Hello my lovelies,
I want to apologise in advance if this is abit all over the place. This story is extremely difficult to tell. Encephalitis changed my life a considerable amount and left me with a broken body. it’s been a roller coaster of a journey as you may notice throughout this post.
Today is “Encephalitis Awareness Day” – to help raise awareness for a very rare and life changing illnesses, I wanted to share with you a part of my story and some facts/information on Encephalitis.
In January 2013 at 14 years old I somehow came down with a bad case of Whooping Cough which I had for a very long and draining 6 weeks. It took a while to recover fully from Whooping Cough as I had inflamed lungs but once I’d fully recovered – I returned back to a normal teenage life filled with school, socialising, shopping and anything else I enjoyed doing. Although, looking back now it’s clear to see I never did fully recover. We had noticed I was continuously fatigued, my body would give out, I was constantly battling infections, my memory began to fade, I would ache abnormally for days after any kind of exercise, I would pass out and a list filled with symptoms were happening yet we at the time we just put it down to my Thyroid Disease as it wasn’t under control and didn’t think much more of it!
In September 2013, myself and family went on our first holiday in years. We went to Tenerife from the 2nd till the 9th but during the holiday, I knew something wasn’t quite right. I was still experiencing all the symptoms I’ve mentioned above, yet they were more noticeable to me and I was beginning to get new symptoms that I hadn’t had before. Yet again, we just put it down to the amount of activities we were doing throughout the holiday and didn’t really think to much of it.
On the 10th of September, the day after we’d come home from our holiday, I was experiencing the same symptoms but in myself I was feeling fine. nothing abnormal jumped out at me so I carried on with normal life believing it was just my body being over tired from all the fun I’d been having.
BUT on the 11th of September 2013, my life changed forever! I was in my first lesson of the day at school when a migraine took over, the pain I felt was crippling so I decided to go get some painkillers to see if I could ease the pain. As I got up out my seat, I collapsed to the floor and I completely blacked out – my legs had given way and felt like they couldn’t carry the weight of my body. All I remember is opening my eyes to being surrounded by my class, teacher and medical man; this was just the beginning. This happened again later that day, only this time I was rushed to hospital as I was in agony and physically couldn’t walk without help.
At first, the hospital put it down to a virus I’d caught whilst being abroad as my urine contained three different types of bugs and my white blood cell markers were high, because of this we was sent away with a bag full of antibiotics being told I’d get better as the days went on. But things just continued to go down hill, I was experiencing multiple symptoms like; dizziness, fatigue, sickness, constant migraines, blurred vision, paralysis, memory loss, brain fog, confusion and the list goes on and on… I was constantly back and forth the doctors/hospital looking for answers. I was admitted to hospital and had tests but they couldn’t tell us an answer leaving us feeling abandoned and confused. By the November of 2013 I was completely wheelchair bound, unable to use or put any weight on my legs. By this time, other parts of my body had began shutting down and I can hand on heart say – this was the scariest time of my life.
In February 2014, I was referred to Sea Side View who diagnosed me with Chronic Faitgue Syndrome which at the time, they believed was the reason why I wasn’t able to walk. After a few weeks back and forth Sea Side View, we was told they agreed there was more to this than just Chronic Fatigue Syndrome but it wasn’t until we was referred to a rehabilitation centre called Chailey Heritage that a neurologist diagnosed me with Viral Encephalitis. The hospital had somehow completely missed that I had a rare brain infection which had left me with swelling on the front lobe of my brain causing damage to my nervous system leaving me completely wheelchair bound and a list full of deliberating problems. They believe (no one knows for sure) that the Encephalitis originates from the Whooping Cough I had earlier that year.
Encephalitis spun my life upside down so quickly that I barely had time to process what was going on before my body had began shutting down bit by bit. Nearly 4 years on, no one knows if I’ll ever walk again – I have hope that miracles happen and I’ll get there in the end as I’ve honestly never been so determined to get out my wheelchair. There’s no denying that it’s stripped me of my teenage years and experiences, I’d barely began learning the ways of being a teenager before it was snatched away but I have hope that one day in the future, I’ll be able to experience them properly at a later age. Despite all the negatives it has brought me, it has shaped me as a person. it’s made me realise that the little things that are the most important and to never take anything for granted. Life is so precious, you should treasure it as some people don’t get that chance!
- Encephalitis is a sudden onset inflammation of the brain.
- Encephalitis is estimated to have resulted in 77,000 deaths worldwide.
- Anyone at any age can get Encephalitis. There are up to 6,000 cases of Encephalitis in the UK and potentially hundreds of thousands worldwide each year.
Types Of Encephalitis:
- Infectious Encephalitis
- Autoimmune Encephalitis
- Viral Encephalitis
- Chronic Encephalitis
- Limbic Encephalitis
- HIV Encephalitis
- Lethargic Encephalitis
Diagnosis Of Encephalitis:
Diagnosis of Encephalitis is made when evidence of inflammation or swelling of the brain is identified. The range of possible symptoms and their rate of development vary widely, and are not just found in Encephalitis. Therefore making the diagnosis can be difficult.
is done via a variety of tests:
- Brain Scan, done by MRI, can determine inflammation and differentiate from other possible causes.
- EEG, in monitoring brain activity, encephalitis will produce abnormal signal.
- Lumbar Puncture (spinal tap), this helps determine via a test using the cerebral-spinal fluid, obtained from the lumbar region.
- Blood Test.
- Urine Analysis.
Treatment For Encephalitis:
Treatment of patients with Encephalitis has two aims.
The first aim is to ensure that the patient receives specific treatment for the cause of their Encephalitis.
The second aim is to treat the complications arising from the Encephalitis and to support the patient whilst they are not able to perform their usual bodily functions.
different types of treatments include:
- Antiviral medications (if virus is cause)
- Antibiotics, (if bacteria is cause)
- Steroids are used to reduce brain swell
- Sedatives for restlessness
- Acetaminophen for fever
- Physical therapy (if brain is affected post-infection)
Please please please help me raise awareness for an illness which has changed my entire life in the matter of days by sharing this post with everyone. Encephalitis is a rare, life threatening and a brain damaging illness which doesn’t care who it chooses.
Thank you all so much for your never ending support throughout this rollercoaster of a journey I’m on, everyday I learn something new about my rare body / illnesses which is why I’m so keen to raise awareness and share my story with you all. I appreciate you all more then you’ll ever know.
Sending tons of love to you all as always,
Your story breaks my heart. I am so sorry that you have to go through this.
This must be a nightmare to go through, especially when you didn’t know what was wrong!