Origins

Have you ever woken up to someone standing over you with an alarmed look on their face? This was the second time in the six months that I was spending in Tanzania where this had happened. The first time I had tripped over a rug and smacked my head on a sharp and heavy wall.  I couldn’t understand why everyone was standing over me with concerned looks on their faces until I realised what had happened and saw the puddle of blood on the floor around me. Of course, what we didn’t know then was that the scalp, with the vast network of blood vessels close to the surface, was notorious for being an extreme bleeder. My friend sprinted to find help and I was taken to the local hospital. This happened in the first month of us living in Tanzania and our Swahili was terrible (it never got much better, to be honest). The nurses that were helping me spoke very little English so we had to make do with a phrase book and hand gestures to explain what had happened. They cleaned me off and then brought out a razor blade. I wasn’t sure what was happening but I looked over at the shock on my friend’s face and knew it couldn’t be good. Unfortunately, in the phrase book, there wasn’t a translation for ‘why are you coming at me with a razor blade’. After a highly uncomfortable 30 seconds we worked out that they had to shave off some of my hair to clean the wound properly. Fortunately it was only a ‘kidogo sana’ amount as the wound was tiny and not the epic Harry Potter-esque scar I had pictured. Thus began the onslaught of ‘pole’ and giggles from our students that seemed to sum up my time in Tanzania. Pole translates as sorry and is used nearly as much as it is in the consistently polite England. Of course, they had reason to say it. From the bald spot on my head, to the ridiculous, spiky tuft of hair that grew over the next few months, and to the look of my arms with its web of freckles and mosquito bites which combined together to form a bizarre maroon colour, it was easy to see why they giggled at me. Despite using a mosquito net on my bed and spraying the room with mosquito repellent, every day I woke up with a deluge of bites over my arms and legs. The teachers we worked with said that I had sweet blood to the mosquitoes, something that I obviously couldn’t change.

Malaria is endemic to Tanzania but it wasn’t anything I ever particularly worried about. I took anti-malarials every day and used the precautions that were available to us so I assumed, rather naively, it would be ok. In the community that we lived in, there were people around us that had contracted malaria, both Tanzanian nationals and travellers like us, and they had taken medication, had a bad few days or weeks but in the end had gotten better. I had become too complacent and sheltered from the reality of the disease, and to me it ended up seeming like a particularly bad case of a cold or the flu; something to be aware of and to try to avoid but something that I would inevitably recover from.

 

The months rolled on. We had Christmas in the mystical and confusing Zanzibar, were fortunate enough to go on safari to Lake Manyara, the Ngorongoro Crater and the Serengeti, carried on teaching, singing, dancing,  playing sports, organising debates and having an unforgettable time with the friends we made out there. March, the final month, came around all too soon. We were starting to realise that it would be over before we even had time to breathe and so we were trying to fit in everything we could. I started to feel tired but put it down to the amount of activities we had undertaken. Then came the second time I woke up to an alarmed look on my friend’s face. It was morning and we were due to teach some classes. I couldn’t understand why she looked so concerned. She told me that she had been trying to rouse me for the last ten minutes, and it had gotten to the point where she had screamed down my ear and I still hadn’t woken. I felt exhausted and had a terrible throbbing sensation coming from my armpit. I looked down and saw that a lymph node had grown over-night to the size of a grape. Still, I got dressed and we went to the staffroom for the morning roll-call. We explained what had happened to the teachers and at once a frantic look came over their faces. They said that I had to go to the hospital at once and be tested for malaria. It was at this point that the reality of the disease hit home. They had spent their lives living in a country where malaria regularly killed people. It had seemed common place to me precisely because it was so common but what I hadn’t recognised was the constant worry bubbling underneath the surface. Anyone could get it at any time, and if you couldn’t afford the medication then within a matter of hours you could be dead. I thought back to a friend from schools prediction that I would die at a young age from a tropical disease. It had seemed ridiculous and funny at the time but it suddenly became a possibility. I convinced myself that I was just reacting to their worry and was getting into a fret over nothing, but still went down to the hospital. I was seen immediately by a local doctor, despite the queues of people waiting to see him. The guilt washed over me. It didn’t seem fair that just because I was an ‘Mzungu’ I would be seen at once. But it was the way it was done there. They pricked my finger and a little while later he came to see me to say it came back positive for malaria. I paid for my medicine and went home to rest.

