I have decided to blog about my story because it is a journey with a happy ending. Plus, I am all about raising awareness of Chronic Fatigue Syndrome/M.E and what life is like behind those closed doors for so many.
After many many months of not knowing why I was so poorly and continuing to deteriorate, a week in hospital, being shipped to more and more specialists, I finally got a diagnosis of Chronic Fatigue Syndrome/M.E at the age of 13. I missed most of high school but I went to a specialised school, only three mornings per week and managed to get myself 5 GCSE’s in-between being house bound and only being able to go out in my wheelchair (so considering I was quite proud).
My mum had to feed me, bath me, take me to the toilet and completely care for me everyday. My dad had to carry me up the stairs and my little sister pushed me round in my wheelchair when I was able to leave the house.
To cut a very long life story short, after high school I have had numerous serious relapses, mainly at ages 18 and 21.
I’ve never been ‘normal’. I only ever knew life being ill and sick.
I was in the best years of my life but I was in doors, in bed hidden away. I had lost most of my friends, I had to leave university and my days were spend indoors alone. My friends were my teddies and the characters on the television. I was very lonely. Nobody could help me. Nobody understood.
I was always a happy, optimistic, driven person but this illness beat me. I fell into a deep depression. I didn’t want to live anymore.
The bad times included such bad fatigue that every bone hurt. I wasn’t even strong enough to walk to the toilet or take a bath, my mum had to help me. I drank my water from a plastic childs cup from a straw. My brain fog was so bad I didn’t know what day it was or how to form a sentence together. I couldn’t speak. I was too weak to chew, my mum had to cut up all my food. The curtains had to be closed because any light or noise hurt my eyes and ears. But no matter how fatigued and weak I was, I could never sleep, I would finally drift off at 3-4am, or sometimes not at all.
On a strong enough day to be dressed and sat up writing cards to people.
Wheelchair outing – looking very skinny having lost so much weight
My symptoms and diagnosis:
Depression/anxiety, fatigue, rashes, light sensitivity, noise sensitivity, brain fog, spasms, fungal infections, irritable bowel syndrome, hypothyroidism, adrenal fatigue, hyperglycaemic, weakness, acne, lymph congestion, poor detoxification, mitochondrial disfunction, poor methylation, insomnia
Over the years we saw multiple doctors, specialists and consultants. Nobody could help. I had occupational therapy, pacing, doctors telling me I need to exercise more – none of it worked. In addition, I was also tested for Lyme disease with a possible positive result from a specialised German clinic to deal with.
However, from the age of 22 I seemed to recover. I had started to change things. I had sought the right help. Things seemed to shift. People were telling me I looked WELL! WHAT!? I had never heard that!
It felt amazing, I was told by multiple doctors, and people alike, that I would never be well, my case was too serious yet here I was seeing improvements!… I started to study. I went on holidays. I made new friends. I joined a church. I got a puppy. I moved out. I got a job! I enjoyed my life for literally the first time ever! Having spent nearly 10 years being ill and never knowing if I would ever be well again. My fatigue grew less and less intense, my IBS was a thing of the past. I was sleeping!! My skin was looking better! Rashes gone. I felt… well. It was a very very odd feeling but wonderful.
Things with my health have gone from strength to strength, and yes I am not perfect but when things go wrong and maybe I push myself too much. I know how to get right back on track.
Here I am graduated with my own company and 12 years of personal experience in my field!
And I strongly believe everyone has the potential to recover, should they choose to put in the hard work and sheer determination. Because to recover from this illness, you need it! But let me promise you something… it is 100% worth it on the other side.
I love my life. I enjoy life. I strive to do better and better.
This life isn’t made for us to be sick and poorly.
This life is made for us to thrive, feel amazing and show love.
This is possible.
Please don’t think this is a one off story or that you are too sick to be well. I have met so many people with a similar story. They are recovered! My passion is to help others to regain their lives again.
Rebecca