In January 2008, I got engaged (stay with me; it’s relevant).
Fast forward to the following year and I was the healthiest I had ever been and even completed the Moonwalk in London. It was brutal but I had just done my first marathon. I filled the rest of the summer with planning my wedding and hen party (seriously, stick with me).
At the end of August, I started to feel run down. I couldn’t say exactly what was wrong but I just knew that I wasn’t right. I went to my GP and explained that I was getting married, had lost a lot of weight and was simply expecting a drop in my iron levels. Blood tests revealed that I had an underactive thyroid and I was booked in for a follow-up after my honeymoon.
The wedding was amazing and the honeymoon was incredibly relaxing so I wasn’t overly concerned. I was started on a low dose of levothyroxine and had high hopes all would be right in the world again.
By the next January, I was pregnant with my son (he’s now 7, going on 17). I had problems stabilising my thyroid during the pregnancy but things got a bit freaky when I woke up with numbness in both my hands one Monday. By the Friday, I had the same sensation in both of my feet. It was put down to low iron and B12, as well as my thyroid. The belief that it would all be resolved by the end of the pregnancy.
8 years on and I still do not have full sensation in my extremities and feel like I am constantly wearing gloves and tights. I get the texture and heat but not the full feels. By this time, I was also being hit with waves of exhaustion. Everyone thought this was due to having a baby but this just felt way beyond total lack of sleep. Even with a full night and supportive husband, I still felt drained.
6 months after my pregnancy, someone finally listened to my concerns and I was sent for MRIs, nerve tests, infinite bloods taken but, almost two years down the line, and still no answers.
I finally went back to my GP and almost begged for help. He asked me to start from the beginning and that’s when his whole face changed. He noticed my fingers bent backwards and that’s when he asked, “have you ever heard of Hypermobility Syndrome?”
I was sent to see a rheumatologist and my diagnosis was confirmed. Reading up on HMS, things started to click. This hadn’t started in August 2009. I had been ill throughout long periods during my time at uni.
Leaving the hospital that evening, I really believed I would start to feel better. I thought I would have my eureka moment and find some closure.
I was wrong! I was naive and it hit very hard that this was now my life. I’ve had to educate myself over the last five years and it’s still trial and error to find what works for me.
So, this blog is about what I’ve lived and learnt. It’s not medical advice but simply someone saying hypermobility syndrome is a bit shit. It’s not my whole story but it’s an important part of it.
P.S. I’ve still got the guy and whilst my pregnancy may have been a catalyst, I have the coolest kid ever! Really, he’s a dude and worth every tingle, ache and brain fog.