Screw M.E.

Jennifer Chittick passed away on Tuesday the 21st of May 2019 after a ten year battle with M.E.
This article will remain on M.E. Support as a legacy to Jennifer's life and campaign work.

 

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The Beginning

2009. It’s a year I will never forget because it’s the year that my life changed forever. At the time of writing, almost nine years have passed, and things have never been the same since. 2009, you see, was the year I became sick with M.E.

It was supposed to be a great year, the best year. The kind of year my life had been building towards for longer than I knew. I was twenty-one and finishing off my teaching degree at university after four long years, graduating, having a summer of fun and in August, I’d be starting my first teaching job and be on the road to financial freedom. And then ... who knows? Maybe my first flat? Travel for a while? Work abroad? The future was wide open and totally mine to create. Years of hard work at school and university were paying off – I was finally going to be an ‘adult’!

Except, things didn’t go according to plan. I did well at university, completed my degree and graduated. And while I enjoyed this, I was heartbroken. A relationship that had mapped and defined the previous two years of my life had come to an abrupt and unexpected end. And so instead of enjoying a carefree summer, I felt like I was going through a bereavement. I was devastated, extremely sad, and exhausted – crying is exhausting! And I cried a lot.
By the time I came to start my new job, although full of excitement and enthusiasm, I was worn out. I can see now that my emotional summer was causing me mental fatigue. During all my teaching placements at university, I had always been ‘on the ball’ – as a teacher you have to juggle literally dozens of things at the same time, always thinking, always aware. Teaching is one hell of a mentally challenging (but very rewarding) career. Yet this time, something was different. I would forget things, become absent-minded, find it hard to focus on one thing at a time; instead my mind would flutter from one thought to the next like a butterfly. Things just weren’t clicking; my lessons were a bit lacklustre. I didn’t pay much attention to this at the time (I’m not even sure it registered), probably because I was so determined to get ‘stuck in’ and my head was still a bit all over the place from the events of a few months previous.

After only six weeks or so, things became more physical. I began to experience nausea, light-headedness, hot and cold flushes and fainting spells. At times these would be so bad that I would have to send one of my pupils to urgently get help, so I could run to the toilets for water and time out, while a free member of staff watched my class.

But even this didn’t jolt me into recognising something was wrong. Maybe I just had a bit of a stomach bug? It would go away quickly enough, I reasoned. If I just kept my head down and powered on, surely I’d be ok. I was determined to do well in my new job and wasn’t going to let a bit of nausea and dizziness hold me back! So I kept working as hard as I could – and socialising as much as I could at the weekends. Every spare moment, I had to be doing something. It was odd – I was exhausted, yet filled with this weird, hyper energy. Tired but wired, I now call it.

When my ‘funny turns’ became more frequent and I began having to take intermittent short periods off work, a colleague suggested I go to the doctor. I was given blood tests, but everything came back normal – you probably have a virus, I was told. It will go away soon enough. But whatever it was, it didn’t go away. Over the next few months, my symptoms (both physical and mental) worsened, not at all helped by the usual bugs that work their way through primary schools in the winter. I was forced to take more and more time off work. I felt at a loss, frustrated – I was SUPPOSED to feel better! I COULDN’T keep taking time off! I didn’t know what to do ... but in March 2010, my body decided for me.

Having spent the week off work due to what I passed off in my head as the flu, I collapsed when my mother tried to help me out of bed. An ambulance was called and I was admitted to hospital. The next three days were among the worst of my life. Even though I knew something was very wrong with me by this point and common sense would say that hospital was the best place for me, it was the absolute worst. I was so weak I couldn’t hold my head up, struggling to eat or even toilet myself. It was terrifying. The nurses were horrendous, refusing to help me sit up in bed, not giving me water, leaving needles in my arm for hours after my IVs had dried up and not letting me shower. I heard them mutter ‘attention-seeker’ and ‘self-inflicted’ under their breaths when discussing me. I was seriously ill and needed help, yet felt completely alone and uncared for. I was desperate to get home.

