Bonfire of the Vanities

I haven’t had the balls to write too much about this because it is all tied up in feelings of self-worth, obsessive perfectionism and long-dormant insecurities. This illness has taken a ruthless toll on my body and the changes on the outside have, surprisingly, been some of the hardest to accept. I say surprisingly because, if you are housebound and never see anybody, who cares what you look like? But the visible manifestations of youthful vitality disappearing have really saddened me and hit it home that I’m a different person now- in every respect. Even if I came out of this tomorrow, I am changed physically as well as spiritually.

I always looked, felt and, undoubtedly, acted younger than my age. About a year after becoming sick, that abruptly changed. Obviously, I don’t have a spring in my step anymore and I’m not as chirpy, lighthearted and energetic as I was, but my looks have also changed and it was a blow to my ego. I stopped cutting and dyeing my hair and its texture changed — it is dry and fluffy, rather than smooth and shiny. It becomes greasy very quickly. The hair loss on the top and sides of my head makes me feel old and sickly. My eyes are no longer bright; the whites are a dull grey and I’ve lost eyebrows and eyelashes that were already sparse. Last year, I saw an ophthalmologist for the first time with a list of grievances: gritty eyes, dry eyes, vibrating eyes, styes, blurry vision, floaters, difficulty focusing, difficulty reading… It was a long appointment and he did a battery of tests. My vision, remarkably, is still 20/20. I thought, considering I rarely focus beyond my four walls, that it would have deteriorated. But, the health of my eyes was a different story. He told me to hold a warm cloth over my lids for a few minutes every day to open the pores and treat blepharitis and, also, to use preservative-free dry eye drops four times a day (I was very impressed with his “preservative-free” recommendation based on my reactions to drugs. I’m happy to know they exist since I was using Bausch & Lomb eye wash and it would leave red track marks down my cheeks). He also found that my eyes had two different pressures, which he said was not normal and made me a glaucoma suspect. I return next month to have a check-up.

Dilated pupils to see the optic nerve.

Dilated pupils to see the optic nerve.

I went off the birth control pill 16 months ago and, immediately afterwards, my skin began to break out. But this was no normal acne. I’ve dealt with skin issues my whole life, but I was familiar with them and I knew where spots would pop up (chin, nose), why they were there (hormones, smoking, picking), and how long they would last. For the past year, I’ve had acne along my hairline and jawline. My forehead, which was always pristine, became rough and braille-like. This really took a toll on my self-esteem. Even if I could have visitors, I didn’t want anyone to see me. I went from feeling not pretty to feeling downright ugly.

My visit to the dermatologist has given me renewed hope and a plan of attack. She wanted me to take antibiotics, but I refused based on my gut dysbiosis. She wanted to try a drug that is used to lower blood pressure, but also has the side effect of clearing skin, but I can’t because my low BP is a constant challenge. She wanted to use some sulfa Rx, but I’m possibly allergic. So, I have a glycolic acid face wash, a new moisturizer, Finacea in the morning and clindamycin in the evening. It is already making a difference. The braille turned out to be eczema, which I’ve never had in my life, but Desonide cream cleared it up in 4 days. I can’t tell you how nice it is to have my smooth forehead back. I keep petting it (which will probably cause more spots).

New this year is weight loss. I spent my teen years wanting to be tall and thin, worrying about my body, and now I weigh less than I did when I was 15. It’s partly to do with my elimination diet – nuts and oats might have been the bulk of my calories – but I am eating as much as I can every day. I lather on the butter and rely too much on Terra chips for added calories.

I started experiencing what I now know is called gastroparesis. My food sits high in my stomach and doesn’t digest. I want to eat more, but physically can’t. The food I do eat, I don’t think is being absorbed properly because I’m eating more than enough for a 5 foot-nothing, mostly-bedbound lady. Muscle wasting is now more evident. I have chicken legs. One of my greatest wishes would be to bulk up my legs. I never thought I’d say that. I want muscular thighs. I want my calves back. I want to have faith in my strength like I did my whole life. My height never made me feel like I was weaker than anyone else. I tried bench-pressing with my brothers, I was good at arm wrestling, I hoisted kegs of beer around at work and ran up and down stairs with heavy plates and large trays of food and cocktails, held over my head. I was proud of my strength and now feel like every movement might injure me. My chicken legs won’t reliably carry me and my muscles feel taut and brittle.

The good news is digestive enzymes and HCl are helping me to move food on down so I can eat more. I don’t necessarily want to add fat on top of bone, so my goal is to continue to absorb nutrients and increase activity.

