Tag Archives: ehlers danlos

Dizzying

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I’ve had several break-throughs this past week or so, and it’s almost like I fell into a rabbit hole and came out a different version of myself.

  1. I realized that in response to the structure of my family, I chose, at the age of six, to be the person who would be perfect, and who would make everything okay for everyone. Did you make a decision that hurt my feelings? I won’t tell you, it would make you uncomfortable, it’s okay. Do you have inadequate social skills and monopolize conversations? It’s okay, I will suffer through rather than call you on it. There are a million examples, and I’m in the process of setting myself free. It’s scary but also liberating when say, I’m on the phone with my MIL and she is detailing the various possible locations of the dining table in RVs and I think, “It is not my problem that you are inept at conversation.” OMG IT’S NOT MY PROBLEM. I interrupt the moment she takes a breath, tell her the things that I think are news on our end, tell her that we are thinking of her and that breakfast is ready so I must go. I’m not, ever again, sitting down to a cold meal because someone wanted to tell me how the weather has been everyday this month.
  2. I read this post and saw myself therein. I need to pace myself on a long term basis. This means that my activity level should not spike and bottom out, but remain more constant. I can’t push myself to the edge anymore. At least as much as it is possible–working in theater this over-activity business is kind of “how we do things ’round here.” This is difficult, because it means letting go of the “maybe that was the last flare up” mindset. This is a permanent condition. So easy to write, yet so very difficult to accept.

A result of examining both my people-pleasing at the expense of my own happiness and my tendency to over-activity–both of which are things that hurt rather than help–I did something really out of character. I had a thought, “It would be so cool if I could afford to have an assistant in my studio, even a few hours a week, to do some of the stuff I can’t do, but also stuff I don’t want to do because it takes away from the number of spoons I have to do the things only I can do.” This was followed by the realization that having done away with massage, I am saving nearly $400 a month. I CAN afford to hire an assistant, at $10 an hour, for four or five hours a week. So, I did.

I’m panicking a little now, because this is tremendously new territory for me. My assistant starts Friday, and my goal yesterday was to start a list of what she can do for me. I choked, man. I sat in my messy, chaotic studio and couldn’t figure out what to have her do–because, as I told her when I interviewed her, I am not entirely sure what this will look like. It’s hard to give up control of my creative space in any way, and hard to direct an able-bodied person to do things for me. She completely understood that, and now I am trying to fully understand that, and figure out a list of things for Friday. It’s much harder than it seems, because there’s a lot going on underneath the surface in terms of my own acceptance of my condition and limitations.

I am sure I will make it through, I am sure I am doing the right thing for myself and I know it’s okay to feel like I’m embarking on a trip with no itinerary. We’ll get to the destination we need to get to–we won’t be left floating about the ocean with no sail. Fingers crossed.

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Where Have I Been? Nowhere, Just Here.

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Broken Ankle Update:

No invasive surgery required. Instead, they did a “closed reduction,” meaning they knocked the child out with general and manipulated the bones into place (note: you must be very strong to be an orthopedic surgeon) and put him in a long cast. The “long cast” goes above the knee so that he can’t move the tibia at all. It sucks in terms of mobility since he can’t bend his knee. That cast stays on for three weeks, then a short cast for four weeks, then a boot, then physical therapy.

Vacation Update:

See above. No vacation.

Art Update:

I have decided to pitch an adult coloring book to a publisher, so I’m working like crazy on that and forcing out all insecure thoughts. If I can’t get published that way, I will self-publish. I think I am onto something here, and it’s an exciting prospect.

Sewing Update:

Still sewing, but nothing too interesting right now. I need a good camera so I can actually take professional looking photos of my work instead of crappy photos on my phone or iPad.

EDS Update:

Christ on a cracker, it sucks.

1. Massage has stopped helping. I’ve been trying to avoid voicing this reality, since it means I no longer have anything for managing pain. That’s a really unpleasant place to find oneself. But, for $95 a week I should be feeling relief for at least a few days afterward, and I’m not. Sometimes I feel worse. I have to figure out how to man up and tell my therapist this, since I like her a lot and it’s not her fault but I do have to stop throwing money away.

