Monthly Archives: January 2020

Anxiety management

Yesterday I was told that I have three months ahead of me where I am on restriction for arm exercises. That means no yard work until May or June. That means when the bookshelves finally get built I shouldn’t put books on them. That means I really shouldn’t be doing so many house chores.

It’s time to hire a house cleaner and I feel really upset about it. I hit that level of disabled and I can’t expect my family to carry my weight of chores on top of their own for so long. Not in a house this size.

I did a big batch of cooking a week ago and my hand is still swollen. I have to buy and get into the habit of using a food processor. My arthritis is that bad.

I am not feeling good about my body, my self worth, or my general competence. I feel pathetic. I feel like I am seeing my usefulness as a tool slip away.

I was cleared for riding a bike and for going out and doing walks. The doctor was quite firm that I must not pick up my nearly-two year old at all and pushing a pram is… not really wise. I can’t swim but I could supervise my older children swimming.

But I can pull her in the bike trailer and attaching the trailer to the bike is dead simple and no real strain. So that’s something.

I feel absolutely horrid about myself. All of the things that make me like myself are falling away and I am left with the bits I despise.

And that means I want to get into stupid arguments on the internet over paper plates. I didn’t. I walked away. I know it is a stupid control issue. I am anxious as fuck. I want to be stupidly defensive of my choices and there is really no point. It doesn’t matter if this stranger agrees with me or not. I did what I did and… there is no value to arguing. I am not going to live how they live and I don’t need to argue about it.

I feel stupid and useless and I want to not feel so bad about myself. I won’t get that from stupid arguments about consumer choices.

I’m not sure I am going to feel better about myself from anything this morning.

Cabin fever is setting in

I feel like I am going crazy. I am such a bad patient. I’d like to be doing about 9,482 things. Every couple of days I go crazy and I do something like chopping vegetables and then I spend the next day feeling like shit sitting in a chair. Yesterday while sitting in a chair I spent some time carving holes in a chunk of wood (I am not finding a candle holder that I like) and my stupid watch was yelling at me because my heart rate was too high while sitting still. Fucking body.

Apparently the hole is a bit wider (I’m pulling stitches because I can’t seem to stop moving my shoulders) but it’s not that deep anymore… this is progress. At this point the surgeon just wants it to heal from the inside out. It’s happening. The red swollen bits around the wound look much better. The skin is peeling and ugly, but it looks like healing.

I’m bored. Only boring people get bored. Thus, I am now boring. I want to stop being a boring person. I am not allowed to until I heal. waaaaaaaaaa

Night before last it snowed and the snow lasted all day; we live in a beautiful winter wonderland. (It was just a light dusting; I’m not sure it was a whole inch.) Today it will be 3/4 degrees and raining. Tomorrow is climbing back up to 9. Might snow again on Sunday! It’s not going to be in double digits again for quite some time. I’d love to be going out and hiking the Roman road in the frost and chill–it sounds peaceful and romantic. But I know me. I would be wanting to pick things up and bend and do things like wear my toddler. So… that’s out.

I’ve read a few books. It’s not keeping my brain occupied. I want to do more. Healing sucks.

Fud

I suspect I am thinking about food so much because I am bored. I am not really enjoying sitting around waiting to heal. I am doing ridiculously bad at it. I just want to go work, damnit.

I used to date this guy who wanted to play with my genitals for a few hours without me ever getting to the exciting part. After twenty or so minutes of this I would dissociate and I couldn’t even feel what he was doing anymore. It was really boring. Thinking about what I want to do in the garden is starting to feel like that. It’s not feeling like the fantasy bathroom I didn’t really think I would ever get to do. (But I did it.)

So today I made a big raw spread for lunch. Then I made cock-a-leekie soup and I started the stock for potato leek soup. I made a French toast casserole for the morning. For lunch tomorrow we will have the potato leek soup and steak (if the steak isn’t bad because we missed the use-by date; damnit). Then dinner is cock-a-leekie soup (we didn’t eat it tonight….) and haggis and neeps and tatties because it is Burns Night. We will be reading poetry and being silly with it.

This week we are doing a big spring cleaning for Imbolc. We also want to make a cake and a feast to go along with the holiday on next Sunday. The cake will be made ahead.

I have unpacked that which I can unpack until the bookshelves are made. This is… not feeling like enough. I want to be done. I want to be fucking moved in. I loathe cardboard boxes. I mean, I will keep some around to play with because they are dead useful but having my belongings in boxes feels like an affront to my spirit. Either get fucking rid of it because obviously you don’t love it enough to take it out of the box or UNBOX YOUR STUFF. Moving has been such an intense thing in my life. I’m not saying that no one else should be allowed to own stuff in boxes; this is a me-thing.

