Alternate title: I Got Mad and Ate All The Cake and then Wrote a Long Post
I don't know how many women of my generation worry over their home being presentable for guests. It seems to me that many of my friends don't and not caring almost became a mark of pride amongst my peers when our children were young. A messy home was a sign that you had better things to do, you were paying attention to your children or you were out doing something fitnessy and healthy. Perhaps it is good that these women were able to drop the idea that they could and should do it all. Nonetheless I generally set the bar high for myself because I prefer to run face-first into a bar rather than hurdle it. I prefer a clean and tidy home and definitely prefer that other people see that. I expect myself to be able to do it all-cue the laugh track, but in living with a chronic illness which features significant and profound fatigue, I fail to meet my own standards on a regular basis.
I do have help. I have to or I would be drowning in dust. A woman comes every two weeks to vacuum, clean the bathrooms and wash the kitchen floor. She is here for two hours so does anything else she can fit into that time, such as a bit of dusting. I am able to keep up with my own laundry, largely because I am fortunate enough to have my own machines and not have to go elsewhere or even leave my suite in order to do laundry. I do most of my own shopping and cooking but sometimes need a bit of help on bad days and my wonderful mother steps in then. She shops for me and makes food for me often. I can keep on top of the dishes most of the time but sometimes get behind by a couple of days. A few times a month I socialise a bit with a friend. I keep myself amused with writing, reading and painting when I can. A dear friend plays scrabble online with me every day. This is the life that still sometimes wears me out so much I find myself in bed for a few days at a time recovering.
So having a friend come by for a visit on Monday was a big deal, a very exciting thing in my life and even more so as I haven't seen her in several years and she has never seen my new home. Yes, very exciting and also stressful, because she was to come one day before the bi-weekly cleaning day and she came three days after I'd already had a social outing. Three days which I spent mostly in bed recovering from that outing. She doesn't really know the extent of the illness I have and I will do everything I can to hide it from her. That's what I do. The very same me who would like people to understand how disabled I often am and how difficult it is just to do what I do, will bend over backwards and invite exhaustion intent on presenting myself as someone who is 'normal'. (Imagine me using those annoying little air quotes there.)
If I let people see that I have struggled to feed myself for the past three days and in the efforts to do so the dirty dishes have piled up because I could not cope with them, the rug needs vacuuming and the bathroom needs cleaning and I haven't showered or dressed in four days and I can't make head nor tail, as the saying goes, out of the mail and paperwork that is piling up on my kitchen table because yes, this illness has a cognitive side too, if I let people see that maybe they would understand. Maybe it would make more sense to them that I am on a permanent, long term medical leave from work and that my life has been turned upside down by this illness to the point where it is a whole different life and I am a whole different person.
But as much as I do want some understanding I don't want pity. I want to be seen as able not disabled. I like it that friends find my home comfortable and cosy and unique and I don't want them to come over and see it in disarray. If they are only going to see me once a month I want them to see me looking my best and not like some sort of ghost version of myself. So I will make every possible effort to hide it. I will rest as much as I can ahead of time and prepare carefully and slowly. I will dress myself in something nice, probably with pink in it because that makes me look healthy. I will be exhausted but my friends will tell me I look great and perhaps even say that I don't look ill. Isn't that what I want after all?
It's never that simple. As soon as I am told that I look great I feel invalidated. The voice in my head says that "you look great" and "you don't look ill" really mean "I don't believe you" or "there couldn't be anything wrong with you" or "maybe you are just making it all up." I smile, of course, and say thanks in my cheeriest voice. But inside I cringe and then I berate myself because I got what I worked so hard to get after all. I looked normal. I may even have looked good. But here's the kicker. My friend didn't show up and she didn't call. I was up early, I prepared and I waited and I fought off the need to go back to bed. I didn't eat because preparing food would make a mess and then she would see the dirty dishes and mess I was too tired to clean up and I wanted it all clean. And she didn't come and she didn't call and I got hungry. So I ate all the slices of blueberry cake I had cut up and put on a plate. Angry cake eating. Sometimes it works.
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For this day I attempted to find an outfit that would feel as comfy as sweat pants, be true to my own style ( which sweat pants really aren't ) and involve a little bit of pink in order to perk up my complexion. I tried out two variations and while neither is really successful, I didn't have that much energy to put into this challenge so here they are. I ended up in the first one. Good ol' granny sweater. Without boots this skirt makes me look quite stumpy with thick granny ankles to go with the granny sweater. But I can't exactly wear boots indoors without it looking odd. One has to make some sacrifices. I would have sat on the sofa with my feet tucked up underneath me anyhow. I nearly always sit cross legged unless I am having to impersonate a lady.
So much effort, I do hope Sophie appreciated it. She looks appreciative, no?