When I wake up in the morning, I usually spend a while in bed “gathering my strength”. I cuddle with my dogs and check emails on my phone or just lie there, coming into consciousness. It seems to change the way my day unfolds if I take the time to do this. I also try to have a long, slow morning before appointments: have my tea, my supplements, sit in front of my light box, have breakfast, gear up for a shower… This is all to emphasise yesterday’s difficulty of getting up at 8am and leaving the house at 9am to be at an appointment by 9:40am. I am a different person now that I have ME and, just as I couldn’t crash on somebody’s couch overnight or sit in a car for a road trip, I can’t get up and leave the house in an hour without great difficulty. That sort of morning rush takes a giant toll on my body.
But I had to yesterday. I felt okay getting out of bed and taking a shower and then, after being upright for about 20 minutes, I hit a wall. My heart rate was over 115 bpm and wouldn’t calm down. I was shaking so much, I checked my blood sugar to make sure it hadn’t dropped too low. I sat down for a half hour before getting dressed and my whole body sweat the entire time.
We were going to stop and get my prescriptions on the way to my appointment with my GP since we had left 40 minutes for a 20 minute drive, but we heard on the radio that there had been an accident on the highway and it was wreaking havoc, so we decided to head straight for the clinic. We took the back roads ~ avoided the highway ~ and apparently the rest of the city did, too. Nothing was moving. I called the clinic at 9:30am and told them I might be a little late. I called again at 9:50am and told them we were still sitting in the same spot on the road and now I was already 10 minutes late. They told me to come in anyway ~ everyone was running behind because of the traffic. I called my physical therapist, with whom I had an appointment after my GP at 11am, and asked him if he happened to have any open slots later in the day. He made some phone calls, then called me back and said his 1pm patient will swap with me. Wow, who goes to that sort of trouble? Brilliant.
We got to the clinic finally at 10:10am ~ the 20 minute drive took an hour and 10 minutes ~ and my doctor wouldn’t see me. I was too late. I said, “I can stay here and wait until noon if there is a chance she can fit me in… Isn’t everyone else late, too? … My husband took the day off work… it’s really difficult for me to get here…” I wanted to have a meltdown, but I was too tired. The answer was no; I’d have to reschedule. I even asked, “Does she know it’s me?” as if I’m some spoiled rock star (“Do you know who I AM??”), but I thought she would understand what is involved to get me here and find a way to make it happen. But maybe she doesn’t know how difficult getting to the appointment is… Like I said, I haven’t seen her in 6.5 months and I’ve changed.
It was never clearer just how much I’ve changed than when I was walking back to the car in the disabled lot (ie: not far). The parking lot is on an incline. I’ve been going to this clinic for years and I could have NEVER told you this lot was not flat as a pancake because it never registered before. Because it never needed to. Yesterday, the tarmac reared up in front of me like some CGI ground wave in a movie about an earthquake. My vision tunneled ~ honestly, it was like a Hitchcock camera trick ~ all I saw was black parking lot climbing straight upwards in front of me. I had to stop constantly as I walked to the car. It blew me away. I never could have told you there was any slope there. My muscles, my heart, my lungs… they simply don’t work anymore.
To complicate things further, I called my PT back and said, “Actually, I canmake my 11am appointment now, but your other patient is probably already on his way, but if it’s any hardship at all for him, I can swap back, but no need to call me back, I’ll just come at 1pm…” Mutter mutter… Bashful, embarrassed, crawl-into-a-hole voice…
So my husband and I went home again and I lay perfectly still with my eyes closed, deep breathing my frustration away until 12:40pm when it was time to leave again. I rescheduled the appointment for tomorrow week (for all my American readers, that means a week from tomorrow. I really miss being able to use that shorthand (shortspeak?): “Friday week” is so much less cumbersome than “a week from Friday”).
I also spent another two hours on the phone with my insurance company. Being ill is a full-time job.
Gratitude for the day: Thank you to the FIVE people who texted and messaged to wish me luck at the appointment-that-never-happened. You write a post about an upcoming follow up with your GP, not knowing who will read it, and then, suddenly, a friend that you haven’t seen in a year and a friend in a different country and a parent and a sibling and an online CFS blog buddy all send you notes to say good luck and/or how’d it go? You know who you are: THANK YOU. Every day, every time, it helps.