Summer As A Spoonie

Posted on by Accidental Spacegirl

Central Park

[Image: Central Park, Chelmsford, courtesy of Google]

If there’s one thing I really don’t like about summer (aside from the Hot; I do terribly in Hot and like autumn and winter the best) it’s when all the young, pretty ladies break out the kind of adorable sundresses and accessories that a rotund, middle-aged trout (me) would look utterly ridiculous in. Walking behind an attractive girl in a jauntily striped “sailor” dress on my way in to Asda earlier, I could almost feel my fat expanding and my shoulders definitely began slumping. My hair desperately needs washing, I don’t have my partials in and I was wearing my trademark easy-to-put-on leggings and t-shirt. Yes, I felt frumpy next to this vision who could have stepped straight out of Parisienne Walkways (the version without the lyrics, please and thank you). Realistically, someone far prettier than myself probably would too. She was, after all, incredibly – and naturally – beautiful.

I am, however, a Spoonie. That’s just how it is, since you don’t get a Get Out Of Jail card when handed your sentence diagnosis. I’m chubby because I can’t generally go on long walks any more, even though I would dearly love to. My hair isn’t washed regularly because I don’t have the energy to maintain my appearance, and the entire rigmarole of putting on a bra and a pretty dress and then doing my hair and makeup is just not going to happen. Most of my energy goes into just staying awake! So, naturally, I most closely resemble a blonde Gorgon, with wild ringlets and tangles for hair instead of snakes. I’m hiding away in the house most of the time so don’t generally care. The people who do see me on a regular basis (the neighbours, the postie, and obviously my husband) know that I have both a disability and a chronic illness; provided I’m wearing clothes, the neighbours and the postie don’t mind or care what I look like on any given day (obviously my husband doesn’t either, but he’d rather I go without the clothes. Obviously).

But I am also human, and would like to do the “girlie” thing sometimes, just to feel special and pretty. I find makeup a chore and don’t even tend to wear it on special occasions (I think the last time I wore any was for my wedding, four years ago) but now and again, it would be nice to have the energy to create the appearance of carefree health. At best I could be described as “cute” (think Jo Grant, if you’re a Doctor Who fan), but from past experience I know that I could be beautiful, if only I had the energy to spend on how I look. Because every person with a good soul is beautiful, and a good soul is what I strive to be.

I think what I’m trying to say here, is that you cannot always judge a book by its cover. Please don’t judge the person in scruffy clothing; the large scruffy person with a tummy; the person whose hair could be used to fry chips in; the person with terrible body odour who just sat down next to you on the bus. You don’t know how difficult it may have been for them just to get out of bed today, let alone function as a human being.

And never forget that, one day, a chronic illness could strike you in such a way that you have to stop being particular about yourself. But I truly hope that you never have to live as we, the invisibly sick and disabled, have to. For us there is no choice, because there is no Spoon.

 

12 thoughts on “Summer As A Spoonie”

  1. Low spoonage really sucks. And it’s not like you can build them up to carry over to the next day either. But over-use on one particular day does seem to steal them from the future.

    Basically, the human body is bloody strange. I wish there was a magic wand that we could wave to make chronic pain and chronic fatigue conditions go away.

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    1. You are so right there. Tomorrow we have a huge event to attend (my FiL’s 80th) and that means bathing, washing my hair and making a real effort with my appearance – and that’s before we meet up with the family for the restaurant meal. I’m probably going to be broken for a good week afterwards, but at least in this case the effort is worth it 🙂

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  2. It’s so true – you do not know what it takes for someone to get out of bed each morning. Thank you for your honest post!!

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    1. Thank you for stopping by, and for following. Yes, people are so quick to judge when they can’t see anything wrong with you, aren’t they. I don’t go out much any more, because it’s too exhausting trying to make myself look presentable.

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      1. Thank you for reading my blog as well – I get so excited whenever I see someone new has stopped by!!
        I don’t go out much either, so I totally understand what you’re saying. What are you doing for your liver right now? I’m taking fish oil, lecithin, milk thistle, several liver – specific supplements and doing castor oil packs and saunas.

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      2. Unfortunately there’s not really much I can do for my liver. It made a total recovery (and so I don’t think the diagnosis of cirrhosis was accurate because it wouldn’t have been able to come back from that), but long term meds for epilepsy and CFS are taking their toll. Because my liver has been previously compromised (and everybody on my medical team agrees that Naproxen did for it if nothing else did) I’m not allowed to risk any supplements, so I can only try to keep my salt and alcohol intake down, and my tea and water intake up. Chinese tea is good for the liver and so I drink plenty of it 🙂

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      3. I’m sorry that supplements are nor possible but it sounds like you are doing all you can! Where do you get your Chinese tea?

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      5. I would appreciate that, thank you! Chinese tea is something I haven’t tried yet.

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  3. I just run constantly on negative spoons until I get a week off like this week then end up dead for at least half of it as the body gives in, mine is not a ‘chronic illness’ as such but the result of bring up a small child while working and trying to manage long term pain, I have days now where I survive without painkillers but that does not mean they are pain free just that the levels are low enough I function without the chemicals, yes I love my make up and put it on whenever I go further than the local shop but it is not just an expression of creativity but it is my way of feeling good when the body I spent years keep in shape has now failed me and a mask that hides the dark circles from sleepless nights , so just as we should not judge those who do not have the energy to go the extra mile we should not judge those who do either no one knows what lurks under another’s skin.

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    1. You’re absolutely right, of course. Just because someone manages to take good care of their appearance, it doesn’t mean they’re well either – and you’re just one of several people I know who use makeup because it makes them feel good. I always have a good case of facial psoriasis and even sunburn (even at minimum exposure) in weather like this, so I’d probably find that makeup would sting anyway.

      I’m just home from my father-in-law’s 80th birthday celebrations, and am probably wiped for the next three days or more now. Worth it though, as this family are all big kids and so we had a great time 🙂

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