2. About two weeks ago my left thumb chose to lose about 30% of my pinch and grasp ability. I can’t lift anything of weight (like a plate of dinner) with either hand if the weight is mostly to go to my thumb. I feel like I have silly paddle hands as I try to work around this, and it’s painful. I can’t have my CMC joints fused unless I am ready to quit my job and possibly lose the dexterity I need to sew and draw. Which is sort of the same as saying I have to give up oxygen. So I’m stuck.

3. My shoulders are worse again, and I cannot under any circumstances sleep on my right side. I wake up around 2:00 am every morning because I am in pain, and it can take up to two hours to get back to sleep. Sometimes I can be sitting at the table talking to someone and a third of my brain is occupied with how much it hurts to just deal with the weight of my shoulders hanging off my neck.

4. My back is verily fucked up and hurts all the time. I have two degenerated discs in the lower back (L4 and L5) and what I probably really need is to get a chiropractic adjustment. But, that is problematic for EDS, and so I have mostly given up on it at this point. My last stab at that was my PCP putting my upper rib back in place and it popped right the hell back out within hours, so that was a wash.

5. 80% of the time, or more, I can deal with my level of daily pain. Sometimes, though, it just seems like it is far more than a person should be asked to deal with, and I have a day or days of feeling really angry and frustrated and sad about being in pain every single damn day. Which is why it’s hard to give up massage. This weekend is one of those points where I’ve had it with my body and my discomfort and there’s going to be a pity party. Which is not a party I can even enjoy.

Overall Update:

Ugh, except for art, which is good.

A Cloudy Morning

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One of my chief pleasures in the summer is listening to (and watching) the endless hummingbird war over the feeder. This morning it is cloudy and raining, so the windows are open and I can hear all the little Jetsons sounds they make as they chase each other away from a feeder that contains enough food to support the entire backyard colony. Yet, it’s not good if there’s enough—I guess hummingbirds are capitalists at heart.

Lately I get up and check my blood pressure, my husband brings me coffee (we have a running joke/dialogue around that:he says, “I brought you something” and I say “AND some coffee?” and he says “Careful, it’s hot.” and I say, “So’s the coffee.” this is the secret to marriage—regular, prescribed dialogue. Or someone to bring you coffee, idk which) and I start soaking two tablespoons of chia seeds in either water or, this week, dark chocolate cashew milk. I am struggling with the Propanolol; even though the dose is very low, I think it is causing some shortness of breath (it’s known to aggravate asthma) and, I suspect, greater heart irregularities. Also, they aren’t kidding about it making dreams weird. I’ve had nightmares and long, strange dreams that are very intense.

On the flip side, it seems to prime my sleep switch without making me drowsy; it’s like I just go to sleep like a normal person might. I faintly remember the days of simply lying down to go to sleep, and it’s like a fairy tale. More often than not, I wake in the morning to a still full glass of wine (which I then return through a funnel to the bottle, yes I am cheap), which is a congratulatory event instead of my usual initial thoughts of guilt and self-loathing. It’s different….

I’m trying to be good about taking vitamins, so once I eat the slightly jelly, faintly gritty chia seed/cashew milk potion, I take eye vitamins, vitamin D, two Glucosamin Chondrotin and a probiotic. This chia seed business has resulted in the closest thing to normal gut function I’ve had in, oh, years. Gritty or not, slimy or not, I’m committed. The cashew milk will not have a second shot at breakfast, though, because it’s fairly gross–when this carton is gone, we will say goodbye. Too thin to be milk, too thick to be juice….no me gusta.

Last 4th of July weekend I was crashing off of Xanax, plunging into serotonin syndrome with Cymbalta, and texting my PCP as I clenched my teeth, cried, and couldn’t sit still. This year I’m just a little short of breath and floaty feeling, along with odd heart rhythms. This, then, is an improvement. Clearly my orthostatic/autonomic disorders are affected by hot weather. Hence my happiness about the rain, even though it may kill the whole fireworks option. The red and white fireworks tent in the field behind our house charms me with its circus implications during the day and annoys us with its intrusive lighting at night.

