E does not, and will not define me, nor will it be the most prominent story in my life. It’s fair to say it’s taken up a few chapters but this will not be my never ending narrative.

Despite all that I’ve been through, I maintain the unwavering belief that healing is possible. We are going to get through this, stronger together. 

Love always, 

Holly xXx