I’m ready to take down the winter twinkle lights. As of my wee one’s birthday in a couple of weeks we will be down to a measly 10.5 hours of night. That’s how much time my house should probably be dark anyway. Ok, so it isn’t quite there yet… but it’s spring cleaning time! Get the house tidied!

Whyyyyyyyyy?

Because I always do a spring cleaning and it makes me feel like a hard worker and I take pride in that. For each thing there is a season and at the end of the season I take it down and put it away so that it feels special again next year. This is my one dust a year, dangit.

I have my bike trailer now. And my back is still open and strained and unhappy and I can’t go anywhere with it. My impatience knows no bounds.

I should be in bed. It’s bleeping 11. But tomorrow I will get to take care of YC for 4.5-5 hours alone while Noah and the big kids go off to the theatre class. Noah will get to have some down time while the big kids play. Ah well. I will play with my lovely little girl. She’s frustrated I am not taking her out but I can’t. Not until I heal.

Fuck healing! Hurry up! This is ridiculous! What, has this wound been healing for 14-24 days depending on how you look at it?! Isn’t that long enough?!?!?!

Bodies are annoying. I FEEL LIKE THE CASTLE IN THIS COMIC. But three years from now… watch out! I will do things!

Ghosts and Gaelic

I have started studying Scots Gaelic on Duolingo. So far I can pick out grammar a little bit and I can recognize words in writing. I’m pretty sure my pronunciation is shit and any person who actually speaks it would be annoyed at hearing my butchery. But I’m trying.

It’s a little odd unpacking our stuff. I have a really strong sense of “stuff” being tied to people. When I touch an item I am flooded with memories of the people I have seen use something, how I got it, why it is connected to someone I have loved. We pretty much only mailed stuff that had sentimental attachment. That’s… complicated.

I have a lot of the books that Sarah loved during childhood. She didn’t come and get them after the breakup and I couldn’t handle getting rid of them in a way that felt disrespectful. So I shipped them across an ocean. You know how I had tons of Wonderland stuff? Sarah was the one who was into Alice. All of the tea stuff I shipped… reminds me of her. There is a bunch of art stuff she made with the kids. And still we use backpacks and bags from her. My jewelry box was hers.

Taylor made my absolute favorite blanket.

My mother and Jenny’s mother made the baby blankets we shipped.

I have a photograph that Michael Blue took and I can’t get rid of it and I can’t display it.

I have hair stuff from Kira. I remember her voice reading a lot of the board books we own.

I have baby dresses and a mink stole from my mother/great grandmother.

I have a toddler tank top from Mikey and Katie’s wedding.

I have a vase from Francesca.

I have books from Lee.

I have a Ganesha from Mollena.

I have pictures of people who have been important to me. Thousands of pictures. Ethan and Kevin and Joey and Talia and Michelle and Ian-before-he was Ian. I have pictures of my friends with my children. I have pictures of my friends laughing and having fun. I have pictures of hobbies and activities I will never do again. Many of my friends were lovely and they gave me pictures of them from their childhoods.

The snow globe I was given as a thank you for marrying Michael and Erin.

Presents from Noah’s family. The wedding present his college ex-girlfriend made and gave to us. All of the dishes that were hand made by his aunt (a nice lady; we always make sure we stop in to see her when we come to Texas).

Love does not die with the dissolution of a relationship. Connections do not end even when you attempt to sever them. I am made up of fragments of a thousand different people.

The necklace from Stephan when he thought I was to be his wife.

The bracelets and ring from Tom when he wanted me to feel like his possession.

The things that my children and Noah have given me.

I don’t feel like a person made individual. I feel like an amalgam. I feel like the final result of a group project. I feel like I am so much more than just one thing.

The lip balm handmade by Jami. I’m not quite done with it all yet.

The warm things that Jenny made and gave to my family to help us adjust to the climate. (It’s been a warm winter so far! We’ve barely worn it!)

Items purchased at Saturday market with Ali. Or the other Saturday market that I first showed to Lee.

So so so much purchased with my children. I remember their consultation, “Yes that’s the right one for us.”

Despite the rancor and sadness and bitterness that have been part of some of these partings, I choose to take with me the love. I have been so loved. Bailey told me that people come into your life for a reason, a season, or a lifetime. Even when the season or the reason has passed for many of these relationships that doesn’t stop the love or the lessons I can choose to learn from them. I can be more because of all these little fragments of love.

