Coming to California

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I have already scheduled appointments with: dentist for Noah and me, chiropractor, haircuts for all four of us, and pediatrician for all three kids. I have emailed and am waiting for responses from the pediatric dentist.

I have requested medical records from everybody and I’ll be picking them up all over the bay.

Check all the boxes.

I need to message massage therapist too, but I’m waiting until some other stuff falls into place first.

We need to find out what day we need to go to San Francisco to start the visa application process. Apparently we must do it inside our home country and that means we have to do it in August. Then we will bebop over to the UK in between Bangkok and Taipei to process documents. We won’t land in our permanent home until January.

Things shift, yo.

Seems wise to do all the basic maintenance stuff in the US with our old providers so that we have a runway of not needing any services for a while as we figure out a GP and all the other providers here.

And more logistics are incoming. Woof.

That was… way less worrisome than expected.

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Well, we got the house. And we need to hand over money by August 26th. We literally don’t sign anything. The previous home owner signs it over to us and we pay to have that registered with the government and… they hand us keys and we continue on our merry way. It’s not like California where you need to sign like 37 pages in front of a notary. Like, whoa.

We still have negotiating to do with the home owner. I am not 100% certain they will be out of the house on September 2nd (our official purchase date is our 13th anniversary–that’s so awesome) because they might rent from us for a while. We will be exchanging lots of emails to communicate because that’s how we roll.

I need to sit down with my OmniFocus and write down lists of tasks. Like getting copies of all of our medical records. Oh goody.

But it’ll be great! Do the things! Then we will be free! Free to move to the next stage of life where we live in beautiful Scotland.

Falling in place.

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We got the house we wanted in Scotland. The previous owners are thrilled about how we want to add art to the space. (They cancelled showings with other families to accept our offer.)

And there is a sound proof room at the back of the property. I will finally be able to scream at my house without bothering neighbors or my kids. (They built it for a drum set.)

I am really excited. Next: finishing the visa process. The solicitor we are working with says he has never seen a more likely easy acceptance. Noah’s work history really is staggeringly impressive.

I am meeting nice kinky people so that I have friends other than my life long vanilla best friend.

Before we land in Scotland permanently I am getting to be blessed by touching base with some of the people who have inspired me since I was a teenager. I am in such a fantastic and lucky phase of life.

Did I mention that there is a self contained apartment so people can come visit us and have their own bedroom/living room/kitchen? If I love you and you know it you are always welcome.

We will be in Portland for a while next week. We will need to make a trip to California in August to close accounts and ship our stuff.

This is happening.

Oh no

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My poor big girl is sick. It’s nasty. 38.7 temperature (about 101.7). That’s not high enough to need a doctor but it’s high enough that she has a nasty headache and she feels terrible. She is having uhhh other symptoms. Let me pretend she has a wee bit of privacy here. She feels just awful. I am trying to push fluids and rest. I have all the food options she could/should possibly have on standby. I may want to walk down to the store again today to get more fizzy juice.

ALL THE SPRITE AND 7UP HERE HAVE ASPARTAME. UGH.

No.

So fizzy juice it is.

Today will be an ALL THE LAUNDRY sort of day. I started the first load at 4:30am. When this one finishes I am putting Eldest Child in for a long bath and I’m going to boil her sheets like whoa. All the towels need washing.

I was excited to see a full size separate washer and dryer in the house.

I am worried my kids are going to fall like dominoes with illness. Ugh. We leave in 10 days.

So many feelings right now. Gratitude. Trepidation. Worry. Concern. Appreciation.

Noah is absolutely ridiculously wonderful. Most of the visa application stuff falls on his shoulders because it is about selling how awesome he is. He is adding that work to his mountain of work and doing it with a smile.

It’s interesting to me how much my kids have fallen in love with Scotland. They keep telling me how grateful they are that they get to come back. They want this place for their home. Most of the places we visit feel like a stop on the road and it’s nice and all…. but not for us. Scotland feels comfortable.

And by golly we can talk about the weather all day so we’ll do ok.

Art, writing, climbing, walking. We will get used to hill walking. I am excited about the biking opportunities.

So far the whole paying-for-chores thing is going well. My kids are feeling really excited about the link between “I didn’t do much this week so I didn’t earn a lot but last week I worked a ton and I put a bunch into savings.” They are both looking forward to the future where they will want more clothes and toys and they don’t think that a bunch of sweeties are a good plan. We (the grown ups) are still providing two desserts a week and they don’t feel deprived. We also aren’t constantly fighting over candy or crappy food. They have their eye on toys they would like to have in their long-term bedrooms that they can’t have now and they are counting and recounting their growing hoards like Smaug. It’s funny.