Yesterday’s drawing:

07 02 2015

It’s whimsical. The child criticized it, “What’s with her feet? Is she an amputee? Wait, why are you mad?” I pointed out, testily, that the whole point of this daily drawing exercise is to suspend judgement–mine or other people’s. Or, maybe it’s about at least being tough enough to resist the needling of a 13 year old. There’s the challenge.

It Was Bound To Happen

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I’ve been free of prescription meds (with the exception of my asthma inhaler) since last summer’s drug debacles. I’ve not been in physical therapy, I’ve not seen my former rheumatologist, I’ve not seen my PCP for anything EDS-related except to get a referral to a doc in another city (who can’t see me until September and who might not take my insurance, anyway). I’ve stuck with the Shrink and massage and wine.

My shoulder pain, by yesterday, had gotten to where I felt short of breath. Yesterday morning, as I sat at the table drinking my coffee and wasting my life online, everything went black. I had a second before my face would’ve hit the keyboard to take a really deep breath, and the mist gradually cleared. This has happened once or twice before, but usually with warning. My heart will suddenly flop, or whomp against my chest, and I know to take a really deep breath. It’s never been that it was suddenly lights out, no warning.

I checked my blood pressure and pulse and they were both high. I worried that I was having a heart attack, or that my lung had collapsed, etc. I called my mother to consult (I am the best unlicensed physician you ever met, but self-diagnosis requires a consult with the second-best unlicensed physician). She agreed that I needed to call my PCP. Also, she said, I shouldn’t drive myself to the appointment.

I called the office and the assistant gave me a 2:00 pm appointment. I texted my PCP. As an aside, let me note that I loathe my PCP’s office, which is crappy. I find his staff generally unprofessional, inefficient and sometimes stupid. He is in a practice with his father, so his mother is the office manager and my, that was a bad idea. There is even less than the standard of zero confidentiality that exists in this town. I stay with them only because my PCP is really smart and good at what he does, and because we are friends and I can text him.

I texted the details to him and he replied: two options, a) see (asshole cardiologist) or b) I’ll do an ekg in the office. I picked the EKG. My husband took the afternoon off to drive me to the appointment. The EKG was normal enough. The symptoms (including a migraine-esque headache) were all clearly of the autonomic/P.O.T.S. variety. We have already tried the benzodiazapines, the SSRIs with no success. That leaves beta blockers, so I now get to take Propanolol. He gave me a tiny dose–10 mg twice a day. I suppressed my standard objections–they’ll make me tired (he had predicted that and suggested this was least likely to drag me out), I don’t want to take medicine (then don’t go to the doctor), etc.

He felt my shoulder/neck pain was coincidental. The other reason I stay with him is that he’s a nurse practitioner and a chiropractor. He said that people don’t realize that we have ribs going all the way up the spine, and he felt that one or two of mine were out of place. He adjusted my neck and shifted the rib back in place. It may have been subluxed by massage, but who knows?

This morning I am worrying about taking a new drug and what it might do to the delicate balance that is my gut, and frustrated because my shoulder still hurts. I’m back on the medical merry-go-round, and while I know this past year was borrowed time, I’m unhappy about having to get back on that ride.

It’s Always Something

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When I started massage therapy last year, it was miraculous. All summer I had complained to any provider who would listen (or couldn’t help hearing me even if they weren’t really listening) about my shoulders. My rock hard, painful, clicking, popping, crunchy shoulders that felt like they wanted to tear themselves away from my neck altogether. After a couple of weeks of once-a-week, hour-long massage, I realized–my shoulders didn’t hurt anymore. I was converted, and made clear to all concerned (family, work, friends) that on Fridays at 11:00 am I have a massage, and nothing; not tech week, not socializing, not anything, was to get in the way of that.

