‘There’s ALWAYS something wrong.’ I’d sleep for 14 hours and still be exhausted. My body was clearly trying to tell me something.’: Woman battles chronic illnesses, ‘I changed my perspective’

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“I was diagnosed 2 years ago with multiple chronic illnesses, including hypermobile Ehlers-Danlos Syndrome (hEDS), PoTS, fibromyalgia, chronic migraines, atlantoaxial instability, chronic fatigue, allergies, hayfever, IBS, asthma, scoliosis, sciatica, eczema and psoriasis, and many more co-morbidities that cause a huge array of chronic daily symptoms. Although I was only diagnosed a few years ago, I was always unwell as a child, but my symptoms and the entire ‘profile’ that led to my diagnoses were never combined until recently.

Courtesy of Katya

Ever since I can remember I have always experienced chronic fatigue, could never really take part in sports or play outside much, and have always experienced pain or discomfort somewhere in my body, be it tummy aches, migraines, back pain, dizziness, dysautonomia, rashes, etc. When I think back on my childhood, I just remember feeling SO exhausted ALL the time. I could sleep for 14 hours and still never feel refreshed. I didn’t understand how to communicate or describe this fatigue, even to my mom, and only have really understood it recently. When you experience symptoms as a child daily, you just presume it’s normal and don’t really question it.

Courtesy of Katya

I spent lots of my childhood doing arts and crafts inside, and sometimes baking and cooking. Despite my constant symptoms all my life and because I thought everybody felt the pain I did, I would only tell a doctor when things got really bad. This led to piecemeal review and visits to specialists that were never collated to view the whole picture or diagnosis. I’d also be labeled a ‘hypochondriac’ by doctors or family, and so I’d make an extra effort to be really enthusiastic in doctor’s appointments, so they didn’t think I had multiple issues that labeled me as a hypochondriac. In my opinion, ‘hypochondriac’ is a swear word!

People would roll their eyes at you or make you feel belittled for telling them you feel unwell. ‘Oh, there’s always something wrong,’ would be mentioned so frequently by family. My mom has always been preferential to holistic healing rather than drugs and medications, so she would take me to osteopaths and naturopaths to deal with my symptoms throughout my childhood. These methods of management can be hugely beneficial, and I don’t negate the utility of this approach. However, I do advocate getting a diagnosis and prognosis from actual medical specialists. Perhaps if we had persisted with chasing GPs for more specialist appointments, rather than ignoring it and going to holistic practitioners, a diagnosis would have been made a lot sooner!

Courtesy of Katya

That being said, it’s only been a decade or so since the conditions I’ve been diagnosed with have been medically recognized, so it would have taken a lot of perseverance to be diagnosed at a younger age. My mom was also diagnosed with hEDS at the same time as me, and her profile actually helped the rheumatologist in the diagnostic process, but fortunately for her, her symptoms have never been as bad as mine are. Stress can be an ENORMOUS trigger for many chronic illnesses. It causes increased cortisol levels and adrenaline, which over time puts pressure on multiple body systems. This can lower immunity, which can affect symptoms and cause them to flare up.

I am a perfectionist and despite always feeling unwell in some way, I have always been determined to do everything as well as possible (whether it’s being an A student or doing anything and everything at work). I would try to be a people-pleaser, and these traits in conjunction with chronic illness are often triggers because you don’t listen to your body. If there’s something I wish I knew as a child, it would be to worry less, reduce stress, and surround yourself in an environment that’s as stress-free as possible, and focus on methods, such as mindfulness and meditation, to get there.

Courtesy of Katya

I personally experienced trauma from the pretty sudden loss of my dad to pancreatic cancer when I had just turned 18, but the perfectionism and not wanting to stop led me to not give myself time to grieve and to not stop doing what ‘society and culture’ tells us to do, which was to complete my A-Levels and go to university. His motto was, ‘Focus and Determination,’ and this contributed to my need to continue and not stop. I thought, ‘If I stop, I will never continue or go to university at all.’

Courtesy of Katya

I got through university, but my head wasn’t quite there. I just wanted to be traveling, to give myself time to process and focus on wellness. I got a BSc degree in psychology. My symptoms were managed at university because I would sleep ridiculous amounts and nap for hours before going to any party or a night out and then rest for days after. My lectures were only always a few hours a week and I’d eat well and spend 90% of my days working from my desk in my room. I’d always hate using up the energy to get places, like the library, and would try to conserve it whenever possible—without being told at this point about pacing!

