When I wrote Two Lessons For A Bad Day, I was upset and frustrated. Although wiser people knew why this was, I was keeping the real reason of my despair hidden, even from myself. Looking back, I am surprised at the level of my self-deception, but I literally couldn’t handle the truth. So I didn’t.
When I became too sick to work, I consoled myself with a plan to spend six months resting and recuperating. I have had chronic fatigue for ten years, and it has never been this bad. I assured myself that some rest was all I needed to recover. In fact, I thought that three months of relaxing would get me there, and then I could have a sneaky three months not working and having an absolute ball. I was so sure of this that Guy and I booked a holiday to Europe over December and January. So much for my plans.
Two Lessons for a bad day was about the time when I was starting to realise that I was not going to be well enough to go to Europe. Other people had told me, of course, but it was just easier to metaphorically block my ears and sing ‘la-la-la-la’ (one time literally when my Dad brought up the subject) than actually face the reality of my situation.
Of course I couldn’t totally ignore the fact that I wasn’t well. I made concessions and planned to take naps every afternoon, and spend money on taxis rather than tire myself out by walking everywhere. Eventually I agreed that renting a wheelchair to take over was a good idea – this would allow me to see the museums and hopefully avoid a total collapse. Our European adventure was starting to look more like a nursing home tour, but I was determined to go. The most convincing lie is based in truth, and it’s no different when it is yourself that you’re lying to. I pretended that these measures would make everything ok. I wanted to believe it.
The realities of travelling while in a condition where I can’t walk more than 20 metres without assistance are awful. The 25 hour flight to Helsinki would destroy me. The sudden change in temperature would throw my body into shock. The sensory overload of being in another place would overwhelm me. Apart from the incredible fatigue I feel when I have pushed myself too far I get painful and unpleasant symptoms like fibromyalgia, dizziness and vision disturbances. I would be in pain and unable to go out of the hotel room. Guy would be worried about me and would spend most of his time taking care of me. I realised that as I was, we couldn’t go. Guy gave me until six weeks before the holiday to show some sort of improvement. I agreed.
Seven weeks before our planned holiday my mood troubled me. I was upset and frustrated, but I didn’t connect it with the impending decision I would have to make. I couldn’t. I wasn’t ready to face the truth that I would have to give this last precious thing away when I had already given up so much. I did my best to sort through the emotions, acknowledging how I was feeling and giving myself space to be sad, and then move on. I even wrote a cheerful article about it. Ironically, my own words were “Not engaging with the reality of what you are going through… can repress and distort your emotions” Really, Claire!
I spent all of Saturday sobbing. At the TV, in bed, into my muesli. “I must be getting my period” I said. Lies lies lies, but I didn’t know it. On Sunday we talked and agreed that the trip to Europe would have to be cancelled. I didn’t cry. I’d already done all my grieving over the last week, I just hadn’t realised.
In the end, the real pain wasn’t giving up the trip to Europe. It was the realisation that I wasn’t getting better. I have been trying so hard, doing everything I can to get better. My diet is extremely healthy. I pace my activities and get enough rest. I see an exercise physiologist who is taking me through Graded Exercise Therapy. I do my best to avoid the push/crash cycle and for the most manage my activities so that I stay symptom-free. But I’m just not improving fast enough. I need to remember that “It’s the period of transition and turmoil that is the hardest part (emotionally) as life takes a knife to the picture in our head of the way life ‘should be’, or what we think is ‘fair’.”
But there is still hope. I think that the decision to not go was based on an assumption that I will get well again. I will beat this. Europe will keep until then. In the meantime it’s about discipline; the steely resolve to make the hard choices and to continue doing the things that will get me well in the long term.