I was determined to go to Harvest Thanksgiving at church yesterday. I washed my fine, fly-away hair the day before, because it’s long and is too much bother if I have to go anywhere in the morning (I refuse to sacrifice my hair to this condition). However, I had a restless, sweaty night with little sleep, and it really needed doing again. Too bad – I wouldn’t have been ready in time. As usual, my husband brought me a cup of coffee in bed to help me come round, but I was still shaky when I headed to the shower.
Ignoring the sweat pants and comfy tops in which I spend most of my days, I made an effort to dress nicely and put on make-up. I’ve often wondered whether I should just let people see me as I look most of the time, but it gives me a boost to try to look my best when I go out anywhere. Then came the dilemma over footwear. Could I manage to wear heels? It’s not just a question of support – sometimes, I’m simply too tired to wear high heels. They put different stresses on muscles and joints and can be too much effort. High-heeled shoes are completely out for me now, but I can still get away with boots with good sturdy heels when I feel up to it. Most of the time, though, it’s flats. I used to wear heels all the time.
Having made all this effort, I was tired again by the time we set out. A lot of people came to speak to me before the service. They said it was nice to see me there, meaning well, but I couldn’t help feeling awkward that I have been there so little lately. One or two asked how I was, peering at me closely. I always imagine they’re wondering what on earth is supposed to be wrong with me, as there’s nothing to see, especially with the effort I’ve made. I remember the Sunday a lady was questioning me about my health after a particularly bad flare, and she said, “But you’re over it now? You’re better?” She sounded a bit exasperated. As I hesitated, her friend said kindly, “She’s feeling better for now. Tomorrow, she might not be.” I could have kissed her – she had got it.
The service began, and my singing voice was strong for the first two hymns. I’ve been asked to join the choir a few times, but I’ve explained that I couldn’t guarantee my attendance at weekly rehearsals or services. I’ve never told anybody that it can actually be too tiring to sing. By the third hymn, my voice was faltering. It became too difficult during the fourth, and for the rest of the service I just mouthed the words. The wooden pew was causing me back painfrom early on, and I was constantly trying to adjust my position slightly without being too noticeable.
Afterwards, there is always coffee in the church hall. I would really rather avoid this because of the acoustics. The chatter, chairs scraping on the wooden floor, crockery and cutlery clattering, people talking to me and having to concentrate and raise my voice above the din makes me want to scream. However, I stay until I can no longer stand it, just to be sociable. It is good to catch up with people when you have an isolating chronic condition. I’ve been asked to help with coffee mornings and other fundraisers, but I’ve had to explain that I’m not up to rushing
around with trays serving, or standing or even sitting at stalls for hours, or setting out/putting away tables and chairs. I can’t even promise home baking any more, because I don’t know if I’ll be well enough to do it. Then I go to these events to support with my presence and money if I’m able, and feel guilty that people far older than I am are doing the work.
By the end of the morning, I was exhausted. I knew from the outset that I was pushing myself, and wouldn’t have gone had it not been Harvest Festival. The rest of the day was a write-off. I had hoped to do some tidying and sorting in the afternoon, but it was out of the question. I had to rest, to recover, but the fact is, I didn’t. I was over-fatigued, shaky and sore, and am still recovering today. A similar scenario surrounds other outings, of course – the decisions, the effort, the anxiety, different environments bringing on symptoms, the after-effects. This is what nobody realizes when they see me out, looking neat and tidy, smiling and socializing like a normal person. They have no idea of the effort I have made, or of the price I will pay.