A year ago today I didn't even know of CRPS, FND, NEAD or the thousands of other strong people that have these conditions. I've had 74 appointments to get where I am today, more scans than I can count, too many ambulances,
blood tests, medications, doctors and PAIN! Without my family, friends and the people, I've met because of my illness I definitely wouldn't be as strong-willed as I am today! I'd always had a healthy life, and had (thankfully) never
experienced any major health issues as a child. I never thought I would go to school and my life would be tipped upside down and changed so dramatically. I wish these conditions had more awareness, but also other invisible chronic illnesses
that doctors don't necessarily know about or understand. I felt like I was going crazy at first because the initial doctors believed I was exaggerating and told me it was all in 'my head', which is a problem the majority of chronic illness
warriors unfortunately experience! I'm extremely thankful my GP pushed my local hospital to do an MRI scan on my arm and after a queried TFCC (triangular fibrocartilage complex) tear, it was concluded by a plastic surgeon it was not that! I
was then introduced to the idea of CRPS, which admittedly I didn't know much about. I was devastated when I realised actually what the condition entailed... you don't expect that you're going to get diagnosed with a debilitating chronic pain
condition! At the time I tried to just continue as much as I could because I was just months off finishing my three year GCSE courses (which I did exceedingly well in!!).
The scariest thing throughout this was the seizures that started in June (2019), I was just beginning to learn about this condition that I had, and then you get hit with something else; being rushed to the hospital really isn't fun. For months I was taken to hospital with these seizures and was told I might have had one condition, and then it was another or something else! It really begins to play with your mind that you might have a completely new condition of your brain or heart... Finally, after much anticipation, I was diagnosed with FND (Functional Neurological Disorder), and NEAD (Non-Epileptic Attack Disorder) in November (2019). It was a great relieve for myself, but also my family who of course were extremely concerned throughout all of this, it's not the most ideal diagnosis of all but it certainly could have been worse.
The thing you learn the most when you become chronically ill is about your inner strengths and weaknesses, and who is actually there for you. I have definitely got friends that I got closer with and friends that I barely speak to anymore. It's really a shame that people don't take you for you and when something truly devastating happens they then suddenly don't want anything to do with you. I've definitely become closer with my family (especially my parents, who have been a reason I've been so strong) even if sometimes it feels like I am a huge burden on them, because of all of the hospital visits, travelling and extra support! The chronic illness community has honestly amazed me, I didn't know of anyone who had my condition(s) and I felt extremely alone. Just the fact I am able to speak to others across the world that have CRPS is nice because I know I'm not alone in my fight and they can closely relate with treatment options, medications, how we feel, etc.
I can certainly say the last 12 months, has been a journey and a half but I'm still trying to fight despite the odds. A special mention to my team of consultants, nurses and therapists at Addenbrooke's Hospital in Cambridge for helping me to be able to manage my conditions, I would have been lost without the dedicated support that each and every one of them puts in! My aim is to get better, as is everyone's, and even if I don't get completely better I'll still try and stay positive because *Hope is the first step towards a cure.* Even if I can help one person who was like me after they got diagnosed because I know I will have made a difference.
I hope you are having a low-pain day, and if your not then I hope you have one soon!