The hole in my back is feeling a lot better. It is on the road to healing. The depression and anxiety I have felt all of my life is healing. It’s not that I will always be happy or always feel good–that’s not realistic. It’s time to settle in and start building things and making things in this place. It’s time to make manifest what is in my soul.

I am beautiful. Is it bad that I know this because of the reflections I see in all of these tiny little mirrors? You love me. You love me. You love me. You love me. You love me. You love me. I am a Velveteen rabbit. I am real, I am beautiful, I am whole because you loved me.

Menu

I used to put myself to sleep dreaming about the bathroom I wanted to build one day. Now I’ve done that. So now I put myself to sleep thinking about shorter term goals because that process was hell-ish. (I also suspect I’m avoiding nightmares about my sister, but that’s another story.)

breakfast: steel cut oats with cherries

snack: oranges

lunch: a variety of cheeses; cut up bell pepper, carrots, celery, and cucumber; hummus; green and black olives; some other kind of spread–artichoke?; olive bread; balsamic vinegar and olive oil

dinner: roasted and mashed sweet potato mixed with lots of creme fraiche (I want to pipe this around the bottom of the bird) topped with chives and parsley, roasted Brussels sprouts, roasted carrots, and roasted game bird cooked with a lemon, thyme, and rosemary

dessert: lemon cake

I don’t even know why I want this so bad. But someday soon… I’m doing it. The whole shebang.

I am a lot happier with my cooking these days.

Adventures in the NHS

On Friday when I noticed that the wound popped open again I left a message on the voicemail of the surgeon who did the procedure. I wasn’t surprised that I didn’t hear back over the weekend. We watched the wound and it improved a lot in appearance over the weekend. Today I got a call to come in and let the surgeon see what is going on.

I went in and sat in the waiting room for well over an hour. Given that I was being slipped in during a fully scheduled day this didn’t bother me a bit. My children are well behaved and polite so it wasn’t a problem for anyone. We sang very quietly to YC and read books and MC wiggled a little in her chair listening to music on headphones. No trouble. When I finally got called in I sent the kids off to the cafeteria with some money for a snack.

The nurse who was examining me was chatty and social and she had a bunch of tangentially related questions to the wound. Generally speaking she just seemed to be trying to develop a bit of a relationship. Given how small this town is, I’m not surprised. She took the dressing off and asked for specifics about the timeline of how healing is going. She asked who has been changing my dressing for me as the one we used seemed small. I told her that we are doing it and we ran out of the bigger ones and haven’t made a trip to the pharmacy yet. She was pretty shocked I am not having a community nurse do all of it–she asked how we were managing. I laughed and said we both have a lot of experience with wound care so it’s not really a hardship for us. She asked what I meant by that and I gave a run down of medical procedures either Noah or I have had to care for and her eyes just about bugged out of her head. She could not believe that people would be sent home with such major injuries to just figure out care on their own. I laughed and said, “It’s really nice to be living in a civilized country now.” She startled. She said that she guesses you don’t really appreciate what you have.

The surgeon came in (I’m having a bit of a hard time with the fact that surgeons are Mr/Ms not Dr) and started off with an abject apology for blowing me off when I brought up the EDS during the surgery. I got the distinct impression he spent part of the morning doing a cram session on what the fork it is and why it matters. He and I were quoting very similar details back and forth to one another about the condition. He is absolutely adamant that I need to get in to see a rheumatologist ASAP because my notes are bare and this condition is a big deal. He apologized again that there isn’t an EDS specialist in all of Scotland. He spent our entire interaction apologizing over and over again. I don’t think I have seen a medical person quite so deeply in “Oh shit I fucked up” mode.

He was clearly very grateful that I wasn’t angry. I told him we are learning together and things will happen along that path. Not everything will go smoothly and as long as I don’t die… we’ll improve in the future. His eyes kind of bugged a bit.

He is now quite concerned about the EDS. He stressed that it cannot be cured it can only be managed. I told him I am fairly chill about it because I’ve had all these problems for my whole life and I’ve been managing and now I have a name for it.

He said that since my wound has popped open twice and the second opening happened several days ago that it can’t be closed again and now I need to just keep it covered and wait for it to heal from the inside out. It does look like it is making progress healing and he does not want to remove the current stitches anytime soon. It doesn’t look like there is any sign of an infection and antibiotics were not mentioned. The occasional twinges of pain I feel are well within the expected level for the depth of cutting he had to do.

