Isolation, Isolation, Isolation

What does the phrase ‘millions missing’ make you think of? People who have run away or disappeared? Maybe it makes you think of money that has been squandered away in a tax haven? I bet it doesn’t make you think of the 17 million people worldwide who have M.E, a hidden epidemic that can affect any one regardless of age, background or previous health. For us, it is a call to action, a reminder that we are not alone and the most fitting description I have seen for the disease. After all, the reality of the disease is that when we are at our worst we retreat to our rooms and so few people see the full extent of the damage it can inflict. On paper it seems pretty silly to do this when we so desperately need to raise awareness but in reality we have no choice. Let me take you back to this time two years ago when I was just about managing a full time job. I would be surrounded by people all day and with each person that I saw there was more sensory information for my brain to process, more work for my body to carry out.  By the time I got home at the end of the day I would have to hide under a desk in a corner of a room that was furthest away from our neighbours. The slightest sound would leave my body shaking; the slightest touch would cause excruciating shocks throughout my body; and lights, smells and taste would develop into migraines and blurred vision. It is hard to describe just how much sensory stimulation your brain has to process all day, every day, until you can feel every single cell in your body being overwhelmed by your surroundings. It sometimes feels like you can see the energy waves that each of these actions takes coming towards you and there is nothing you can do to stop its impact. Every sound feels like a horn being blown down your ear and every touch feels like a blow to the body. When you add debilitating muscular and joint pain, nausea, vertigo, crushing fatigue, anxiety and depression, and hundreds of other symptoms into the mix it is easy to understand why we need to hide ourselves away.

 So how do you handle the isolation forced upon you by chronic disease? This is something I have been thinking about for a while now. I don’t know if it’s the time of year, the weather, another illness anniversary (11 years since I contracted the malaria that left me with M.E.) or even just the fact that more and more people are telling their stories (which is amazing), but it definitely seems to be a part of the collective consciousness at the moment. For me, it is the biggest paradox of the disease. When I am well I love being around people (I am an ENFP for anyone interested in Myers Briggs). When I am not well, I still love being around people but my body does not and so I have to isolate myself. With isolation there comes an onslaught of other emotions: guilt, longing, depression, anxiety, helplessness, loneliness, feeling of being trapped, boredom and emptiness. At its worst it can feel like you have died and you are watching the rest of the world move on but you are still there, still breathing, existing but not living.

 In so many ways this is an incredibly hard subject to talk about. On the one hand, I encourage and want loved ones to experience everything that I cannot. I know that if I were well enough I would be out there with them and I never want them to feel guilty for that. On the other hand, it is so hard to watch them walk out of the door and know that you will not see another soul for the entire time that they are away and know that not only do you have to experience the loneliness and longing but also the physical symptoms, on your own. At times like this, when you are at your lowest, it would be easy to fall into negative habits to escape the pain; alcohol, drugs, self-harm etc can suddenly seem very tempting. I’ll be honest here, I have used alcohol as a means of numbing physical pain when I have been out with friends and I have used it as a means of numbing mental anguish when I have been at my lowest but it has only ever made the symptoms worse in the long run. If I had had the physical health and the finances I probably would have been tempted to jump on a plane and fly as far away as possible too, anything to escape reality. It took me a long time to accept that there is no escape from the disease but there are healthy ways to cope. For me, the turning point was when I started writing about the disease and connecting with other people in similar situations. That is why this community is so important. We can be each other’s strength when it feels like there is nowhere else to turn. If I were to talk to someone who had just been diagnosed with the disease, the first thing I would point them to would be the ME Association and the community that Jennifer Brea has created around Unrest. It is vital for people to know that they are not alone particularly when faced with an illness that has led to so many suicides. We need to keep talking and connecting and raising awareness. We need the world to know that we are still here and we will continue to fight for the end to stigma, discrimination and disease.

