What chronic conditions do you live with?
- Hypermobile Ehlers Danlos Syndrome (hEDS),
- Chronic Migraine
- Multiple Allergies,
- Mast Cell Activation Syndrome (MCAS)
- Postural Orthostatic Tachycardia Syndrome (PoTS)
- Atlantoaxial Instability
What’s is the most common misunderstanding about you or your condition?
It’s invisible so people find it hard to realize how disabling it can be despite looking totally normal
What’s one thing you wish you knew when you got diagnosed?
To listen to your body and give yourself time to process any grief or trauma. You can be replaced in your job but you can’t replace your body! Health and wellness is absolutely KEY. Being a perfectionist or people pleaser shouldn’t ever supersede health. I realized (only when at my absolute worst in terms of physical health) that my own wellbeing is critical. It’s all about a permanent lifestyle change and a focus on wellness
What’s the most ridiculous thing a doctor has ever said to you?
I feel as though we often “know” what’s happening in our own bodies, regardless of what doctors say, I’ve always intrinsically been right from the start, even if it sounds really odd or rare to them.
I’ve always experienced migraines and ‘painful swollen lumps’ on both sides of my neck at the bottom of my head. They started to get worse and more inflamed when I was working at the film production company. Around 6 months before I experienced a chronic daily migraine (triggered by any movement) I went to my GP. The lumps were swollen and painful, and my vision seemed to have white spots in it and I found it really hard to see. I wasn’t yet inundated with a daily excruciating pressure headache yet BUT was experiencing this visual disturbance daily and migraines quite often. I described the lumps and told the GP that it felt as though the lumps were pressing on my brain and affecting my vision.
She laughed at me, said that wasn’t possible and told me I had anxiety, did an ultrasound on my neck (without a referral to a specialist) and when it came back normal she told me I was making it up and that what I explained wasn’t possible. Medical gaslighting at its finest…! I lost trust in myself, starting to believe I was making it up, because the doctor told me it couldn’t be real. It’s also what led for me to ignore my health for so much longer after that, until I couldn’t walk a year or so later.
~6 months later the chronic daily migraine began, I had a scan from a Neurologist but it was the wrong type, so the issue was undiagnosed for another year. Until I couldn’t walk from joints subluxing so much that I went to a Rheumatologist, found out about Ehlers Danlos Syndrome and was diagnosed. He ran an upright MRI (really the only way to diagnose neck instability) and the cause was exactly as I had predicted; my neck joints would sublux when I turned my head, causing the capsural ligament to become inflamed (those lumps I mentioned) pinching the vertebral artery and blocking blood flow to the brain!!! This was the explanation of the symptoms that I described exactly to her and it can cause migraine type symptoms and impair vision, cause pressure headaches, nausea, facial pain/numbness etc.
Essentially, WE know our OWN bodies best. What I described was EXACTLY what was happening. I always would say to people it feels as though the blood is stuck in my brain and it really was! Trust your instinct, research-research-research (I could have discovered EDS earlier!) and request further diagnosis even if a doctor thinks you’re making it up.
How has chronic illness shaped your relationships?
Unfortunately I find it hard to keep up with friends because of lacking in energy. They’re always free in the evenings and my energy is finite and limited to the mornings. Even for a zoom call it’s so exhausting, and when there wasn’t COVID I’d often cancel due to lack of energy/flaring symptoms. This is definitely something I need to work on.
Tell us a funny story about when nothing went to plan…but the story is one good one to tell!
Before I was diagnosed, this story is about one of my first full dislocations I experienced. At the time I had been vegan for a few years, and was still at uni.
Quinoa is something that’s perhaps stereotypically eaten by vegans (and back then it was a lot less heard of!) I would cook quinoa in batch and freeze it. I took out a lump of pre-cooked frozen quinoa from the freezer and realized the portion was too big, so I put both hands around it and tried to snap it in half. I presumed if it wouldn’t break my fingers would hurt and I’d stop, but because of Ehlers Danlos.I experienced none of that and my thumb fully dislocated and popped out! It luckily popped straight back in but I had to go to A&E, was un-usable for weeks and took a long time to heal fully.
I feel like it’s very (perhaps!) millennial haha…
How did you dislocate your thumb?
Ohhhh, you know, just on a block of frozen quinoa
To what do you attribute your ” daily will?”
At the moment this platform is a huge motivation to get out of bed, knowing that my advocacy and insights may help even just one person on their journey. My symptoms are so variable that full time work isn’t really possible for me, so my main focus is reducing symptoms to try to feel good, creating for this platform and sometimes a bit of freelance work.
What alternative treatments or therapies have most helped you? Any that surprised you by how effective they were?
