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:
Aaaahhhhh…. take me away…. 🙂
Rag and Bone Shop of the Heart 
And I quote ‘Milo’s Law: If It Can Go Wrong, It Will Go Wrong’ … (Your related links just suggested it!) I’m sorry that you had such a rotten day, it’s so stressful when things don’t go to plan. Chill, rest and forget about the blood tests. 😀
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Haha! Exactly! It’s just hard to convey the planning that has to go into even the simple things with this illness, always thinking days ahead and trying to manage energy and STILL failing! Thanks for the support. X
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I felt stressed *for* you reading this! What a day. Why doesn’t the Universe recognise how difficult outings are and just let them go to plan – surely it’s not too much to ask. You deserve that relaxing soak 🙂
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Thanks, JAK! I’ve recovered, it’s just such a waste of time, really. I’m looking forward to August and September being calmer and healing (my good health insurance runs out at the end of this month, so I’m trying to cram all these appointments in).
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I’m loving the end to your day. When my head is fuzzy and my body is lead I head for my garden bench. The peacefulness, the stillness and of course the smiling birds… mmm mmm mmm. So glad you have a similar treat when the day is long! x
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Our gardens are our havens, right? I hope we always have these places of peace. X
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That? is truly the day from hell. I would have cracked!!
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Just so ludicrous! Better to stay home and heal. 😉
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I learned my lesson the hard way doing the same as you, trying to plan everything out just perfectly on a schedule to get it all done at once, Let me save you some time and energy: It never works out that way when you have to depend on other people, and doctors appointments always run late. I finally found it was better to space them out and only do one per day, and one per week. I tried scheduling all in one day, didn’t work. I tried scheduleing one in morning, one in late afternoon, didn’ twork. I was exhausted!. I tried scheduling a day apart. Doesn’t work because the next day I am to exhausted from previous day and have to recover. I always overslept and couldnt’ make it. I tried on a Monday and a Thursday or Friday… sometimes that works, sometimes not. I found my best schedule was one per week, late afternoon. Mornings don’t work because I will oversleep and as much as I rush even if I wake early, I get so lightheaded and have to slow down and I still am late and anxious for being late. I have one doctor who is a 45-1hour drive away, I plan nothing else for that day. I go there, she is fairly timely, dont’ have time to finish paperwork before they call my name, that’s fast for a doctors office! When she wants me to do labs, luckily it is on the same floor at the end of the hallway, so I always do them right after my appointment. The drive home is the worst. But I do it because I have to. and then I’m down and out and in bed recovering for a few days to a week sometimes. The doctors who do not have labs in same building, I just go do my labs within 3 days. and even if I have to be fasting, I still don’t go in the morning. I sleep in, let myself wake up whenever I want, and just remember to not eat anything. Many times I’ll arrive at 2 or 3pm and they will ask if I ‘m fasting and I say Yes, I slept in, and did not eat yet, and then I eat after the blood draw. I usually bring a banana or cheese or peanut butter crackers or something with me, and something to drink so that I can eat it right away. I’ve gone without eating and I now get extra lightheaded after having blood drawn, so I have to eat or I will feel so much worse, possibly trigger a vaso vagal episode (which I’m having more episodes again due to the summer heat, even if I’m inside most the time). Don’t schedule appointemens on same day as anybody coming to your house for any repair or the cleaning lady or anything that you need to depend on them being on time, for one, secondly it was extra effort to have to bring the dogs with you. I do admire that you wanted to take advantage of his time off work and get as much done as possible, but your body cannot handle that, too much anxiety watching the clock can wear you out as much as being out all day. Then you spent your needed therapy time for talking about that day rather than the other things you probably need to discuss. Hopefully the therapist gave you some other tips about how you can better plan your appointments. Maybe having him take a full day off work isn’t the answer. Maybe schedule late afternoon, and let him take off a couple hours early from work, or come home on his lunch break and take you to 1 appointment and then go back to work. When I was married, that’s what we did. Or if you can do a morning appointment, then maybe he can take a few hours off in the morning before work. ((((hugs)))) It is a trial and error process for EVERYTHING, when you are sick, EVERYTHING changes.
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You are so right. I always try to schedule too many things in one day so my husband doesn’t have to help me more than once a week. And, even though I don’t sleep much and am always awake by 7am, early doesn’t work for me, either. Thank you so much for understanding and commenting. I guess, even with advice, we all have to figure it out for ourselves. 🙂
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The lifestyle we have no other choice but to live is frustrating and difficult. I rely so much on my family and boyfriend, without their hope who knows what state I’d be in. I’d have a washing up pile for days I know that much!
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I think about that all the time: what if I had no one? What if my family didn’t understand this illness? So happy you have support, too, H-E.
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