Below is an excerpt from a blog entry that I wrote in Spring of 2009 when I was living in the UK and was more severely disabled by ME. I was confined to bed most days and when I did go out I needed to use a wheelchair. My wheelchair allowed me to go places and do things that I previously had not been able to do. One of these things was to be able to travel again. This was written after a couple weeks holiday in France with my family. The photo is from that trip. (I apologize for the numerous typos, poor grammar and lack of editing. I share this as it was written back then in all its messy glory.)
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Paris Holiday – April 2009
When I came back from France I was riding a wave of high energy. The weather was so much better – so much dryer. Even though it rained some of the time, the atmosphere was less damp. What an incredible difference that makes to how I feel. I even took a few short walks! Walks people! I don’t take walks except for a stumble from room to room in my house these days. But in France, I walked – for more than a few feet at a time! That alone had me feeling like I could take on the world. When I came back I knew that it would be hard, I knew that I would have a post-holiday come down as most people do, but instead, I continued to feel better, and for the first week or so I was able to keep it up. I worked in the back garden, I worked in our allotment doing things I wouldn’t have believed I could do. We had a party at our house over the Bank Holiday weekend and I trotted around the place with only my walking stick and the occasional wobble. Everyone said how good I looked, how great it was to see me up and about. I agreed – I felt great! I celebrated what felt like a new beginning to something fantastic and exciting.
And then I crashed. Hard.
In the weeks since I crashed it has been a struggle once more between my will and my body. My will is intense and it is strong, and it is not at all pleased that my body is once again calling the shots. The directive is: stay put and do nothing. Not pleased at all. So I pushed with all my might to get out of bed and do something – anything- to prove that I was not losing this battle. I got back out to the allotment and dug in the dirt. I sowed seeds and planted starts in their new beds. Inspiration and visions came to me while I worked. It was incredible and I felt that finally after decades of being sick – I knew how to live with this illness; that I had found that something I was looking for that would push me —-through—- the pain and into life.
But then I crashed. Even harder.
I didn’t get up this time. I tried. I got as far as the kitchen where I realized that making my breakfast -at 11:30 – was all that I could handle. Even that was overwhelming. I ate and needed to go back to bed for a rest. By 1:00 I was flat out fast asleep. Woke up at 5:00, only to eat and crawl back in bed where I fooled myself into feeling like I did something by putzing around the internet. And so it has been for the past week. Sleeping late, doing nothing, and sleeping some more. My body aches and screams when I push it each time I climb the stairs. My own personal Everest those stairs are. But no one is cheering when I get to the top. Just me, letting out an exhale of relief that it’s only flat ground until I reach my bed.
Living with this illness means living with this body and not fighting against it. Part of that is being honest. Honest about my joy, about my struggles and honest about my victories as well as my failures. They are all important. They are all me. They all keep me looking for a new way to do things, creating a life worth talking about. Even if I am just talking to myself.
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