 The other thing that has helped me to cope with the isolation and the ensuing anxiety and depression has been SSRIs, specifically Sertraline and Citalopram used at various points over the last five years. I’m not going to sugar-coat things here, they have come with side-effects that have been hard to manage- weight gain, nausea and vomiting, acid reflux, brain zaps and mood changes to name a few but they have also allowed me to connect with a world that has seemed alien and frightening. If you do decide to go down this route then it is vital that you talk to your doctor and keep up with medication reviews, particularly when and if you decide to taper off them (please, never go cold turkey). It is also important to remember that it takes a while for the benefits to be felt but if you feel worse and/or have suicidal thoughts then go back to your doctor for a review. The benefits, however, have more than balanced out the negatives. Where once I couldn’t leave the house, now I can travel across the country to visit family I hadn’t seen in months or years.

Life with chronic illness is hard but there are ways to cope to make it easier on yourself and the people around you. Don’t be afraid to talk about what you are going through and don’t be afraid to connect with others in similar situations. It can seem like your life has been destroyed but it hasn’t, it has just changed. Every change brings new opportunities and new ways to connect with the world. You are more than your illness. You are more than your scars.



You have found me, dear readers, floating on the precipice of doubt and despair. I started the year off feeling hopeful; hopeful that there will be some let up from the overwhelming pain that has engulfed my life over the last few months but, alas, the pain is slowly starting to subdue any optimism I may have felt. I am confident, however, that this feeling will pass and it will just be yet another low point in the endless battle with chronic illness. It is often at times like this when I think about my future and the future of this disease. I often feel, as I’m sure most of you do, that the future I envisioned pre-illness was ripped away from me the day I first became ill. I have fought hard against that feeling; I have struggled through long working days and even longer sleepless nights full of pain and exhaustion to try and maintain a semblance of normality and independence but as the years have rolled on the relapses have become harder and harder to come back from and that desire to fight against it has dwindled. Indeed, I’m not even sure what it is I am fighting for anymore. I have long forgotten what a painless existence feels like; it is an alien concept, far and remote from anything I can remember and I am starting to realise that that is ok. Maybe this is what true acceptance feels like and maybe it is time to pick which battle I should put my remaining energy into; the battle raging within my body and mind or the collective battle that we all are facing, the battle for medical and social acceptance, not just for people with M.E. but for all people will invisible illnesses and disability. I am choosing the latter. We have all seen the wonderful work that Jennifer Brea and Unrest has been doing to change the opinions of the public and now it is up to us to take up the baton and continue her work, for those that are too unwell to do it for themselves, and for the future generations, so they don’t have to feel this pain. Alone, we can accomplish small feats, but together, together we can change the world for so many people! So keep writing, filming, talking and organising and together we can bring all invisible diseases out into the light.

Time for Unrest

Ten years. Ten years. I remember the day I turned ten and how mature I felt, I was into double figures, practically an adult. How much I had achieved in those ten years, how much I had learned, how many books I had read. Ten years is how long I have been ill for, a long ten years and yet I feel like I have achieved so little. On my next birthday I turn thirty and yet in some ways I feel like I have to depend on other people more now than I did at ten. There are times at 29 when brushing my teeth myself seems impossible, I could definitely do that by myself at ten. There are times at 29 when I struggle to leave the house, boy could I do that by myself at ten, being outside in the countryside surrounded by the animals I loved was what I lived for then. There are times at 29 when I struggle to read a few pages of a book, the countless lives I had lived and adventures I had been on surrounded by characters from The Faraway Tree, Middle Earth or Narnia by the age of ten is something I treasure. Ten years. In the past ten years there have been few occasions where I have felt genuine hope about the future of people with my disease. As I walked into the screening of Unrest that unfamiliar feeling began to rise in my chest. I hadn’t been around anyone with M.E. since I was 21 when I had taken part in group meetings at my local M.E./CFS clinic. I was the only one under the age of 40 and everyone else was discussing the difficulties of looking after their children or staying in work whilst I was still studying at university. Their lives seemed like a world apart from mine. Now, as I looked around the cinema it felt like a community had developed, a collective hope for the future.