After three long days I was discharged – again, all tests had come back normal and I was told that I most probably had a virus. Yet I never returned to work again. This was just the start of seven more years (and counting) of M.E. I just didn’t know it yet.

 

The Diagnosis

Looking back on what followed my hospital discharge is difficult. It was so long ago, yet seems so raw. So much happened, yet everything is a blur. What I do clearly remember is the intense emotion – the anger, sadness, confusion and desperation were overwhelming. The sheer frustration at the situation led to arguments in the house, and there were tears of hopelessness at the endless, fruitless GP appointments. My health continued to deteriorate despite every doctor I spoke to being convinced I’d be back at work in no time if I just got some rest. Well, by now I was having to spend all my days laying on the couch, relying more and more on my parents to help me with mundane, simple tasks. As far as I was concerned, I couldn’t possibly be getting any MORE rest!

By the summer of 2010, at a complete loss at the lack of help from our local NHS, my parents paid for a consultation at a private hospital. I barely made it through the door. The doctor booked me in for an MRI scan on my brain (to try to find an explanation for my dizziness), some blood tests and a cortisol test to check my adrenal function. But again, there was nothing. I clearly remember half-sitting, half-fainting in an office and being told, ‘Not only are you within all the normal ranges, but you’re bang in the middle. Exactly where you should be! Just get some rest over the summer and you’ll be fine.’ My parents came away feeling relieved, but I was disappointed. Strange though it may seem, I wanted to be diagnosed with something! With a diagnosis, there comes understanding and possible treatment options. But I didn’t understand and I didn’t have options. All I knew was that I had never felt anything like this before and that this, whatever it was, was most definitely NOT a straightforward illness as everyone seemed to think.

The following year is even harder to recall. Soon, I was unable to leave my house or even get dressed. But because I had no diagnosis, there was nothing to do, nothing ‘real’ to treat. Out of desperation, I began searching online for answers. All my symptoms seemed to point to something called ‘M.E.’ (or ‘C.F.S.’ as some sites called it). I had vaguely heard of this before, but my knowledge didn’t stretch any further than ‘it makes you feel tired’. Well, that didn’t even begin to explain how I felt! Still, we broached this with my GP (now not even hiding her frustration at seeing me so often) but were shot down. ‘Oh, don’t be so dramatic!’ was the laughed response. But over time, we were convinced. The more we learned, the more it made sense.

I can’t even begin to explain how much my illness was affecting my family by this point. Watching me deteriorate but feeling powerless to help was killing my parents and I was drifting constantly between anger and hopelessness. When I had left hospital I made myself a promise that I would never, EVER end up in bed again. Three days were enough to convince me of the misery of being bedbound and I was determined it wouldn’t happen to me. But unfortunately, I didn’t have a choice. My body had become too weak even for the couch and I was forced to retreat to bed, a major blow for me. Everything was now becoming too much for us, every day felt like a ‘crisis point’. We knew something had to be done, but what?

Eventually, my mum made a tearful call to an M.E. charity helpline and virtually begged for help. There wasn’t much the poor volunteer could do but she did mention a doctor’s name in passing – a neurologist who had worked with (and advocated for) M.E. patients in the past. But this was a long time ago, she mused, and perhaps he was retired now. Still, we jumped on it! After much detective work, we discovered he still took on a small number of private patients each year. My parents contacted his office – and a wave of hope washed over us. They understood! His secretary was sympathetic, reassuring us that my case was not at all unusual. The doctor (who, for privacy reasons, will remain nameless) was based in London and yet, fully appreciating that I would be unable to travel so far to see him (I live in the west of Scotland), offered to come up to see me himself one weekend! We counted down the days to the appointment with anticipation, hope and a little anxiety.

