Driver License Dilemmas

I had to renew my driver license for the first time since being sick and, thankfully, I could do it online. However, when this question came up, I stared at it for a long time:

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I wanted to select yes. I’ve always been an organ donor. I imagined they’d harvest everything in my body and many people’s lives would be enhanced or extended. But, with this illness, I can’t risk it. I won’t give blood and I won’t donate my organs and it kind of breaks my heart. I wouldn’t be able to donate a broken heart, anyway.

But, let it be known, that I want my body donated for ME/CFS research. I’m not sure how to make that happen, but, if anyone knows, please give me details. Worst case, I suppose I can donate for medical research like my mother has organised with University College Dublin.

After the organ donor question, I got this. This one I stared at for a very long time:

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Riding a motorbike was my dream. When I was a teenager, I got a second- or third-hand 50 cc moped which gave me incredible freedom and convenience. The Dublin bus system was unpredictable and I would crank that hair dryer engine all the way up on the dual carriageway to get to classes or get around after the buses stopped running (see previous post about being a nightowl).

During the very first conversation I ever had with my husband, he asked me, “If you could do anything right now, what would you do?” I had been telling him that I’d planned to move back to Dublin that summer, but, because of an upsetting situation, I didn’t know if I could. When he asked me that question, I answered, “Ride a motorbike across the country.” Unbeknownst to me, he was passionate about motorcycles. He hadn’t owned one in a while, but had recently been researching his next bike. I think maybe it was right then that he took a shine to me.

A few years later, I was tipped a brand new motorbike by a regular customer at the restaurant in which I served tables. He had been coming in for months, maybe years and, one day, he and his brothers pulled up on Harley-Davidsons. I got excited and whipped out the postcard of a Low Rider that I’d carried around for years: my goal, but I’d never actually sat on a Harley. Over the subsequent months, he tried to convince me to let him buy me a bike. I told him he was crazy. He told me he was a Microsoft millionaire (I’d never known that) and his wealth came to him like “stepping in shit.” He said it was luck and he had bought four or five motorcycles for his brothers and he wanted to know that he could altruistically buy one for someone who wasn’t a family member. I still told him he was crazy. He said he wanted to do it and I could sell it the next day and he wouldn’t care at all. He sat with my husband for hours and convinced him that he had no ulterior motives. One day he invited me to the Harley dealer and I thought it’d be fun, so I went and discovered I could reach the ground on a Sportster. He asked me what colour I liked and I said, “Black, definitely. Black and chrome is sexy. And a matte black helmet.” But, it was an off-hand question and an off-hand answer. I was just fantasizing. I had no idea what he was going to do that day; I think I couldn’t let myself accept it. While I was browsing, he was signing the papers. I tried to get into the office to stop him, but his brother stood in my way, grabbed my shoulders and said, “You gotta let him do this.” The next thing I knew I owned a brand new 883 Sportster, a helmet, custom-tailored leathers and a year of insurance. I used to stroke that bike, like it was a pet panther.

When I took the motorcycle safety course (which every driver on the road should take, it is so eye-opening), I dropped the bike twice, which should be an instant fail. They passed me, though, because the Honda Nighthawks they used were too tall for my wee legs and I had a perfect test besides keeling over at the stop signs.

I was never comfortable on a motorbike the way my husband was. He would leave for weeks at a time on long-distance trips, driving I-don’t-want-to-know how fast on country switchbacks. I would ride to and from work. Although I drove like a Pole Position speed-demon in a car, I was a granny on my bike. But, oh, I loved that feeling of freedom. One of my favourite memories of my life was driving across the Cascade mountains during the summer. Having taken off my jacket, which is such a no-no, I was just in a tank top and that rush of hot air, the empty road, the mountain scenery and the fear-adrenalin from not having my protective skin… it was like I’d sprouted wings.

But how can I justify $25 to keep the motorcycle endorsement on my driver license? The truth is, even with significant recovery, I will undoubtedly never want to tax my body and brain the way motorcycles do. My muscles were always tense, my hands lost all their blood supply from the vibrations, my brain was never not on high-alert, watching every car in every direction, scanning constantly for hazards in the road, animals, idiot drivers. It was stressful riding in the rain or driving over oil puddles or over grated bridges. I’ve never had an accident in a car, but I have on my bike, injuring my knee in the process. So, of course I will never ride again. It’d be like running up stairs instead of taking the escalator… and M.E. patients, even if they can stand up and walk, take the escalator.

So, I stared at the screen for a long time and, in the end, I kept the endorsement. If for no other reason than to have a beacon of hope for the future.

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With my friend, Z., and my Kawasaki.

 

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.