My Story: A four year battle with invisible illnesses.
In late April 2012, studying in Malaysia on an exchange with my University, I contracted Dengue fever, ending up in hospital for 10 days. Unfortunately for me the language barrier was a real issue and the post-treatment was poor as a result. I left the hospital ten kilos lighter and still feeling terrible, but was told I was getting better: ‘rest up and you’ll recover’. But by week three
I still couldn’t manage walking five metres to the shower without difficulty, so a week later I was on a flight back home to the UK to recover properly. I was tired in my months at home, but I thought it was due to the job Iwas doing to clear the debts I’d racked up in Malaysia, along with the retakes (19000 words of them) I had to do in order to continue with my studies. I wish I had listened to my body then, but I trooped on thinking it was a slight post-viral thing at most.
By February 2013 I was midway through my final year of University and suffering with depression. I used pills for every symptom of what I now know to be subtle early signs of my illnesses. I used them to help me sleep, to stop me bruising, to make me numb when I was anxious, to help me concentrate, and to relieve pain. You name it, I tried to solve it with a pill. In my head at that time I thought my symptoms were because of my depression; my depression was because of my living situation and I didn’tgo through writing 19000 words in three weeks to fail this year. I saw giving up as weak and acknowledging everything to try to tackle the problem piece by piece was just overwhelming, so I avoided it. I told myself I was going to get through and power on with what I thought was the correct life plan. Amazingly I graduated, most likely put down to my ability to put one foot in front of the other to the detriment of my health, modafinil, (a wakefulness-promoting agent, known recreationally as a ‘smart drug’) sleeping pills and low university contact hours.
Having tackled my depression with medication and counselling, in October 2014 I began working at an investment firm in London. I knew it was going to be an intense job, but since I’m no stranger to hard work and effort (I was a competitive rower through school juggling training and studying) I assumed I would be able to cope. This, however, was on another level. It started with tiredness, dizzy spells and poor memory. I wouldn’t be able to focus without drinking enough coffee to give me the shakes with anxiety and I would frequently forget things like what food I planned to make for dinner and what investment I was describing over the phone to a broker, while I was talking to them. My hands were permanently shaking, so much so that using my mouse and phone at work became an issue. These shakes became full body shakes and gave me what felt like travel sickness unless I was lying down. In January 2015 after a brutal break-up, a mum diagnosed with cancer and now a £100 million-pound sales target on my head, my body was close to breaking point.
One day I reached – and passed – that point. All I remember was being laid on the tube floor, with commuters looking worriedly down at me, asking where I’m going or who they can contact. But I had just fainted, and couldn’t answer any of these questions with 100% certainty due to overwhelming brain fog. It was terrifying. A housemate’s friend described ‘the worst hangover of her life’ where she had the shakes, it felt like her brain was exploding behind her eyes, her whole body was shaking it felt so weak, nausea washing over her every 10-15 minutes paired with complete exhaustion. That’s what it felt like, every morning. I woke up feeling like I’d had three hours sleep and sunk two bottles of wine the night before, despite having a healthy dinner and being asleep by 9:30pm. dubbed that hangover ‘as one of the worst day of her life’, one of the worst days of her life was a very normal day of mine. It was all a sinking realisation that something way bigger than depression or a high-pressure job was happening to my body.
It took six months for doctors to diagnose me with two invisible illnesses; PoTS and M.E., in June 2015. PoTS, or Postural Tachycardia Syndrome, is an abnormality of the functioning of the involuntary nervous system. To be diagnosed with PoTS, an individual must experience a heart rate increase of 30bpm while standing – my resting heart rate was 67, while my standing heart rate was 111. M.E., or Myalgic Encephalomyelitis is a chronic fluctuating, neurological condition that causes symptoms affecting many body systems, more commonly the nervous and immune systems. Believed to be caused by a combination of the sequence of events I have just explained, the immediate relief of knowing that I wasn’t delusional with how I was feeling quickly made way for worry. My assigned doctor offered me links to ‘support’ sites for chronic illnesses– quotes on these include, ‘full recovery of M.E. occurs in only a minority of cases’ and ‘PoTS is typically not life-threatening, but it is life-damaging’. Doctors threw around ‘becoming accustomed to a certain quality of life’ and ‘learn to manage your expectations of life’. Different doctors told me different things; with one I had a 20%-30% chance of making a full recovery, while another said I had a moderate to good chance of an ‘independent lifestyle’, whatever the hell that meant. Nothing was certain due to so much still being unknown about the illnesses I had. Because of this, the therapy I was advised to take was based on me getting comfortable with this new recommended way of life rather than recovering from the illnesses. All resources were going into preparing for the worst but no help on how to potentially be able to hope for the best.