He arrived with his secretary mid-afternoon and spent two hours in the sitting room talking to my parents. I had never experienced a doctor so willing to listen and learn as much about me as possible. When he finally came through to my room, he filled me in on what had been discussed with my parents, asked me some questions and performed a physical examination. Then, the diagnosis came – I had M.E. I was told in no uncertain terms that I was a ‘textbook case’, the doctor had seen ‘thousands of patients’ like me in his long career and, contrary to what my GPs had been trying to convince me, M.E. was indeed very real. He drew up a long list of treatment options for me to try (various supplements, medications to help ease some symptoms, gentle physio techniques etc.), said he would liaise with my doctor and recommended monthly updates by phone or email.

A weight had been lifted! Someone (and not just anyone – a highly qualified doctor with years of experience in this field) understood me! He knew what was going on! Receiving the diagnosis was the confirmation I had needed to prove that the last hellish year of our lives wasn’t the result of my imagination or some kind of hypochondria.

A week later, we received a copy of the letter my new consultant had sent to my GP. In it, he described my symptoms, addressed my diagnosis and treatment options and made a point of mentioning that M.E. is recognised as a neurological disorder by the World Health Organisation. It felt like a victory against my ignorant doctors! But I’ll never forget the letter’s closing statement: ‘In essence, this is really only the beginning.’ And boy, was that right!

 

Post-Diagnosis

I wish I could begin this section by saying that I’m better, that all the treatment options my consultant drew up for me worked, that I’m now back teaching and living life again. But sadly, that’s not the case. And trust me, it’s not for lack of trying. I did it all – every supplement, injection, prescription, passive movement, physio exercise, pacing technique, the lot. Physios, occupational therapists, counsellors came and went, sympathetic (if a little confused) about my situation at first, but then becoming frustrated at me for my lack of progress. With every new venture there would be a glimmer of hope. I’d try not to pay too much attention to it because I knew there was a strong chance I’d be setting myself up for disappointment, but I couldn’t help it – hope is what kept me going. Invariably, I’d do ok (well, ok in terms of M.E.) for a couple of weeks but then crash, back at square one or worse.

There was no concrete explanation for why things weren’t working out for me. The consultant in London, who we communicated with via email and occasional phone consultations, reassured me that I would get better, there was no doubt about it. Even in my early M.E. days, I was sceptical of this – could a doctor really make such a strong promise to a patient? As time went on, I became disillusioned and even angry towards him for saying it. It’s like he was dangling a carrot in front of me that I could never quite reach.

Throughout this time, my family and I, although finally blessed with a consultant who understood, were still finding ourselves constantly having to defend my situation. No doctor, nurse, physio etc. truly ever accepted that I had M.E. (not that they even knew what that was), let alone a physical illness. For some reason, the focus was always on my mental health. Sure, I was miserable and anxious about being so sick, but I wasn’t bedbound because of a serious mental illness. Yet time and time again, I was faced with confused, frustrated health professionals asking me questions like, ‘But WHY are you afraid of getting out of bed? Why don’t you want to be at work? Have you ever fantasised about killing yourself?’ When I shook my head in disbelief, cried tears of anger or found myself at a loss for words at their ignorance, they took this as confirmation that I was in the throes of some kind of psychiatric breakdown. Nothing I or my family said or did could convince them otherwise. It was a constant battle – us vs M.E. ... and everyone else! It came to the point where, frustrated at my doctor’s lack of knowledge (or even interest) in my illness, my parents printed off pages from M.E. sites and ordered information booklets from charities. We sent them to my GP surgery, but they refused to read them and we never heard back. All of this, of course, only added to my stress and exacerbated my symptoms. It was a vicious cycle.

