So much has happened since my last blog post, my life has changed so completely that I feel as though I have lost so much of my identity. I look back at the posts from almost two months ago, and I find it so incredibly hard to relate to the Lucy who had so much fire in her, who was on a journey towards becoming a strong and confident woman in open defiance of her chronic illness.
I would try and warn that Lucy of what lay ahead, but she could not even begin to comprehend the amount of pain and loss that was coming. I would tell her that she has no idea what it means to have everything you consider part of your identity to be stripped away, until all that’s left is your body and your limitations. To feel like you’re slowly dying, while everyone just stands around helplessly. I would tell her to relish that feeling of power over EDS, as she has no idea how completely and totally it will destroy the touchstones in her life she assumed were unshakable.
That grieving for a life you would never have, is nothing compared to grieving for the life you did.
On August 8, I was admitted to hospital under the care of the gastroenterology team. I had spent the last 6 weeks since my gastritis attack barely existing on sustagen and crackers, consuming only 300 – 600 calories per day. Those six weeks were agonising. Tests as an outpatient take forever, and as each test showed nothing, it would then be another week or two before the next one. Every time I tried to bring back that powerful woman who was prepared to be her own advocate, I was brushed off, and I was terrified that telling a doctor how to do their job would result in me seeming a hypochondriac and I would not be treated at all. The longer this went on, the more desperate I became, but also, the less energy I had. I became more and more trapped, and as I got sicker and sicker, the voice inside me was screaming for help. I was too sick to do anything about it, so I prayed that someone would notice, but no one did.
I was starving to death and no one was doing anything.
There was suddenly this new kind of desperation that I was experiencing, a frantic desperation to do as much as I possibly could, because I could feel my body weakening. I didn’t want to miss out on anything, in case I’d never be able to do it again.
Against medical advice, and the better judgement of most of my family, I flew to the Gold Coast to compete in the Australian International Oireachtas, where I barely made it to the end of each dance, after which the toll on my body and brain would cause me to go completely blind for up to a minute. I then went back to dealing with the medical side of things, still stubbornly insisting that I was fine despite everything. I felt like I had to hide how sick I truly was, because if they knew, they’d stop my manic pursuit of these experiences I’d pinned so much emotion on. I did a barium swallow, followed by an endoscopy, and then jumped on a coach and joined my boyfriend and his dad at the snow, where I spent 5 days straight skiing from 9:30am till about 4pm. I was determined that no matter what, I was going to have five days where I just WAS NOT SICK, and began deliberately denying everything my body was so desperately trying to tell me. My blood sugar was so low I developed a forceful tremor in my hands, which I blamed on the cold or on lactic acid. My clothes were getting bigger and bigger, the ski gear in children’s sizes I’d purchased to save money was becoming too large. My bones had started protruding from my body, I had enormous dark circles, and barely had the energy to just stand up in the shower, let alone wash myself or my hair properly. But still I hid it, from everyone else, and from myself. I would put my hair in braids to hide its dull greasiness, apply concealer under the eyes first thing in the morning, and wear layers to minimise how thin I was becoming. I was on holiday, and I was going to pretend I was fine even if it killed me, because if it didn’t, I might never get this chance again.
And then I got back to reality. I slept for 48 hours straight as soon as I got home, only to drag myself, bleary-eyed, through a couple of excruciating days of work and uni, sleeping until five minutes before I had to leave, and crashing as soon as I walked back in the door. At this point, I could feel that my body was shutting down. Everything hurt. Everything. But for all that I desperately wanted help, I didn’t know how to ask for it. My entrenched fears of being labelled a hypochondriac made me minimise my symptoms, my total blindness upon sitting up or standing became ‘some dizziness’. The constant feeling that I was right on the precipice of being violently sick was ‘a fair amount of nausea’ – I was finally talking about what was going on, but I knew that things had snowballed out of control, and was terrified of the road I thought was ahead.
