Diagnosed age 10 with this disease M.E none of us could comprehend how big this could be in the making of my life ahead. No doctors are taught no patients are informed, so I’ve spent years reading and self educating. It wasn’t until my early twenties after suffering a miscarriage and my body began to shut down once more that I really had the fire within to figure out what this was that was happening.
Complete miss communication between brain and function, pain over took every joint every muscle like a dark storm in a horror movie. Family and friends became confused and wanted explanations as to why I functioned more of a 90yr old than the 20 something I was. M.E is a brain and immune system disease. Your body shuts down sometimes violently beginning with swelling of the base of my brain leading to slight paralysis or full paralysis depending on how fast I can get to sit or lay to rest it off. Light sounds and general being becomes hard and even to make a cup of tea felt like a marathon. It wasn’t until I cooked a shoe (by accident) and collapsed in my shower until I realised that in my twenties or not I was incapable to care for myself.
Laying on ‘my sofa’ at my parents house I will always remember the moment I couldn’t control any part of me leading me to wet myself while in my parents company, unable to control my emotions I simply looked at them crying that this shouldn’t be happening at 24yrs of age and this isn’t my life. I watched from my sofa my wheelchair my walking stick, my sisters all beginning their journeys as mothers. With 6months between each of their first babies my envy was on the brink of utter green jealousy and so the disappointment in my body and myself became to fester. My energy was stolen and my heart was undoubtably broken, when you become this low it was certainly important to see that the only way is up.
With such support from our beautiful family and a couple of friends I began my healing with pacing prayer and pain killers. I started nannying part time a few hours a day to build up my strength and started to socialise. At 28yrs old things started to ease in a marvellous way, I made new friends I started dating and I was able to go on holidays.
Age 29yrs I met Olly who surprised me with a trip to Italy for a romantic weekend…. 5 weeks into dating I was feeling so anxious he would find out that I was an ill person. First night in my body shuts down and the tears roll uncontrollably ‘I cant be normal’. This man didn’t even blink – he did as I had instructed prior to the trip, coffee and pain killers and rest. He carried me to the balcony and waited until my body eased then continued his plan to wine and dine. It was in that very moment I fell in love and a glimpse of a life I may be able to have. Almost 3yrs down the line we are married with our first baby Betty and I cannot express how this all feels like a dream. I use pain killers every so often and I may have the odd down day but I will stay strong for my family and continue to do everything I possibly can to stay on top of my health. I may always be fearful and anxious but only to wake up with these guys is enough to make me feel like the luckiest person ever to live.