Phoebe: The chance of choice
Phoebe here currently sat in Quito, Ecuador counting my lucky stars. I'm four months into travelling while managing being in remission from PoTS and ME, with a big old wash bag full of pills and medication ready for anything these illnesses might try to throw my way in the months to come. I'm trying to travel to every country in the world to be exact while presenting to the younger generation (namely schools and universities) to raise awareness of invisible illnesses. I want to be the second female and first chronic illness story to do so. It has been a whirlwind of a four months and hasn't been without its challenges, these are the main high and lows to date.
Mexico City- within 36 hours of being there I'd hiked the largest Aztec pyramid in the world and ate crickets in a cave, it was
incredible. By day three, I was struggling with horrendous insomnia and my heart rate (HR) when I woke up in the night was around 104-108 beats per minute (BPM). Often with PoTS you can have flare ups if you are run down with something on your mind. I felt like I had nothing really pressurising me but looking back I was incredibly busy before I left and in the back of my head I was already worrying how I could manage with my challenge if this continued. I've had flare ups before that have lasted over three to four months before I could get myself back to a manageable standard of living.
After five nights of 2-3 hours of sleep per night I felt like I was about to crack, I could not travel feeling like this. Physical symptoms of anxiety came back, I had the shakes, my HR was 130 BPM on standing (thats higher than Mo Farah’s in an olympic race!) and my stomach was in so much pain I could hardly eat. This was the worst my PoTS had been in over six months, so I gave up on doing anything in Mexico City and set it aside as time to control my health.
A run down hostel in central Mexico City in a dorm of twelve was not the place you want a flare up but amazingly what I was doing seemed to work. Yoga, CBT practices, meditation, mindfulness, Chinese herbs I'd packed just in case something happened, you name it, I did it all for three days solid pretty much while committing to the price of a private room in my next stop, Oaxaca. It took me by surprise how quickly I did recover and just shows that either my body or I am now better at controlling my flare ups. However getting over this and being able to surf in Mexico, swim with sharks in Belize, scuba dive in Honduras and seeing wonders of the world have all been experiences I feel like I will never take for granted.
Outwardly I am not an excitable person, I don't often show a lot of emotion to activities I do or experiences I have. However since havi
ng PoTS I have found the words of my diagnostic doctor ringing in my ears 'it's highly unlikely you will be well enough to ever travel' before welling up with happiness. It happens everywhere and anywhere; on top of a ruins in Mexico, watching a sunset in Nicaragua, seeing a lion fish in Honduras and swimming in a waterfall while trekking in Northern Colombia. It's the opposite of my normal character, but it just shows how grateful I am to have my health and how I will never ever take it for granted, while so many thousands of people take it for granted. That said their are things I have missed, not hiking a volcano for altitude sickness, not swimming with dolphins because of such low blood pressure and people feel sorry for me. More sorry for me than anyone did when I was ill at home in bed it seems, which to me is just baffling. Just being here is nothing short or a miracle and yet I'm getting sympathy now. That's the crazy world we live
While I have been travelling I have also been doing guest posts for other female travel bloggers which have all been focused on illnesses, not taking travel for granted and why we need to talk about invisible i
llnesses more. I also presented my story to an International school in Panama sitting in classes and giving presentations to pupils there, I absolutely love days with the younger generation, it really does make it feel worthwhile.
A final anxiety flare up came in Guatemala, I spent two weeks learning Spanish but while I
was learning Spanish I was with a Guatemalan homestay. Unless we spoke Spanish we didn't speak. In this time I was massively let down by a friend back home combined with another very ill friend who was on the organ donation list for two years got a new pair of lungs! Whether the emotions are of happiness or sadness is irrelevant for me, emotions are so interlinked to my flares ups and it's so frustrating my reaction to one persons horrible actions and being far away from home caused; insomnia, migraines, shakes and an inability to focus on anything other than these two subjects with a resting heart rate of around 100 for a week. Anxiety is something that drains all happiness from every other activity and unfortunately for me only time heals it. That said my efforts of yoga, resting, meditation and mindfulness hopefully made it better. But as many sufferers know, it doesn't really feel like it at the time.
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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 I was 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't go through writing 19000 words over summer in retakes 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. She 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 PoTS and M.E., in June 2015. 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 – 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 life-style’, 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 f
or 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. 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, sinnus 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 knowing this was 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 and I’m happy I have been so demanding with it.
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. We all know 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. 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 we as 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 in the world, all 197 of them along with spreading my message about invisible illnesses. I aim to target to minimum of one presentation per country as I travel through, telling my story and the devastating impact invisible illnesses have on so many innocent lives. I am a woman, going alone and nothing of my plan scares me compared to what I have been through. I want to shout my message to as many people as possible. For everyone lucky enough to have the choice: they need to go and do what you really want as soon as it is feasible, because the opportunity of that choice could be taken away from them in a second.