Looking after your body, particularly a malfunctioning one, is a full time job.
NAVIGATING FLARES
Caroline lives with a number of complex chronic conditions, including Ehlers-Danlos Syndrome - Hypermobility Type, PoTS (Postural Orthostatic Tachycardia Syndrome), Mast Cell Activation Disorder, Seronegative Rheumatoid Arthritis, Chronic Inflammatory Demyelinating Polyradiculoneuropathy.
Caroline
I’m a 43 year old female who has had over 30 years of ill health. To most people I look well and healthy on the outside, but turn me inside out and it tells a completely different story. I spend my life being told that "you don’t look ill". This, of course, is a blessing but is a massive disadvantage whilst trying to get the right help and answers that you need.
My journey has been a long one
My journey has been a long one! I describe it more like a rollercoaster. Ups and downs, twists and turns. Think of it like a train journey from A to B but with lots of delays, re routing, change of timetables, change of trains, engineering works!
When you live with rare conditions you have to take each day as they come. I often joke "hour by hour".
I have been lucky enough to stay positive and I have become my own advocate. Sometimes it can feel like you’re hitting your head against a brick wall, but you have to keep searching for hope and options.
I have met and been under the care of some incredible medics over the years, some who have known me for over 10 years, but I have also had a small handful of not so great ones. Never be disheartened by these. The good doctors are out there and they will help you! My favourite doctors are the ones that never leave any stone unturned and are willing to go that extra mile.
The hardest parts
As I said, it really is a rollercoaster - and one you never get the chance to get off! Learning to embrace the journey is key. Knowing there will be the good, the bad and the ugly really helps to keep you going.
Looking after your body, particularly a malfunctioning one, is a full time job.
I’d say the hardest parts are being believed, finding the right medics for YOU and the constant admin that comes with being ill. Also, sometimes the not knowing what’s wrong, and the countless tests which each bring their own wait is really difficult. I feel I manage much better when I know what I’m dealing with.
What has made the biggest difference
Doctors who understand and are willing to work with you! A few of my doctors have become almost like family. They are always working with me, not against me and this is life changing.
Staying organised. You have all the answers to the questions that medics are going to ask you. Keep note of everything. That test result or symptom from 6 years ago - might just be a key part of the puzzle to your diagnosis today. You never know what is going to be needed or important.
Keeping positive. My consultants regularly comment about how my positivity has helped shape my journey for the better.
How mOI helps me
Imagine never forgetting another test result, or that symptom that happened in the middle of the night 3 months ago, but is now significant to the new doctor youvre under the care of. mOI can really help keep your health facts in one place. I just love that fact that over time patterns can appear and potentially prevent you from triggering a flare.
As for the whole genome sequencing - what a game changer! Really getting to the core of how your body is made up. It’s like a whole new set of sign posts on this complex journey! This is going to make a big difference for me. I can’t believe it only takes 6 weeks to get all this information.
What I wish doctors understood
That no two patients are ever the same!
What I would say to someone going through the same thing
Stay as positive as you can, keep advocating for yourself, trust your gut, search for the right doctors for YOU and remember there will always be options.
Instagram: @stylingsmilingandsurviving
For Caroline, mOI provides one place to keep symptoms, results and health history together, making it easier to spot patterns and bring the right information into appointments.