In the US the feeling when interacting with a doctor is often “How can I get this person out of my office” because the likelihood that you will really be a specific doctor’s problem in the long run is fairly small. There aren’t many surgeons in this region and I have a complicated medical reality and I’m not that old. The likelihood that I will end up under this surgeon’s knife again are really quite high. When I mentioned the name of the GP I am developing a relationship with he said, “Oh she’s quite nice! Good I’m glad she is getting to know you.”

This is a small town.

The generally expected rate of EDS says that there should be something like 10-12 people in a city this size. That means that information about the disorder is pretty rare and I can understand why people who provide medical care react like they are getting hit with electricity when they realize they really must learn more to care adequately for those specific people. He flinched when I said my daughter has it.

But not in a way that made me feel bad? He seemed like “Ok, I need to step up to this situation” and he was recognizing that the step rise was a few inches higher than he first assumed. That’s not insulting to me at all.

Our breakfast conversation at the house was about how you have to make mistakes in order to learn. I feel like this surgeon wants to get more information so he will never make a mistake like this again. He will handle my post operative care differently next time. That’s nice.

Two pieces of good news in one day

Yesterday we went to the school for a meeting with the head and the two classroom teachers. Everyone was super kind and upbeat. They extended offers of further assistance should we desire any in the future, we discussed the return of money, and they wished us well. The kids turned in the school equipment they had and… we are officially back to home education. (I will need to start saying home ed because that is the local lingo and folks here hate the Americanism of home schooling. I suspect I could get away with a bit of it due to… being American but I’m going to try to adjust.)

Also, we finally got an email scheduling our delivery. Sometime next Wednesday. Six more days until our stuff arrives. When it arrives it will have taken five months and a day from door to door. 22 weeks and a day. The estimate was 4-12 weeks. This is going to get the 1-starriest of 1 star reviews. And we need to open all the boxes quickly to check for damage. Woo. I have been told that I should expect a lot of mold damage. Fudge and suckerfish and whiiiiiiiiine. That will be super fun. And that means poor Noah is going to need to do most of the work for checking because I sincerely doubt I will be up for doing any of the lifting.

My wound had noticeable bleeding when we were in Edinburgh. That was 15 days out from the original surgery and 5 days out from the second stitching. That’s not so good. On the upside, I don’t know of a reason I have to leave the house until I have a doctors appointment on the 31st of this month. I am going to decline offers of suture removal before that. That’s a dermatologist appointment. The wound is very uncomfortable to the point that I would still say it hurts. The other upside is we might actually get the money for selling DVC soon. It’s a bit over a full year of run money so that sounds nice.

Wait, I do know a reason I have to leave the house. In the next two days I need to go pick up my library card. I signed up before the original surgery and I thought I would be better by now. It’s not a long walk away.

I’m really excited. I feel like I have my kids back. We already have the schedule agreed to and written on the white board in the kitchen. The kids know that chores and academics need to be done by noon if they want to game with the local home ed kids in the afternoons (they were invited to a Minecraft realm and they’ve been really enjoying that). On days they don’t get their stuff done they will probably spend the afternoons playing or reading books. I’m sure we will have some slack days in the semi-collapse post school rigor.

We have exchanged contact information with a number of parents from the school and I hope several of those friendships continue. One family in particular I am quite certain it will, others are TBD. We have tentative plans for a weekend hangout at the park with one of the girls from MCs class.

We won’t be able to jump into the home ed community until my back heals so I’m sort of extra motivated to sit in a chair so I can heal faster. I think this is going to be fun. And soon I have my stuff! This is great! SIX MORE DAYS

Reevaluate everything

I don’t really know what I’m doing as a parent. I read things, lots of things. There are so many opposing opinions on literally everything. So I try shit out and then I talk to my kids about how it is going. In the long run their opinion of my parenting is the only metric I care about.

I asked them last night if they think getting paid for chores is motivating them or taking away motivation. EC eloquently said, “Well, on weeks when I don’t need any money I don’t see any reason to do chores.” So that’s not super helpful. I asked if they think paying for their own stuff is helping them feel like they are more responsible with how they use up products. They said that part is working well.

We also renegotiated their pay for babysitting because that’s different from sweeping and tidying. They did some practice on how to state how they have increased their responsibility (closer to babysitting rather than just being a good playmate who distracts YC while I have to do all the ‘work’ stuff) but they still aren’t ready to be fully independent about it. We talked about what adults/older teens get paid and what sorts of qualifications those people have that my kids lack. I did this same sort of process with their former babysitter. How do you negotiate for pay increases, how do you talk about your increasing level of responsibility?

