Another Day In The Life

This illness takes away every bit of independence and control. My day today was ludicrous and stressful. In my mind, it is filmed in high-speed to the Benny Hill Show music.

I made three back-to-back appointments (ophthalmologist, therapy and blood draw), which is obviously foolhardy, but, if my husband is going to come home to ferry me around, I want to maximise the time. However, I didn’t want the day to be longer than it needed to be because it takes such a toll on me, so I tried to schedule the appointments as close together as possible. The ophthalmologist’s office assured me 3 separate times (because I rescheduled 3 times and asked each time) that a 2:20pm appointment would have me out by 3pm because the doctor is exceedingly timely and expeditious. I google mapped the distances between clinics and called LabCorp to ask about parking and the name of the building and what floor they were on so I was completely prepared and wouldn’t be wasting time wandering.

But, first on the schedule this morning, our cleaning lady (a luxury we obviously can’t afford, but we decided we needed once in a while to alleviate the burden on my husband) was meant to arrive at 9am. That’s very early for me, so I had scheduled the day yesterday to do nothing but organise the house in short bursts (because you actually have to tidy the house for the cleaning lady): putting away clothes and paperwork, moving blankets, yoga mats and dog beds etc. with rests in between. It takes an extraordinary amount of energy for me to do this, mainly because it involves walking things from one room to the next and up and down stairs.

Our cleaning lady is scared of the dogs, so I locked them in my bedroom with me this morning and listened to them whine to get out for an hour and a half before I texted her. I got no answer until noon, when she said she would be here at 1:30pm. She wasn’t. And my husband wasn’t home by 2 to take me to my appointments, so I stood by the door, having eaten, showered, dressed and meditated, holding my handbag, unsure of what to do. He arrived shortly after, not too late, just late enough that I was anxious. We got the dogs’ leashes on (because we had to take them with us because we couldn’t leave them home with the cleaning lady) and I hid the key for her so she could get in while we were gone.

We drove like a bat out of hell, but traffic was worse than normal. Not terrible, just bad enough to make me anxious. I got there on time, but I was still sitting in the waiting room 35 minutes later, so I had to reschedule. They said I could come back after therapy at 4pm, but the blood draw was at 4:15, so I had to reschedule that, too– to 5pm, their latest slot.

On the short drive to the therapist’s office, I was starving, as usual, so I quickly ate an apple and a bunch of plantain chips. Then I had to stand in line at reception for a full 10 minutes (exhausting) and then sat in the waiting room for another 10 minutes, wishing I had taken my time eating rather than inhaling without chewing. By the time my therapist came to get me, it was 3:15pm — not too late, just late enough to make me anxious about the appointment going over time and thus causing me to be late for my rescheduled ophthalmology visit.

I was close to tears from watching the time tick by, the stress of the day, rushing around, not being able to drive myself, being let down by cleaning lady, husband, receptionist, late doctor #1 and #2, having to schedule these appointments in the first place, having to schedule them close together because I can’t handle long outings, having to reschedule 2 out of 3 of them, trusting the ophthalmologist clinic that said 40 minutes would be enough time when I know better… so, I spent 3/4 of my therapy session ranting about the day and how frustrating it is to have no independence… and then ranting about how the day’s events were impinging on my precious therapy time! I have shrinking to do, dammit.

Of course, therapy ran late, so we drove like a bat out of hell again to the ophthalmologist, got there at 4:10 aaannnd… at 4:50pm, I was still waiting in the waiting room. Of course. So I had to call the lab and completely cancel the blood draw. What a farce!

The good news is, the different pressures in my eyes seem to have resolved, so I’m no longer considered a glaucoma suspect. The doctor wants me to try Restasis for the next 6+ months, plus steroid eye drops to address the ongoing dry eye/blepharitis/lid muscle spasms/styes/grittiness/goopiness/floaters/blury vision. Yay, more prescriptions and protocols!

Through all of this, my long-suffering husband and dogs waited in the car, but, the other good news is, he took them to the park while I was in therapy and we got to come home to a beautiful, clean home.

And then I got to do this:

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Aaaahhhhh…. take me away…. 🙂

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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.