In 2006 someone filled my shoes with concrete and threw me into a tank of jelly – so I have to drag myself around slowly whilst constantly fighting oxygen as if it were made of lead.
I was a busy, active, healthy 31 year old with a demanding job and hectic social life. I was happy, healthy and loving life. Then in 2006, in what felt like a flash, I was ill and my life changed.
It started with what felt like constant trips to my Doctor, despite hardly ever needing to go before. I’d go each time with a long list of ailments and come away with random drugs each time – none of which ever worked. After a few weary months and a noticeable decline in my health, I started to self-diagnose using the internet and eventually went back to my Doctor to tell him I thought I had got thyroid issues. My own Doctor was on holiday and a new Doctor was covering his work. She was literally a saint and saved me (physically and emotionally). It was this Doctor that went on to diagnose the ME and signed me off work for 3 months. She was so positive and seemed to know so much about ME that I felt finally believed and supported.
I look back at the point of being diagnosed and wonder how I managed to function. I was a zombie, in pain, in depression and desperate. The migraines, lock-jaw sensation, swollen glands, sickness and exhaustion were the main symptoms and almost paralysing.
A few years on and I still have ME. However, I am much ‘better’ than 2006 and do manage to work full time and look after my family. It isn’t without challenge and there are sometimes tears of frustration. I am constantly tired, but don’t give in and push and push through the fog. The migraines and sleep pattern have been made HUGELY better by a medication called ‘amitriptyline’ – which I started in 2008 at 175mg. This drug isn’t without its own horrible side effects, so I have found with a good diet, sensible life style and good support network I have been able to reduce to a lower dose of 25mg
More recently I have become curious again as to other symptoms of ME as I found my old symptoms (Migraines, sickness, sore throat, lock jaw sensation, dizziness) are better than ever, but new ones have replaced them! I get terrible pains in my stomach where the liver is. I have recently had an ECG due to constant chest pains (ECG clear), bowel issues and terrible skin! Great!
All in all, I feel I manage amazingly considering the wall of issues I deal with each day, but it’s not like I’m living a normal life and I often feel very bitter about the way I feel. But, I am petrified that if I stop for a moment and give in then I’ll be swallowed into a black hole and the real me will be lost forever.
I would love to be in a financial position to give up working and go live in Turkey (my husband is Turkish) because I feel so much better without the stress of work. In Turkey I’d have lots of sunshine , organic food, fresh air, supportive network and a sedentary lifestyle built around your own pace. I once saw a documentary about ‘locked in syndrome’ and I can honestly say that having ME is like having a version of that! You are the same YOU, have the same dreams and desires but suddenly you can only do what a 120 year old can do and at a slower pace!
I live in hope that one day a cure will be found and it will be like someone can flick a switch and bring me back again. The real me, who I used to be and not the woman currently being controlled by ME who moans a lot and wants to scream HELP!