They are starting to think hard about how they want to furnish their rooms. We took a quick trip to the charity shop and they were overjoyed by the offerings. And I quote “Even Ikea seems overpriced! I could furnish my whole room for £100 and have money left over for art supplies and toys!”

Our current plan is to start at the charity shop with the absolute minimum we need to get by, get nice mattresses, then just… wait and accumulate money and see if we truly want or need things. After a year or so I will do a lot more evaluation of what I think we need. In my head, putting permanent installation bookshelves from floor to ceiling on one wall of the lounge with a moving ladder would be awesome. (It’s a tall ceiling.)

Apparently futons want replacing in five to ten years depending on weight of the person and how heavily they are used. I am not sure how long Middle Child will continue to want to sleep with us. Eldest Child has said that for the first month or two she might do it half the time then after that she thinks she is ready to just move into her own space. I strongly suspect MC will want to be in the same room as us at night for at least the first year in the new house. I don’t think he has five years of room sharing left in him. Her Sweetness… that’s going to be a longer time.

With five family bedrooms, the annex, and the studio it is interesting thinking about how we will use space. Her Sweetness won’t be big enough for the studio to be a playroom for several years yet. I wouldn’t be comfortable just kicking her out to go play for a solid four years. Maybe until she is much bigger the studio will be the art room?

AND THIS COULD ALL FALL THROUGH AND MY DREAMS MIGHT BE FOR NAUGHT. I get that. But I want to dream anyway. I like this part of the process. I’m not getting my heart set. Just dreaming.

But I feel like all of us big people are going to really benefit from a place where we can make big messy projects that don’t have to be instantly cleaned up because they are in the main living space. EC and I can start experimenting with oil paint. MC wants to try a lot of art mediums that really require being able to leave stuff out for a few days.

Noah is going to turn his office into a video recording room. We will figure out sound stuff and lighting and he won’t have to take it down when he is done for the day. It will make working a lot more simple and relaxed. Fewer steps.

I suspect that the family sleeping room will morph into Her Sweetness’ room over time. That seems like the most logical process. Her toys will start out all over the house, of course. That’s how toddlers roll. Big kid toys will have to live in their rooms because a lot of their toys are things they won’t want to share for many years. They are so far past the toddler stage.

My bedroom will be by invitation only and mostly kids just can’t come in. I’m sure that when we are transitioning out of Her Sweetness’ room it will be complicated and involve some sneaking into my room.

I think that it’s going to be interesting having a dynamic with Noah where it isn’t our room. But I seriously don’t want it to be. I mean, I am sure he will sleep in there with me the vast majority of the time. But that will be because I want to invite him in not because that is simply his place.

This feels so achingly important to me. His office will need to have a place where he can sleep. He could potentially sleep in the annex sometimes if he doesn’t want to be in his office and I need space. We have years before Her Sweetness will want to be alone.

I. Will. Have. A. Space. For. ME.

When I am being a grumpy bitch I will have somewhere to go so I don’t feel like I am a piece of shit who doesn’t deserve to be in a family. I am part of a family. And sometimes I need to be alone in a room because I’m overstimulated as fuck. I won’t have to ask anyone to leave a space that is theirs in order to get room for me. My room is going to be so completely and totally off fucking limits.

I don’t have any real idea how I want to decorate it or use it yet. I want to spend a year just… waiting for the room to speak to me. I don’t want to get started quickly.

I don’t want to do almost any serious long-term work quickly. I want to have the picture fully formed in my head before I do anything. Like my tattoo. I dreamed about it for years before I got started. I’m impulsive and I’m not.

Like, the opposite wall in the lounge from where I think the bookshelves will ultimately go… the wall with the tree I think that one will be a mural wall. I am certain there will be trees involved to go with the trees that are already in the house. I am interested in having another tree bookcase possibly. But the size and shape and details are going to take a long time to percolate in my brain. I am going to do a lot of sketches. I won’t get started for a year or three.

I don’t want to put a single plant in the ground until I have been there for a year and I see how the light hits the ground. I want to learn how much care the current plants already take.

Sleep, creep, leap. I anticipate years three through five being very busy with projects.

In five years Eldest Child will be 16. Oh golly. Middle Child will be turning 14. Her Sweetness will be 6.

Hey USians, did you know that in Scotland 16 is when you are allowed to move out and be independent without emancipation? Holee shit. University students here can start at 16. It is utterly terrifying that my baby is five years away from adulthood. My baby isn’t such a baby anymore. I can’t wait to see how her art has progressed in that time. She is so much better than I was as a child. MC is better than I was too. They are both all of a sudden getting into drawing on the iPad. I am really excited to see their work. I will not permit unfettered access to video games. Drawing? Yes. Even on a screen.

I’m such a fucking control freak.

It’s not that they can’t play games at all! There is value in games! But balance, yo.

I need to stop typing. My fingers hurt. I have so many more thoughts though.