The consultant neurologist who first diagnosed me retired in 2015, and I was left without anyone to spearhead my recovery. We’ve had to do everything ourselves ever since. Nowadays we’re much more knowledgeable about M.E., but we still face the same struggles: my GPs are determined to have me complete psychiatric evaluations and counselling and point-blank refuse to discuss or look into any other options (two years ago we changed to a new surgery, but the problems are still the same, if not worse); physios get annoyed when I don’t make the ‘standard’ progress, no matter how hard I try (one even accusing me of ‘hiding behind’ my M.E. and ‘using it as an excuse’ to stay in bed); and occupational therapists claim there is nothing they can do for me. Everything that’s been put in place to help and support me these last few years has been because of the determination and resourcefulness of myself and my parents. I’m on lots of new supplements, have altered my intake of certain medications, refuse to continue with physio and graded exercise and have been kitted out with an electric wheelchair (I’m still in bed 90% of the day but this gives me a little bit of freedom), a chair for the shower and accessible decking with a wheelchair ramp in the garden, which allows me short sits outside in the summer. After eight years of hard lessons, I now have a very strong sense of what is right or wrong for my body. We’ve liaised and worked a little with some private doctors during this time, but, as one consultant correctly put it, I’m ‘a victim of location’. In the UK, specialists and treatment options for M.E. are very scarce and limited. Where I live, they are virtually non-existent. And hardly any doctor will take you on unless he/she can see you in person.

All of this over the years has cost my family quite a considerable amount financially, but it’s what it’s cost us in other areas that’s truly heartbreaking. We no longer have faith in the NHS, for example. We are exhausted from explaining and defending the state of my health over and over, only to be ignored. We are angered at the lack of research and funding for M.E. And we’re constantly alarmed at how 250,000 people in the UK alone can be faced with such ignorance and mistreatment from those in a (supposed) position of care.

 

Social Media

In the early stages of my M.E., long before I was officially diagnosed, I became aware of the many support pages for the illness online. They were gold mines of information, support and understanding. Hundreds, sometimes thousands of people all singing from the same hymn sheet as me, all in the same situation as me and sadly, facing the same struggles. It helped me realise what I was dealing with and reassured me that it wasn’t just all in my head (surely all these people couldn’t be wrong?). It was empowering in a sense ... but also overwhelming.

At that time, I just couldn’t cope with it. Although I had ‘Liked’ numerous pages on Facebook, I found the constant notifications about medical articles, supplement reviews, drug trials, personal tragedies and so on, just too much for my foggy brain and raw emotions to handle. Even the neurologist who diagnosed me advised against joining online support groups or doing too much reading up on M.E. He thought that it would only add to my anxieties. And besides, he said, everyone is different, so I couldn’t compare my experiences with anyone else’s, or allow myself to be swayed by someone’s opinion on a certain supplement or medication. What I was quickly learning was that any research, any reaching out to a fellow M.E.-er, any sharing of stories etc., all had to be done on my own terms and at a time and pace I was comfortable with.

Slowly, eventually, I made some tentative steps at becoming online friends with a few fellow M.E.-ers I’d come across on one of the pages I used to follow. I had been selective about who I befriended online – not because I was snobbish, but because I knew that I could easily be dragged down into depression and despair if the chats became too ‘heavy’ or scary. I needed things to be helpful and informative, yet light-hearted and friendly. When things went by these terms, I found the friendship and support I received to be invaluable. And it turns out that these terms of communication would, in the near future, become the foundations of my very own support page – Screw M.E.

 

Screw M.E.

I had been bedbound for around a year (give or take a few months), when the idea of Screw M.E. came to me. Or rather, the idea of a Screw M.E. Day came to me. I was still struggling with accepting my new circumstances and miserable at being in bed. One day, I realised with a sigh, that my ‘hospital anniversary’ was coming up – it would soon be two years to the day since I’d been admitted and my M.E. journey kicked up a notch. Half joking, half serious, I messaged my sister (who I’m extremely close to) and said we should do a mock celebration of this special date! I wanted to do something fun and silly to take my mind off it all. Keeping a (somewhat dry) sense of humour had helped sustain me over the past year or so. I suggested a theme: ‘Screw M.E.: Let’s Celebrate with Cake!’ My sister was so excited, she thought it was a great idea! We were soon planning away, determined to banish the M.E. bleakness, even for a day. Our thinking was that, instead of being miserable that I was sick, we’d celebrate the fact that I was no longer in that hellish hospital. We’d have some cake (maybe with a nice cuppa!), take silly photos of ourselves posing and post them online for everyone to see. Hell, let’s rope in all our family and friends and make a day of it!

