"I have had M.E. since 1993. My husband has been diagnosed with Parkinson's disease since roughtly 2003.
"How have we coped up? Until last year (2010), we have muddled through, as he was able to drive and get the shopping, and fill and empty the dishwasher. That was until this April, when my husband went out in the car and had a major brain incident.
"I say ‘incident’ as we do not know what happened to him that day. He nearly crashed the car but managed to park in our local garage, where a lady informed the police he was a drunk driver, as he was driving erratically. After my friend and I got him home, we then had the police investigation. Fortunately they saw that he was very ill and advised that he inform the DVLA and surrender his license, which he did.
"During April and May his Lymphedema and Parkinson's deteriorated, everything landed in my lap. I thought: right I can manage this situation, I can still drive… As stubborn as ever! M.E. will not get me (Ha! I do lie to myself.)
"Six weeks later - exhausted, resentful, having great trouble showering and dressing husband.
"Now I am a very independent person. I managed my M.E. (well actually, I did not manage my M.E., I always boomed and busted and ended up limping through life). Now! Oh my gosh, I could not even get a sensible dinner together, dinner ended up as roast potatoes , sausages and mixed veg. The washing has now been in the dryer for three days as I have not got the energy to retrieve it and fold it up.
"Time has come to capitulate! Dragged myself to the GP, who recognised I was in a M.E. state and why: "Well, Joy, it is time to call in social services."
"Very down hearted I said, “Really?"
"“What would happen to your husband if you get worse? And it is time for another blood test, to look at the inflammation," my GP said. (He is not a bad GP, he does his best with M.E. patients).
"Now I am feeling a right failure. I shuffled off to the car, slumped in and realised how much awful pain I was in and thanking God I only had to drive four miles home.
"I decided to do home shopping. Two disastrous shopping delivery days - double milk, well everything wrong. My fault, doing online shopping on a bad M.E. day is not a good idea.
"I am now contemplating a trip to the supermarket. Oh my gosh, how will I manage a month’s shopping and take hubby to the clinic? It is now time to call in the NHS ambulance service. Surprise surprise, they turned out to be very nice people and said they would pick hubby up and take him to the NHS clinic. That will mean I will have two hours’ down time.
"How on earth do I sort out meals, really coordinating things? I came to the conclusion: no hope of coordinating food, so we will have to live on my M.E. creativity and learn to live with strange concoction of meals.
"I have learnt to how to improvise with food, to be able to cook with little effort. I may not be up to Jamie Oliver cordon bleu but we are managing.
"How do I see the future? I do not think about the future. I live in the moment and accept what I cannot do, with quiet resignation… and a few choice words.
"Oh! Before I go, Social Services have offered respite care for hubby, so I can recover, after they have reviewed our financial affairs. OTs are coming to see what they can do to make life easier for hubby.
"I shall update you on our progress if you like my story. I am sorry it is a bit disjointed, but that’s M.E."
