When it all sort of fell apart

(Image descriptions at bottom of page)

If I asked you to look through these photos of me from the last 6 years and pinpoint the precise moment I became ill, would you be able to? In fact, looking at these pictures I think you could be forgiven for thinking I’m talking a load of crap when I tell you I was sick in each one.

Although looking back I can see that the signs were always there since my teenage years, I can identify 2014 as the year my health problems really began. We’d just done our first full school year in Milan, and we were having an absolute blast. We were hiking, travelling, meeting new people, dining out a lot and generally just loving life. Then, at the start of my second academic year in September 2014, I noticed that I was starting to get very run down. I was catching every single bug going, and taking a really long time to recover. I had to reduce how much activity I was doing outside of work because I’d get sick if I tried to do too much. I simply couldn’t keep up the same pace as before. My friends even asked me why I hadn’t been coming out with them as often, and I didn’t really have an answer because I didn’t know what was wrong.

Towards the end of this school year I was diagnosed with Endometriosis, so I chalked a lot of my problems up to that. I thought things would improve now that I had some treatment, and they did for a little while, but as we rolled through 2015 I began to notice more and more that I couldn’t keep the same pace as my friends and colleagues. I was constantly run down with cold and flu symptoms that never seemed to fully clear up.

I went to my doctor and had lots of tests but everything appeared fine, so I just carried on. I knew I didn’t feel right, but I was still determined to live my life. Naively, I thought perhaps I just needed to push myself a little harder. And so I continued cycling, running and travelling. We still went on lots of trips, and visited lots of new places. I put on a brave face, but privately it was taking its toll on my mental health. I’d get to the school holidays and my body would crash. This caused problems in some of my friendships because I had to limit how much I could do in the holidays. I simply could not physically manage to see and catch up with everyone properly whenever we flew home to visit, because my body was starting to fall apart and the toll this was taking on my mental health was profound. I didn’t have the access to the kind of language I needed to explain this to my friends at the time because I didn’t even know I was sick. My doctor just kept telling me it must be stress, so I was embarrassed to admit I was struggling.

While we will never regret a single minute of our time spent in Italy and all the wonderful experiences we had and brilliant people we met, my husband and I look back now on old photos from our years in Milan and kind of laugh (a little bitterly albeit) because although I’m smiling and still out doing fun things, we remember that on almost every single trip we took together over that four year period I was sick. I was always sick.

To everyone else, it looked like we were living the high life - and I guess in many ways we were. We were both on a good wage and could afford to take lots of holidays which is a huge privilege in and of itself. However, we would have to limit our physical exertion on these trips and stick to low energy activities. We flew to Prague for a Christmas trip once and ended up just doing a big shop at the supermarket and spending most of the time in our Airbnb, watching Netflix on our phones because one morning of sightseeing took it out of me for the rest of the trip.

Naturally, this serious decline in health was also causing problems for me at work. Until very recently, I’d always had a “push through” attitude to sickness. I took pride in the fact that I rarely, if ever, took time off work. No matter how crap I felt I would always drag myself in and get through the day. But this wasn’t sustainable, and work started to become a real struggle for me. I would wake up every morning feeling like I was tied down with lead weights. I started having to set my alarm an hour and a half earlier just to allow myself enough time to lie down and rest after each stage of getting up, dressed and ready for work. I could no longer manage the 15 minute cycle to work, so we spent a lot of our money using the city car hire scheme (think Boris bikes, but cars). I couldn't eat my lunch in the staff room anymore because trying to maintain a conversation or deal with the noise would cause me to crash in the afternoon. I was usually flat out in bed by 6pm most evenings, and had to spend most of my weekends in bed which was not helping my workload at all. I remember one particular evening after work, when the lift in our building was broken, I just sat at the bottom of the stairs and cried because I didn’t have the strength to climb the two flights of stairs to our apartment.

I was also struggling with some cognitive difficulties (although I didn’t know it at the time): I was suddenly having difficulty using simple computer systems at work. I was forgetting everything, and finding simple, everyday work tasks like planning or sending emails completely overwhelming. The words on my computer screen would blur and I would struggle to focus, but I had my eyes tested and they were fine, so I had no clue why any of this was happening. It was actually pretty terrifying and I honestly thought I must be on my way to some kind of mental breakdown, because no matter how many tests my doctor ran, everything came back fine. We had no answers for why I was feeling this awful, beyond the usual “you’re probably just stressed” suggestion from my doctors. Most mornings I would walk into my classroom and cry, wondering how on earth I was going to summon up the energy needed to get through the day.

Secretly, I started to feel as though it was simply down to me being a failure. Maybe I just wasn’t cut out to be a teacher. I couldn’t keep the pace. I wasn’t clever enough. All of this I now know to be nonsense, but I was carrying that around with me every day.

What I’ve learned from this is that you can never judge a book by its cover. Outwardly, I appeared healthy and happy but my life was falling apart around me. By 2017 my health was at an all-time low. Those last six months of school, before being signed off sick, were the most awful, traumatic, back-breaking months of my life. I cannot tell you the amount of sheer grit it took to get up every day feeling as sick as I did, to drag myself into work and make it through every day with a smile. Meanwhile, having absolutely no idea as to why I felt this way and worrying that I was going to lose my job because I had to keep taking time off. I can honestly tell you I have never felt as low as I did for those six months. Deep down I think I knew that something was very wrong with my body, but again I had no tests to prove this and no language to try to explain what was happening to me.

The difficulty with M.E and other ‘invisible’ illnesses is that what you are seeing on the surface is often the tiniest tip of the iceberg. Most of us have no physical indicators of sickness. Most of us, in fact, are invisible in the literal sense because we are missing from the world. We’re hidden in our homes or our beds, with social media being our only real way to be part of the world outside of our four walls.

Please try to remember that none of us truly know what someone is dealing with and that sickness and disability comes in all shapes and sizes. A lot can be hidden behind a smile, a brave face and a nice photo on Instagram.

🚩 Disclaimer: These images were taken before my M.E became much more severe in the summer of 2018. These photos are not representative of all people with M.E, many of whom are house or bed bound as I am now. 🚩

Image descriptions:

1. A photo of Lorna - a white woman with long dark brown hair and a fringe, wearing a white vest, green cardigan and beige walking trousers. She is standing on a field, in front of a scenic view of a mountain and posing as if she is looking off into the distance. She is trying not to laugh. 2016.

2. A photo of Lorna and her friend Neil - a tall white man - standing on a bridge both doing ‘muscle poses’. Both are wearing striped tops and jeans. 2014.

3. A photo of Lorna having snow dumped on her head. She is wearing a purple coat, yellow hat and black trousers. She has her eyes closed and is laughing. 2016.

4. A photo of Lorna riding her bike in the park. She is smiling at the camera. 2017.

5. A photo of Lorna walking uphill on a snowy hiking path. She is wearing a yellow hat, black top and jeans. She is carrying a backpack and looking up at the camera, smiling. 2014.

5. A photo of Lorna sitting by the sea harbour in Santa Margarita, Italy. She is wearing sunglasses, a scarf and a leather jacket and holding an April spritz. She is smiling. 2016.

6. A Polaroid photo of Lorna and her husband, Rob - a white man wit ginger hair - hugging and smiling at the camera. Rob is holding a pint and Lorna is wearing ‘hen party’ paraphernalia. 2016.

7. A photo of Lorna, her sister and brother in law attempting a three-person piggyback in a swimming pool. Lorna is on top, giving a thumbs up to the camera. 2016.