About
Hi I'm Katya and I created @positivelychronictravels as a platform to share insights, resources and experiences during both travel and daily life in order to cope with multiple chronic illnesses.
Like many chronic illnesses, there is no cure for the chronic illnesses that I have, and therefore quality of life is dependent on daily management strategies to maintain health and wellness, through a multitude of factors from diet, supplements, routine, exercise/physiotherapy, to mental health & wellbeing.
Click through to discover my tips and strategies for daily life whilst at home and also when travelling
TEAM
When I was diagnosed I was searching for a place that would answer all my questions about living with my diagnoses and I found that a lot of the information was in different places. So I have collated my experience to make it easier to learn strategies to manage daily life with a chronic illness.
I particularly wanted to travel when I was strong enough to do so, and found it hard to find any blogs solely about travel and chronic illness, and whether it's even possible! So once I had prepared for months on end for the long travels I embarked upon at the end of 2019, I made it my mission to create this resource to make travelling with chronic illness so much easier for you!
POSITIVELY:
🌈 It’s meant to be a place that’s filled with colour and of beautiful locations (or yummy looking, easy to prep food that can suit your dietary requirements) that can brighten up your day whilst you also learn something that may help you on your chronic illness journey
CHRONIC:
🌀 The obvious meaning of chronic illness because I have multiple, from Hypermobile Ehlers Danlos Syndrome (hEDS), fibromyalgia, CFS/ME, to MCAS & allergies, gastroparesis, chronic migraine and many more co-morbitities
CHRONIC TRAVEL:
🗺 I was supposed to be travelling for around 18 months (or just as long as my health would allow me to) and so the ‘chronic travels’ is a play on words regarding never ending travel
✈️ My travels have been cut short due to coronavirus but as SOON as we are able to and the virus is over/a vaccine is found - my boyfriend and I will be back out travelling and this platform will document them and share more tips, experiences and showcase locations suitable for travel with chronic illness
🗣 It’s also an account for discussion, to connect the community and likeminded people, and to empower people with similar conditions and experiences
🎦 It will always be as accessible as I can make it and I will always subtitle any video content.
If you also have a similar health condition, and have any questions, I'd love to hear from you, please get in touch:
If you'd like to find out more detail about my story and my journey to diagnosis, continue reading below:
My Story
I want to share my story in detail, so that you may also be able relate to my experiences and symptoms. Many of the conditions and symptoms overlap in aetiology, so I want to tell you more about how I experienced them and some tips that I wish I had known earlier!
I’m Katya, I’m from London and I was diagnosed ~2 years ago with multiple chronic illnesses including Hypermobile Ehlers Danlos Syndrome (hEDS), PoTS, Fibromyalgia, Chronic Migraine, CFS/ME, Multiple Allergies, [probable MCAS], Hayfever, IBS, Asthma, Scoliosis, Sciatica, Eczema & Psoriasis and many more co-morbidities.
History
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.
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/reactions etc.
Despite my constant symptoms all my life, I thought everybody felt the pain I did, so I would only tell a doctor when things got really bad, and that led to piecemeal reviews/visits to specialists that were never collated to view the whole picture or diagnosis.
My mum 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, however I do advocate getting a diagnosis & prognosis from actual medical specialists. Perhaps if we had persisted with chasing GPs for more specialist appointments rather than ignoring it/going to holistic practitioners, a diagnosis would have been made a lot sooner!
Symptoms I encountered as a child:
Widespread pain
Chronic fatigue
Eczema
Some food allergies
Developed oral allergy syndrome
Constant undiagnosed stomach pain
Dysautonomia
Chronic Migraines
Chronic Candida
Spraining joints & pulling ligaments
Symptoms I encountered as a teenager:
All the above
IBS
More allergies
Scalp Psoriasis
Asthma
Symptoms I encountered in my twenties:
All of the above
Subluxing & dislocating joints
A chronic daily migraine for 2 years+
Sciatica
More intense and frequent widespread pain
Trouble digesting/flares of gastroparesis
Triggers
Stress can be an ENORMOUS trigger for many chronic illnesses. It lowers immunity which in turn can affect symptoms and cause them to flare up.
Now, I am a perfectionist and despite always feeling unwell in some way, have always been determined to do everything as well as possible (whether its A* student or doing anything and everything at work), and also therefore 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.
Trauma
I personally experienced trauma from the loss of a parent when I was 18, but the perfectionism and not wanting to stop led me to not give myself time to grieve and to not stop and keep doing what ‘society and culture’ tells us to do; which was to go to university (at that point).
I got through uni but my head wasn’t quite there (and I just wanted to be travelling/giving myself time to process) - but I got a degree in Psychology. My symptoms were managed at uni because I would sleep ridiculous amounts and nap for hours before going to any party/night out and then resting for days thereafter. 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 wherever possible - without being told at this point about pacing!)
Once I finished university I got a job in Film Production in 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 FIVE weeks in this environment (my body was clearly trying to tell me something) and my appendix ruptured, leaving me on unpaid sick leave for a month. I returned to work but after four 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). Another month and I was back at work, in the high stress environment, but 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/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 just would not go and was triggered by any movement or bending over. After ~6 months investigations (but the wrong type of MRI scan for what the real cause was!) I was prescribed medications but the side effects were fatigue (which was already difficult to manage) so I didn’t want to not be able to function and 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, sitting with my head in my hands in intervals throughout the day from the pain, and completely ignored my body's cry for help.
Lack of regular physio/movement or self-care
Now because of all this de-conditioning 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 that I couldn’t walk. It was only after a month of walking on them, despite the pain that it significantly worsened the inflammation, as I was walking when they weren’t in place and had permanent sciatica down my legs, that I FINALLY told my work I couldn’t walk and had to work from home, 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 that it wasn’t “all in my head”.
Diagnosis
Although a difficult time, knowing that there is no cure for what you have, it was a relief to finally be believed and to combine your whole medical profile of little issues to a WHOLE picture, all explained by a handful of causal medical conditions.
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 quality of daily life with a range of strategies.
I spent over a year getting the hang of those techniques, working from home (and easing into one day in the office after a few months when I was slightly more mobile), and focusing fully on healing and getting to a point that I could manage my pain and know what strategies to use for certain symptoms.
I’ve collated all this information on this website so that if you have experienced something similar, you can have a bit of a head start with everything in one place - just visit management strategies for more info.
I prepared over this year to travel, as that had been my aim many years before and I wanted 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 that; but I did the research manually, and now it is ALL COMBINED IN ONE PLACE FOR YOU, to hopefully make your journey a little easier than mine was! So I really hope that creating this content is helpful to you on your own journey with chronic illness.
Katya x
If you’ve had a similar experience, want to chat or ask me
any questions, please get in touch:
