My Journey

In January 2009, I injured myself while giving birth to my son. I have a labral tear in both hips. It causes lots of discomfort and pain. Around the same time an MRI showed that I have osteoarthritis where scar-tissue formed around two degenerated spinal discs (L4 and L5) and a hair-line/stress fracture. Out of fear that the pain will actually be worse, I started living in denial. “Exercise is not for me, it is too painful”.

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In February 2017, I started having severe panic attacks. It knocked my feet from under me. ‘Panic is what you experience when you are stressed or under pressure, or experiencing trauma’, well that's what I thought. I could not entertain the whole idea that I, now at the age of 39, developed panic attacks. It was a tough time because I WANTED ANSWERS. I learned a lot about mental health and understand that sometimes there just aren't answers. I became a prisoner of my own mind. I didn’t want to leave home for weekends-away as it just set it off. 

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In December 2017, I had MRI after MRI and test after test as my consultant suspected that it may be arthritis causing all my pain. My joints gave me so much trouble. When the tests came back negative, the uncertainty continued. Don’t get me wrong, it was excellent news, but I just wanted answers. Why are my joints constantly in pain and why do I have difficulty moving around? I want to put a name to it all. I felt like I was going crazy knowing pretty well that something was wrong. 

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In June 2018, I was diagnosed with a second Vertebral Artery Dissection (VAD). It was scary, but a familiar road from 3 years ago when I had my 1st dissection. When a VAD occurs, a stroke is highly likely at any time. It can happen because of an injury or without injury as in my case. Fear sets in and your thoughts run away with you. I sat down with Jamie when he was only 6 years old and had to explain to him what stroke is and what to do if mummy falls ill and can’t speak. We had numerous 999-call practices. My little soldier was my righthand during the day. Neurologists can't explain why I get these spontaneous dissections in my neck without injury. But more importantly, they can’t explain why I get them and not having a stroke.  Why is all this happening. I’m falling apart at the age of 40???

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The lightbulb moment….

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My neurologist came up with a theory that I may have EDS. For  7 months I've had numerous tests and more MRI's and all the evidence lead to EDS. It was finally confirmed that I have Hypermobile Ehlers-Danlos Syndrome (hEDS) and Postural Orthostatic Tachycardia Syndrome (POTS). DNA tests were done for potential vascular EDS (vEDS). - Fast forward 16 months. These genetic test results came back 16 months after this journey started. I nearly lost the plot during this time as I was given NO answers and was merely told that DNA results could take that long (which is not the case by the way). My gut told me that my test has gone missing and that the doctors have nothing to tell me as they don't know where it is, I was not going to leave it here. DNA tests are very expensive and I was not going to accept not having an answer. Regardless of what the test may say - Positive or Negative, what will be will be, but at least I know and I can move on with my life! My DNA did get lots, and it was only because of my relentlessness for answers that I got hold of a laboratory 3 hours from where I live and found it (it took me 6 months). I tested negative for vEDS - what a relieve. 

EDS is a connective tissue disorder. Your body use collagen to provide strength and elasticity but with hEDS your body doesn’t produce enough collagen - leading to joint pain, hyperextensible joints (early onset of osteoarthritis), extreme tiredness, bruises easily, dizziness, increased heart rate after standing up, anxiety etc. and very stiff muscles (in my case). After more than a decade I had to learn that I am falling apart, and it is not just my imagination. The pain, tiredness, dizziness is real, and it is called hEDS and POTS.