My Battle With Physical Illnesses
I wasn't sure if I wanted to go into details with all my illness, especially as I was worried I'd come across as a "sob - story" but if I help even one person with my experiences then it'll be worth it! It's a bit of a long story so grab a snack and drink, get comfy and hopefully enjoy reading!
I guess I'll start from when I was just a baby (I was only a few weeks/months old so obviously I'm just going off what my mum says). When I was born I was born not breathing and the midwives tried the common trick of holding the baby upside down by the leg, but alas this didn't work and so I was given an injection to make me start breathing. I then developed bronchiolitis, which is when your bronchioles become infected and can occur from a common cold. I had really severe problems breathing so I was taken into hospital and was kept in for around 5 days. During that time I became unconscious for 3 days until the medicine finally kicked in and I woke up. After I was discharged from hospital my mum wrote into a magazine in order to spread the word about the symptoms and how important it is as to not ignore any signs of bronchiolitis, little did she know that the magazine would put her story about me on their front page!
Then, when I was around 5, I developed really painful reoccurring UTIs - or urinary tract infections - something I've never actually spoken to anyone about other than my boyfriend. UTIs are when bacteria (typically E-coli) enter the urinary tract and it becomes infected. Usually the body removes this kind of bacteria naturally but in some cases (including my own) the bacteria can overcome the body's defences. When you have an infection it usually causes a burning sensation to pee and also can make the urge to pee more intense and may make this urge feel constant - not pleasant! Anyway, I underwent the usual course of antibiotics and my UTI cleared up for about a week and then it came back with the same intensity so I was referred to the hospital for numerous tests and ultrasound scans. Eventually I was placed on a long-term antibiotic course and around a year later the bacteria had completely gone!
Everything was fine for a few years after that - I was happy and healthy again! But when I was 7 and just starting Primary 4 (Northern Ireland school system) something changed, the usual bubbly Lucy started to disappear. After being known to be a chatterbox, I stopped talking completely. I stopped riding my bike, I stopped wanting to do anything and constantly complained of sore legs. Eventually one morning I woke up and climbed down my bunk bed and discovered I couldn't use my legs at all and slammed straight onto the floor with a thud. After that I was taken into the Royal Belfast Hospital for Sick Children and was referred for many tests. My doctor, Dr Hicks, made me perform a number of tests including sitting me on the floor and getting me to stand up without holding onto anything - of course I couldn't do it. I was then given a blood test, whilst my mum was taken to one side by Dr. Hicks. My mum recently told me she cried as she was told about the possibility of it being cancer but not to get discouraged as it could be a muscle disease.
After the weeks went by and we waited for me to be admitted for my biopsy my condition got worse drastically. I was no longer able to hold cutlery and I remember sitting on the seat of my bike and thinking it was broken as the pedals wouldn't move. I called my dad out and he came out and moved the pedals with his hands with ease and we both realised it was just my muscles and I cried. I didn't have the strength to get in and out of our people carrier and I couldn't walk the length of myself without feeling exhausted.
On March 13th I went into hospital and had my leg biopsy. I remember the date because my brother's birthday was the next day and I made him a Pokemon card whilst I waited on the surgeons. My mum was pregnant at the time and she wasn't allowed into the room but I remember being injected with the knock out medicine and telling the surgeons that I was too tough to fall asleep. The last thing I remember was saying "it tastes funny" before I passed out!
A few weeks later I eventually received the diagnosis of Juvenile Dermatomyositis. Something which at the time, I didn't really understand. Juvenile Dermatomyositis is an autoimmune disease which affects 3 children in every 1 million in the UK alone. In autoimmune diseases cells which would typically protect the body from infection actually react against the body itself. JDM in particular, causes skin rashes, weak muscles and can also affect blood vessels, the lungs and gut. I was placed on a strong course of antibiotics and steroids in order to attempt to build up my muscles again whilst fighting off the disease. I wasn't able to go to school and was given a wheelchair to help me move about. I remember lying at home and strangers that my mum and dad knew from years ago or work colleagues kept coming around with cards and gifts and presents to say "get well soon!".
I also ended up staying in hospital overnight for drips of medicine, and whilst I was there I needed something to pass the time so I decided to make a picture for my dad. I accidentally got some PVA glue on my hands and I remember this burning sensation and my hands kept getting bigger and I turned around and looked at my mum and she took one look at me and ran to get wet wipes. I had such a bad allergic reaction the nurses literally freaked out over what to do but within an hour then had calmed down significantly.