About two or three months ago, my mother offered to pay the difference for ten 90-minute sessions. When I completed the tenth, I knew there was no going back, so now I have a weekly 90-minute massage that sets me back $95 per visit. But if it helps, then, it’s completely worth it. Right now, that’s the problem. Lately it doesn’t help, or if it does help its for a day or two, but doesn’t carry me through the week.

On Friday I went, as usual. My shoulders were lousy. She had trouble getting them relaxed enough to even work on them. It’s funny, too, that when my body is resisting it’s framed in terms of me not letting go enough. I wondered if maybe it’s not “me” per se, but that my body is so jacked up it can’t release itself (what? Not my fault? Not because I am just not good at this? Whatchu talkin’ ’bout, Willis?). We did a couple different things.

Friday night was opening night of Chicago, the celebratory presentation of our collaborative effort to make theatrical art. That meant that Saturday? Saturday was the beginning of my actual summer break. I got up yesterday with so much pain in my left shoulder/neck that I couldn’t look over that shoulder, I couldn’t not think about the pain, I could hardly interact with any success because the pain alarm system was just jangling away, louder than anything else. I was driving to take Ibuprofen, I took a warm shower, I laid on the heating pad, I iced it, I heated it, I took a hot bath with epsom salts. I sat outside under the misters and drank two hard ciders mid-afternoon, I took a short nap, I rubbed in that rip-off Blue Emu shit I bought (oh, we the chronic pain types, we can be parted from our money so many different ways).

I endeavored to distract myself all day. I tried as hard as I could to not berate myself or engage in internal whining about losing this First Day, I tried to deal with now, not, “What if now that I’m off I feel like shit for the WHOLE SUMMER?” etc. I would say I was 75-80% successful. I resisted the desire to tell my shoulder, “Fuck you, I’m going to sew/draw/work anyway!”

This morning? My left shoulder is much, much better–down to its normal 2-3 pain level. Ready for the kicker?

My right shoulder is extremely unhappy–from the base of my skull to my arm to my rib cage. Like a 5 or 6 level pain.

I was willing to give it one day. I can hardly cope with the idea of giving it another one. In a minute I’ll consume my chia seed breakfast (which has restored almost normal function to my gut, so there’s that….), take more Ibuprofen (and pray that doesn’t lead to a night of Gnawing Stomach), take a hot shower, put on the rip-off snake  emu oil bullshit, and see if I get to have any of the things I wanted for this day.

Then I have to decide; go back to massage? Call it quits? It’s hard to let go of something that I perceive as being The Only Thing That Helps. Even if right now, it isn’t. Because then I’m back to There’s Nothing That Helps.

Not my favorite place to be.

The Whole Kettle of Fish: A Study in Emotional Exhaustion

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We have returned from a trip to the Chicago-land area to visit the in-laws. As it always ends up, it was challenging.

The Thursday before we were to leave, I took  a very old, very sick dog to the vet for the last time. I had been up all night with him, setting me up for going on “vacation” (and I use the term very loosely) exhausted. It’s never easy to decide to euthanize a dog, and I don’t judge others whom I know love their pets dearly, as do I. We do the best we can.

I had only just returned from the vet, and the child and I were weeping in the hallway (without hugging, since I had dog poop all over me) when my doorbell started ringing over and over again. A peek outside confirmed it was someone with whom I want no contact, and from whom I fear violence. Unlike a normal person, this one chose to ring the bell over and over and over again, pound on the door, ring the bell, etc, for around 15 minutes. The child and I retreated to the back of the house and called the police. They just missed our unwelcome guest, but will now be watching for her. I was so stressed that the responding officer took both my violently shaking hands in his and said, “I can tell you are really frightened. Take a deep breath.”

——

The next day should have been for resting and packing, but I had bought tickets to see Wicked in a nearby city for that night, the night before we would leave for Chicago. We went, but I couldn’t enjoy it as much as I’d have liked–I was too caught up in feeling like I wronged the dog, angry with the unwelcome visitor (who should know better), worried about packing and, oh, the fact that I find flying terrifying. I found that at each musical number, I was beset with an almost overwhelming urge to ugly-cry. We got home late, got up the next day, packed, and headed back to that same city’s airport to fly out.

