I was always a clumsy child, who bruised easily. But I also had party tricks, or as we called in back in the day “double jointed ness”.
But on a more serious note I always ached, could never go the toilet from as far back as I can remember, I was just generally always ill. Also the fact that I could just look at something semi dangerous and something would break. I fell off a chair not even a foot high at 12 and broke my arm in 2 places. Plus the countless toe, finger breaks and the fact that my thumbs can just pop out of place. The joys the joys.
I knew something was really up though when in September 2008 I fell down the stairs and I broke my pelvis. I was 12 weeks pregnant at the time so there wasn’t much the hospital could do. To be honest no department wanted to touch me with a barge pole with being 12 weeks pregnant they didn’t want to be the one to blame if I miscarried. So I had a scan of my hip which was slightly out of place and a chip missing out of it. They sent me home telling me take some paracetamol and if it still hurts come march we’ll take a look at you then. But the pain got unbareable the bigger I got the less I could do and I found myself crying myself to sleep on many occasion because I was in so much pain, I could put any weight on my left side and if I did in my sleep I would wake up screaming. Surely this wasn’t right?
Come Christmas of 2008 we found out that my niece had finally been diagnosed with something called Elhers-Danlos Syndrome. Which basically means you have connective tissue problems and your skin doesn’t heal properly and you can dislocate joints easily. When we found this out I straight away wanted to get Gabriel checked because his feet can go past the 90 degree mark without hurting, go on try it bet it hurts. So I tell the midwife to which she goes metal and gets in touch with the high risk team at Liverpool women’s. Who gets in touch with Alder Hey(Children’s Hospital), and by 4pm that afternoon we had an appointment to see a consultant , if any one has ever had an experience of NHS you will know how hard it is to get an appointment within 3 months but to get one that day for 4 days time and it is 30th Dec, I started shitting one thinking something was up with my little boy that they want to see him that quick.
So we get there 2nd Jan to be told within 30 seconds that the appointment is for me because of the high risk nature to do with pregnancy, ARGHHHHH!
She takes me behind a curtains twist and bends all my joints looks at me scars and within 20 minutes I am being told that I have this Elher-Danlos I will more than likely deliver early, the baby will stay in a breech position and I could have heart problems so a scan is booked. I went into a state of shock to be honest, not quite understanding what was going on.
A series of test were booked. The first being a heart scan 3 weeks later. It was the longest 3 hours of my life. Being passed from waiting room to waiting room. I had a echo done, then into the actually scanning room. I got up on the bed they placed a couple of senors on me and claimed because of the comedy boobs and bump that the scan would have to be done through my back, however I wouldn’t give a full and proper reading. As usual their was a medical student in the room with us. I am sure it is written in my medical notes (which are the size of a small encyclopedia i’ll add) that I once okay’d a medical student because now I have one in ever bloody appointment I have. They were muttering to themselves which always unnerves me, either speak loudly enough so that I can hear you and I am not making my own surmise, or wait until I am out of the room to discuss it. They found out I did have a heart murmur but nothing to worry about, if I have any concerns to go to my GP.
So Reu came early as predicted and also sat up until then in the beech position. I finally got to see a physio, whom informed me that I had at some point dislocated my hip its 1.5 inches out of place and the muscles around it has withered so can’t be put back into place, gee thanks!I had to wear this silly belt to keep my hip in the correct place, whilst I go to physio and hydro therapy in order to get my hip back to normal.
It was half way the physio process, that she stated to me if I don’t calm down to lifestyle I will be in a wheelchair before I am 30. I stepped into the car, drove home took one look at Reuben and broke down. I didn’t want the roles to be reversed. The thought of the cared to become to be the carer, it killed me that day but as each day passes it scares me more. I don’t want to be the depended, I have played that role and I am not willing to do it again.
All of that however isn’t the worse of it, September 2009 I started fainting, and one day in early October I counted that I had fainted over 20 times in one day, Tuffer rushed me up to hospital where it was discovered that my heart defect had gotten worse. On the 4th November I spent the whole day in Liverpool Heart and Chest hospital, where I under went over 10 flipping tests, and they found out that I have something called mitral valve prolapse, which basically means one of the valves in my heart isn’t working properly and again will impact me at younger age than most, great. However training for a marathon as long as I don’t push myself too far will improve the muscle, and their was me thinking that was my get out clause!
However I trained and completed it. I have more scans since then and it has no impacted on my valve. I feel stronger now than I did before. It has been a little over 2 years since my diagnoses and I know my body more than ever before. I know where my limits are. I will not go over them. So what if my house is a mess at the day, ok so I can’t walk poor Toby every day. I won’t be able to be super skinny because I know my limits with exercise. But Do you know what if it means I am that much further to being in that chair then I am happy.
I am wearing the supergirl t-shirt. Cheak out the way my wrists sit. Lovely hey!