It was interesting listening to how they have no real interest in renegotiating what they get paid for chores because that has an opposite effect on their motivation to do the work, but babysitting is different. If I were to guess about why these things are different (I don’t know for a fact I can only use conjecture) chores are things they are doing in preparation for being an adult and it’s part of being a citizen of the household. Babysitting is different from just playing with their sister and being part of a family. It’s exhausting in a different way and they are doing this training partially so that when they get older they know how to advertise their services to other people. Neither of them anticipate a career in janitorial services, those are skills they are learning for themselves.

That’s my guess. But I could be wrong.

So we are going back to a flat allowance for most chores with the exception of babysitting. The first five hours/week of babysitting is payment for their cats since they don’t want me to feel like I own the cats. They get paid over that threshold. So technically their pay can still be variable, but frankly most weeks I doubt they will do more babysitting time than the basic hours.

It means that each big kid will do a couple of hours on a weekend day with their sister and then an hour most week days. I will get to rest more.

I’ve tried creating this with adults for pay. I signed back up with Care.com and the like here in Scotland. I have ads. I’m looking for support! I’ve sent messages! No bites. I’m not sure what it is about how I advertise that makes people have so little interest in working with us. Ah well.

I might get to actually date my husband again one of these years. Woo.

MC’s “babysitting” is still at the level where I have to be available to provide food and nappy changing services but she’s getting really good at playing with YC for a while if I have chores I want to do. I think EC is at the point where Noah and I could disappear down to the apartment for a few hours. I still wouldn’t feel comfortable leaving them alone in the house as a regular thing.

EC did take care of things when my wound popped open. Getting a taxi for 5 is… hit or miss. Sometimes they send an adequate vehicle and sometimes we have to send back a smaller car and wait for a bigger one. So she stayed here for two hours with YC while I got stitched up. I am grateful that we now have that level of assistance, but I don’t really think EC feels ready to take on that level of babysitting on a regular basis.

Babysitting usually means Noah and I get to be in our bedrooms with the door shut for a little while. So we have half an ear out for stuff we need to mediate, but we get to do something without toddler “help” for an hour or so. It’s a work in progress.

We are all just works in progress.

I do these kinds of negotiations with my kids partially to model for them that relationships are not static. You try something and if it isn’t working you can change it. Just because you agree to try something that doesn’t mean you are stuck doing it forever. You are allowed to grow and change. You really should change over time. And it’s hard to figure out what should change when things aren’t working; sometimes you need to throw stuff at the wall and see what sticks.

We are talking a lot about what we want from home schooling going forward. I’m doing more research because that’s my place of comfort. I’m looking into what the exams are like in secondary school. When do they happen, what do they mean? How do we prepare for them in a home schooling environment?

Well, me screaming about them not working hard enough… that needs to not be part of it. MC is just to the age where I started sitting on EC really hard to force her to “catch up” in a few subjects. Turns out I didn’t make her catch up to grade level I made her get way above grade level but I did it at the cost of both of us being miserable for a long time. I need to learn from that mistake.

Why is it that people who beat the “handwriting is important” drum think they are being the voice of dissent and advocating for The Most Important Life Skill? You aren’t the voice of dissent. You are literally parroting The Man and being as fucking basic as possible.

But the exams here all handwritten. So my kids need to practice for that. I get it. Just, ugh. Don’t act like handwriting is the measure of the anything other than the ability to jump through an arbitrary stupid hoop. It is not the measure of intelligence or knowledge or wisdom.

My mother’s handwriting is exquisite. That hasn’t helped the woman get a good job, ever. My handwriting is shit and the only thing it ever cost me was a masters degree. I still got the pay raise associated with the masters degree in my career of choice. I still have never had difficulty applying for any work I’ve ever wanted to do. I didn’t want the career that a masters would enable. I wanted the knowledge so I could be better at the career I was in without having it at all.

Just… ugh. Why in the fuck do handwriting advocates think they are so… revolutionary? “I’m going to be the voice of dissent that happens to agree with every bureaucrat in existence.”

Like, really? Voice of dissent here? Come on now.

Oh… you were just trying to say that if there are disability related reasons that handwriting is a problem I should not seek out accommodations because who gives a fuck about those disabled kids. Right. How very ableist of you. One of the fucking diagnostic tools for EDS is difficulty/pain in holding a pencil. Our god damn joints don’t stay in place to hold the pencil the way it works for other bodies and we can end up with permanent fucking pain.

That’s not the “voice of dissent”. People have been telling folks with disabilities to suck it up since forever. But sure. Keep feeling superior over there. What was that you said? You don’t have a job and you need to go back for extensive training to get another one because your qualifications lapsed? I guess all that fucking handwriting you did wasn’t enough to save your ass?