Although I spent those next few hours exhausted and in pain it didn’t seem as bad as I was expecting. Sure, I felt hot, but I always felt hot there. I never hallucinated from the extreme fever I was expecting to hit me. But maybe we caught it early? Maybe I had taken my medication before it had properly swarmed my immune system. I later learnt that there are four types of malaria and one type in particular causes a milder form of it. Despite the frantic calls from my parents to come home at once I convinced them to let me stay for the final three weeks. We were due to run the fun-run in the Kilimanjaro marathon the next day. My friends said I should be in bed resting but I felt well enough to at least walk the 5km (I was secretly grateful that I didn’t have to run it). I succeeded in completing it and the last three weeks went by in a flash.

 

After we returned home life went back to normal. I was due to begin university in the September, but it was only April, so I started full-time work in the job I had before I left for Tanzania. As the weeks went by I never quite felt the way I had before I left. I was used to an unlimited amount of energy but slowly every-day activities felt a lot harder to carry out and I was struggling at work. Towards the end of the day I would become exhausted and unable to continue. I worked in the local hospital so when it became apparent that something was wrong I was seen by doctors in the adjacent A+E department. With my history of malaria and travel in a tropical country, it was taken seriously. I was tested for malaria again, and although there were always a small number of parasites in my blood, it wasn’t enough to explain my symptoms. I stayed overnight whilst they ran a 24 hour test for HIV, had what felt like litres of blood taken to test for every disease and parasite they could think of and nothing ever came back positive. It was at this point that I was referred to the nearest tropical disease department.

By August, I was generally feeling ok and was getting ready to start university. I went to the Leeds festival and came back with a massive abscess on my hand. We drained it and it was ok but they started to constantly plague me. A few weeks into university I had one on my leg that grew to the size of a grapefruit and left me feverish and exhausted. At the same time, I had constant ulcers on my throat and in my mouth and other infections in my body. I ended up on low dose antibiotics for years.

Two years went by and the doctors had run every test they could think of, my liver and spleen had enlarged and I had grown exhausted and in constant pain. I was due to start my final year at university but had to defer it as I couldn’t keep up with the work. I would sleep for hours upon hours and when I was awake I would be sick or wouldn’t have the strength to climb the stairs in our house. It was then that I was diagnosed with Myalgic Encephalomyelitis (M.E.). I had no idea what it was but upon spending hours researching on the internet I learned that the symptoms seemed to fit. As well as the constant pain in my muscles, my cognitive ability dwindled to the point where words disappeared from my vocabulary and I struggled to read a book- my favourite past time previously. However, the post-exertional malaise was the symptom that stuck out- the symptom that is unique to M.E. I had often wondered why, 24 hours after carrying out an activity, I would be resigned to bed for the next couple of days. It began to make sense.

Whilst this was happening my mental health started to decline. In my year out of university, although I would work tirelessly for the university’s Stop AIDS society when I could, I began to despair that life would always be like this. The anxiety increased and I began to experience panic attacks. They became worse when I was outside the confines of my house and so I started venturing out less and less. I moved to an area of the city that seemed far away from everything. In reality, it was only an extra five minutes walk, but that five minutes started to feel like an eternity. I had spent ten months doing an internship with an international development charity, and although it was amongst the best ten months of my life, it was also the hardest. When I finished I was left physically and mentally exhausted and unable to leave the house. My partner had to travel home for three weeks to study for his upcoming medical exams and I was left alone. In the weeks before, I had started to become friends with the local cats. Growing up I had been surrounded by animals and it was second nature to me to spend all my time with them. One of them in particular, whom I named Alfonso, would come round to the house every day and was my lifeline in those three weeks. I never felt alone when he was there and we would spend hours playing with straws. Another cat, which I named Mr Meow (due to his love of meowing) had a love for Alfonso and he would come round too. He was so nervous that he would run as far into the house as he could when he thought no one was looking and stare longingly at Alfonso. It was both hilarious and sad, especially when he got too close and Alfonso would swipe at him. There were two other cats in the area who never came to the house- Mrs Tiggy Winkle (as she looked like the Beatrix Potter character) and Inspector Fluffykins (as he would constantly survey the street from his perch). Maybe I was starting to become the local eccentric, the mad cat lady people would stare at when I left the house, but it got me through those weeks. When they ended I realised I really needed to do something about the agoraphobia. Eventually I gathered together all the strength I could muster and made it to my target- a café two streets along from us. Those months had left little room for hope and so I thought I would never achieve it. But I had.