And even through all this, I still thought I knew everything. I was worn down, but still arrogant. I knew exactly what was wrong with me, and exactly what treatment I should have, even if I didn’t have the courage to do more than hint that I wanted to explore it to my team. I was sure that it was gastroparesis caused by my EDS, and that all I needed was for them to put in an NJ tube which would give me nutrition, and then after a few days of that I would either be better, and go back to eating again, or I’d be just the same, in which case we’d be looking at a more permanent solution. Either way, I’d be fine, after all I’m a #chronicillnesswarrior, and somehow the voice of my inner monologue became this cocky exaggerated version of a youtuber, totally forgetting the harsh reality that is usually kept private and off-screen.
Needless to say that the hospital stay was rough. From the first minute, I had to fight to be heard. In fact, in A&E, I had to fight to receive any treatment at all. I spent eighteen hours in emergency before they finally agreed that I needed enteral nutritional support to prevent further malnutrition. And then my real fight began. At 1pm on Thursday August 9, my first NG was placed, where I then had to spend four hours in excruciating pain, with only my thoughts to keep myself company, when I finally realised how out of my depth I was and how it was too late to tread water and just hope to make it through, I now had lost all control and was at the mercy of the tides. The following few days were this traumatising blur of unnecessary, invasive tests, having my mental health called into question, being ignored when I questioned my treatment plan, and spiralling into this position of defeat where I realised that my life will forever be changed by Ehlers-Danlos Syndrome and its sister diseases. I will never be able to go back to life the way it was a year ago, and I had to mourn that life. I had to face the reality that I may never dance again, that I would have to put work on hold, and defer my university studies. I had to confront my fears that maybe this was psychosomatic, that I really just had Munchausen’s and was somehow making myself sick on purpose. Then, once I had finally overcome those fears, I felt like the consulting specialist was projecting symptoms onto me and questioning my sanity, that she was ignoring the tests which were going to give us answers, while ordering tests we knew would come back negative, in order to produce the diagnosis-by-exclusion that was her speciality.
So I had to stop grieving, because I needed to fight for just a little longer. But I wasn’t alone, I had a small army of friends and family who were there to hold my shaking hands, give me luxury, non-hospital tissues to wipe my tears, and lend me the strength to find myself again through the pain of the feeds I wasn’t tolerating, and through the fog of my strong medications causing cognitive dysfunction. With that strength, I managed to say that this is the avenue that I want my treatment to pursue. If I’m wrong, I’ll shut up, lie down and take everything without question, but give me one more day to wait for results of the gastric emptying study, and then if that comes back fine, I’ll accept that this is all psychosomatic.
I’m so glad that I found that last shred of strength, because it paid off. The gastric emptying study came back showing delayed gastric emptying. As the delay was not as severe as my symptoms would otherwise indicate, I did have to humbly accept the fact that maybe, while closed-minded, the consulting gastro was at least partially right. I may have some degree of functional dyspepsia, but caused by hypersensitive nerves in the stomach, rather than by extreme psychological distress. I still am glad that I pushed to have her role in my treatment minimised, as the terminology used by my team shifted from secondary “delayed gastric emptying”, to “really very mild gastroparesis” to outright “gastroparesis” as her influence waned. This in turn has ensured that I am receiving not only high quality care, but also the correct care, as the treatments for dyspepsia and gastroparesis are quantifiably different, despite aiming to provide relief from near identical symptoms. I have now been taking the prokinetic domperidone for three days, and already am seeing marked improvements. My pain and nausea from the 24 hour feeds is almost gone, and my oral intake is also improving. I can now drink up to 200ml of fluids within 45 minutes to an hour, with tolerable nausea. The road ahead looks very different to the one I may have envisioned at the beginning of this journey, and though I can’t see too far, that’s okay, I’ve learned that it’s more important to focus on taking care of myself as I am right now.