There are around 250,000 people with M.E. in the UK, 1 million in America and 17 million worldwide and yet so little is understood about this disease. The film opens with footage of Jennifer Brea (the creator and director of the film) lying on the floor, barely able to move for the pain and fatigue in her muscles. It is a scene that is hard to see being played out in front of you, particularly when you have been in that situation so many times before. She is later seen lying on the stairs, unable to continue for the fatigue and at this point tears fill my eyes. I remember a time in my student days when one of my flatmates found me collapsed on the stairs, unable to climb the last three steps until I had rested for a while, luckily the level of fatigue stopped me from screaming out in pain and so it wasn’t as awkward for us both as it could have been. The film’s biggest achievement (and also the hardest part to watch) is that it doesn’t shy away from the reality of the disease; it shows the physical pain, the neurological symptoms and the emotional turmoil in all its gritty rawness. It is something that I have tried to shield my family and friends from by hiding away in my bedroom when the symptoms hit hardest. Maybe that was the wrong decision, maybe if I and people like me showed people the true extent of the disease there would be less stigma but in some ways I think it benefitted me more than anyone else- by not showing many people the true extent of the disease I was able to live in denial a little longer.

The film centres on Jennifer Brea, a young woman who was a PhD candidate at Harvard University when she first became ill. The emotional centre of the film is her relationship with her husband, Omar Wasow, a professor at Princeton University who is famous for helping Oprah Winfrey understand E-mail and the internet. Whilst little is known of the pain M.E. sufferers go through on a daily basis, even less is known about the turmoil of the carers, often the partners of the patient. The film succeeds in breaching that gap and shows the seclusion felt not only by the patient but the families and friends surrounding them. Omar talks of his experiences with Jennifer, his fear that people pity him and their hopes for starting a family and although it is heart-breaking to watch, their love and respect for each other shines through and adds gravitas to the film.

It then brings in people from around the world who Jennifer Brea has connected with online, people in similar situations to herself where partners and family members have had to take care of them. We hear their stories from their bed, the place where most of them spend their lives, and we connect with their families. At this point the tears were flowing; the film has entered its act 3, scene 3, the character’s nadir. We hear of one woman whose husband left her because he didn’t believe the disease was real, another from Denmark who was forcibly removed from her home and detained under the Mental Health Act, a woman in her twenties who has been ill since she was a child and a young man from America who was once a renowned photographer and had travelled with Barack Obama photographing his 2008 presidential campaign. On the surface there feels like there is little hope but when you reach underneath you feel the unrelenting passion and humanity that exists in each of them, the will to survive and to thrive. It contrasts with footage shown earlier in the film of comedian Ricky Gervais and his belief that people with M.E. “just don’t feel like going to work today”, jokes which have perpetuated the stigma around invisible illnesses and have only served to prolong the needless suffering of people around the world.  The next segment of the film chronicles their search for a cure and underscores Jennifer’s determination to survive and live her life free from pain, often through ridiculous means. It brings a welcome comedic relief to the film as we journey alongside them as they travel to dry, hot environments in the hope that the heat lessens her pain, see the small mountain of medication and supplements she takes every day and watch as she embarks on life living in a tent away from traces of mould.

In the last segment of the film we meet the families again and see the progress that has been made. It left me with an overwhelming feeling of hope; hope that we are heading towards a medical breakthrough, hope that the media and public’s opinions on M.E. are changing, and hope that life is going to get better. For so long I have campaigned for causes close to my heart but I have never campaigned for M.E. and the film helped me to question why that was. If I’m honest, I think in many ways I subconsciously took the stigma on board. I would watch comedians like Ricky Gervais make jokes about M.E, would hear comments about my inability to perform certain tasks from people I respected, and would watch as if from afar as my body’s capacity to recover slowly dwindled and all I would feel was shame, shame and guilt. How could I campaign for M.E., give my heart and soul to this cause when I didn’t even believe that I deserved to get better? This film changed all that. I was surrounded by people who had the same disease as me and all I saw in them was strength and courage. I heard teenagers talk about how much school they had been able to attend that week, watch as the people on my row were practically jumping out of their seats because finally they were seeing their lives and their pain being recognised on a film that has won awards and accolades around the world, and I saw an entire audience in tears of empathy and relief. I have never been to a screening of a film where there was such an obvious community bonded together by their suffering and it was awesome. Truly, it is Time for Unrest.

Panic on the streets of Liverpool!