We were fine from El Paso to Austin, where we circled and circled and due to storms were diverted to Dallas. We sat on the ground in Dallas for three hours, while our flight to Chicago left without us. We flew back to Austin. I had quickly booked a hotel online while we lingered on the tarmac, paying an outrageous sum of $200 for a near-to-the-airport La Quinta. By the time we arrived in Austin (Trapped in Texas, Chapter 1), the airport was all but shut down. They booked us on a morning flight that would go through Dallas once again.

La Quinta refused to accept our distressed passenger voucher because they are total dicks and I hope they are someday financially ruined. We stayed in a room with a shower so gross none of us were willing to use it. The bathroom door wasn’t a door, per se, but two cabinet type doors with shuttered vents (like closet doors) that couldn’t be locked and the knob fell off. The hotel was full to the brim of loud, shouting, running people all night. I had not packed any wine, so I spent the night dozing and hallucinating to the tune of six Benadryl, while also berating myself for my needs.

We made it from Dallas to Chicago, and went directly to the Huge Family Gathering that the in-laws had scheduled so we could “see everyone.” It was raining. They did not, therefore, move the party into their house, they moved it into their filthy garage, next to the truck they for whatever reason did not see fit to move to better accommodate their guests. The first thing my FIL said to my husband was not, “How are you?” or “You must be exhausted.” It was, patting stomach, “Getting a little bigger, huh?”

My MIL informed me in whispers that she hadn’t told my husband but she had developed a serious spinal condition (Spinal Stenosis) and had been unable to walk and might need surgery. This is par for the course. My FIL explained to me and the child that the reason it was raining here but California had a drought was because “the liberals” got rid of the smog, which used to hold the rain in California. The child is 13 and he was baffled by this amazing, magical bullshit. We met cousins with whom we had nothing in common. We talked to other people about themselves and no one asked me much about me (also par for the course). Oh, except for when my FIL told my husband’s cousin that she should have me make her wedding dress, and also that I make, “Crazy weird costumes with funny legs and stuff.”

Oh yes, I know that this is what the FIL considers “praising” but I am far too evolved to accept that being passive aggressive is anything other than what it is. Which makes it hard for me with them, since I won’t play pretend.

The evening goes on and on and on until I finally say, “I am too tired. I must go to bed.” Then I am stranded in the filthy, moldy basement because not only are there stairs, said stairs have a pretend railing that threatens to fall off should one use it. My husband realizes this belatedly.

There are stairs at my BIL’s house, which means I must carefully plan my ups and downs. There is also an atmosphere of suppressed rage that I am especially attuned to, and which my spouse can’t notice. It takes us forever to get our shit together the next day, sitting in the ‘burbs in the rain, and we finally meet up at a Dave and Busters. I drink. I can’t help but simply order two drinks per encounter with the parents-in-law. The child balks initially (look at all those KIDS, he says, in disgust) but then has fun. Then we all retire to the BIL’s to sit and stare at each other.

The BIL disappears to the basement to play video games with the child. The MIL asks how my hands are (it has been two years since diagnosis, they still can’t stick with a conversation long enough to find out what I have). I say they aren’t very good. I mention that since it’s genetic, I have to just try to pace myself. My FIL asks me if changing my diet would help. I say, very evenly, that this is a GENETIC disorder, meaning my GENES are flawed, and the GENE that is flawed is present in 90% of the body’s structures, so NO, it’s not an issue of changing my diet. He falls back to his climate change theory and then they spend 45 minutes giving us an intimate blow-by-blow of my MIL’s recent, very scary MRSA infection. The MIL can hardly tell her own story because the FIL is trying to talk over her. My silly story is left far behind.I go to bed at 8:00 pm, alone, which is how it always works there.

Everything we eat is gluten. I give up and accept that I will just take immodium every day and gain five pounds.