Courtesy of Katya

Once I finished university, I got a job in film production at a very stressful company, where my role at that time was later divided into SEVEN different jobs. I could never say no to a task and always wanted to please my bosses. After just 5 weeks in this environment, my appendix ruptured, leaving me on unpaid sick leave for a month. My body was clearly trying to tell me something. I returned to work, but after 4 weeks of intense pain, went for another laparoscopy where they found adhesions (internal scar tissue not healing properly) were causing the pain, which I now know is due to hEDS and connective tissue problems.

Courtesy of Katya

Another month and I was back at work, in a high-stress environment. I was never given ANY advice to maintain my strength and core muscles after the surgery. I had little time for self-care with long days and with all the usual chronic illness symptoms I had, including intense fatigue. I would get home and sleep without being able to do basic things, like washing or house chores, let alone maintain any kind of exercise regime. This continued for about a year until I started to get a hugely more intense chronic daily migraine that would not go and was triggered by any movement or bending over. After 6 months of investigations, I was prescribed medications.

One of the side effects of the medication was fatigue (which was already difficult to manage), and I didn’t want to not be able to function, so I decided not to take them. During this chronic daily migraine, I took a promotion at work and was managing even more. I didn’t want to have no income or lose my job because of my health, especially considering the specialists couldn’t understand what it was and didn’t know how to help me with it. My worst fear was looking weak or dispensable to the company, so I carried on as normal, genuinely sitting with my head in my hands in intervals throughout the day from the pain, and completely ignoring my body’s cry for help!

Courtesy of Katya

Because of all this deconditioning from being unable to move much from my migraine and post-surgery not building any muscle back up, my joints were not supported by any muscle, and my coccyx and hips all subluxed to the point I couldn’t walk. It was only after a month of walking on them, despite the pain, the inflammation significantly worsened. I was walking when they weren’t in place and had permanent sciatica down my legs when I FINALLY told my work, ‘I can’t walk and have to work from home.’ I went to the rheumatologist for testing, and after a few months of being prodded like a pin cushion with tests and scans, the rheumatologist revealed they couldn’t just say, ‘It’s all in your head!’

Although a difficult time, knowing there is ‘no cure’ for what I have, it was a relief to finally be believed and to combine my whole medical profile of little issues to a WHOLE picture, all explained by a handful of causal medical conditions. This time was filled with the common stages of grief: denial, anger, bargaining, depression—and finally, after a while, acceptance. This process was an extremely difficult time for both myself and my boyfriend, Rob, who I met at university. We’ve been together for over 6 years now. He’s a huge support for me with my chronic illness, and is also my travel buddy!

Courtesy of Katya

I was referred by this rheumatologist in many directions to different specific practitioners to manage my conditions in a holistic way (covering all modalities) and to improve my quality of daily life with a range of strategies. I spent over a year getting the hang of those techniques, working from home, focusing fully on ‘healing’ and wellness, and getting to a point where I could manage my pain and know what strategies to use for certain symptoms.

I changed my perspective from thinking one day I would feel ‘normal’ and ‘pain-free’ to realizing, yes, this is CHRONIC and it’s about LIFESTYLE changes, where I need focus on daily pain management, mindfulness in the present moment, and appreciating all the good things about life (despite being in chronic pain), while also knowing symptom and pain relief isn’t a linear process, and flare-ups happen in waves and are very unpredictable. I’ve collated all this information on my website, so if you have experienced something similar, you can have a bit of a headstart with everything in one place.

Courtesy of Katya

Traveling has been my aim for many years, particularly since before my dad passed away when I was finishing my A-Levels. When I was diagnosed, I looked for a resource that could tell me how to prepare, what to pack, where best to go, things to do before I left. I couldn’t find it but I did the research manually and have collated it on my website to hopefully make someone else’s journey a little easier than mine was! I also have a growing collection of spoonie-friendly recipes, suitable for many elimination diets and dietary restrictions, to be as accessible to as many people as possible.

Life with a chronic illness is definitely more complex, and there are many days I still feel frustrated and exasperated from it. However, my awareness the past is a perspective, the future is a concept, and the present moment is all we have is motivation for me to be as mindful as possible about every fragile moment we have on this earth—aiming for wellness and constantly searching for the solutions and pain relief strategies to help me feel good and relieve the chronic pain. And while doing so, I’ve created this platform to hopefully help someone else get some relief, too!”

Courtesy of Katya

This story was submitted to Love What Matters by Katya of London, UK. You can follow her journey on Instagram, Facebook, YouTube, and her website. Submit your own story here, and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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