This week is #MillionsMissing week and Sunday is International Awareness Day for myalgic encephalomyelitis or M.E. It shouldn’t be called CFS – Chronic Fatigue Syndrome is an umbrella diagnosis for a number of illnesses – and certainly not the damaging Yuppie Flu. You see M.E. is a very real and very debilitating condition that affects millions of people across the world. I know this because I am one of those affected! Not that I have M.E. myself but the woman I love has had it for some 15 years and so of course it affects me too.
One of the first things that attracted me to Hazel was her forthrightness. I saw her asserting herself at the check-in desk of a charity briefing we were both attending regarding the hearing loop in the room. I can’t remember the exact issue – Hazel is hard of hearing in one ear and uses a hearing aid – but I remember liking the way she handled herself. I also liked the fact she was there. I was almost five years sober and throwing myself into charity projects with Toc H. Hazel was like-minded, both working and volunteering in the charity sector.
I’ve explained the crazy circumstances in which we got together – the dyke and the drunk – so I won’t repeat them here. I will say that our relationship was what I wanted. It was one of equals, in all senses of the word. When Hazel and started going out together, I had not long come out of a brief relationship with a South African woman. Her idea of a partnership was that she was a WIFE, which to her stood for Washing Ironing Fucking Everything. Despite having her own career she tried to stop me lifting a hand in my own flat. You might think I loved it but I didn’t. With Hazel it was different. Sure, we each had different skills and specialisations but generally we shared chores out as fitted our lives. Moreover, she was independent. Of course we did stuff together but we also did stuff on our own. A good job too because clubbing until 6am in the morning was not my cup of tea.
And then, something was wrong. I think stomach problems were the first signs. Then the fatigue; real bone-aching, ball-breaking, depressing fatigue after the slightest exertion. We went to the doctor of course but he could see nothing obvious and recommended a specialist. Thankfully I had private health insurance at the time which covered Hazel so we got seen quite quickly. A good job too because when they discovered only symptoms not illness we were sent on to another consultant, then another. I think we saw 5 or 6 inside a year – had we done that on the NHS we would probably still be on the waiting list for some. Eventually, as condition after condition was being ruled out, we were heading in an obvious direction. In October 2004 at the National M.E. Centre in Romford, the diagnosis was confirmed.
Over the year, Hazel had declined considerably. She had had to give up work as she just couldn’t concentrate. Ironically at the time she was working from home phoning BT employees who had been long-term sick and helping them adjust back into work. The Disability Consultancy she worked for were very quick in letting her go!
By the following spring, she needed a wheelchair to travel any distance outside of the house. Thanks to the local Lions and Toc H we got her a mobility scooter so she could be a bit more independent. We made our last two trips by plane that spring but found the whole business of taking wheelchairs through the airport too draining for her. Also, when we went to Italy, the equipment she needed meant our excess baggage cost more than our tickets. We decided then to only go where we could drive though that has never stopped us going out to our beloved Belgium.
I was finding being a carer quite a challenge. It’s not that I wasn’t used to working with people with a disability and certainly not that I wasn’t used to cooking or cleaning. I think it was the psychology of suddenly being put in a position where you have to take responsibility for someone else that put a strain on me.
On top of that, the Fitzpatricks had recently sold the company I worked at to a Dutch master, and since I was close to the family, my job had lost its appeal. That’s when I decided to jack it all in and we chose to move to Norfolk. It was dangerous decision, to give up a near six figure package, and when the flat failed to sell quickly, it damn near crippled us financially. That said, I don’t regret it one little bit.
So, yes our lives changed dramatically but it would be unfair for me to moan about my lot. What #MillionsMissing is about is what the people with M.E. are missing out on. That’s why Hazel’s badge – my current facebook profile pic and cover shot – says that since 2004 Hazel has been missing from Work, from volunteering, from socialising, from travelling, from dancing, and from walking hand in hand with me. Of course, we do all of those (except work) to some small degree but it has to be on much changed terms from before. When we go away, we have to programme a complete rest day doing nothing either side of a day out. And by day out – I mean maybe out for 3 hours max. Even travelling leaves Hazel grey and unable to speak.
We hope one day this wretched illness will lift as swiftly as it descended, and it might, we know of people who have improved. Maybe one day there might even be a cure though they are still working on a proper diagnosis so a cure could be a while.
Meanwhile, we manage the best we can. We live our lives the way that suits us and do not bend to other people’s expectations. That’s cost Hazel some friends but that can’t be helped; true friends support us still. We are still partners, lovers, soul-mates and friends, and still very much in love. Oh, and we do walk hand in hand sometimes but with only one hand on the steering column of her scooter, it often ends badly!