Day three it rains. The BIL takes the child to the movies and the husband and I go to a nearby suburb’s charming downtown, have an expensive lunch and a bottle of wine, wander about, then collect them. We later meet the in-laws for dinner at an Italian restaurant they like. I stick my FIL with buying my dinner and two glasses of wine. My MIL mentions that we aren’t staying for very long. I resist mentioning that it feels like a life sentence. We planned four full days–not our fault one was lost to travel, but that one still would’ve been spent sitting in their goddamned garage. I mention that guests, like fish, begin to smell after three days. She agrees gaily, entirely missing the point, which is that we are staying four and when they come out to see us, they never stay less than an entire week.

Day four we go into the city. The in-laws refuse to go with us, but resent that we aren’t, I guess, sitting in their living room. We take the train, and are planning to take a boat tour of downtown architecture. The BIL leads us on a forced march that despite claims of, “We’re almost there” is far, far too long and too fast and too many stairs for me. My husband weakly mentions maybe a cab but is overruled by the BIL.

I should have stopped. I should have insisted on a cab. I relied on my spouse who cannot function or be decisive around his family. So it’s my own fault that every step I go up now, my left knee snaps and then grinds.

The boat tour was fun. Then we faced another forced march through the city, where we couldn’t find anywhere to eat, where the husband couldn’t make a decision, and there were words in the business district. I was hangry, exhausted physically and emotionally, and as usual, he didn’t have my back.

Upon returning we declined meeting the inlaws for dinner, and I went to bed. Alone. Early.

We met the inlaws the next day for breakfast before our flight. They, predictably, chose a place that could be called “Breakfast in Anywhere, USA”. They aren’t gourmets. Any anecdote I related about things that interest me was met with a complete lack of understanding, being talked over by my FIL with his penguin laugh, or silence.

Soon, the husband and I will have a little post-mortem, and I will explain that this trip we just finished? It’s the last one I’m taking to Chicago.

Someone’s got to have my back, because it hurts right now, along with my hips, my knees, my ankles and my calves.

Jumbled Thoughts and a Jeep

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Endless analysis isn’t healthy, yet my brain loops happily long after it’s productive.

My spouse wants to buy a WWII-era Willys Jeep. I am angry about the Jeep. I could spend hours trying to figure out why. But I would still be angry.

So, I’m angry. I feel like I’ve been set up to be the person who is no fun. I feel jealous. I feel left behind. I feel set aside, unnoticed, left out. I feel afraid.

Afraid of a Jeep? Yes, apparently I am. I have listened to things like “stiff suspension” and “bouncing around the goat trails” and “fun” and I know those first two mean that the last isn’t happening for me. It is something he will do without me; and not because I don’t want to (which is the position I am outwardly holding) but because I don’t think I can, which is the part where I feel like crying instead of feeling angry and hateful.

I feel left behind. The next thought that seems to follow that is that I feel that way about our upcoming visit to see his parents in Chicago (the Chicago suburbs, I add, hastily, having learned there is a VAST difference—learned because “my parents live in Chicago and have a pool” conjured an entirely different scene than “they live in a suburb in a smelly house with a crappy above ground pool full of goose shit.”). We stay with his brother, who has stairs. I am deeply worried about the stairs, and also feeling exposed and vulnerable and on my own–which is how those visits ALWAYS feel to me, and that was before I was so affected by EDS.

That’s it, really. I feel alone, and like I am being left behind, and like I am not worth the trouble. I cannot sit in one position on the couch for very long without something starting to hurt; I won’t do well being bounced around in a Jeep. It’s like when we talk about how much we think the child would like snowboarding and I wonder what would I be doing? Sitting alone in a hotel room?

Before my Grama died my mother and I took her to California for a niece’s wedding. We went out shopping and Grama said she would be perfectly happy sitting in her hotel room while we did that and I still feel like crying when I think about that and how much I don’t want to be left behind. I don’t want to miss out. I don’t want to be excluded, or cast as no fun, or the problem.

The Jeep makes me feel like I am. The stairs make me feel like I am. Right now, my spouse makes me feel alone. Not out of spite, but out of not being in my shoes.