I remember my first panic attack so vividly that when I think back I can still feel the nausea building in my throat and the surge of adrenaline coursing through my veins. Many of the symptoms I had matched my experience with a bout of viral meningitis I had when I was seventeen and so, like many people who experience their first panic attack, I ended up in hospital. As the panic intensified my brain latched onto the thought that I was severely ill which produced a positive feedback-esque loop until my body was too exhausted to sustain that level of panic. As the adrenaline subsided logic took hold and I realised how ridiculous I sounded- when I actually had meningitis all the energy I could spare went on finding ways to block out the light not on panicking about being unwell. When I returned from hospital that night I remember sitting on the wall outside of my flat and contemplating what had happened. I had little knowledge of panic attacks at that point and wouldn’t for a few months, the doctors had told me I had a virus and as far as I was aware that was it but I couldn’t shake the feeling that I had been overwhelmingly foolish and I worried about the money and time I wasted for the NHS.

As the months and years rolled on the panic attacks increased in intensity and number. They began waking me up from sleep and left me with a constant undercurrent of panic which stifled any enjoyment I could muster from a life already impaired by other diseases. Every time I tried to leave the house my heart rate would increase to tachycardic levels, hyperventilation would settle in and I would resign myself to leaving the house later in the day when I had readied myself for the onslaught of panic. Bit by bit the panic grew inside me, insidious and sly in its nature, until it overwhelmed me and I could no longer leave the house at all. At its worst I didn’t leave my street for three weeks. Sometimes I would sit at my window and watch other people come and go and wonder how they found the world so easy to navigate and feel so at ease in themselves and their surroundings. Consequently, the feeling of worthlessness would engulf me and even when I managed to leave the house any joy I could have claimed was swept away by comparisons with others.

Eight years have passed since that first panic attack and there are things that I have learned about navigating the world with mental health problems:

  • I cannot state this enough, it is not your fault. It is NOT your fault.
  • There will be times when you will feel like things will never get better but they will. The symptoms will ebb and flow throughout your life and good times will interweave with the bad. I can’t promise that you will completely recover but you will find ways to cope when the bad times hit and you will adapt to it. There have been so many occasions when I have wished for a quick fix, for something to come along that can cure everything but if that had happened then I wouldn’t have grown as a person (it is ok to laugh at this if you are feeling particularly bitter and cynical- I have been there on so many occasions).
  • It is ok to turn to medication to help you through the bad times- I would still be hiding under a table somewhere if I hadn’t have turned to the doctors for help. They come with side effects but it is up to you and your doctor to decide if the positives of the medication outweigh the negatives. Personally when deciding if I should turn to SSRIs for a second time I decided that being able to leave the house was more important than the weight gain. It was a hard decision though. I also have a disease that is made worse by exercise so I can’t turn to the gym to lose weight but it was worth it. However, medication should be used in conjunction with other techniques like CBT, meditation etc so you can learn to adapt without medication. I have found ways to cut off the panic before it turns to a full blown attack but you have to learn techniques that work for you.
  • I think the biggest thing I have learnt over the years is how to say no without the inevitable all-consuming guilt. I am blessed in a way that I had M.E. before the anxiety and so things I have learned to help with one disease can be transferred to the other. I have spent so many years feeling guilty about not being able to do many different things and it would often make symptoms worse. Eventually I had to realise that the longer that went on the longer it would take me to recover, which nobody wanted. This is particularly important at the start of a disease when you are still in an acute stage- if you say no to things then and use that time to rest then you have a very real chance of recovering quickly.
  • Be kind to yourself. If you need to rest, then rest. If you need to cry, then cry. Feel the pain and don’t try to numb it through artificial means (drugs etc). If writing really horrendous poetry helps in the dark times then do it, it will at least provide some light relief later.
  • The brain is a wonderful thing and will help you to find ways to cope. I have developed a wonderful skill of compartmentalising minor pain; I am aware it is there but it isn’t all- consuming. You will find ways to cope too.


