The Beginning of the End
To make my story a little easier to digest, I have broken it up into 3 parts. Part 1 (this part) introduces my backstory: how I went from working out to unable to work. Here, I describe the lead up to realising I was unwell. It wasn’t a quick realisation; it kind of crept up on me, like mould – or festive weight gain.
If you want to read about my journey to diagnosis from when I started seeing medical professionals, please read Journey to Diagnosis – Part 2 – chronicallycraptastic.com and from when I was diagnosed with M.E and POTS, see Journey to Diagnosis – Part 3 – chronicallycraptastic.com .
What triggered my chronic illness?
The million dollar question. I think it may have been triggered by the most severe urinary tract infection of my life in September 2016. That bad boy just wouldn’t quit and took several rounds of antibiotics to eventually piss-off (pun totally intended).
So, it could have been that, or it could have been my very minor brain haemorrhage 3 months later in the December. I was aware there was something not normal going on with my head at the time, as it hurt like a mofo every time I did something to change the pressure inside it – like sneeze, cough, laugh etc. It would stop me dead in my tracks when it happened, the pain was so severe. But then it would ease off and I would be fine again. I joked about it at the time with my work colleagues, because I genuinely thought it was just some freaky sort of headache that just happened to enjoy stabbing my brain very painfully at random. I figured that despite outstaying its welcome for several weeks, it would go away eventually. Which it did. It probably lasted about 3 or 4 weeks in total, and then after it stopped, I completely forgot about it. However, I would later discover, during one of several scans and tests in my quest to find out why I was seemingly slowly losing my ability to function, that the headache caused an area of ‘altered signal’ in the pituitary gland my brain, which the MRI report said was most likely caused by a previous haemorrhage. The consultant said the abnormality was so miniscule that it would probably dissolve and disappear. Another scan a year later confirmed that it had.
Neither of these events are particularly out of the ordinary in the general population. However, given that I was in really great shape physically and mentally beforehand, and that ME and possibly POTS are often considered post-viral conditions – I can only assume in hindsight, that my subsequent demise was caused by one or both of these events.
2017 started like the previous year had ended – I was fine, happy and healthy. Or at least, what I’d come to accept as my new normal version of healthy. I was a little exhausted, but nothing I hadn’t become used to. I was living 30 miles away from my work base, and the commute was a killer (I was community staff, which meant I needed to drive to work rather than take public transport, so I was available during working hours to drive to see clients at their homes). So that was pretty tiring. Also, I was a massive gym junkie; I loved to exercise (cardio and weight training in equal measures), and had done for many years. I used to be a personal trainer briefly, a long time ago, before I started my psychology studies. Despite giving up exercise as a career choice, I was still very much committed to it as a lifestyle choice, and I would be at the gym regularly at 5.30am when it opened during the week. I knew it was a ridiculous time of day to be hitting the gym, but there simply weren’t enough hours in a day outside of work, on top of my commute. Not if I wanted to have a social life and a love life as well – which was reserved for evenings and weekends. It was exhausting, but I was enjoying myself – therefore, I was doing fine. Or, so I thought.
I met Pete, (my other half) at work, and we started dating in the December of 2016. Everything was going great. It was as a new relationship should be – staying up late at night, taking work breaks to go for walks together (the perks of working in the same office), talking to and messaging each other whenever we were apart. We shared similar interests – we would workout at my gym together, managed to go for an outdoor run together once (little did I know it would be our first and last one), go out for meals, and we even started taking a beginners Argentine Tango dance class. I was shit at it. But that just added to the fun; we were enjoying ourselves immensely.
Myself and Pete outside my apartment building after our first (and last) outdoor run together in Leeds. We did an easy 4 miles, and were excited to bring our love of exercise into the great outdoors. I was ecstatic – largely due to cardio endorphins; definitely my drug of choice. If I had known it would be our only run together before my health put a spanner in the works, then Forrest here would have kept running as if my life depended on it.