They say that ultimately, we are all alone.Pity it makes us so uncomfortable.

Oh, Yes, *More* Would Be Lovely

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I’m sick. At the almost worst possible time to be sick, I am felled with snot, buzzing nose, ringing ears, cough and fever. I have from now (almost 11:00 am on Friday) until Sunday at about 5:00 pm to get vastly better in time for the first dress rehearsal of 12th Night. I went in today ONLY because I had a student who said she would be in at 9:00 am to work on her build for this show, and my coworker wasn’t going to be in until 11:00. You know how it is, when you are sick, and every step is measured and harder and exhausting? Get up, take a shower, put on the makeup, get dressed, get in the car, go to work. Then, said student didn’t waltz in until just after 10:00 am, when my coworker (knowing I was sick) arrived early. So, there was no reason for me to go in at all. Twenty-year olds and their self-centeredness, I swear. I was offered no apology, either.

So I have dragged myself home. Having EDS and chronic pain and all the related things makes it that much harder to tolerate anything else going wrong. Of course people get sick, but my reserve for such events feels dangerously low already. Something alarming is threatened in my personal life as well, which has taken the stress level to Defcon 11 plus infinity. The personal life thing will likely resolve and go the way of many similar flare ups that seemed really huge and then died out, but again, how much reserve do I have? Daily chronic pain chips away at my reserves until I cannot afford to think anything beyond, “What do I need to do NOW to feel better?” And so, in the face of a bad cold or something that might happen in the future, I have to rededicate myself to just the Now.

Right Now, the possible bad thing hasn’t happened.

Right Now, I do not have to go to dress rehearsal.

Right Now, I am caught up at work.

Right Now, I am hungry and need lunch.

That’s it. Pretty simple. The hardest things are always the simplest.

Should vs. Is

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How something “should” be contrasts wildly with how it “is.”

This is a central struggle in terms of acceptance and also action. I have to accept how things are, which means I must let go of how I think they should be. Also, though–until I accept how things are, I can’t take action to potentially make things more the way I would like for them to be. My path right now is to seek the middle; the narrow tight rope where I can balance between the extremes; in this case, the extremes of Should and Is/Are.

The Should:

should be able to come home from work, change into comfortable clothes, and then work in my studio for a few hours. I should be able to make at least a little bit of progress on my own work each day, even if I went to my day job that day. The reality, the is/are is that I come home from work, sit exhausted at my computer for up to an hour, then make dinner, start drinking wine, and go to bed in pain and worn out.

I really want the Should. That is what I feel I deserve and what I feel I want and what I feel I must have. I. Must. Have. As long as I cling to that, as long as I draw a line in the sand and tearfully, furiously demand it, the current Is/Are is where I will remain trapped. As long as I am trapped in the Is/Are, the angrier I will be that I can’t have the Should. 

It seems so easy, right? Ease up on the Should. Don’t let it go and free fall into the current Is/Are, but stop being so rigid about it. Explore the myriad of (stupid, not what I want, irritating, lesser) options that exist given the facts.

Fact: I get home from work progressively more exhausted as the week wears on. So, if the rest of the weekdays were playing cards, I can turn the Thursday card face down right now–there is no way I will have the energy to work creatively on Thursday. Often, I don’t have the energy to so much as fix more of a dinner than something frozen I can put in the oven and collect when the timer instructs me to do so. Thursday’s child with EDS, then, is not going to sew or draw.

Looking at Monday, though, there is a chance that most or much or often I *will* have the energy to spend a little time on my own projects. Monday, then, needs to be protected. I don’t have to leave as early for work because I see the Shrink at 9:00 am, and my last class is done at 3:20. If there’s going to be a chance for me to have some creative me-time, then on Sunday I should be making a dinner (or prepping food for the crock pot, or enlisting another household member’s help to prep) that will become leftovers for Monday  so that my shot at that time isn’t eaten up by the task of meal preparation.

See? That edges me back onto the tightrope again, balancing a little less precariously.