There are other things I can add to this list but I guess my main point is that you will adapt and you will find ways to cope. Talk to people around you, join groups on-line, talk to your doctors or counsellors, you are not alone in this. A few weeks ago I was walking around Liverpool city centre in the midst of panic and the one thing that helped was the thought that there are probably others around me who are feeling equally overwhelmed. They may not show it as obviously as I thought I was (crazy girl trying to escape the ravages of Waterstones) but it doesn’t mean they are not feeling it. You are not alone, it is not your fault and it is nothing to be ashamed of!

Let’s talk about climate, for a change

A few years ago my partner and I were discussing where we would move to next. We had met in Newcastle-upon-Tyne and we had both lived there since starting university in 2007. To this day Newcastle still feels like home and I think it always will but it felt like the right time to experience a new city and be closer to family. My health had stabilised as well as it was ever going to and a familiar feeling of restlessness and eagerness for the unknown had returned to my ailing body. In all of our debates about which city to move to the word ‘beautiful’ had never entered the vernacular and it was far from what I thought of when we talked about Liverpool. But now, as I am sat at a desk overlooking the River Mersey, with the wind surging through the open window and the ominous clouds threatening to discharge its contents over the ever-watchful Liver birds, it is the only word that springs to mind. Storms always leave me with a sense of wonder and expectance. The world feels fresher and untarnished, like the pains of the past have been washed away. I mean that in a literal sense for myself; high temperatures and sweltering humidity cause the levels of fatigue and pain in my body to reach heights that leave me unable to perform even basic tasks, praying for the protection of the cooler nights to arrive quickly. It may seem bewildering to the sun-worshippers out there that there are people in the world who look forward to the cooler months but when the newsreaders and newspapers urge you to look after the more vulnerable sections of society during a heat wave, I implore you to take them seriously, it really can save lives. It terrifies me to think that over the next fifty years the climate of the UK is going to change so much that I will be begging for the current heat wave temperatures; by then 30° will be a cool summer for the UK and temperatures in the high 40s will be occurring. 16 of the 17 warmest years on record have been since 2000 and as the years progress these records will be broken again and again. By 2050, it is predicted that 10,500 people will die from heat-related causes across Europe every year. It is hard to imagine how hospitals and care homes will cope with the inevitable huge influx of people but unless governments around the world take action, drastic action at that, and move towards renewable energy this will happen sooner than any of us can bear to contemplate.

Have you ever spent a lazy afternoon in the sun cloud-spotting and wondered what makes a cloud white and the sky blue? Well, it’s all to do with the refraction of light particles. Do you remember the days of GCSE Physics (I know, a long time ago) when you were given a triangular prism, the little block of glass with a triangular cross-section? When you shone light on the prism the light waves were refracted and a rainbow appeared on the other side. This always struck me as pretty cool (and pretty, too). Well this is exactly how it works in the atmosphere. The visible light from the sun travels through the atmosphere and hits atmospheric particles, each visible colour has differing wavelengths (blue is the shortest and red is the longest), the smaller atmospheric particles scatter the shorter blue wavelengths more efficiently and so the sky appears blue. The large water droplets in clouds scatter all the different wavelengths at a similar rate of efficiency and so the clouds appear white (the combination of all the different colours). During a storm when the water droplets are bigger a cloud can appear grey up close. This is because the light is scattered and mostly absorbed before it can reach the bottom of the cloud. Much of the light is reflected back up and so the sides and tops of clouds appear white, in fact when you are flying above clouds they will always appear white because of this.

I often think clouds are taken for granted. Yes, they might bring rain that dashes your hopes of frolicking in the hayfields (that’s for you, May) or long listless afternoons with a picnic in the park but without them there wouldn’t be life as we know it on this planet. They are remarkable things. They can weigh anywhere from a million pounds to trillions of pounds and can be as tall as 200,000 feet. On average they cover 65% of the world’s atmosphere, play a huge role in regulating the world’s temperature and have both a positive and negative effect on the changing climate. On the one hand, their albedo (their reflectivity power or their whiteness) reflects some of the short-wave radiation that arrives from the sun before it reaches the surface thus ensuring that the world doesn’t heat up too much, and on the other hand they trap some of the long-wave infra-red radiation being reflected by the surface which causes the earth to heat up. Currently, clouds have a net cooling effect on the planet, but there is much debate as to what will happen in the future as the different types of clouds all play their own part. There are over 100 types of clouds but they are divided into 10 distinct categories depending on its shape and height in the sky. It is precisely because of the cloud’s height that the impacts of  clouds on global warming are so hard to predict; low down clouds reflect more sunlight and so have a net cooling effect on the temperature, whereas clouds higher in the atmosphere trap more of the outgoing long-wave radiation and so have a net warming effect. Recent research has shown that clouds are moving towards the poles where there is less solar radiation and so less radiation to reflect back to the atmosphere, and they are increasing in height and so more of the long-wave radiation is trapped, thus the rate of warming is increased. There is still much uncertainty surrounding the impact of clouds on climate change but it is clear that they will have a huge impact on the future of our climate; I know that next time I look up to the sky and see the glint of the sun’s rays soaring through the clouds I will be contemplating this fine balance that allows life to flourish.

The storm has reached us now. The myriad numbers of boats are struggling to moor as the might of the winds cause the boats to rock with the swell of the estuary. It invokes memories of countless nights where vertigo would ravage my body, the bed acting as my boat as I pray for the calmer seas of the daylight. This was only ever a brief respite though, the eye of the storm, before the nausea would surge once again and I would lie motionless for hours on end, tears building in my eyes as the unyielding pain in my muscles grew ever greater. As the storm reaches its peak the precariousness of businesses and flats overlooking the Mersey becomes clear. We are on the seventh floor of an apartment building, but also at the top of this particular section and so we are also at risk of flooding. In fact, this flat has flooded in previous tenancies and so we are considering all the necessary precautionary measures as we look towards a future where flooding becomes increasingly more likely. 6 of the 7 wettest years on record have occurred since the start of the millennium. Currently more than 1 in 6 homes in the UK (approximately 5 million) are now considered to be at risk of flooding. The cost of flooding currently stands at £340 million but will increase to £620 million by 2050 when it is estimated that 1.3 million houses will be at high risk of flooding. Coastlines will change as sea levels continue to rise; they have risen around 8 inches in the last century but the rate in the last 2 decades is nearly double that of the last century and it has been predicted that all of Britain’s sandy beaches may be washed away within the next 100 years. Since the beginning of the industrial revolution, the acidity of surface ocean waters has increased by 30% and the amount of CO2 absorbed by the upper layer of the oceans is increasing by around 2 billion tonnes per year. CO2 levels hit 400 parts per million (ppm) in March 2015 which was last breached 3 million years ago during the Pliocene epoch. If the extreme impacts of climate change are to be avoided then we have to limit this to 450ppm by 2100 and yet the current rate of CO2 growth is 3ppm per year.

I realise I have thrown a lot of facts at you but sometimes it is the only way to emphasise the terrifying and urgent threat we face. As the temperature and humidity rise and flooding becomes an ever-more likely occurrence across the world, so too does the risk of tropical disease being transmitted by mosquitoes, which will be able to survive further afield. In 2015 there were approximately 212 million cases of malaria with an estimated 429,000 deaths, and that is just one of the diseases mosquitoes carry. By 2030-2050 it has been predicted that an extra 250,000 people will die every year from climate-related diseases. What these facts and figures fail to show, however, are the personal stories behind the diseases. I am one of those people who have been infected with malaria and whose life has been devastated by the impacts of it ever since. I had dreamed of travelling to East Africa ever since I first watched Out of Africa as a child. I can still feel the goose bumps erupt over my arms when I think of the first time I watched the plane fly over the great plains of the Massai Mara. I made it my life’s aim to see the beauty of East Africa for myself and I succeeded. I dream about it from time to time- when I close my eyes I am still there, overlooking the Ngorongoro crater with the pink haze of the flocks of flamingos in the distance and I wake up with tears in my eyes. I know I will never drive along the plains of the Serengeti or wake up to the early morning mist surrounding Kilimanjaro again and even travelling around the UK is extremely difficult but I have accepted my fate. And now, as the pain of the last ten years slices through my muscles and joints, my only aim is to do everything in my power to ensure other people don’t have to accept this same fate. We have to do anything and everything possible to mitigate the impacts of climate change for future generations and so I urge you to research climate change, to recycle, take public transport, use less water and above all write to your MPs and ensure they don’t shirk their responsibilities when it comes to this greatest of all threats to our world. Karen Blixen, the author of Out of Africa once wrote:

“Perhaps he knew, as I did not, that the Earth was made round so that we would not see too far down the road.”