The reality of depression

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The thing about depression is it casts a pall on everything. I am excited only I’m not. I’m happy only I’m not. I feel kind of dead inside only I will absolutely keep marching forward. I miss pot. Pot allows me to feel more in touch with feelings of happiness instead of viewing them through a screen.

Just keep swimming. Fake it till you make it. It’s not about how you feel it is about what you do.

I want this house. I want this house for a bajillion reasons. Are there things that I would do differently if I were building a house from the ground up? Probably. But this house is quite lovely and will be a great canvas for all of our needs.

If we rent out the annex for a couple of years to students at the local university we could get them to pay 2/3 of our mortgage. Noah has mentioned that he might talk to his parents about helping with the mortgage. (I have mixed feelings about this, but them helping us with a mortgage on another continent means I definitely won’t have to spend time with them to thank them.) If Noah can keep his California job (looks quite probable) and we keep paying our California rent we can have this house paid off in less than 6 years. If his parents helped… we could be mortgage free quite quickly. Then it wouldn’t be such a big deal for him to work.

I would really like for him to not have to work for rent money.

I suspect that our food costs will be similar in terms of money, despite translation. So our CA dollars won’t go as far. One good thing about not having a car: eating out all the time is more work than cooking. Also, having four people in the house who are competent to make food really changes the dynamic. When one person isn’t in the mood to cook… someone else probably is. We will definitely need to figure out where we can put a big freezer. There isn’t a ton of space for that. It might have to live in the kitchen where they currently have the table. I might want to have an island in the middle with the freezer against the wall, then we will have more space for working and setting stuff that is in transit. I don’t think there will be room for a chest freezer in the utility room and we won’t have a garage. (EC saw the reference to a big freezer. She says: “It will be important for our ice cream tastings!)

I wonder how water proof the outdoor shed is. Hm. It looked snug enough.

Of course when we did a walk through Middle Child declared that the room he wants is the master bedroom. Offfff course. It’s 2.23 sq m bigger than the next largest bedroom on that floor. (Master (has bathroom): 14.4, son room (no bathroom): 12.23, additional bedroom (has bathroom): 11.18 , daughter room (no bathroom): 10.34, downstairs (with bathroom): 20.62, annex (has bathroom): 11.38)

I think the very smallest bedroom is bigger than the master we had in Fremont. That’s funny.

Son bedroom and smaller upstairs room with bathroom overlook the burn. Master and smallest upstairs room overlook the road/city. You can see all the way out to the firth (Moray).

(I’m just calling them son/daughter room because of current inhabitants. I am not sure I need to assign them to my kids to keep up the tradition.)

The burn is kind of southwest. The firth is mostly northeast. I think if we manage to move in during January it would be fun to have a year of charting where the sun hits different parts of the yard before I start planting anything. I would like to grow some food, but getting used to doing so in this climate will be tricky.

Now we have appointments with mortgage brokers. Eeep.

Questions for the current owners: is the shed waterproof? Where do you store your holiday decorations?

Gosh. Today is going to be lovely.

 

I am in love

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The house was better than it looked in pictures. The grounds aren’t extensive… but that is probably for the best. Yes, there are a fair number of stairs but there is also a self contained apartment with a wheelchair ramp and wide doors. There are so many ways this house will be configured over time. The bedrooms are much larger than the ones we had in Fremont. THERE ARE 6 TOILETS. *swoon* 5 showers! A bathtub I could share with Noah! There is an exterior studio room that was SOUND PROOFED FOR A DRUM SET. I could scream in there and nobody would notice.

There is so much light. It’s a very bright, happy house. The ceilings are much higher than almost any others I’ve seen in this area. There is a tree in the corner of the lounge. There are beach logs used as the barrier next to the staircase.

It’s really nice. The yard is very private. The yard has decent borders and lots of central space where I can plant a really nice cottage garden.

It’s going to be important for us to replace the fence next to the burn (a small creek). We will have a small creek as the border of our property. (Insert heart eyes emoji) We will need to change the entry gate so that it is less easy for a toddler to climb right over. There are a couple of sections of fence that we will want to make a bit taller. Possibly trellis with plants?

I won’t need to do anything to this house for years. But when I want to, I have small easy to compartmentalize projects.

The current owners need to sell the house, then wait a while so their next house can be built. They are getting a modular place put together. It will take around six months. We asked about the possibility of them selling to us then renting it back from us so they don’t have to move twice in a year. The lady had never considered such an option and her eyes got about as wide as dinner plates. That would make her life a lot easier.

So tomorrow… we contact a mortgage company. Then call the solicitor back.

I love the utility room. There is a great shed for gardening tools and bikes. There’s plenty of storage for holiday stuff.

I LOVE THIS HOUSE.

The outside studio could easily be for classes of 4-8 people.