There will be Mondays when I had to work late and I can’t come home to create. There will be Mondays when I don’t feel good even though I had a shorter day and fixed dinner ahead of time. But at least SOME Mondays will be days where I can find the time to take care of my creative needs.

Tuesday shows that potential by maybe 20% less than Monday–but there is still a sliver of hope. That means that instead of dinner Monday being leftovers from Sunday, it should be a crock pot recipe that also covers Tuesday. IF I get an hour of time in my studio on Monday, that means Tuesday may only find a half hour; but the possibility is still there.

Wednesday I teach until nearly 5:00. There definitely won’t be any leftovers. Ideally, then, I would fix a dinner on Wednesday that is both easy and plentiful, to last into Thursday when I am completely fried.

Things I will have to limit:

On Monday, no booze until bedtime. Limited computer

Tuesday, the same, but maybe a bit more computer.

Wednesday–some computer, hot bath, booze.

Thursday: Whatever it takes to get through. Bath, booze, early bedtime, minimal dinner.

Even knowing that accepting certain realities will allow me to get closer to including things I want in my life, I feel resistant, which is the pull of the Should. I resent having to plan my life like this, losing some spontaneity in terms of when I will choose to work creatively, having to plan around pain and exhaustion. Yet, I can resent, dislike, rail against, resist what Is/Are all I want and I will change nothing and lose precious energy doing so. In writing, it seems a very small step to do what I have listed above, but emotionally it feels more like leaping a canyon. Except, if I look hard enough, there is probably a bridge that will allow me to cross the canyon one step at a time. That’s going to be the only way to the other side.

The Muse is Accustomed to Being Fired

Standard

I’ve had to let the muse go due to intense hip, back, shoulder, wrist and hand pain. No longer am I enamored of my patchwork collection, instead I am judging it wanting and a waste of time. It probably isn’t either of those things but the chronic-pain-colored glasses view it as such. Every step I took yesterday hurt my hips like a wide band across my lap, from deep in the joint to radiating outward over the muscles of my thighs. By the end of the day, of course, it was worse and I lost my composure entirely and had a sobbing fit in my bed while the husband and the dog tried to figure out what to do with me.

I suspect my emotional fragility at the moment is partly due to the above and maybe somewhat influenced by hormones (O, perimenopause, you wretched, wretched bitch). While I cavalierly said I didn’t care if I was once again making a collection of things no one would buy, today I DO care about this and perused my Etsy shop just to make myself feel worse. I don’t know why I cling to Etsy when I haven’t the time to devote to keeping it up. It’s the excuse for my thrifting addiction, “I can sell it on Etsy” but no, no I can’t, not consistently. There are times, like today, when I feel like my constant making of things is foolish and sad since rarely do I have an answer to “What will you do with this?” or “Who would buy this?” Earlier this week I was content to simply be creating, happy to be in the process and satisfied by the process and the products. But the process that makes me so happy and satisfied is the same process that means I was in bed crying at 8:00 pm due to pain.

The Shrink and I are working very hard on being in the Now, since that’s the only thing we have any control over. Last night, eyes leaking, my brain kept saying, “Okay, so this is the Now but the Now is horrible and what if it’s the new forever (no, no, forgive yourself for that and go back to now) Now sucks, Now is awful!” Or, as my husband finally put it (canceling out hours of mental looping and self-criticism) “Today’s just a bad day.” Yes. And I have to learn not to then tack on, “And what if tomorrow is, too? Or worse?” Because I don’t know that, and I can’t determine that until tomorrow becomes the Now. It’s a bit of a rabbit hole.

So today is slightly better so far except that I feel like a giant, potentially leaky vessel of tears. I have a massage and maybe that will ease some of the pain. Maybe I will look at my last assemblage of pieces and find it more favorable than I did yesterday. Maybe tonight will not be a night wherein I find myself freaked out about not having pain drugs, sobbing into the dog’s neck and panicking about the future. A future in which I will possibly drown in clothes, fabric, and partially finished quilts.