Thursday 12 September 2019

GUEST POST by Emma for Pain Awareness Month

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Where it all began...

So it all started when I was 16 (2013), taking my last set of mock GCSE exams. I was in a Business class preparing for my upcoming exam when I started feeling unwell, very hot and itchy hands. I went to the toilet to wash them as I thought I'd touched something that didn't agree with me. I came back to my class and was sent straight to the medical room as the redness and itchiness had spread to my whole body. I was having an allergic reaction, of course I didn't know this at the time. Fast forward a week later to being in the business exam, the same feeling came over again and I was taken out of the exam and put in the medical room where I was then sent to my doctors who diagnosed me with an allergy to Diclofenac an anti inflammatory medication. 

27th March 2014 - This was the day where everything changed! 

I was my final mock exam before the real GCSE's. At this point I took my exams separately to everyone else as sometimes I needed a scribe or extra time. I was standing outside the room when my legs suddenly were in excruciating pain, I held it together and sat in the room to do my exam where I was left on my own, I was so agitated, I couldn't settle, wriggling all over the place, so much so I couldn't complete my exam which I normally would easily get an A grade on, I got an E! 

From that day onwards I was in excruciating pain, that never went away. I had to still try and walk to and from school every day which I slowly deteriorated at, needing a walking stick to walk home, getting taken to school in the mornings and ended up getting picked up after school. I could only walk it for about 2 weeks since the first date, I was so slow and in so much pain that when I got in through my front door I would cry so much I was screaming, then take myself to bed because I was so fatigued. I ended up needing a walking stick constantly to try and move around the school, for which I was bullied about.

Anyway, my memories of my exams are awful. Through it all, I left school with good grades, enough to get me into college to qualify in Childcare (my dream job) and away from the bullying.

30th October 2014 - Diagnosis

I finally got diagnosed with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis, I'd deteriorated so much I was in a wheelchair most days or using a Walker. 

March 2015 - Flare

My Childcare course was going well, I had great friends around me all supporting me through. Until I had a major flare, Paramedics were called as I physically couldn't move without screaming. The paramedics decided it was best for me to stay at home but they would get the emergency doctor out to me, however they did find I had a rapid heart rate for which I now have to take beta blockers for. 
I spent a month sofa bound, my poor parents took it in turns to sleep with me on the sofa's to help me go to the toilet etc. 

June 2015 - Disappointment

I was finally able to get over the flare to then be told that I wasn't allowed to complete the second year of my course due to how ill I was. To say I was heartbroken is an understatement.

I was then left with 3 months to try and find another course as I had to stay in education until I was 18 so I decided to try a nail extensions course which I loved! 

In September my health improved drastically to which I rarely relied on a wheelchair anymore. 

October 2017 - Happier

I had left my awful old job in the salon in April, I suffered so badly mentally afterwards. My health had gone back to a steady level, barely relying on any mobility aids. I was doing so well that I decided to start my own business as a Nail Technician and I was doing really well, I had a good client base behind me that supported me entirely. I was me again, doing something I loved, in my own time and being my own boss was amazing with the ability to give myself a day off when my health took a dip. 

October 2018 - The evil within

I was doing so well up until this point, a year into having my own business, expanding on range of treatments. 2018 was a tough year, I'd had a bad experience with a "client" and then losing my fur baby Charlie who I adored, I had a lot of stress in 3 months which I think had a lot to play with what's to come. On the 27th October, my parents went out for an evening, the first in a long time, our dog looked like he needed a walk so I took him on a very short walk to which I only got 100 metres when I was walking like I was drunk and stumbling around. I stupidly carried on with the walk, came home, climbed the stairs to get 3 steps from the top and to collapse on the step I was on. That week I had a further 43 falls. I developed twitching and spasms. We went to the doctors who said, give it a month and if it doesn't improve I'll refer you to a physio. That never happened as he left the practice. My new doctor took me seriously straight away and sent am urgent referral to to a neurologist.

I carried on deteriorating, developed a gait, constant twitches and spasms so much so I hurt myself and I had two slipped discs from falling so much!

I was unable to keep my business anymore as it was too dangerous. I could no longer be left on my own under any circumstances and unable to cook or prep food myself due to my own safety.

March 2019 - Diagnosis, part 2

I was later diagnosed with Functional Neurological Disorder, an incurable and very disabling illness which has taken many peoples independence, mine included! Just like ME/CFS, people will go through better periods but will never fully "recover". FND is almost a 'sister' illness to Multiple Sclerosis and Parkinson's.

I had many blood tests which came back fine and many MRI scans which identified the slipped discs, the Neurologist was happy with his diagnosis and referred me to Kings College Hospital to confirm the diagnosis by a specialist (which she did) and Neurophysio. 

September 2019 - Life

Fast forward to the present day and I'm no different since March. I have identified that certain things will set off my twitches.

I have started Neurophysio; it's very early days yet as I've only had 2 appointments but I used the exercise bike the other day for 5 minutes and it felt amazing, it felt normal and free.

We have had adaptations done to our home to help me around the house, i.e a lower step and grab rails on all outside doors and we are currently having our bathroom changed into a wet room as I can no longer bath. We will shortly be having a stair lift fitted too as I'm having to go up and down the stairs on my bum as it's so dangerous that I could fall at anytime. 

End notes

Thank you for reading my blog post, thank you Naomi for the opportunity.
To the person reading this, I hope you feel like you are not alone. If anyone is ever struggling please talk to someone, the spoonie community is an amazing one, we are one big family. Reach out to someone who has similar or the same conditions and you'll be amazed at how much of a relief it can bring you. 

I would lastly like to say a big thank you to my boyfriend who has been with me since 2012, he knew me as a "healthy" person and has stuck by my side through the whole journey. I couldn't have asked anymore from you in your support and guidance through it all. And a big thank you to my parents for always believing in me, doing what they can to help and supporting me to get the best care I can get. 


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