I think that I wouldn’t have there be a lounge next to the kitchen. I think I would just use that as a dining room.

So many thoughts. I loved the house. It is so versatile.

Eeeeeeeek.

PT then go splat

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I just don’t feel good and I can’t shake it. I got like 9 hours of sleep last night and I feel like I can’t wake up. I’m bone weary. My kids are all complaining about feeling off too. Noah hasn’t felt fully well in a while.

I’m feeling a lot of grief. I think I am displacing it onto “safe” topics. Like: I am absolutely weepy and upset over my teddy bear being gone (almost 4 years since he was lost on the road trip) and my cat dying (a year and a half ago). I can’t hold on to people and I can’t even hold onto my fucking teddy bear. I feel like it isn’t safe for me to develop attachments to things or people.

I am struggling with feeling like if I fall more in love with Jenny’s family I will fuck that up too. I fuck everything up. I am just a fuck up.

I told the kids we are on academic vacation this week because we haven’t had a lot of vacation time this school year. We have far less “vacation” than traditionally schooled folk. We need a break.

I am really emotionally struggling with “You are disabled; get used to it. Change your life to accommodate it.” I know it is true but I am feeling really bad about myself. I don’t feel bad about other disabled people needing help. I am happy to provide support and I see how others need it. I am not feeling ok about needing it for myself.

Pain is really getting to me. It ups my anxiety and depression by so much. It is hard to feel like anything is good even though objectively I feel like most things are going well. It feels on the verge of explosion any minute here.

My jaw hurts. That’s not a standard part of my pain experience and it’s really distracting and awful.

I am starting to low key pack. Stuff that will stay in Jenny’s garage until we come back will get shifted in the next 5-10 days. We are leaving in 13 days. Donation stuff will go at the same time. I’m starting to pack things that we are bringing with us but not using before we leave (shorts, tank tops, sandals). There are a few toys in the kid backpacks that might stay here because they don’t use them often they just can’t bear to get rid of them. We’ll see. The lighter we can make our load when we leave here the better. It means that we can acquire things that we want in our next long-term home.

It’s hard to think about it as a forever home. It will be a permanent address though in the sense of putting it on ID and credit card bills.

Maybe it will be forever? Forever is hard to see. I really want this house. The downstairs main bedroom would be mine. The annex could be used as a combination of AirBnb (for income) and letting friends come and stay. (I mean, there’s a separate kitchen in the annex. That would make longer stays less stressful.) The upstairs sitting room would be perfect if we were legally allowed to host classes there.

Once my kids were big I could have grown up parties there.

This house would be so rad.

We are feeling nervous about buying a house before we have a visa in hand. But if Noah can’t get in on the exceptional talent visa and maintain his California salary he can instead get a job with a Scottish company and get a visa that way. He will be able to get a visa. It’s not in question. It’s just a question of whether we are putting money into our investment portfolio hand over fist for the next couple of years before we get permanent settled/citizenship stuff dealt with.

The average salary around here is under £30,000/year. We are going to be fine one way or another.

It’s only ~1/4 acres for the property, but that’s a lot bigger than the 1/8 we had in Fremont. Listening to folks remind me that I can’t get in over my head on wanting a lot of garden that I won’t be able to maintain…

I’m feeling really scared for my future ability to do things.

Tommy lit himself on fire partially because he could not cope with being helpless. So much of my identity is tied up in being functional and capable and strong.

I am scared.

I did 100% of my PT yesterday. Even the dilation. The dilation was really wicked uncomfortable. My vaginal tissue is not in a happy place. I feel scared that my cunt isn’t ever going to really feel better.

I don’t mind my body aesthetically. But I sure wish it was in less pain.

Today we are going to go meet the solicitor who is 2.7 miles away instead of 105 miles away. This feels less stressful. He’s not going to have to be much better for me to think that it is worth not doing that commute. Even though he is a dude and I have my thing about dudes. GU matters, yo. (Geographically Undesirable)

I need to stop typing. My arms are on fire. I don’t know why I feel so disconnected. My family is being great. Jenny’s family is trying so hard. I am really enjoying getting to know her husband; he’s really funny.

It’s just… me. I suck.

Yay Noah

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Today Noah turns 43. I was with him when he turned 27 and for most of the birthdays in between. I like him more and more as the years go by. He’s a truly good man. He cares a lot about what he can do to make the world a better place. He doesn’t go nutty trying to do ALL THE THINGS but he consistently and kindly keeps putting his nose to the grindstone in his areas.

He is consistent. He is thoughtful. He is generous. He’s even funny. He’s pretty. He’s gentle and sweet.

I feel very lucky I get to spend my life with him. He is an absolutely breath-takingly wonderful spouse.

I’m looking forward to seeing another year of his life.

