Well as any good little chronic illness does, mine is flaring like a wildfire on a hot, windy day. I blame Thanksgiving, but there’s other stuff going on too, so who really knows. Anyway, in looking through my list of blog ideas I landed on this one…photographs. I’m trying to practice a little self compassion in doing this topic as writing these blogs wipes me out and this one seems pretty straightforward. 🙂 So let’s get on with it!
This illness I have is sometimes referred to as an invisible illness. That is partially true. I do not have any visible aids, like a wheelchair, although if money were to be raining from the sky, I certainly would! I do not have a visible impairment, so I guess, yes it’s invisible to others. To me though, and likely those who know me well, but are too kind to say anything, it’s far from invisible.
Here’s a quick list of very visible changes this illness has gifted me:
- Makeup – My eyes have taken such a big hit with CFS. They vacillate between tearing, feeling glued together and feeling so dry that I cannot move them. They are often red, puffy, have dark circles and bags and most disturbingly as the day wears on my vision fades. Putting make-up on them not only irritates them but it just runs off with the tearing. So no more make-up for this girl. Thank gosh for glasses!!
- Hair – My hair was speckled with grey before CFS, but due to pernicious anemia, since CFS, it’s grey, grey. Due to my chemical sensitivities coloring my hair causes a big flare, so not worth it. Oddly, I started feeling crappy after getting my hair colored before CFS so I’m wondering if it’s FM related. Also, I only get my hair cut every eight months or so now as it’s a lot of energy. Luckily I have the world’s best hairdresser and her cuts can grow forever and look just fine. Also doctors don’t seem to care how my hair looks and they are really the only ones that see me regularly, outside of my family, so…it doesn’t really matter.
- Earrings – I’ve worn earrings every day since getting them pierced about 40 years ago, my pearl earrings were kind of a part of me, but within days of becoming ill I could no longer lay down with them on as the pain was too intense. Isn’t that crazy? Not a big deal as I can easily pop them in, just kind of miss looking in the mirror and seeing them. Silly I suppose…
- Skin – So dry, like alligator dry, and wrinkly and pale, oh so pale.
- Posture – ‘Stooped’ as the doctors put it in my charts.
- Gait – “Like an 80-year-old woman” as two
jerkdoctors have said to my face.
- Face – With flares I now have an uneven smile as if the right side can’t be bothered as much. I also sometimes stare blankly out into space
like a zombie. Sometimes I know I’m doing it, I just don’t have the energy to do anything else.
I’m sure you’re getting the picture! I look like a much, much older version of myself and it happened pretty quickly. It’s as if my body is being taxed something terrible and physically it’s really taking a toll on the outsides, as well the insides. If I then told you it bothers me I’d be lying. It doesn’t necessarily bother me. I’m only bringing it up because I don’t feel like this is an ‘invisible illness’ per say. It is written all over us, all you have to do is look. I actually have before-and-after photos I take to new doctors so they can see the progression. So I’ll wrap this up with
too many a few pictures. You’ll notice two things: 1) THIS ILLNESS WILL NOT STEAL MY SMILE! 2) This illness is not invisible. This is a four-year progression.
So that’s it. These pictures are enormous (on a desktop) but it was either that or thumbnails and I wanted you to be able to see the actual progression, wrinkles and all.
Thank you for taking a look today. If you are a fellow warrior and you have seen dramatic changes in your appearance too, I hope this helps you feel less alone or less upset when you look in the mirror. I’ll save my little paintings for next week as I imagine you are all ‘pictured out’. Please take good care spoonies, the holidays can be rough on the soul. Be kind to yourselves.