I will forever to be grateful to my medical team, they probably saved my life. I don’t mean to imply that I was on death’s door, because aside from the obvious melodrama, I was extremely ill, but that’s not the life I mean. Perhaps it’s better to say they saved my quality of life. We caught the gastroparesis relatively early, and even though the symptoms I was experiencing were extremely severe, the actual disease was far less progressed than these symptoms suggested. Once the dysmotility reaches a certain point, it’s just about impossible to get it back, and so I am forever grateful to my team for trusting me when I said something was seriously wrong, which meant they caught it before any irreparable damage was done.
Despite my incredibly cautious optimism, I still need to properly come to terms with the fact I’m grieving for the life I’d envisioned before I got sick. Even when I was given the EDS diagnosis and thought I’d accepted what that meant, I had no idea how naïve I was being. I truly believed that I could go on pushing my body to keep up with a lifestyle that even my fully able peers thought was way too busy. I thought that life could go on at the hectic breakneck speed it always had, and I’d avoided dealing with prior losses caused by my illness, by merely replacing each with a new obsession. I had already lost orchestra, as the demanding rehearsals were too long and taxing, I lost cheerleading after my shoulders began dislocating multiple times each training and I started putting my flyer in danger. I tried to tell myself that I could join a local amateur orchestra if I ever found the spare time, and threw myself into my dancing to forget about my lost sport. I kept a full course load in addition to part time work, even when I was temporarily bedridden, it was nothing a special considerations and heavily medicated all-nighter couldn’t fix.
But now I’ve lost even more. The first thing to go was ballet. I’d returned to my childhood love to fill the hole cheer had left, under the guise of strengthening my feet for Irish. As my energy levels declined, this was the first thing I took a ‘temporary’ break from, I was always making an excuse as to why I couldn’t go each week, until eventually all my prepaid lessons expired. Then, I lost Irish dancing. This was a more drawn-out process, which made it all the more painful. Every class I was able to do a little bit less, and suffered a little bit more. I had to start rationing my time participating in class, cutting back until I was doing the bare minimum, if only to make sure I could still drag my aching body across the floor in a vague imitation of the correct steps. Then I started pulling out of the small, local feisanna, finding a new excuse each time. I’d hurt this, or I’d come down with a cold; anything to pretend that my body wasn’t failing. I somehow made it through AIO, barely surviving by pure stubbornness alone, and that was the last time I danced.
I pray that it won’t always be the last time I danced.
After stripping me of everything that made up who I am, my illness then stripped away everything that made up what I did. Not only did have I had to take time off my dream job, with no definitive return date, but I had to defer the majority of my university study, keeping only one online unit, a stark contrast to my enjoyable challenge of an intense academic calendar.
And so now I’m left with the basics. The choice to expend more energy than I have has been taken out of my hands, so I am able to attend to my fundamental needs. I can’t eat yet, but I can drink. For the first time in years, I can shower every day. I have the energy to brush my teeth, brush my hair, and to spend short amounts of time doing something small that I enjoy, like some colouring, or reading, or writing. I can finally listen when my body tells me to rest. It’s hard to relearn these basic signals, because I’ve spent too long ignoring them. My new goal, is to shower every day. I need to cut back my life to the point where I can shower every day, and set that as my limit. As I gradually add things back into my life, this will be the benchmark. If I don’t have the energy to shower every day, then I know I’ve gone too far, and I need to take a step back.
Although there have been so many things that I’ve lost to my illness, there’s also so much that I’ve gained. I know that my friends and family are with me, giving me the energy to be strong when I’ve exhausted all of my own. I have met new amazing people, from all over the world, who understand my struggles because they’ve lived them to, and are proof that it gets better. I have learned to let down my walls, that’s it’s ok to admit I’m vulnerable. I’ve finally been able to tell those that know me what’s going on, and I am able to talk openly about my illness, even posting on Instagram for Gastroparesis Awareness Month.
I also know that what’s been lost, may not be lost forever.
I am choosing to have hope. Hope that, even if my life will forever be different to the life I imagined at 20, or at 16, or at 5, that I will still be able to do the things I love.
I just need change the way I do them, so that I can love myself too.