Bragging. (Food edition)

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I have spent a lot of years feeling very insecure about my ability to cook. I was not taught to cook by my family. I showed up at adulthood with some pretty lackluster skills.

Today? I am a fan-fucking-tastic cook. My food is awesome. I am thrilled to make and eat food at this point. It’s flavorful, interesting, and healthy.

Ok, Eldest Child’s birthday dinner was overly rich. I’ll grant that. I am sorry I made Jenny’s family have some aching tummys because of how much fat was in it. I was following the recipe as close as I could from a restaurant meal. It was going to be fatty as hell and they don’t eat that way most of the time.

But usually I cook with a lot of vegetables. There were four vegetables in breakfast. I have worked hard to get here.

*pat self on back*

Progress

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And it’s pronounce pro-gress not prog-ress.

We met a nice lady solicitor in Aberdeen. It was a long day getting there and back and we missed the first train so everything felt more hectic and stressful than necessary. I was not nice to the kids as I mostly flailed myself for us missing the first train. I apologized of course, but that’s shitty of me.

Apologies bake no bread and all that.

I am running out of spoons for “don’t get frustrated and don’t ever let your creeping frustration impact anyone else in any way” without pot.

It’s coming to Scotland!

Anyway, nice solicitor lady. Other than being 100 miles away she seemed like she would be great to work with. I liked her attitude, her mannerisms, the way she answered questions, and the fact that everything we asked was met with an immediate answer and a flip to the page of her hand out where she was getting the answer. Noah’s first choice for visa is a new scheme so she had to look up a lot even though she’s been working with immigration for 12 years. There was one question where Noah had a different interpretation of the text but I think she clarified and got it right in the email follow up. Her rate is noticeably lower than the nice lady we worked with in Fremont so I don’t feel she is overly expensive.

We have one more solicitor interview to go through.

I didn’t do PT yesterday with being out of the house 12 hours. Deep sigh. I will get it done before I go out today. I am trying a new massage place. Fingers crossed. They list it as deep tissue and I did a 15 minute add on of “just my hands” so we’ll see.

I hurt so fucking bad it is hard not to curse all day long at speed. But my kids have asked that we all work on not cursing together because it is going to be a rough transition to school if they keep dropping f-bombs as casually as they do. Totally reasonable. Yes, we can do this together.

An ATM here charged me double but only gave me one set of cash. If I challenge it they will turn off my ATM card. I don’t have PINs for the other bank accounts. This is not so good. I should probably try to get PINs first then challenge it. Ugh. Or, I eat losing £200. Which is less stressful?

I am super weary. I’m glad it is Friday. This weekend is lightly booked. I have stuff today for body care. Tomorrow I am going to go out after supper to a munch to meet folks. (I’m going to have to taxi there and back because it’s later at night.) Munches are sitting in a chair and listening to other people brag about how exciting they are. It’s fairly low energy at this point. I’m not hunting and I’m not trying to catch up with old friends. I miss people. One person, Miss V has been at 90% of the munches I’ve ever been to and I miss her like an open aching wound. I don’t get the impression I am going to meet someone here quickly who is going to have her dynamic intense energy. That’s good and bad. I don’t have it in me to hero worship someone else like I do her at this point. But I miss her. I will miss the way she makes me feel yearning and love and admiration. She is so inspiring. I want to top. I want to bottom. I want to wallow in all the intense energy of power.

Sigh.

But, if I am going to make it here I am going to need friends other than just Jenny and I’m not a knitter. I can’t just make mommy-friends. I need to be a mostly in the closet freak for the sake of my kids, but perversion is absolutely bone deep in me. I need to know other kinky people. I just do. Even if I don’t have the spoons to do anything with it yet.

Bdsm is part of me. It is part of the background radiation of my life. I won’t walk into a party here and have the old timers tell the newbies to back off and let me do whatever I want… but I can make lower key friendships. I can get to know people. They will never witness the full bloody insanity I used to engage in and that’s ok. I don’t think there is space for that here anyway. Not in public.

Noah and I will figure out a public persona together. That will be healthy.

Frankly it will be good for me not to be leaning on the full throated ferocity I established as a teenager and young 20-something. I can’t live up to that any more. Not because I am less perverted, but because my body can’t take it. Damnit.

There is almost no bdsm education culture here! I see a niche… We’ll see!

Aberdeen had decently tasty Mexican food. Their “4 chili” level spicy was nothing to burn a mouth, but hey. If I go back I will ask for double the habanero and maybe there is a way to get some actual heat. I don’t think the Scots in general like to burn their mouths in the same way. Which is interesting because I had a vindaloo that left me with intense burn the next day. It was lovely.

I used to have a stick up my butt about not eating Mexican food outside of California because it always tasted wrong. Then I went to Mexico and found out that Californians do it wrong. Now I am more keen to try the variations I can get all over. We live and learn, yo.