Perhaps the most surprising that I’ve been having recently…. Reflexology.
So, my mum is a reflexologist. Having studied Psychology I’m very focused on evidence based therapy, and Reflexology currently has a mixed efficacy.
I’ve recently been having a lot of flare ups and she’s been treating me with Reflexology. My nervous system has been so hyper-reactive following COVID and Mast Cell Activation has been so severe that I’ve been having trouble swallowing anything without allergic reactions (even water!).
The therapies have helped not only with calming my mast cells, but with physical symptoms and stress relief in general. I started these therapies with a lot of skepticism, but something I noticed was that she’d press somewhere and I’d experience a sharp pain/tingle in that location. For example, she’d work on my chest and I’d experience a crushing feeling and palpitations or on my lower back and I’d have to wriggle from how much I could feel the therapy working. Even when she’d work on the points inside my brain like the hypothalamus, I’d feel a tingle or sharp feeling inside my head!
At each time I’d tell her what hurt/sensations I had and she would ALWAYS be on that point. I went in skeptical and still believe that the therapy may have mixed efficacy for many people, and it also depends on the experience of the therapist. But for me, I was very surprised at the physical connections between the points on the feet and the parts of my body, that I didn’t believe could possibly exist.
For my mental health, I find that meditation is key (and my mind often puts off doing this even though it’s so beneficial so I have to make a big effort to add it into the structure of my daily routine)
How has “being disabled” changed you as a person for the better?
I’ve learned to appreciate the little things and everything that my body still CAN do. When you suddenly lose your mobility and simple daily tasks become a challenge, you realize how incredible our bodies are and all that they do for us on a daily basis, 24/7. When symptoms improve (for me mobility and disability fluctuates) and I’m having a better day or week or month, I don’t take my abilities for granted. It helps me to be mindful of the present moment, because the now is all we have.
What made you decide to become a chronic illness advocate and start your blog or social advocacy account?
When I was diagnosed, I wasn’t sure if I’d ever be able to even travel. Following my diagnosis, I took a year being more or less housebound with a very consistent routine to manage all the aspects of my chronic illnesses. All the things that helped me with management can be found under management strategies on my website.
During this time working from home, I would spend every evening preparing for my travels. Having a chronic illness means a lot of factors may need to be changed when planning for travel and it’s not always possible to travel in the ‘conventional’ way that people tend to travel and there’s often a huge amount more research required to ensure you are ready to go.
When I was away, I realized that I could share what I’d learned and streamline it for others looking to do the same, to hopefully help and make someone else’s journey with chronic illness a little easier.
When our travels were cut short, I also started sharing general resources for daily management of chronic illness and recipes that are suitable to many elimination diets and that are spoonie friendly!
What is the one thing you are MOST proud of yourself for achieving despite your illness?
Perhaps learning to travel with chronic illness. It took me over a year to prepare and involved a LOT of research, preparation and planning but because of this and also altering the way in which we travelled, it went smoothly and I can’t wait to continue to travel after COVID is over. (Our trip was cut short because of COVID and was 3.5 months instead of ~18 months)
What immediate changes or improvements in patient advocacy would you like to see happen over the next 5-10 years?
A better understanding of chronic illnesses from more of the people in healthcare, for example if my GP had any knowledge of Ehlers Danlos Syndrome I could have been diagnosed and managed better from a younger age. From the general public, the awareness that you can be unwell without looking ‘traditionally sick’ is important, and something I try to advocate for.
I would LOVE for a ‘cure’ to be found for my chronic illnesses too – technology often improves exponentially so within 5-10 years I’m hoping that there’s a breakthrough in research
Favorite life hacks that help you get through the day?
What advice would give to someone newly diagnosed with your condition?
There is no denying that it’s super difficult to be diagnosed with chronic illness, especially when pain is chronic and symptoms and flare ups feel never-ending. There are five stages of grief you may experience when first diagnosed; denial, anger, bargaining, depression and then acceptance. They aren’t always linear and you may experience some of them after you’ve ‘accepted’ your chronic illness or if new symptoms present.
However through a myriad of strategies you can make daily life with chronic illness more comfortable. For me, my aim is to feel as good as possible each and every day. So my focus is on noticing the symptom and finding a solution (i.e. pain relief strategy). A change in lifestyle and daily routine may also be important to helping to manage chronic illness, including flexible working, listening to your body and symptoms, not pushing yourself and re-structuring how you get daily tasks done (perhaps with help from someone else or a carer).
What legacy do you want to leave for the next generation of chronic warriors?
A platform of resources and hope to help even just one person with chronic illness find that their journey (for both daily life and travel) a little easier than mine has been!