Perhaps that is the curse of the modern age- we can no longer claim ignorance of the effects of our actions on the future; we know all too well what is coming and yet we are failing to respond to it at a quick enough rate. We have entered the Anthropocene, and a sixth mass extinction is currently underway with billions of local wildlife populations lost to human over-population.  Every week there is another tragedy occurring and yet there are still so many influential people who are choosing not to put the links together. Maybe they too do not want to see too far down the road, and if I’m honest, I can understand it. You do not even have to walk a mile down that metaphorical road to see death, extinction and suffering. The irony is though that if we collectively look into that void and stand face to face against the oncoming storm and choose to act now then we can prevent so much of that suffering. I don’t know about you guys, but that seems like a fight that I want to be a part of.


(If anyone would like a list of my references then please send a message and I can post them).

As The World Falls Down

This is an impromptu post brought on by something I heard on the radio, so please forgive the grammar…

It begins in my hands. It always begins in my hands. At first it is a slight gnawing as my body adjusts to being awake. Bit by bit each knuckle joins the last, a deluge of pain spreading insidiously across my hands. I stare at them in wonder. Even now I still can’t comprehend how there can be so much pain in just one finger, let alone every finger. From there it travels up my arms to my elbows and shoulders and they struggle to hold my weight as I slowly rise to my feet. By now the pain has reached every peripheral joint and I clamber towards my walking stick in the hope it can take the brunt of my weight as I stumble towards the bathroom. Occasionally the pain reaches a point where the nausea takes over the majority of my consciousness and all I can think of is making sure I get to the bathroom. On these days the nausea is normally accompanied by dizziness or vertigo; the bruises mark the points where my body hits the door or the wall as I walk. It seems fruitless to take painkillers until the nausea and vomiting stop and so I wait it out on the bathroom floor or the bedroom floor. If I’m lucky I drift back off to sleep…

This is just a snapshot of what I deal with every day during a relapse. When I am at my worst I sleep 20-22 hours a day. On the good days it is nearer to 12. I am one of the millions of people across the world that has a chronic and invisible illness. Tonight I heard a radio presenter ask if work is ‘too easy’ because of the amount of people sitting down to do desk-work. I would laugh at the phrasing if I didn’t feel so much despair. Towards the peak of my latest relapse, when I was working full-time at a desk job, one of the hardest things about it was sitting down. If I stayed in the same position for longer than half an hour my muscles and joints would scream at me in pain to the point where I could barely walk. Eventually I had to stop work altogether and it has taken me about ten months to get back to the point of being strong enough to work again.

Despite the strength it takes someone with a chronic illness to survive the daily grind, every day we are asked why we can’t do what other people can do as though it is our fault, that we are not trying hard enough. Or we are told that it’s all in our head, we don’t look sick so we must be fine.  I have heard both of those things before. And I have had it easy compared to so many others with invisible illnesses. What fills me with the most despair though is the amount of energy spent trying to discredit those with invisible illnesses. If they only knew what it felt like to have their previously limitless energy stripped down to about 10% they wouldn’t waste so much on bringing down others and making them feel like they are even more of a burden to society than they already do. But how can we blame people in the street or in the workplaces when we see politicians cheering because they are depriving their own constituents of disability benefits or refusing to pay public servants a fair wage. Actually cheering and jeering. How can we blame people in the street when every day we see the newspapers filled with such hateful vitriolic that disabled people are afraid to leave their houses in wheelchairs or with their walking sticks. I still have yet to build up the courage to use my stick in public. I know I need it on certain days when the energy in my muscles has been used up and it takes me half an hour to complete a journey that would normally take me ten minutes. And yet the fear still stops me from using it. Maybe if more of this collective energy was spent on trying to find cures for society’s ills instead of judging others for things they don’t understand then things would be a lot better.  That feels like a long way off though. Until that day, however, maybe it is time that we stop and think and recognise that every single person has a different story to tell, a life led differently to yours and mine. Just because someone doesn’t look ill, it doesn’t mean that they aren’t. Maybe they are just trying to hide the pain they are feeling inside. I wouldn’t wish this pain on anyone.