I get to have pot in at most 18 days. I am feeling utterly grateful right now. I feel worn to the bone. I haven’t had any in 3.5 months.

ack, bye

PT

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I did it. I haven’t done the dilation yet. It takes privacy. I should have done it in the bath tub but frankly I am feeling overwhelmed with all the “must do” stuff. I made seven phone calls today. Only four of them turned out to be useful. (Two important confirmations; two appointments with solicitors.)

I feel on the verge of tears. I go through cycles of dealing with my feelings around disability. But the plain truth is I have been in pain for almost 30 years. I need to give zero fucks what anyone else thinks about how I live with that. But I’m not there. I feel ashamed. I feel like I am stupid and pathetic and I should shut up and just work harder.

But I would be this degraded if I had stopped working harder years ago.

It’s a Catch 22.

When Her Sweetness wakes up we will walk over to Jenny’s. I will put one, maybe two plants in the ground because that makes my soul feel better. I will decide after the first one how my arms feel. Middle Child will get to play with his cousins. We will get in our daily walk going one way and we will take a taxi back. We shouldn’t stay very many hours. Tomorrow will be an incredibly long day going to Aberdeen to meet a solicitor. But, this is the process.

Do it.

Rough morning.

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Go to sleep crying, wake up crying. Why not.

Noah wanted me to listen to a chapter of this Buddhist book he gets a lot of value from. The point (very roughly) is that pain and discomfort are lessons and you shouldn’t hide from them you should face them.

But I can’t really get over hearing this from the point of view of being a person who has degenerative, chronic health problems. If I spend all of my time thinking about how much pain I am in I am going to spend my life walking around weeping. And then I am very unpleasant and uncomfortable to be around and people won’t like me very much. I made breakfast pretty shitty because I couldn’t stop crying.

Noah is very much looking forward to retirement. It will mean that he no longer has to do boring work for a pay check and he can instead do fun work for free. He can help people who cannot afford to pay him.

I am looking forward to decades of decreasing ability where I can do less and less of tasks that are basic to keeping me alive and I definitely can’t do any fun extra work because it will hurt my body and decrease my longevity.

I would kill a dog who was in as much pain as I am in. It would be cruel to keep them alive to suffer.

But I need to do everything possible to extend my life. Which means I need to do less work that gives me any pride in myself. I need to do less work that has any physical cost. My coach person was going through lists of things including moving wet laundry from the washer to the dryer and talking about how I need to weigh these costs and think about whether it is worth decreasing my long-term functionality so I really just shouldn’t do any of these things.

But I should spend a lot more time being fully present with how much pain I am. Watching stupid tv to pass time and distract myself from crying… somehow makes me a lesser person. I’m on a full on self-pity trip today, lemme tell you.

I am on palliative care until I die. Most people don’t enter palliative care until they have a few months to live. I am supposed to be doing everything I can to turn this into 30 or 40 or 50 years of life.

Because I owe my family that.

My buddy is right that it’s pretty stupid for us to look at big pretty houses with room for enormous gardens and lots of space to pick up and tidy and clean.

That will shorten my life.

When we have a house I do need to immediately hire help. Or I will shorten my life.

She asked me how many years I think I have left at this functionality. I don’t know. I am in a much worse place than I was 10 years ago. I already demur a lot of activities. I need to spend less time with Jenny than I have so far because it wears me out.

Not because she is bad. I really love her and I’m glad I’m here. I’m glad I will get to spend my declining years getting as much of her company as I can physically handle. But the amount I can handle is lower than what I’ve been doing. My pain levels are absolutely through the roof right now.

And I feel ashamed. I feel stupid. I feel bad. I feel useless. I feel like I can’t do anything right. I am supposed to work and I am supposed to not work. I am supposed to do things that make me feel good about myself and I am not supposed to waste spoons.

When we go to Portland I can’t bebop around spending lots of time with everyone I love. I need to see people once or twice a week and that’s it. Especially for the first three weeks when I am alone with the kids and I have to do all the grown up work. I don’t have anything left over to give to friends and that hurts.

Yeah, I need to do the PT exercises more religiously so I preserve what strength I have left. But there is no more regaining of strength. I’m not really ever going to improve. I’m just trying to slow the rate of decline.

I am feeling incredibly bad about myself today. What is the point of spending this much money on help and being this idle so that I can extend my life?

I would kill a dog who was in this much pain.

PT

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I did most of the non TRX stuff yesterday and all the TRX stuff today. I punted a little on the inverted row with knees bent. I did one rep instead of three. It was my last one and I haven’t done these exercises in months.

I am so fucking tired.

But my joints feel slightly less locked than they did when I first got started. I know I need to do this. It hurts. It is hard.

