Spoon theory, gurgled speech, and more health updates

Okay, it’s been a while. I’ve been attempting to put together this really spectacular London report, about our trip in April, but it hasn’t happened. I’ve had some technical difficulties, and now the Cloud has a bunch of key photos in its clutches and won’t give them back. This means another trip to the Genius Bar, which I can’t fathom when or how I will schedule. Suffice it to say, for now, we had a great trip.

Meanwhile, a huge amount of my time has been Hoovered up by my on-going cardiac rehab for POTS. This has been completely dominating three full days a week, and is like the worst unpaid part-time job ever. It’s not even all that part-time. But I’m now at the point of going out with a whimper, and sort of fledged. I’m about to step up from being the healthiest person at the hospital to the least health person at the regular gym. So include me in your list of grads this June and feel free to send me a present of any kind.

I’ve gotten to know some of the other inmates, although I don’t know their names. There’s Handsome Middle Aged Guy Who Looks Totally Healthy But Who Has Huge Paddle Burns on his Chest. And there’s Old Transplant Guy, who needs yet another new heart and rides his bike like a sleeping sloth. And there’s Cancer and Two Heart Attack Lady, who is often in the treadmill beside mine, very encouraging and chatty, always telling me how great I’m doing. And Amazingly Huge Black Lady in a Wig, who sings along with all the oldies and hates it when I put my feet up on a chair, although I have to because of my circulation issues.

The other day a new young woman came in, who sort of reminded me of me about 25 years ago. She was young, with a long braid, and sort of exotic clothing. I instantly assumed she had POTS and was one of my people. So I approached her and asked what she was in for, sure enough, POTS. She got a tropical disease in India, and although she recovered from that, POTS followed in its wake and she’s been sick as hell for two years. We compared doctors, tests and ordeals for a little while as we waited for our Bps and HRs to be taken. I tried to encourage her with my progress. “Look at me!” I declared. “I’ve graduated from the recumbent bike to the upright bike and now to the treadmill. Pretty soon they’re gonna let me out on parole!” Also, I showed the lovely way I didn’t have to wear all the wires and electrodes anymore, and could just wear a regular-person heart rate monitor! And I got a pretty pink one to go with my purple emergency ID bracelet.

She tried to display an upbeat attitude, I could see, but I could also see how miserable she was to be there. It’s very dreary and depressing, there’s no doubt. Being incarcerated in a windowless TVless medical basement with the very ill is demoralizing, and has to be worse the younger you are. Worse yet is the sense that in fact it’s not a mistake, and you do actually need to be there. I watched her struggle to ride the recumbent bike for 12 horrible minutes at a snail’s pace, and get off all grey and exhausted. I said to myself, “That used to be me. God… that sucked.” Now I’m up to 45 solid minutes, striding along without falling off the treadmill at 3.3 mph and 0% incline. I can get my HR up to 142 and my BP still stays more or less okay. This is really quite close to a normal person type workout! Many average couch dwellers would be happy to have this ability. I guess the twist for me is that this 45 minutes defines my whole day, MWF, indeed trashes it. And I need some crutches– coconut water with tons of salt, support stockings, and many hours empty to recover afterwards.

On Friday, I actually had a migraine headache threatening on the horizon, then called in sick from rehab. Yesterday I didn’t have enough spoons (I’ll explain below) and couldn’t give my whole day to it. Thus, fading away without good closure, the summer has begun and I’m on my own. I think I’m ready to leave the nest, and lord knows I want to. I just wish I could’ve sort of made it official somehow, walked across the stage in my cap and gown, and shaken hands with Laurel, the exercise physiologist who has been managing my case for the past 9 months. Yes, it’s been a full school year for me to complete what was purported to be a six week stint in the joint. Many mishaps along the way, of course. But, whatever. Here I am now.

In my POTS world, people have been circulating these little blue bracelets with spoons on them. Like this:

Blue Awareness Bracelet / Anklet – The Spoon Theory – POTS, Dysautonomia, ARDS, Arthritis, Chronic Fatigue, & More

Blue Awareness Bracelet / Anklet - The Spoon Theory - POTS, Dysautonomia, ARDS, Arthritis, Chronic Fatigue, & More
Blue Awareness Bracelet / Anklet - The Spoon Theory - POTS, Dysautonomia, ARDS, Arthritis, Chronic Fatigue, & MoreBlue Awareness Bracelet / Anklet - The Spoon Theory - POTS, Dysautonomia, ARDS, Arthritis, Chronic Fatigue, & MoreBlue Awareness Bracelet / Anklet - The Spoon Theory - POTS, Dysautonomia, ARDS, Arthritis, Chronic Fatigue, & MoreBlue Awareness Bracelet / Anklet - The Spoon Theory - POTS, Dysautonomia, ARDS, Arthritis, Chronic Fatigue, & MoreBlue Awareness Bracelet / Anklet - The Spoon Theory - POTS, Dysautonomia, ARDS, Arthritis, Chronic Fatigue, & More
With the dangling silver spoons, HOPE ribbon and Cobalt Blue glass heart, this stylish bracelet is great for showing your support for any of the Blue illness/causes.Whether worn for a loved one, self, or just to show awareness; others will know what you stand for.