Sliding Doors

When you look back on your life and the decisions you have made, do you ever have any ‘Sliding Doors’ moments? Do you ever wonder whether one decision you made years ago could have altered your life irrevocably- either for better or for worse? A few weeks ago the wonderful Jennifer Brea (an M.E. sufferer who wrote and directed a film about M.E. which was featured in this year’s Sundance Film Festival asked her Facebook followers to write about the grief that comes with chronic illness. I have been attempting to write about this for two to three months now and I have started this post over thirty times. The problem with grief is that it isn’t a linear progression; it changes every day, often many times in a day, and so every time I come back to this blog post my mood has altered so much that I don’t have the same chain of thought. It is at this point that I often ponder the ‘Sliding Doors’ moments that led to me getting ill in the first place or events that precipitated my first big relapse in 2009. Was there anything I could have done to have prevented this, or was it karma for any past mistakes? For so many years I lambasted myself and in my darkest hours felt like I deserved it (a symptom of the mental health co-morbidities that accompany M.E.) which is ridiculous. Viruses and bacteria aren’t that principled, they don’t pick and choose hosts to infect because they disagreed with a decision the host made a few years before. The fact is, it can happen to anybody, at any time, and all we can do is deal with it as best we can.

The difficulty with diseases like M.E., or at least in my experience, is that it affects every single aspect of your life, and as hard as you may try to live positively it will find a way back into your consciousness (in my case normally through overwhelming muscular and joint pain). Consequently, there will always be aspects of grief that filter into my life, and learning to cope with this has been, and will continue to be, one of the biggest challenges I face in my life. It is widely known that there are five stages to grief: denial, anger, bargaining, depression and acceptance. I don’t pretend to be an expert in psychology so I won’t delve into the particulars of each stage; what I will say though is that each stage and each emotion is a valid and necessary part of dealing with chronic illness. I couldn’t even begin to count the number of times I have beaten myself up over feeling (or, indeed, not feeling) a certain way. All that it has led to is a worsening of the physical symptoms and a growing anxiety that continues to control my life. Let yourself grieve. Don’t be afraid to feel each and every one of those emotions and savour it, it means you are still fighting and you are still alive.  It has taken me ten years to realise that, in one way or another, I will always be grieving (at least when I am conscious-I know, I sound like a barrel of laughs) over my lost health, lost productivity and finances, and the loss of a life free from pain, but that’s ok. There will be times when I feel each emotion acutely and times when it will fade into the background but, thankfully, as the years progress, the acute emotions will be present less and less. You will find a way to live with your altered life. It may not be how you saw your life pan out at age eighteen, but few people can say their life turned out as they planned, and there will still be moments of happiness, perhaps felt all the more intensely because of the pain you feel on a regular basis. So, in your darkest hours, cling onto these moments; let the light and the hope that they bring flood your dreams and your consciousness and never give up the fight. Remember that science and the exceptional researchers who are working tirelessly every day are on our side, and one day they will find treatments to help us cope with the pain and fatigue that envelops us. Hang onto this and keep living for those moments of happiness that keep the despair away.


Hello, hello, hello. After the success of my first blog post and all the wonderful comments I have received, I thought I should continue to write about life with chronic illness and get a new post up as soon as possible and here it is, a mere three months later. Alas, as with most things in my life, writing tends to take longer than planned but please do continue to read the posts. I hope to speed things up a bit and get one out every month but unfortunately I won’t always be able to do that.

A big shout out to  the wonderful Adam Hill for being my first follower. If you want to know anything about teaching then please follow him at @mrhillmusings. The only person I’ve ever met who made teaching 18 year olds when you’re only 18 yourself look easy.


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 chronic but 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 yet 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, whom I named Mr Meow 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 managed to leave 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.