Any gain with the pain ?

Recently Signs was commenting on one of Flutter's posts and said how PWME (peeps wid M.E.) are part of the 'All Pain But No Gain' Club.

Funnily enough I was kind of spouting this phrase yesterday when my dear friend S. (the one who lives in the Commune) ventured out to visit us for lunch. This journey is no mean feat for her. She is a wheel chair user, has recently spent 15 months in bed and has only just begun to sally forth into the big wide world again. Her energy and pain levels are as fluctuating and precarious as mine.

Our meetings are arranged via innumerable e mails which gauge our respective energy levels, levels of near-suicidal boredom with our own surroundings, the amount of circular conversations we are having with the same people who happen to be around, or chickens, or cats or dogs and trying to come to a final decision about how to meet, our medical conditions and the World in general.

Anyway, yesterday we finally got it together and met here, had lunch and chatted away til the cows felt so at home that they came walking into the living room and settled in on the sofa

I have always had much respect for S. We have known each other for over 15 years and worked together for ten; hatching up many ludicrous and very amusing arts projects over that time. She has been a wheelchair user for over 30 years and been through many of the emotions I have experienced more recently whilst coming to terms with a new life thrust upon me. Before recently taking enforced early-retirement she kept up a relentless pace at work with good humour, grace, integrity and a real passion to do well by the people she worked for (people with learning disabilities).

We'd made arrangements for her to arrive here by about 10.30 --- giving us plenty of time to natter, have lunch and still leave time for me to have my daily sleep at 1.30. No matter how hard I try, I cannot get beyond the need for a long sleep mid-day. My energy levels are such that after few hours I sink into a sort of comatose dopedom --- like a sleepy bumble bee on a too-cold day, droning away in a kind of stumbling stupour.

Inevitably, things didn't work out the way we planned. I have been feeling pretty grim, of late, and even nearly called off our lunch date. I was feeling particularly dopey and untogether yesterday. However, I was aware that S was really looking forward to venturing out of her place and I didn't want to disappoint so went ahead. With so much to catch up on, and us being us, we nattered away, oblivious of time: me resting on the sofa and mumbling away like a kind of opiated Barbara Cartland dictating yet another novella.

Lunch wasn't started until 2.00 and by the time we finished it was 3.15. My chum had said several times that it was my nap time but I wasn't going to miss lunch and more 'catch-up' so I kind of (mis)quoted Signs

'.....I hardly ever get to see you now and there's no gain without pain'

After lunch I fell into bed and slept like the dead -- happy-dead because I'd just had a bowl of apple cake and whipped cream and enjoyed a lovely conversation, but near-dead all the same.


Today I'm really paying for it: dragged myself to the library with my daughter, still feeling near dead and very giddy and putting on the brave face, so there is 'pain' --- but the gain of not disappointing a close friend and the lingering pleasure of a few hours together after so long apart is gain enough for me.