It’s taken me a long while to get my head round writing this post because I think it’s the most complicated out of all of them (just when you think I can’t get anymore complicated…?!). As some of you know I had mixed results from the vestibular therapy in the summer, yes my balance has improved and I am overall stronger, which is great! But this past year I just knew something was still not right. Since my successful SSCD surgery I have been diagnosed with gastroparesis, POTS AND EDs (ehler danlos syndrome). Although certain things have improved, I am still dizzy, my head still spins and I have days where I am completely off balance. My life is still far from being normal. My joints constantly hurt, I have frequent infections, suffer agonising headaches and have never ending heart palpitations. I still rely on IV fluids and dr’s don’t really know how to help me. I continued to look for answers and eventually found a specialist in London who recommended I had a load of bloods done. I was sceptical but the day before we left for Boston I had them done. When you are so desperate for an answer, you are in no position to rule anything out! Just two weeks after having those blood tests I was diagnosed with having Lyme disease.
I didn’t really know what this diagnosis meant in terms of all the problems I am currently up against. Did it actually mean anything?! Did it explain why I wasn’t getting better? I have now seen a few dr’s about this and it turns out the answer to this question is YES. It is more important than I could have ever imagined. Lyme disease has been destroying different parts of my body since I was just 14. I was really ill with a bad infection which at the time lead to unnecessary surgery (to remove my appendix). It’s now looking like I was infected by a tick at that point in my life. As I was never diagnosed or treated things continued to gradually get worse… After being diagnosed with M.E. and thyrotoxicosis I still managed to make it back to school. As time went on my thyroid stopped working all together, my allergies got worse and I began getting gastro problems. Dr’s put everything down to my thyroid and essentially made me feel like it was ‘normal’ for me to be constantly exhausted and sick. So I accepted it! By the time I got to my final year of Uni my health wasn’t great and I remember suffering with a number of infections and sickness bugs. I struggled to keep up with the work load. Again, I never thought much of it as dr’s told me it was ‘normal’. It was the ear infection in May 2013 that really made my health spiral out of control and meant dr’s had to act and stop dismissing my ongoing health issues. Unfortunately, this ear infection caused all kinds of problems for me but it has finally led me to the diagnosis of Lyme disease. ALL of the problems I am facing today, including why my body is unable to recover from surgery, is because of Lyme disease… As you can imagine this was a huge relief to finally understand what’s been happening to me. I hoped the treatment for Lyme disease would be easy but sadly this is far from the case! A lot of dr’s do not understand the devastating impact it has on a person’s life. There is not enough research or experience so patients are left with very few treatment options on the NHS and end up traveling overseas. Many people fight just to make their dr’s believe they are even ill!! Which is outrageous. Something HAS to change. I have read some truly heart breaking stories…But anyway, the good news is that Lyme disease charities are fighting for this change! Even more importantly, with successful treatment people can get better and get back to living a normal life. If I can be given half that chance of getting some of my life back, I am doing it. What ever it takes. I have found a Lyme disease dr who can help me and I begin a long course of intense treatment in December. So, after 4 surgeries, multiple invasive medical procedures and numerous diagnoses’ things are finally making sense and I have a plan of action to move forward.
My determination to get better has taught me to never accept dr’s who tell you ‘you will just get better‘, because we all know our bodies better than anyone, even dr’s. I never gave up looking for answers despite the never ending disappointments. Each appointment has led me to where I am today. I hope my story will help others in a similar situation to mine because no one deserves to go through this battle. Don’t ever give up and keep fighting for an answer.
I still have a long road ahead of me but the hope of being healthy again is beginning to feel like more of a reality… In the meantime, I continue to make the most of what I do have and focus on moving forward and getting better, always.
Living with the hope of a cure