October 19th 2019
So! (Ready..)
I’ve been in a few support groups and stuff before and frankly I find them pretty depressing – personally, the majority of the time I like to try and stay positive whilst being chronically ill as my mood is so easily flipped to negative. So, I’ll tell you a little about myself and why I decided to write a blog.
I’m in my second year studying English Language and Linguistics at Uni of Brighton. I am also a part- time beauty therapist (recently I have been working hard to complete courses to be able to fund being a disabled student woo hoo). My conditions do cause brain fog and fatigue so do forgive me if some things simply do not make sense to you!
At 14 I was diagnosed with Panic disorder and agorophobia woth OCD which led to Depression and was a bit crappy; I didn’t really go out of the house much for two years – unless I had no choice. Many people struggled to understand, but through the support of my family, medication & multiple medical professionals, after a long haul battle I’d like to say I’m 90% over the panic stage of my life (touch wood).
(Edit these diagnoses are now incorrect)
My fairly new challenges in life have been ME/CFS (Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome) a diagnosis in 2017, Fibromyalgia with Hyper-mobility syndrome & a recent diagnosis of Tourette’s syndrome!!! (No, I don’t shout swear words out constantly, don’t worry). On top of this I have multiple hormone imbalances, such as vitamin levels and thyroid levels.
I have a blue badge which has improved my quality of life dramatically! I am so grateful for it. But I am still feeling slightly isolated. I have plenty of friends who are amazing but our energy levels simply don’t match up. It’s hard for people to understand why I sleep 26 hours a day or why I slur my words when I’m tired or appear in slow motion – as a 19 - year old most my friends are out clubbing till 6am. I’m sure if you’ve ever experienced an invisible chronic health condition you are used to the ‘oh really, you can’t do that?’ and the ‘you really don’t look disabled’ comments that come along with the disability.
So basically, cut a long story short, I’d love to start being proactive in a positive way, to meet people with similar conditions to my own & share our experiences. My doctor alone has met 1 person with Tourettes in 29 years of practicing medicine, and as for ME/CFS, I feel they are very misunderstood conditions. (No, not everyone is tired in the same way I am), (No, exercising excessively won’t help, as it is not down to laziness!) I’m hoping that with a little insight into my life, it could help improve others’ and my own mental and physical health!
It’s okay to feel shitty sometimes: I spent yesterday crying – as going back to uni with Tourettes, anxiety and fatigue is my idea of hell. For me, my own negativity tends to bring me down so…
As I’m writing this, I am trying my best to surround myself with goodness & maintain my positivity. Feel free to follow my journey of tics and tips 🙂
So yeah- that’s me!
Comments