And so, on 28th March 2010, we enjoyed the very first Screw M.E. Day. It was great fun – all day I was receiving messages and photos, dozens in total, of people who had taken part. My sister’s flatmates, for example, had an informal tea party; my grandparents tucked into their favourite Victoria sponge whilst wearing party hats; and even a friend backpacking round New Zealand made a point of joining in with her new travelling companion. For someone who had felt cut off from the outside world for so long, it was heartwarming to see so many friendly faces band together to help cheer me up and show support.

Screw M.E. Day was really only intended to be a one-off. I hadn’t thought about doing it again (nor had I considered the possibility that I’d still be sick a year later!). But as my next ‘hospital anniversary’ drew near, the subject came up again with my sister and before long, we were planning the next event – this time with the theme of ‘Screw M.E.: Let’s Have Biscuits and Tea!’ Again, it was a great success and a fantastic morale-booster! Going into the third year, I decided to set up an official Facebook page called Screw M.E. …

In the beginning, the sole purpose of the page was just to collect and display all the photos from the Screw M.E. Days – it seemed a shame to only have them available for viewing on my own private profile. It was quickly followed by a few dozen family and friends and remained relatively dormant for a while, aside from a few nervous posts in which I’d ask for help on how to edit the profile features. I (very) gradually became more confident and began sharing the page on other M.E. support pages and occasionally posting brief updates or light-hearted thoughts. Slowly but surely, the number of ‘Likers’ rose on the page. I remember being so excited when it passed 100! More and more people, most of whom I didn’t know at all, were engaging, commenting, sending me kind messages of encouragement and taking part in the Screw M.E. Days. To make the page stand out even more, my friend Linda Rusconi, a professional artist, created a Screw M.E. logo as well as a beautiful personalised banner for it. Her designs were inspired by my love of nature and are a colourful and inviting addition to the page. Screw M.E. was finally coming together and looking the part! Though it took a bit of getting used to having a public page, I felt myself becoming more at ease with it – I was creating an environment where I was comfortable in addressing my M.E. And it felt SO good to have a focus and feel like I had a purpose and being able to channel my thoughts and creativity into something worthwhile was extremely gratifying.

As the following for Screw M.E. grew, so too did my ideas and vision for the page. Over time I began sharing articles relating to M.E. and posting inspirational quotes. And I created a number of ‘features’ which are unique to Screw M.E. For example, ‘Tuesday Tributes’, where I describe inspiring M.E. journeys of followers of the page; ‘M.E. Metaphors’, which aim to explain M.E. (in silly ways) in the hope of educating those who may not understand the illness; ‘M.E. is Not M.E.’, where a follower is challenged with writing a biography of themselves without once mentioning M.E. (the idea being to remind people that our illness does not define us); ‘Magic M.E. Moments’, where I share funny incidents I’ve experienced with M.E.; and ‘Summer Screwin’’, where I invite people to send in photos of themselves enjoying their summer, to show that M.E. can’t stop us from making the most of the good weather! And of course there were still the annual Screw M.E. Days, which have grown grander and sillier each year! Recent themes include ‘Mad Hatters’, ‘Spread the Love’ and ‘Screw It Forward’, with people now even sending in videos they have made to mark the day.

