Hi, I’m Chloë and I am 18 years old.
Here’s my story..
At the age of 16, I started with agonising pain in my ear which completely stopped me in my tracks. I visited the doctors constantly to try and find the cause of my pain but they had no answers to give. Months and months past and several more doctors appointments were made but no one seemed to understand the pain I was in and because they didn’t understand, they had no idea what was wrong. At first they wanted to treat me for basic things like ear infections etc but I knew 100% that it wasn’t anything like that. The pain was unbelievable, sharp electric shocks that shot through my face and ear leaving me in utter agony. I used to tell the doctors that it felt like “the pain was in my brain.” Luckily, I have a very supportive family so they pushed and pushed at the doctors to get me referred because I couldn’t live this way.. especially with no answers.
I was referred to ENT who did hearing tests, pressure tests and other basic tests of my inner ear, middle ear etc but nothing was found. Since they didn’t find any problem, they referred me to maxioral facial who did X-rays and scans but once again, no problem showed. After this, I was sort of pushed away by the doctors because nothing was showing and in their eyes, they had tried all they could. A year and more went by and the pain calmed down. I didn’t forget about it but I put it behind me till I had finished college and got the grades I worked hard for. A couple of months after college the pain was back with a vegencance. This time the pain was 100 times worse. Like before, the pain started with electric shock like pain, suddenly starting in my ear but this time it didn’t last for seconds, it lasted for hours, even days. On the 7th of September I handed my sick note in at work as the pain stopped me being able to go. My family couldn’t stand watching me in pain and having no answers as to what was wrong, all we did was panic. After more maxioral facical visits, they decided they wanted to send me to a Neurologist. Months and months went by were no appointment came through so my family decided to pay so we could go private and get seen as quick as possible.
My Illness is Real!
An appointment came through and it was the day to see the Neurologist. The neurologist diagnosed me with Glossopharyngeal Neuralgia, wow, there was finally an answer! Glossophraygneal Neuralgia is a rare condition where I have damaged nerves in my brain stem. There can be numerous reasons for this but one of them is that blood vessels in your brain press on the nerves and eventually cause damage. The nerve that is damaged is the one that controls your swallowing and pain can be felt in your tongue, throat, ear and other parts of your face. The pain I feel is mostly in my ear but since being diagnosed, I have felt pain in other places. I have since been put on numerous medications, Carbomazapine and Gabapentin but the side effects have been awful. I’m waiting for an appointment to see the Neurosurgeon for the second time as if the medication doesn’t help the pain.. the last resort is major brain surgery. The pain I feel has since stopped me from going to work as it comes and goes and it so unpredictable. It can be set off by daily things such as eating, brushing my teeth, talking and even cold air on my face. The pain is unbearable at times and can’t be helped by medication so I often take strong Cocodamol to knock me out to sleep when it starts. The pain in my ear is electrifying and burning to the point where I can’t move or talk cause little movement knocks me to the ground. Throat and tongue pain feels like I am swallowing razor blades and sometimes it’s impossible to even swallow my own saliva and I beg for a feeding tube. I’m nearly 19 now and learning my own ways to cope with the pain. I’m still off work as they have kept my position open for me but I am hoping and praying a miracle comes my way very soon! Until that miracle comes my way, I have unconditional support from my family and my boyfriend who keep me going day after day!
Happiness Found In Crafting
My love for crafts started at a very young age whilst watching my mum make her own clothes, curtains, cushion covers and anything she could think of! Whilst being at school and college, in my spare time, rather than going out with friends, I would sit at the dining room table, fill it with my crafts and indulge myself in all the buttons and sparkly things! When I left college and got myself a part time job, my crafts were sort of put aside as the hours I did went up and I was exhausted by the time I got home! (Partly because of my illness.) As I deteriorated and the pain got worse and my sick note was handed in, crafts didn’t even enter my mind and all I did was try and sleep the pain away. I didn’t leave the house as I physically & mentally couldn’t, but at the same time I was sick of the same 4 walls. After seeing the Neurologist and Neurosurgeon and hope was given to me, I knew I needed to find something to keep me going. As I am still off work, I needed to occupy myself on the good days I had rather than staying in bed. One day, I rooted through my crafts and the happiness I found in those drawers was unbelievable! Since then, I have my own little work station set up, a Facebook page to show and advertise my things and I have even had messages about selling my things in a shop on a commission basis! How exciting! Crafting gives me a reason to get up and do something with my day rather than wasting away in bed because I’m not working. It helps to keep my mind going and plus, the money helps too! Crafting makes me happy and all I want out of my crafts is to make others happy when they buy and receive them. I craft to battle through my illness because it gives me something to aim for and a reason to believe in myself when everything in the world feels like it’s going wrong.
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