But. I did it. The only PT exercise I haven’t done at all yet is dilation. I will try to do it in the morning. I’m only going to do that one every three days. It’s really emotionally hard.

I do want to live as long as I can to stay with my family. I know I have to do this.

Let me find my crystal ball.

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“How long do you think you have at the current level of physical function, and are you taking that into account as you look at the next x years of your life. That house seems to have a lot of steps, for example. Besides getting more rest because you consciously rest, are you thinking about how your environment impacts you in the long term? For example- in our new house we put a 3/4 bath on the main level, and planned a path to retrofit an elevator if necessary in the future. The doorways were planned to be wheelchair friendly on the main level. We’ve had enough short- medium term health things that have required avoiding stairs to know how important that is. Are you planning for the house to help you be in less pain?”

This is a hard one. I have absolutely no way of predicting when my body is going to fail. But yes, I need to be planning around a ground floor bedroom for me even if everyone else is up stairs. No doctors have been able to give me a timeline on my failing body. Frankly mostly they express shock that I am still moving.

I’m not planning around this how I should be.

I need to be honest that the reason I can handle coping with this apartment only being cleaned to the level the kids and Noah want to clean it is because it is half the space we are used to and we are leaving soon so the corners of muck aren’t my problem.

I am way past the point where some rest is going to restore my vitality. My vitality is gone. I am playing a losing game until I die. But will that be a fast five years or thirty years of a slow but steady decline? Will I last fifty years?

I don’t know. I know that my great grandmother was considered too mean to die. I like to think I will live long enough to be a torment to my grand children. I’ll be the grandmother who says no and means it. Ha.

I’m actually finding this upsetting to think about. I don’t know how long I will have this level of functionality. I know that keeping as much movement as possible in my day to day life will increase how long I keep this level of function. Any movement in the direction of being sedentary causes me problems. The more I sit the more I hurt. Stairs are a mixed bag but walking upwards of three miles a day really helps. My hips hurt, but they hurt more when they are locked.

I’m really sad thinking about the ticking time bomb of my body.

I travel like I do right now because I will almost certainly not be able to do this when I am old.

This is why I hired her

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“What makes you so special as to not need the same care and consideration as other people? (And I don’t mean the experiences you have had, I mean what do you think is intrinsically so special about you that you don’t need care and consideration. I don’t so much care what other people have told you as what you tell yourself at this point)”

Well, fuck. Thanks for putting me on the spot. Hahaha. Uhm, err…

Ok, this is actually kind of hard to admit and I feel awkward and stupid and silly. I do actually think I am special. I do actually think I am tougher and stronger than other people. I keep going and I keep working long after other people stop because they “can’t” any more. I mean… other people have phrased this in ways that I like and that I agree with, “You have all the force of personality as a star being born.” Yup. I mother fucking do. (Sometimes people say nice things to me in addition to shitty things.)

I believe I am capable of working no matter how much pain or distress I am in. There is a point where I slow down and there is a point that I stop but that point is long long long past the point when all medical tests say I should have stopped months or years ago. I am absolutely freakishly strong. It’s not that I can dead lift more than other people (I can’t) it is that I have a single minded focus and ability to put aside all care for myself and WORK. I am not always a nice person when I do this.

I believe this is part of how my ancestors, who were frankly despised folk a lot of the time, kept surviving when lots of folk wished them dead. We can put our heads down and work and make it through and fuck you very much.

My medical support team (there are a lot of people in it) have been trying to talk me into doing less for literal years. They have been pointing out the growing irreversible damage and hoping that noting this will slow me down. It has had… some effect on my behavior. But then I pick up a project and blow through things like you wouldn’t believe.

Some folks have asked me if they could hire me to do art in their houses. I said no. The way I work is extremely deleterious to my body and you can’t pay me enough to cover the medical care I need to survive it so I can’t give that labor to you and put the strain on my family. It’s not fair.

Why do I take such pride in cleaning my own stupid house? Because when people walk in and gasp and say “Oooooh, I can’t believe how clean and tidy and inviting your house is” I swell with pride. I did that.

I feel like if I am paying someone else to do the cleaning I don’t have as much right to the pride. I want that pride so badly.

My mom spent a lot of my childhood crying because she didn’t have the time or energy or money to have a home she could be proud of. That was a major wound for her. In some way I feel like I take so much pride in my space because I am trying to heal that wound, that isn’t even exactly my own.

But you and Jenny and Pam are right. Paying house cleaners is cheaper than paying for physical therapy and massage and chiropractic care and acupuncture and therapy for my kids after I have hysterically screamed at them to clean their shit up.

This sense of pride really has to evolve. I am struggling with that. It is hurting me and my family at this point.