Sure. Keep telling me about how handwriting is The Way, The Truth, and The Light.

I’m clearly frustrated with someone. But yes, I know my kids have to work on handwriting. Even if it wrecks ECs hands she has to do it anyway.

THE FUCKING VOICE OF DISSENT HAS SPOKEN.

“It is no sign of health to be well adjusted to a profoundly sick society.” – Krishnamurti

Sigh.

If you look up recommended accommodations for children with EDS, “eliminate handwriting grade and substitute grades for content and effort” is on the list.

Sigh.

We’ll figure it out. I’m just frustrated. People are challenging.

Uncomfortably not-numb

I am trying to sit still and heal. I really suck at this part. I slept well last night but I feel groggy and stupid. My back still burns and aches.

I feel frustrated with myself for not doing more research on EDS before the surgery. I have a history of complications and no one is going to track them or advocate for me; I have to do it. I told EC this morning that I am glad that she is learning these lessons before she is even a teenager because someday something is going to go wrong with her body and she will know enough to advocate for herself early and hard. EDS means difficulty in healing: our collagen is different. I already knew that I had issues with local anesthesia. This is the first time a wound has popped open like this, but I’m getting older and it’s going to be a bigger concern as time goes by.

I’ve been talking to a buddy who has EDS and a bunch of similar issues. She’s trying to help me figure out how to present this information to the doctors here. She’s upset because the surgeon told me that EDS wouldn’t have any impact on this kind of surgery. That’s not a great sign for the folks around here knowing how to handle my condition and it’s a small pool of doctors here. I am going to have to educate them all.

Festive.

But if I frame it as “There is a small pool of doctors here so these are the same people who will treat EC when she has issues” then it feels a lot more worth the hassle.

I’m tired and I hurt but I’m bored too. I want to be working on something. I want to be moving forward on something.

My last contact with the shipping company says that the next company that will touch my stuff is just waiting until they next have a delivery scheduled to come to the Highlands. It could take a while. Our stuff has sat in warehouses for more than three months. That was supposed to be the maximum amount of time for shipping it. So the transit time is within the estimated time… but people just don’t feel like doing the transit part very quickly. Still no sign of them wanting to do this soon. Fuck everything.

Oh crumbs. I just remembered that we are going back to Edinburgh on Tuesday. That’s going to be fun right now. That means I get three days of “rest” before getting to travel/walk/take care of business for 16 hours. Fun.

I put rest in scare quotes because I was alone with the baby for five hours yesterday.

Shit.

I feel like absolute shit. I’m past the point where I’m holding my right arm to my torso to prevent any muscle movement. Yay? This is all massively confounded by the fact that I feel really guilty about “Noah’s month off” turning into “Noah doing everything for Krissy for a month”. I feel so overwhelmed and guilty.

I’m in the narrow window of the month when I’m more likely to be interested in sex but hahahaha no.

I feel really bad about myself right now. I feel useless and lazy. I feel like somehow I did something wrong because I should have known that I needed to do a bunch of research before the surgery and come in with documentation of my fucking special needs. I should have known that it was too soon to take the sutures out. I…

I should have done everyone else’s job for them or it is my fault things went wrong. Because I didn’t do more than my share now Noah is getting stuck with my share and that feels really unfair.

I’m tired and sad and worn out. I’m sick of resting.

But, I emailed the professor who has been on my mind for over a month. I did a bunch of research into the education system in Scotland. I know more about what I’m going to need to learn over the next few years.

Even being idle doesn’t have to be idle.

Sidebar: I WANT MY FUCKING STUFF.

Complications

I had the stitches out yesterday from the surgery I had on the 31st. Then the wound popped open and I had to go see another doctor to have the giant gaping wound restitched. Apparently that’s called suture dehiscence and it’s common for folks with EDS. I’ve been doing research this morning. Apparently EDS means I should have had my sutures left in for twice the normal healing time. I am going to figure out how to get a bunch of research on EDS to my medical team. I mentioned on the operating table that I have it and the surgeon said it wouldn’t matter.

My kids were understandably pretty freaked out. MC told me she had an unhappy tummy when she thinks about the wound.

I said that being afraid of the wound is like being afraid of riding your bike. I am going to die someday–that’s the end result of being alive. You are going to fall off your bike sometimes and the only thing you get if you are afraid of it is that you can’t enjoy the time you are on the seat. I am going to die some day and my body has a lot of complications that I’m trying to manage so that I can stay alive as long as possible. My body has more complications than average and that means I have to do a lot of research and I have to advocate for myself because keeping me alive isn’t the same process as it is for other people. If we waste a lot of time being afraid of my eventual death we won’t get to enjoy the time I am alive.