Vanity always seems worthless and trivial, but, in the face of chronic illness, it seems almost sinful. Tall? Thin? Nice clothes? Pretty hair? Perfect skin? All I want is strong bones, muscles and cellular energy. Who cares about the rest? Well, I still do, but it’s a work in progress. M.E. holds a mirror up and exposes your bare bones… burns away the affectation and demands you be okay with the foundation and framework, without the superficies and facade. Be okay with the soul, alone. There is a bigger lesson here for me to learn.

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My Funny Valentine

As a Valentine’s Day present to my husband, I decided to get marginally dressed again. I put on a bra and a red dress. Unfortunately, the dress, although clean, hadn’t been worn in a while and it smelled musty, so I switched to a pink sweater (pink and red are really living on the cutting edge of colour for me; they scream: I’m dressed up! I’m making an effort! ~ 90% of my wardrobe is black and grey) and leggings that have pockets and corduroy-type ribbing, so they give the impression that they are more civilised than mere cotton leggings. And I put on my new boots. I won’t take a picture every time I put boots on, I swear, but I never thought there would be a pair of flat boots that I liked and, more importantly, were proportional to my munchkin frame.

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Unfortunately, after two changes of clothes, my battery is almost dead and I’m dizzy and incredibly drained. I woke up feeling okay, excited that I wasn’t feeling evilly ill, but how dare I pull on leggings that take a bit more effort than PJs and bend down to put on boots rather than slip my feet into slippers? It was too much and it’s only 11am. I know I will be wiped out when my husband gets home.

The entire plan was: get dressed, brush hair and maybe put on make-up. Although, all my make-up is 2+ years old and putting it on means holding my arms up in front of my face, which is a lot of energy, and it also means having to take it off. Exhausting. I wracked my brain to think if there was something I could do to surprise him. Cook dinner? No way. Clean the house ~ or even just the sitting room? Nope. Buy a present? Too late to do it online and I wouldn’t know what to get, anyway. And we’re trying to conserve our savings. So, I think my present is going to be yet another card thanking him for saving my life every day (because, make no mistake, I would be in a very different predicament without him) and wearing clothes that kind of fit me.

The funny thing about my husband is, he would never notice what I’m wearing. I could be sitting on the couch in a ball gown and he wouldn’t bat an eye. I kind of love that about him. I certainly never have to feel self-conscious about looking slovenly. He tells me I’m beautiful even on my sickest days. Love is blind.

One of the most distressing symptoms over the last year is hair loss. Never could I have predicted that I would be upset about my hair. I don’t really like hair. I’ve always preferred men with shaved heads and, half the time when I’m talking to people, I’m thinking about how much I want to tuck their hair behind their ears or put their hair in a ponytail. I find it distracting (and kind of gross) that every woman on tv has what I call “hair curtains”. Long waves down the sides of their face that are pulled forward so they have this weird part in the back of their head and no hair down their back.

Hair curtains.

Hair curtains.

Weird back of head.

Weird back of head.

So, what do I care if I have less hair? Well, my hair loss makes me look even more sickly because it is concentrated in the front and on top. You can see my scalp too much and there are clumps of short hairs that are either breaking off or just won’t grow any longer. I was on a Facebook group and someone mentioned that, because she was in the military and constantly wore her hair in a bun, she was going bald on the top of her head, so she cut her hair short. Light bulb! I’ve worn my hair up every day for the last 17 months that I’ve been housebound. So, I’m cutting it short. I’ve had my hair very short before, so it’s not a big deal, but I do have a few concerns: 1) I can’t dye my hair now, so there is a lot of grey. I’m not sure how I’ll like short greying hair. 2) I can’t wash my hair very often and, when it’s dirty, it’s nice to be able to put on a hat and still have the illusion of clean from the long hair coming out below the hat. 3) You can put long hair up in such a way that it gives the illusion of being more “dressed up”. But none of these things will sway me because I have to wear a CPAP! The headgear on a CPAP mask is hell with long hair and is undoubtedly contributing to the hair loss.

My sister’s hair stylist is going to make a house call, bless her heart. I wish I had longer, lovelier hair and I could donate it like Marie did, but I just don’t have the patience to grow it. The point of all this is to say that I guarantee my husband doesn’t even notice when I cut my hair. I have left the house with long blond hair and come back with a dark brown bob and, even when prompted, he couldn’t figure out what was different. When he met me, my hair was very short and fiery red. He’s pretty much seen it all. Luckily, days before I met him he had shaved off his long hippy hair. I sometimes wonder if I would have fallen for him if he had a ponytail. Probably. Love is blind.

Happy Valentine’s Day.

1998

1998

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