With the help of doctors, medicine and the extraordinary people around me, I began to get my life back. After two years I managed to secure a part time job and life was looking up. I cannot begin to describe the despair and pain I had been through in the seven years since I was diagnosed but at least now I could work and start to rebuild my life. And for a while it seemed ok. It was hard, I would spend whatever free time I had asleep and recovering but at least I had some freedom and the sense that I was achieving something. All I had ever wanted to do was to help people. It was why I had travelled to Tanzania- the youthful naivety and ignorance astounds me now- why I had carried out a myriad of voluntary positions whenever I could and why I took the internship. This job, however, wasn’t what I had dreamed of. In fact it was the same job I had done when I was 16. At that point I had thought that I could achieve anything I put my mind to. Now, the achievement lay in getting through the day without collapsing from exhaustion. Still, I spun it positively in my head, and I helped people in any and every way that I could despite the pain and exhaustion it caused me. The feeling was amazing.

 

Since then, I have moved cities to Liverpool and I took up a full time position. For the first few months I couldn’t believe I was managing it. Sure, I would be in agony on a day-to-day basis but I was working and I was saving money. The one thing that had always caused me to feel the most despair was the thought that I would never be financially stable enough to adopt a cat or a dog. Now it seemed like maybe, one day, I would be able to. However, the inevitable happened. My physical and mental health deteriorated again and eventually I had to stop work. And with that the story is up to date. It has been ten years since I first became ill at age 18. In that time there hasn’t been a day when I haven’t been in pain. I can’t remember what it feels like to be ‘normal’. I have spent much of that time asleep or feeling too unwell to move and I have only ever had moderate ME. I have had operations, viruses, infections, X-Rays and MRIs, and hundreds of blood tests but this pales into insignificance compared to people with severe ME. They are the ones who don’t have the energy to eat food or go to the toilet, who have to be tube-fed, who can’t be around any noise or movement as it causes them severe pain and a crash that will set them back by months. The forgotten ones who spend their lives in bed and don’t even have the energy to remember what a cloud is let alone to look at one again. At least I am still able to do this. Sure, there are times when I have been in bed or the house for weeks at a time, where I have been in so much pain that someone else has had to brush my teeth for me or when I can’t be hugged because of the pain on my skin, and occasionally I have to use a walking stick to get around. But still, I am able to look outside of a window and see the beauty of the world around us. I might not be able to walk in it very often but I can still appreciate it. And there are things that bring me hope: the extraordinary work of researchers and doctors who are spending their lives trying to find a cure for this devastating disease and the work of campaigners across the world who are raising money to fund the research so deaths can be prevented. The knowledge that people suffering from similar diseases,  like Multiple Sclerosis, faced the same stigma that we are going through- the disbelief that it is a real disease and the belief that it is all in our heads- and yet now have medication that can help with their symptoms and are taken seriously helps too. In this day and age it is shocking that some people still face such awful stigma from diseases like M.E. that they commit suicide. And so, given that I still have the strength to write this, I feel it is necessary to speak out about it. It is not all in our heads. Sure, we develop mental health problems but really, given the amount of pain and the loss of the life we lead before ME, it is a miracle that we don’t completely fall apart.

There is a quote from one of my favourite authors, Haruki Murakami that always springs to mind.

 

“And once the storm is over, you won’t remember how you made it through, how you managed to survive. You won’t even be sure whether the storm is really over. But one thing is certain. When you come out of the storm, you won’t be the same person who walked in. That’s what this storm’s all about.”

 

I know that at times it feels like the storm will never end but I want you to know that you are not alone. Every time you feel pain, or a sense of hopelessness, know that I am right there with you, rooting for you. There will come a time when you achieve the seemingly unachievable- when you are able to look at a cloud again or when you are able to walk to the café at the end of the street. Across the world there are millions of people rooting for you; from people with chronic and debilitating diseases to campaigners and doctors. We are all bonded together and we are all right there alongside you. We are survivors. Please, never give up hope.