This research is extra important because EC has the same condition and the more I find out about myself the more I can save her from suffering through similar issues. She can advocate for herself earlier and harder.

Now I need to figure out how to get this research to my medical team. It’s entirely from highly reputable/peer researched locations. I’m not researching on blogs (Even though blogs are often pretty fucking accurate) so I hope this is taken seriously.

I need to assume this will take twice as long to heal as “normal”. I need to have the stitches stay in longer than expected and I need to say that to the doctors involved in my case. I need to be proactive because I am the only person who suffers from these fuck ups. My back hurts a lot again today. There was partially healed skin there that ripped open. It doesn’t hurt as much as it did the day of the surgery but it probably hurts as much as it did on day two or three post surgery.

I almost certainly tried to bounce back faster than I should have. I feel so much shame for “being lazy” when I don’t help and do chores around the house. But here I am with more complications post-surgery because I didn’t let my body have the time it needed. It’s like what happened after the septoplasty when I probably had three or four times as long of a recovery because I didn’t take the twice as long I should have taken.

Ugh.

I should probably sit in this chair for ten days or more this time. That’s hard for me. I must work to feel worthy. But if I don’t rest I will be less able to work in the long run. It’s complicated.

And it begins

Trying to make new friends is a process. It’s hard. It takes effort and time, but we are getting started. Yesterday was a banner day on that front. I talked to two parents from the school about playdates outside of school. They both want to maintain a relationship after we leave the school. We exchanged numbers and arranged to meet up outside school.

Then the young gentleman I’m talking to came over with his partner for dinner. We talked until midnight. It was fun. When I graduated from high school they were 1. *sob*

I am utterly worn out today though. And we have two doctor appointments and a cake for a cutie pie to drop off. It’s going to be a long day. These young whipper snappers have more ability to stay up late than me. Ugh.

I made a thing!

The recipe makes five layers and Jenny’s family only wanted two layers. Then EC wanted me to set aside half a layer for her with no frosting. This is what I did with the rest. I was trying for a Monty Don style garden. The bottom green was getting too warm, so it doesn’t have grass peaks but it was getting close to midnight and I didn’t have the patience to chill it before I finished. I still really like how it turned out.

Improving and thinking

I made it through a day out without feeling too terrible. We had some stuff we needed to deal with and we met a home educating family at a park after errands. It went well.

Now my back is quite sore again. I was out too long and I feel really uncomfortable. I won’t die or anything, but it’s feeling like a lot.

It’s kind of funny, but I’ve seen the mama in that family in town with her kids before. I noticed her because I admired her clothes and I wondered about her being out mid-day with her kids in tow. Ha.

It made me miss my clothes that are in transit that much more. I miss feeling like I look like me. I am in borrowed/hand-me-downs or a couple of pairs of trousers I got because I needed something and that’s what I could find that felt comfortable. I don’t have clothing with me that is weather appropriate that feels like my style. This is amusing to me given how much time and effort I spent thinking about how I want to be seen in the world at the encouragement of the horse-trainer-lady. She has a whole workbook she made about figuring out how you want to be perceived in the world and taking concrete steps towards being accepted for how you see yourself. And now it’s all on the boat. I had stuff with me that worked for how I wanted to be perceived in excessively hot weather. For now, I tread water in stuff that feels kind of wrong. Almost 20 weeks of waiting now.

“It’s on the boat” has become an epithet of hostility in my house.

I both care and don’t care about how people think about me. I tried makeup. Frankly I can’t wear it in this environment; even the “water proof” shit runs and then I look stupid. But I’m a hippy. I want my long loose skirts back. I am not a straight mini-skirt person. Knee length skirts barely feel decent to me. Even when I think they are super cute they don’t feel like me. I realized last night when I went to bed in pajamas that had a little hood on it I was literally only exposing a little oval of skin on my face. I had gloves and socks on (keeps the lotion in, yo–I’m dry as fuck). I honestly like managing my appearance in such a manner. I like being covered. I like having my body be private. I have no interest in dealing with other people’s perspective on whether I shave my armpits or not. You can go fuck yourself if you care.

I like keeping most of my body private in this really intense way. And living in trousers doesn’t feel the same and that’s what I’m doing right now.

I miss the super awesome hiking boots that were too heavy to wear in the heat in Thailand. I want them back. They are on this island. They have been on this island for five days short of a month.

If I get a call on Monday for a Wednesday delivery then the absolute soonest we can get our stuff is 20 weeks. This dominates so much of my awareness. I don’t feel settled. I am always waiting.