The 2 mini silver spoon charms represent “The Spoon Theory”. A Fantastic way to explain to people what it’s like to live with a chronic illness on a daily basis.
Everyone could use some extra spoons. :)

So I was all, “What’s the deal with the spoons?” I read up on “spoon theory.” (You can read it here.) Basically it’s a way to convey the experience of living with chronic illness to those who do not have it. You have a limited amount of energy or resources for any given day, and so you have to choose wisely. For an example, this woman with Lupus was trying to explain her life to a friend in a cafe. She grabbed a handful of spoons and went through her day, explaining how it cost a “spoon” for each thing she needed to do. There were 12 spoons to start, and the friend at first thought she could just use a spoon for going to work, for instance. But no– it takes a spoon to get out a bed, a spoon to take a shower, a spoon to get dressed, a spoon to make breakfast, a spoon to get to work. So now the work day has just started and already half the spoons are gone. You get the idea. I ordered one of the bracelets, and told Ben about it. He very kindly understood and said, “I’ll get dinner tonight– that will save you one spoon at least.”
So I’ve been thinking about spoons. How many do I have, and how many does each thing take? If we start with 12 per day, I can see how they would run out very quickly. A spoon to get the kids dressed, another to make their lunches and feed them breakfast, one to get myself dressed, one to take them to school. So that’s five by 9:00 a.m. If it’s a cardiac rehab day- how many spoons is that? I have to drive all the way to Cleveland (one spoon), park and walk in from the parking area (one spoon), do the rehab itself (four spoons!!!), drive home (one spoon) and manage to get food and drink into my body before I collapse (one spoon). THAT’S EIGHT FUCKING SPOONS!! No wonder it totally ruins my day. (I’m so glad it’s done!)
Okay, so the scary thing was that I had a few episodes of garbled speech. Like… nonsense. Like I was trying to say to Isaac, “You goofus” and instead I said, “GOOFAHKAH!” Which sounded somewhat like a swear word and made both boys roll on the floor with hilarity. But I was.. a little concerned. One of my medical advisors has expressed a great deal of worry about my stroke risk, and of course I thought I was probably having a stroke. I even did the little stroke test (smile in the mirror, lift your arms evenly, etc.) and found I was okay. Then it happened a few other times, mostly when I was fully out of spoons and in that beyond-tired state where words are just too hard. I confessed to Ben and he was not at all worried, I mean totally poo-pooed me actually. Then I was trying to read to the kids one night and got latched on to the word “research” which I just could not say for the life of me. It was all, “seeerleche” and that sort of thing. I mean, I routinely mix up the names of my kids or pets or household objects, but I think this is within normalcy. I may refer to Elias as the “Whatever your name is– the short one–” or something like that. But this just total nonsense had me sort of worried.
Of course I was loath to reveal this to any medical professional because they are so prone to freaking out, and I didn’t- DID NOT– want another MRI, with or without contrast, nor a CT_scan, nor any blood work. I just didn’t want to go there at all. (Meanwhile, a dear friend has had an actual brain tumor, that started with garbled speech, and this was on my mind too). So finally I broke down and confessed the whole thing to my exercise physiologist and she, right on cue, freaked out. I was walking on the treadmill at the time, and began crying and hyperventilating and it was all quite a mess. So she insisted that I call all sorts of people that very day and tell them, especially my neurologist.
I complied, if only because I would get in trouble if I didn’t. I told the secretary that I had been having incidents of garbled speech and it was new for me and I was concerned. I think they were concerned too, because a nurse called me back pretty much instantly. But the stupid secretary lady had written down that I had “gurgled” speech, not garbled. THe nurse was all, “I understand you’re having gurgled speech???!!” And I was all, “Noooo, not gurgled, GARBLED!” But the fact that I was calling with this particular complaint cast aspersions on my credibility. Anyway, the neuro was not all that concerned. He said it was probably just migraine acting up in a new bizarre way. We set an appt a ways out and now I’m okay with it.
Meanwhile, I’ve been having on-going lady-business issues that I can summarize as blood-cutting-procedures-medication-blood-procedures-cutting. I do wish that God would order a recall or something because this is not working and I know I’m not the only one!
On the good side, I’ve been teaching creative writing to 4-8th graders one day a week. Last Thursday I used up all my spoons for that day and the next (hence, none left for rehab on Friday) putting together our beautiful school literary magazine. It’s coming from the printers this week and I can’t wait! So there’s something non-POTS and non-medical to relate. Also the boys are both doing great, although Isaac’s addicted to Xbox despite his timer, and seems to be the only 10-year-old around who is not allowed to play violent, profanity-laced M-Mature-rated games. He thinks we’re ruining his life pretty much by limiting these things. Elias is fabulous and just played “Simple Gifts” at a piano recital to widespread critical acclaim.
Vassar 25th reunion this weekend! Happy Summer!

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One Response to Spoon theory, gurgled speech, and more health updates

  1. Uncle John says:

    It does indeed sound like the world’s worst unpaid part-time job. But you’re doing it. Congratulations on getting the literary mag to the printers, and on restraining Isaac’s involvement with the X-box. Hang in, hang in.

    Love, Uncle John

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