This was the worst pill to swallow. Everything I knew to be normal – socialising, jobs, fitness, qualifications – all that was engrained in me as to what made a person the best they could be, stopped here. You do not juggle these elements of life, you choose. It felt like I needed to be a worse version of myself because of my illnesses. There was no flexibility with the illnesses, you could never just ‘get over it’ like you could when you were a teenager with a hangover. Supportive friends and family were very hard to find – I was so ill and it hurt so much to be let down on a daily basis by people you cared about that just didn’t seem to take your pain seriously. I got ‘what more do you expect us to do?’, ‘you’re so lucky to be able to nap when I have to revise’. For me the loneliness was the worst aspect of my illnesses. I have lost friends because of this and in my mind for the better, but looking retrospectively I can see the struggle – I looked healthy on the outside so naively friends would question what’s going so wrong on the inside.
I powered on with my job, listening to the most optimistic doctors. I was positive,
attempting to be strong-willed, taking everything I could from the NHS; occupational therapy, physiotherapy, cognitive behavioural therapy, counselling, a dietician and alternative therapies I could afford, supplements, Chinese herbs and acupuncture. I spent that period of my life appearing to be stronger than I was at work and then collapsing into bed at 9pm. I battled inflexible HR policies, unsympathetic managers and took pay cuts to try to keep my job and life in London.
February 2016 was the hardest month of my life to date. Along with my M.E. & PoTs, I also had infections in my chest, both eyes, sinus and bladder. I was completely bed bound, my PoTs went through the roof and I woke up one morning with no feeling past my lower thighs. Laying in the dark to stop my migraine, my insides feeling like they were being crushed and my body feeling like it was spinning thanks to my M.E., I realised I was completely delirious. Days turned into nights, nights turned into days, I didn’t have a clue what was happening while being in constant, numbing pain. But just under a week into it, every ounce of my body and mind halted, I reached the lowest point and vividly remember thinking if there is chance in my life to feel this ill again, I’m done with it all. But on from this awful thought, I then thought of all the things I hadn’t done, all the places I haven’t been and all the relationships I wanted to be remedied but weren’t. This was too much, something needed to change. In April 2016 my decision was made for me: I walked into work at 8:30am and was escorted out of the building by 9am having been fired. Despite friends and family telling me I could have a case to fight for unfair dismissal (they also fired a colleague who was on maternity leave at the time) it was the best thing that has ever happened to me. I took the payout offered, signed the dotted line promising to not make a fuss, and walked away.
Moving back home was demoralising. I knew this was a needed step but five years after I moved out I was back in my family home. These were meant to be the best years of my life and I was living with my parents in a little village, the most exciting thing about which is its five-mile proximity to Sherwood Forest, the place Robin Hood called home. Living with my parents was an uphill battle. Previously my life was similar to theirs – social, chaotic and loud – but right now this was the opposite of what my fatigued, nerve-sensitive body needed. Still to this day I’m sure our family home is made of cardboard with how easily noise travels. I had to argue constantly to make myself and my illnesses heard. These constant battles have worked, and the longer I have had the illnesses, the more I know I am right with what I am saying and doing when it comes to my health. I put my gradual two-year recovery down to my complete change in diet and lifestyle paired with alternative therapies; namely yoga, mindfulness and Chinese herbs. (This will not be a solution for all those chronically ill!). To be quite honest I think it’s a miracle I have recovered the way I have, but I have written an article about exactly how I went about it here. Imagine if a doctor said to someone with heart arrhythmia to focus on mental therapy, diet, physiotherapy and pain meds. Sounds like absolute madness, doesn’t it? Yet because of the poor funding and no known cure, this is what the invisible illness community deal with day in, day out. So here I am, miraculously healthy and recovered with absolute clarity of what I want from life. I aim to see every country along with giving back to non-profit organisations. I am a woman, going alone and nothing of my plan scares me compared to what I have been through. To everyone lucky enough to have the choice: go and do what you really want as soon as it is feasible, because the opportunity of that choice could be taken away from you in a second.
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