I am waiting for my life to start. I’m thinking about the fact that a lot of our home school materials are on the forking boat. Give them back.

We can’t “officially start” home schooling until we are given council permission. This is most irritating. If I never enroll YC in nursery and if I waited until the end of this year when EC is graduating out of primary school I wouldn’t need council permission. At this crux times I’m allowed to simply not enroll my children and the council has no say. But MC having another two years in primary school means I need permission. It being mid-year matters.

It’s going to be a few weeks until they are home full time again. The boat stuff had better bloody arrive.

Meh, bookshelves won’t be built until February at the soonest and probably won’t be done until March or April. Noah’s bathroom has a leak. It’s not like we are settled into this house. Still adjusting. Still wiggling into spot.

I’m trying to not get ahead of myself on planning for the garden. I don’t even know what it looks like at the beginning of spring yet. I don’t know the light patterns yet. I don’t know where things will grow and where I want to add things. I just know I need a whole lot more wildness. I need it for my soul.

Oh! I found out that the housing development that is supposed to be placed on the field behind my house is held up because of badgers! They can’t build anything there until they find suitable rehoming spots for all the badgers and they keep finding more! THAT’S SO COOL. In light of the utter total destruction happening in Australia it’s nice that some animals somewhere in the world are being kept safe right this moment. It doesn’t help the half a billion animals killed there in the fires, but it is one set of humans doing something in one place. It’s not enough.

Enough would require about 7 billion people caring. I don’t know how to make that happen.

Our home is becoming really wonderful to me and I have mixed feelings about that. I am a Have in this world. As a result I am building a beautiful home–it’s a process. Making this home is going to take a decade or more. Ha, Noah thinks I don’t have a big project started? I’m just pacing myself. There is no fair. There is no justice. I don’t know how to feel about any of this or what I should do about any of it. I didn’t think I would be a Have. I expected to be a Have Not.

And yet when I look back… did I really? Or was my sense of self esteem so high that I made sure this would be the end result?

I want to learn how to be a lot more things; I want to do a lot more things. I don’t want to buy a lot more things. I want to make my own pretties. And that requires one of the biggest luxuries of all… time.

I’m not a minimalist. I like drawers and shelves and cubbies with things in them. Minimalists think more will appear in the moment they have a need. I like having stock to get me through the lean times when access is harder.

My typing is tapering off because Fluffy is not ok with me doing anything other than petting her.

Skills I want to have:

  • making more kinds of ethnic foods from scratch
  • sewing the clothing I wear, I hope mostly from recycled fabrics
  • make the candles I burn
  • figure out more about growing native plants from cuttings so I can provide food for local insects as many months a year as possible
  • get better at painting
  • figure out how to make bread-making a part of my routine; it tastes better
  • build an exercise routine I can keep with kids around

In 2020 I hope to:

  • read 78 new-to-me books
  • walk at least 1500 miles
  • be consistent with tracking our finances so we have a better idea of what that will look like going forward
  • find more relaxed ways to help my kids learn; I want to be less schooly
  • have more date time with Noah
  • build a play kitchen in the yard for YC
  • organize the books in the house
  • get started on setting up an art studio
  • write at least 10 letters to friends
  • spend less time on the computer or my phone
  • try to incorporate more witchcraft into our family time

That’s a lot. That’s enough. Go to bed, Krissy. Boat stuff won’t come faster if you stay up being annoyed at the delay.

Aging and recovery

I am not shaking off this surgery very quickly. It happened almost 48 hours ago and I have barely been out of bed since. I guess the upside of that is that the body battery on my watch says I am up to 84%. It said 93% when I woke up. Then I got up, ate breakfast, and took a shower. If I burned that much fucking energy with breakfast and a shower no wonder I feel like warmed up dog food.

Every time I breathe it hurts. The wound is in the center of my back. Every lung movement hurts. Any time I grip anything with my hands it hurts. If I lift my arms it hurts. If I hold my body upright under my own power it hurts.

I am feeling really fucking old.

I am also writing this from bed, where I intend to stay. I took pain killers the day of surgery and yesterday. I haven’t had any today and I don’t know if I will need them. Yesterday it was a solid 6 for me. Today it feels down to a 5 but it is still distressing and interfering and unpleasant.

I’m reading fluffy books because I can’t bear to try to seriously think. I watched some Netflix, but that’s less good for some reason.

Youngest Child is coping surprisingly well with me being in my room behind a gate. Her siblings and her dad are showering her with attention and play so she’s doing well.

I wonder how many days until I feel good enough to be up and about.