I had always shied away from talking about myself too much on Screw M.E. because I didn’t want to seem as though I was dishing out medical advice or come across as self-centred. But the number of people following the page was now in the hundreds and I also didn’t want to seem like a robot, someone who wasn’t interested or involved enough to engage on a personal level. So I began a new feature called ‘Wise Words’ – a collection of longer posts in which I discuss lessons I’ve learned or observations I’ve made during my own M.E. journey. Not only has this proved popular, I’ve also found it surprising cathartic. Another big step was, in 2016, launching a podcast channel called ‘Screwy Musings: The Screw M.E. Podcasts’. This was started on a bit of a whim, but I thought it would be another interesting way to reach out to people affected with M.E., so decided to take a chance. Every episode is inspired by suggestions from followers. So far, we’ve covered topics such as basic M.E. questions, how summer weather can affect your health and also had a four-part series on nutrition – as well as a couple of less structured episodes where I just have a good chin-wag with my sister! It’s taken all my guts and nerves to persevere with the podcasts (I hate the sound of my own voice!) and it’s very energy-intensive, but I’ve received a lot of support from listeners and am enjoying the challenge. The latest (and especially lovely!) addition to Screw M.E. is our unofficial ‘Screwy Mascot’, Archie the Dalmatian! Archie is my sister’s dog and, after sharing a few photos and videos of him, he has garnered quite a fan-base! He really cheers people up and provides nice breaks from the M.E. talk. So much so, that I recently created another new feature called ‘Archie’s Corner’, which will involve short, funny posts all written from Archie’s perspective!

 

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Perhaps the biggest change to come to Screw M.E. in recent years, however, is our fundraising. Being in bed so much, I became reliant on online shopping for Christmas and birthdays and found myself drawn to the pages of independent makers and artists. Again, on a bit of a whim, in the autumn of 2015, I decided to email a few to see if they’d consider donating some of their work for an online market on Screw M.E., with everything being sold in aid of the M.E. Association and M.E. Research UK. To my great surprise (and relief!), dozens signed up and we eventually ended up with over 50 beautiful, handmade items for sale. Despite having to run the market from my bed (with a lot of help from my wonderful mum), it was incredible! The response was amazing, and we raised over £560. And so of course, the fundraising market HAD to become an annual thing! We’ve now held three online markets, which have got bigger and better each year. As of 2017, our grand total raised is over £2,100! I’m amazed at what we’ve been able to do for our chosen M.E. charities through a relatively small social media platform. To me, it’s symbolic of what Screw M.E. is all about – people coming together in the hopes of doing some good and making things a little better.

At the time of writing, Screw M.E. has almost 700 followers! It’s grown into something greater than I ever planned or could have imagined. It’s become a huge part of my life and I care about it deeply. I’m not only immensely proud of the page, but of the people affected by M.E. (who now go by the nickname ‘Screwers’!) who chose to stop by every day, share a comment, send a message, open up about their own experiences, and participate in our events and fundraising. It really shows the great level of support, compassion, generosity, enthusiasm and gratitude that is out there in the online M.E. community. The fact that the page seems to really resonate with people means a great deal to me. I’ve received messages from people all across the UK, as well as Europe, America and even Australia, saying how much Screw M.E. has helped them. I think (or hope!) that people can sense that I speak from my heart and still have a sense of humour about life, no matter how bad things may seem. The terms of communication I had from my early M.E. days have very much shaped the development of Screw M.E. – things need to be helpful and informative but remain light-hearted and friendly. I was, and still am, determined not to bombard people with scary facts, or overload them with too much hard-hitting information. Given my own previous experiences with social media, this is something I am very passionate about. My hope is that staying true to this ethos creates an online environment where Screwers can feel relaxed and comfortable, as well as informed and supported.

And Screw M.E. has definitely supported me. The last few years have not been easy for me or my family at all, but when I log onto the page, I feel at home. I’m in a comfortable, safe environment, surrounded by friendly, caring people who understand. Although shut away in my bedroom, I feel blessed to be connected with such a wonderful, extensive community and I have made what I know will be lifelong friendships. Every day, Screw M.E. shows me that even in the worst of times, you can still have a purpose and bring some light into the dark. And despite my ill-health, I have no plans to stop!

 

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