As the weeks turned into months, however, I was slowing down and Pete was increasingly doing more to help me out in my flat. My years of exercising had come at the cost of a couple of major leg surgeries and chronic hip pain, so I had regular chiropractor and physiotherapy appointments to attend/squeeze into my busy life, and prescribed exercises to do at home to keep me going strong. Problem being, I was starting to feel a bit too knackered to do them on top of prepping food in the evenings. That, and I just felt like my whole body was moving slower than it used to, and everyday tasks were taking longer to complete. So, Pete started making my packed lunches for work the next day. He also started cooking meals at my flat and made extra to then freeze, so I would always have ready-made meals to heat up whenever he wasn’t around and I didn’t feel up to cooking for myself. His support meant I could use my time and energy for my physio exercises. I was notoriously crap in the kitchen department back then anyway, so we didn’t think too much of it; Pete enjoyed cooking for me and I enjoyed eating. Everyone’s a winner (but mostly me. Oink!)
Looking back, I think it was probably the physio exercises that took a back seat next, so I had more time to rest in the evenings (and spend with Pete), and then I started going to the gym less and less, in favour of having that extra time in bed in the mornings to rest. I think I probably convinced myself that I was choosing to ditch these things so I could spend more time with Pete. Didn’t seem like much of a sacrifice when it meant I got to spend more time in bed with him. ‘Sorry love, we won’t have sex today, because I’d rather go to the gym, and I don’t have enough energy for both’ – said no-one in a new relationship, ever. Well, no-one normal, anyway. At this point I probably should have questioned why I didn’t have enough energy for both, but I guess my head was still in the sand. Or Pete’s pants.
I then started spending less time with my friends – which this time, I couldn’t attribute to being in a new relationship. I wasn’t with Pete every night of the week, and spending time with my mates was really important to me, and I wanted to see them. But I was simply running out of fuel, and on my free nights, I just desperately needed to rest and catch up on sleep. I’ve moved around a lot in my life, and have made some very close friends that live all over the place – but especially in Canada and the Isle of Man. I’d always made staying in touch with them a priority, as these people are really important to me (okay any Isle of Man friends reading this, I know, I know. But you’re all just as crap as I am, and I know you still love me as much as I love you). So, really, it was my Canadian friends that I was better at staying in touch with. However, I found that I just didn’t have the mental energy to keep on top of WhatsApp conversations with them, in addition to everything else I was struggling to maintain. And it began to stress me out. I just couldn’t think properly or type fast enough anymore, and I didn’t want my friends in Canada to think I was distancing myself from them. Ironic really, since I’d left them behind to move back to England. But we can gloss over that. (I would have brought them with me in a heartbeat if I could).
Then my work started to suffer, albeit I managed to hide it quite well. I was allowed to work from home occasionally if I only had reports to write up. This was a God-send, because I was finding myself falling asleep while I worked, and I would crawl into bed for a quick cat nap in the afternoons. I used to try to make up the hours, as thankfully that flexibility was there – but eventually I just couldn’t. I couldn’t make up the hours and I just couldn’t carry on like this overall. I was physically and mentally spent. My brain felt foggy, and the harder I tried to concentrate, the more it would trigger feelings of nausea. That, plus the sheer physical exhaustion, was starting to grate on my emotions. I would cry over once-simple tasks that involved any mental exertion, because I just didn’t understand why it was becoming so hard to concentrate. Albeit I wasn’t particularly worried. Because, to my mind, there was an easy explanation.
It had been easy to come up with an excuse for everything going wrong with me, as it didn’t take a rocket scientist to figure it out. It had to be burnout. There was no other logical explanation. My lifestyle was simply too busy, my drive to and from work too long, and this burned-out body needed to rest. So, my plan was to carry on with my new, reduced activity regime for a while, and then I would be back, firing on all cylinders again. At this stage, I didn’t think I was unwell in the traditional sense – I just thought I needed a break. How little did I know.
The penny drops
I will always remember the weekend I realised I might actually be properly ill. It was Mother’s Day weekend in March 2017, and my Mum was coming up to visit me in Leeds, where I lived at the time – in the city centre, where there was plenty to do and fun to be had (hello shops, café’s, theatre, restaurants and bars!). In the days beforehand I had felt really rubbish, utterly exhausted to my bones, and was suffering with nausea. The latter was not a new thing, as I had suffered with random unexplained nausea a handful of times per year, for many years. No doctor had ever figured out why, but it was usually remedied with anti-sickness medication. Bish bash bosh. Pop another pill; job sorted. I’m not precious about taking medication – if it makes me feel better so I can crack on with my life, then pile it in! (My mum was a nurse, and always had some paracetamol in the bathroom cabinet when I was growing up to treat the majority of illnesses – which is how I came to be so relaxed about taking medication). So, I wasn’t overly concerned at first. However, this time the nausea just wouldn’t quit, irrespective of the anti-sickness pills I was popping like smarties (normally the recommended dose did the trick – but not this time), and moving my body around felt like I was dragging a carcass tied to a bus. I admit that I did start to worry about how much of a good time I would be well enough to show my Mum.