Overnight hospital stays turned into three day procedures. I would go into the ward at 9am and come out at 5/6pm. On the last day of a three day procedure I went home and didn't feel myself, and when I woke up the next morning at 6am I went downstairs to get a drink and I ended up throwing up all over my cooker as my body couldn't cope with so much antibiotic and steroids. The day procedures then turned into hospital visits every other day along with physiotherapy once a week. I was given special cutlery with massive foam handles so I could actually hold a fork and knife, which are actually quite funny looking and were a little on the large side for my small hands.
Eventually I was told that I had to return to school, even in my condition as if I didn't go they'd remove me from their register. So the next day I turned up in my classroom in my wheelchair and no one said a word to me - everyone just stared. I remember going home so exhausted that I literally fell straight asleep. At this point I was only going to the hospital twice a week, usually on Tuesdays and Friday after school. When it got to the point where I was able to walk short distances again I was allowed out at break and lunch. I remember one day in particular when I was walking across our astroturf and another boy came running up to me and pushed me and I ended up sliding the distance of a hockey pitch. There was such a bad burn up the side of my leg that I couldn't walk and I ended up in my wheelchair again, I actually confronted the guy about it many years later as we ended up in the same grammar school and his reply was "you shouldn't have been in my way" - delightful.
As the years went past and so did the checkups, I was eventually in remission. Unfortunately, my muscles are still weak and I get tired more easily than my peers but I'm optimistic that a complete cure will be found soon!
Unfortunately, my story doesn't end there. When I was around 14/15 I noticed my face starting to droop on one side, I didn't mention anything to my parents as I thought it would pass. But as the week went on it only got worse - to the point that one of my eyes wouldn't close. I was sitting in the living room talking to my mum one night at around 9/10pm and I remember her telling me to get my shoes on and whilst I did that I heard my mum saying to my dad "I think Lucy's had a stroke" - not something you EVER want to hear. So my parents rushed me down to the children's hospital where I was waiting no longer than 15 minutes before I was seen by a doctor and he took one look at me and knew that I had Bells Palsy instantly. Bells Palsy is when the muscles on one half of your face become weakened and therefore your face "falls" on that side. I had to wear an eyepatch and once again was placed on steroids alongside other medication.
I was referred to an ENT (ears, nose and throat) consultant and had an appointment within the next week. Until then I still attended school, but the bullying was relentless. I constantly had people making fun of me because I "looked funny" and one of the favourite insults was "popeye" due to my eyepatch. I was required to change my eyepatch several times throughout the day so that I could apply eyedrops but often I didn't in case of receiving even more insults. That first day I went home crying and I sat on the sofa sobbing my heart out to my mum saying "why is it always me?".
Thankfully the steroids worked, but not before the weakened muscles changed sides. Instead of the left side of my face drooping, the right side was - and this happened 3 times, the consultant said he'd never seen it happen before. Eventually it was gone but I can still see traces of it to this day, more so when I'm tired or haven't slept well. I'm not as conscious about it anymore but I remember I wouldn't let anyone take a photo of me nor would I go out unless I needed to.
I've also never publicly spoken about this in detail, but in 2014 I ended up having my period for 8 months solid. I didn't want to phone my GP as I was embarrassed and much to my disappointment when I did, the doctor laughed at me when I said I couldn't deal with it anymore. I begged him to give me medicine to make it stop and since then I've been on birth control to ensure it doesn't happen again. As a result of it I also developed anaemia and would often pass out, I was placed on iron supplements and another course of antibiotics.
More recently I've developed lactose intoleance so now I'm unable to eat dairy or lactose and if I do I get the worst stomach pains in the world and my skin flares up so bad. I also have recently started having reoccurring UTIs again, I tried contacting my GP to get a longer course of antibiotics but they refused to oblige as I'm not home for long enough - so I've had to invest in tablets that cost £20 and run out in a month as they're the only things that work.
Things have definitely had their ups and downs and there's been times when I've sobbed my heart out over if I'll ever be entirely healthy, but it's important to remain optimistic. Don't let illnesses stop you from being who you are or achieving what you want to achieve! I mean, I achieved my goal of 3 A-Levels and now I'm studying a degree in disabilities in university! If you are ever struggling with an illness, please speak to someone about it - it's honestly not worth sitting in silence. The sooner you get it seen to, the sooner you'll get better!
I don't want to divulge into my mental health struggles in the post as it's already long enough to be a short novel, however if you'd like another post about that let me know either in the comments or on my twitter!
I hope you found this posting interesting or informative and hopefully not too dull! If you'd like to further learn about JDM or Bells Palsy follow the links below:
JDM: https://www.juveniledermatomyositis.org.uk/WhatisJDM.html
Bells Palsy: www.nhs.uk/Conditions/Bells-palsy/Pages/Introduction.aspx
Thank-you for reading!
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