“How did I end up in a wheelchair from a bite? There’s been so much coverage all over the media because there’s been a new study published which found rapidly increased rates of Lyme diagnosis in the UK.
I don’t ever remember being bitten. I don’t ever remember a rash (only 30% of people get the bulls-eye rash if they get Lyme from a tick). You can also get Lyme from horseflies/mosquitos/fleas/spiders (anything that can bite). I don’t know what bit me or where it was.
I first got symptoms about age 11-12 (almost 15 years ago). They were cognitive at first; problems with reading, writing, concentrating, memory loss and confusion. At age 13 I got the HPV vaccine which debilitated my immune system and caused the Lyme to get worse and this is when I developed dreaded fatigue.
At age 15 I had glandular fever and swine flu which made everything worse. The symptoms of those viruses never went away (sore throat, swollen glands, muscle pain). At 17 I had a ski accident and car crash with head and neck injuries which worsened everything again and I developed a lot of upper body symptoms. On top of all that throughout my teenage years I experienced a lot of psychological trauma which probably put my body into a state where it could never recover from anything (infections/injury, etc).
I had a lot of problems with relationships, friends, and family at the beginning not believing I was sick because I looked fine. I had break-ups and lost a lot of friends over the years and became very isolated and depressed. Luckily my mom has always been my hero. She has been there for me since day 1 and she is even the one who realized I was sick and started taking me to the doctors. I didn’t think I needed it and thought everyone felt this way!
By my early 20’s I was completely bedridden and my arms and legs were paralyzed. I didn’t leave my bedroom for 7 months or even my house for 11 months. I had blackout blinds and no light for that entire time because I couldn’t tolerate any noise or cognitively have any communication. I couldn’t be touched by clothes or bed sheets because I was in so much pain and was about to be put on a feeding tube because I couldn’t even manage the puréed foods. Once every two weeks I was carried from the bed a couple of meters to the bath to be washed and changed into pjs then back to bed. This was my routine for 7 months.
When I was bedridden I was so sick I was actually in a semi conscious state, I was unable to communicate, talk or have any light or noise so I didn’t know what was going on. It was almost a blessing because I didn’t realize how poorly I was doing. Once I started to get better I became very depressed as I realized the trauma of what I went through. It was worse for my mom than me as she had to give up work to be my full time carer. She used to spoon feed me pureed food and had to hold a glass to my mouth with a straw for me to drink as I couldn’t move my arms at all. I can’t imagine what she went through during the 7 months I was bedridden but she never cried in front of me, she said she used to cry every time she left the room. I was too sick for visitors as I couldn’t have any noise or movement in the room as the stimulus made me feel worse.
The NHS failed me because year after year and test after test they still could not find the cause of my ill health giving me the diagnosis of chronic fatigue syndrome and fibromyalgia with no help or treatment available. Thankfully I found Breakspear medical which is a private clinic in Hertfordshire who suspected Lyme and tested me for it with a highly reliable German testing lab (positive) where I’ve been treated the last three years. I have made enormous progress but I still have over 50 different symptoms a day! The most important thing here is my NHS test was negative (it’s notoriously unreliable) so even if you get a negative test it doesn’t mean you don’t have Lyme!
My family and I cried so much we were relieved to finally know the cause of my ill health after over 10 years of searching. It was a wonderful day full of tears of happiness. Over time I made new friends and found a partner who not only believes but also understands and supports me as much as he can. I always remained positive despite suffering on and off depression because I knew it was the system that failed me and I had to find my own way out. I made it my mission to find the cause and after years and years of our own hard work and searching WE are the ones who found the diagnosis not the doctors or medical professionals. I am constantly researching and trying new treatments and I’m always trying to unlock the doors to better health. I would say to anyone with Lyme no matter how tough it gets please don’t give up because there is always a way out. It won’t be easy but it is possible to make improvements. I may never get back to 100% but after 3 years of treatment I’m about 50-60%. I won’t stop trying and neither should you!”
This story was submitted to Love What Matters by Emma Franklin of the UK. Follow her on Instagram here. Submit your story here, and subscribe to our best stories here.
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