This picture was taken on Saturday 25th March 2017. The day I tried – and failed, to fake it (wellness) until I feel it. I mean, come ON people, surely a cocktail or two would help – even temporarily?! Nope. Apparently not. I’ll be honest – I had a ‘lively’ youth. I entered my 30’s with this firm belief that the majority of ailments could easily be fixed (albeit temporarily) with a combination of booze and a good hearty meal (cooked by someone else, of course). I rarely needed to put this belief into action in my 30’s, as I’d become much happier with exercise as my vice – but I always kept it in mind as a ‘Plan B’. And Plan B was definitely called for, on this particular weekend. However, for the first time in my life – Plan B, topped up with even more anti-sickness medication, and some paracetamol – failed. Clearly, no-one in their right mind should take wellness tips from 2017 me. Well, not if they actually want to feel better. If they don’t mind continuing to feel like crap and are open to getting a shit-tonne worse, then I was definitely the girl to come to for fun ideas on how to achieve this. Nonetheless, although I wouldn’t recommend this ‘wellness package’ to anyone nowadays, I still give myself a massive pat on the back and two thumbs up for giving it a go – mainly as a farewell nod to my old self – and a hello to the beginning of a new me, even if I didn’t know it at the time.
It turned out the only thing about me that actually functioned as it should that day was my make-up. I’m forever astounded when I look at this picture, at how well I look – given that I felt like utter nauseous death. Maybe I wasn’t born with it. Maybe it is Maybelline (and a filter). Fuuuuck. Little did I know that my life would never be the same again.
All of our plans for that Saturday went ahead, out of pure stubbornness on my part more than anything else. I had been looking forward to a fun weekend with mum, and dammit, fun we were going to have. That said, I knew there was something seriously wrong when we went to a fancy restaurant that evening, and I couldn’t face food or even wine. Just water for me, and maybe a bread stick. You know there’s something seriously wrong with me when I turn down a free steak and large glass of rioja.
From that point onwards, the game was up. We’d bought train tickets to spend the day in York that Mothering Sunday, followed by a meal out that evening for my Mum to meet Pete for the first time – which had to be cancelled. I simply couldn’t leave my flat. I was soooooo unwell. Of course, this was a golden opportunity for Pete to make a fantastic impression on my mother, and, like any decent prospective son-in-law wanting to get in her good books – he seized the day! He came over to my flat, looked after me impeccably, and then cooked us all a chilli con carne that made such a good impression on my mum, that she wanted the recipe, and to be grandmother to his next-born child. Fuck, that was a good chilli.
I had the Monday off work, and then dragged my carcass in for the remaining 4 days after that long weekend with mum – but I struggled to get anything done.
The following week, in early April, I woke up one morning, thought about the effort required to get ready for work, and promptly had an absolute beast of a breakdown. I just couldn’t save myself from drowning. The mental and physical fatigue as well as the nausea was relentless. All I could do at that point was cry. And once I started, I couldn’t stop. The flood gates were well and truly open. Actually, fuck that – the flood gate doors had not only opened, they’d fallen off their hinges entirely from the sheer force of my breakdown. We’re talking bloodshot, swollen, red teary eyes the size of footballs and a reservoir-sized amount of snot, and me, shaking helplessly on the bed. I simply could not carry on like I had been, any longer. I was utterly exhausted from whatever was wrong with me, and I was doubly exhausted from trying to crack on with my life, despite it. That was when Pete escorted a very broken version of me to the doctor, who took one look and signed me off as temporarily not fit to work. We all agreed that I must have burnout, and that a proper rest will have me fighting fit and back to work and normal life again soon. We couldn’t have been more wrong.
If you want to read what happened next, please see Journey to Diagnosis – Part 2 – chronicallycraptastic.com.
If you’ve read this far, then thank you so much!