I can hold on to being nice when my pain level is consistently above a 5. It’s hard and it takes effort, but I can. When my pain levels are higher than that [meaning a lower number on this scale] (I like this scale: https://www.theacpa.org/wp-content/uploads/2017/08/Life_Scale_3.pdf ) I don’t hold on to being nice very well. I don’t do very well when I can’t do work. I feel bad about myself.

Like, I should have tapped out of the road trip long before it finished. I was at the point of having a black ring around my vision because I was damaging my body so much that it was impacting my ability to see. I was a bitch. I had no patience. I slapped my daughter when she sat down to rest and I thought we needed to finish work before I got to rest so her sitting there casually was an absolute affront. I am not saying that to be prideful. Slapping her was wrong. But I don’t hit my kids on the regular. That was a major department from my normal control.

I need to change my perception of my ability to work because I need to not get to that point again.

What do I tell myself that makes me so special? Why do I deserve less care and consideration? I tell myself that I am a tool. A tool with an absolutely absurd ability to accomplish work. And you don’t love your tool. You use them up and throw them away. The trouble is that my family really does love me. They don’t want me to be thrown away. They want me to be around for decades. If I continue to damage my body like this… I won’t be. It’s just a simple, literal fact.

“In my own struggle with ADD I’ve learned that sometimes wanting to change the system is just a distraction from whatever I’m trying to actually get done. It’s a handy distraction I can really get involved in and suck up all my time instead of just doing the other things. I consider it a red flag to get too bogged down in reworking the system. Not that l don’t ever change it, but I try and wait to work on the system till after I’ve pressed forward on the thing I’ve been avoiding. If I still want to change it, I will, but often I don’t want to any more”

I know what you mean. My problem is that a lot of things are falling through the cracks right now because for years I had an excellent white board system that kept me from forgetting up coming stuff and currently I am trying to write things down on paper and then I never look at that piece of paper again and… that’s a problem. I do need a system. I am not able to have a wall system while we travel.

I am trying to set up Omni Focus (a computer based tracking system Noah loves) because I am on my computer and this lets me set up things with greatly delayed notifications so everything doesn’t feel like “Do it today or it will never get done.” Yes, in some way it is a distraction but it is also solving an actual problem I’m having right now. I’m struggling with keeping all the various levels of schtuff in a place where I go back and look at it. It’s been a problem for the past six months since we took the white boards down. A lot of things have fallen through the cracks. The kids are doing ok with their level of commitment on paper, my task lists are really complex and have many sub layers. I need a new system. It’s not a distraction it is important.

Also, I am an organization nerd and I am having fun thinking through whether things are parallel, sequential, or single action. That’s a useful way for me to process the things that are going on for me. It’s also forcing me to think through things like: physical therapy isn’t “one more stupid thing to do” it is mandatory for me to feel good and be happy. It is solving a major life goal because I can’t be a good mother or a good wife or a good friend if I feel bad and I am miserable.

Cleaning the table after meals is one more stupid thing to do.

Getting shoes that don’t rub me raw and give me terrible blisters in the rain is not one more stupid thing to do. It’s part of making sure I feel good so I can be happy.

It’s useful to try and tell the difference between these tasks? I’m trying to think about tasks in terms of what goals are they serving. I don’t think I have done that in this way before. The web copy on the Omni Focus website is absolutely nauseating in how it phrases things but it isn’t wrong. Mind mapping my goals in life is really important. Thinking through how my behavior enables or supports or inhibits different goals is really important.

Like: I truly want to rewrite Outrunning Suicide before the kids start school. I would like to co-write it with them. That means I have 14 months. So I’d better figure out how to schedule that work now. Or I will run out of time and never get around to it. I want to write a book that is teaching life and coping skills for kids in their current age bracket. I can’t think of better co-writing partners. (I briefly mentioned to them quite some time ago that I would really appreciate doing this and they said they would really want to help me do this. Both kids want to help with the phrasing and with illustrations.)

I have a lot of things I get distracted by in my head. It’s useful to be able to map it out, put a due date on it and stop thinking about it until it is time to think about it. Right now with the paper method I am having to keep thinking about it or I will forget entirely and never do it. So we’ll see.

Thank you for challenging me.

PT

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I did all of the band exercises. I’m jimmy rigging one of them because the original band broke and I’m using the one I have left for all of them. So now I can do one arm at a time instead of doing them in tandem. My shoulders are in bad shape. The grinding was absolutely gross to hear. Adhesions R Us.

Bird dogs

Rock backs (I don’t know what this is actually called.)

Wall sits

Squats

Other yoga-tastic stretches to loosen up my hips and shoulders.

Neck stretches

My wrists are in absolutely terrible shape. Bird dogs hurt.

I can’t list stretches. I am bad at remembering the names. But I spent half an hour working out my body after we did about 2.6 miles walking today. (My tracker shut the fuck off so I don’t know precisely how far we went but I know how far the store is.)