i am facing my husband.
my hand rests on his chest, over his heart, and he holds my hand in place with his own.
my skin is damp, and the breeze from the rainy weather outside is cooling and refreshing.
my heartbeats and my breaths are accelerated, but slowing,
and i hear the sounds of cars passing on the wet roads
and daniel’s soft almost-snores as he dozes
and I wonder yet again at how magnificently unlikely
and stunningly divine this scene is.
a baby boy is born in copenhagen in november 1979.
almost a year later in november 1980, a baby girl is born in melbourne.
they are not even learning to speak the same language,
and even if they did, international telephone calls are still an uncommon and expensive thing.
the technology that would one day evolve into the modern internet is at the same infant stage of development that the danish boy and australian girl are.
how could you see these two babies, and ever imagine that enough changes would happen in the world for them to find each other? for it to be relatively easy and cheap for them to communicate with each other daily, from home, and get to know each other well enough that they could fall in love?
for a lot of people, the marvels of modern technology are a cool development that provides a lot of opportunities to enrich their life. for us, the marvels of modern technology are but one of a series of events that were crucial for us to end up where we are, now.
to consider the relative probability that any of those events would happen — that all of people involved were in the right place at the right time with the right ideas and skills and resources — let alone that all of them did happen, seems like we have played a lottery with astronomical chances of success.. and won, an embarrassment of riches.
it makes me believe.
it’s not god in the christian sense, or even god in that i see it as a deity, discrete and apart from what we are.
but i can’t feel the beating of his heart and of my own heart and not believe that something, somewhere, guided us to each other.
Been feeling a bit .. well, a bit of lots of things. We went back to the doctor, Mum needed some prescriptions and I had to see what those blood tests from last week turned up. Or if they turned up anything. And, well. They did. Just not where I was expecting.
He did a range of antibody tests including ANA, and they were all negative. This rules out a lot of autoimmune/rheumatic conditions. The two things that were not negative were my ESR and CRP. (In fact, I have never had a blood test where those two things were within normal ranges.) Of course, these are very non-specific, and when you feel like I do but are negative on everything except those, what does non-specific equal? Fibro. Which pretty much nothing can be done about. Well, some people reckon certain antidepressants can have an effect but I’m already on a pretty high dose of one, so. He did give me a referral to a different doctor, technically just a GP but he’s specialised in seeing people with Chronic Fatigue, Fibro and other “we don’t really know what’s wrong with you so let’s just give it a name to shut you up” type conditions. So I will get myself to that guy and see if he can tell me anything different.
Only thing is that’s actually the “good news” part of the whole escapade. Turns out some of the general tests they just run for fun when you get blood tests flagged some really bad results for liver function. He says the most common cause of this is fatty deposits in the liver. I am having an ultrasound this afternoon to look and see if I have such deposits. Basically you fix it by losing weight. Ok, I said. Let’s assume it does turn out to be this. I am not opposed to exercise, but the reason that I do not do as much as I could or should is because I fucking hurt all the time. See: “fibro.” It’s really fucking difficult to motivate oneself to be that active when doing it leaves you in large amounts of pain or almost not able to move. In which case, he says, you basically have to attack it by a diet of starvation. Eat nothing nice, ever again, he said. Ok, he didn’t say that. Go extremely low carb, he said. “No potatoes, no pasta, no rice.” Oh, NICE, you just listed three of my four favourite foods. The last one being chocolate which is also not really recommended.
I don’t really mean this, really, but.. part of me almost hopes I have some kind of fucking tumour and it’s just simple old cancer which they could cut out and then my liver could grow back and everything would be fine. (I know cancer is not simple.) I would not describe myself as a carb junkie or anything, but.. most of the things I eat feature them in one form or another. Potato is my default vegetable. I love potato. I love pasta. I love rice. There is an anecdote about me, when I was maybe 10ish or so, my grandparents took me out for dinner with them to the Big Pineapple. It had a smorgasbord. They were kind of horrified and embarrassed when on one trip to the food section resulted in me returning with a bowl full of plain white rice. Apparently, it is supposed to be an accompaniment to all the other stuff there. A side dish. What-the-fuck-evs. I like rice.
So switching stuff up and cutting out carbs is a pretty fucking radical thing and it seems like a really fucking cruel twist from the universe. I already don’t drink and don’t do drugs. I already struggle to find a single meal that I can make to feed five people, and I am the most agreeable out of us all. I recently got really strict and said that people have to have what is cooked or else they go hungry. I made them write me lists of things they don’t like. If a thing is not on the list then they are not allowed to decline to have it. If they only like part of a meal then they are expected to eat all the parts they like and we will compromise on the rest. And this isn’t going too badly. So, hey. LET’S THROW A FUCKING WRENCH IN THAT. And on top of that, switching out to all vegetables all the time is going to be an expensive switch. Ok, there can be meat too. Lean meat. (Which I am pretty sure does not include bacon. Assholes.) But again, meat, not exactly cheap. And me, not exactly in full operating order and able to whore myself out in return for currency.
Who wants to feel like a fucking burden?
The reason this NAFLD is a problem is because it’s basically an early warning for further damage. Like developing into full on cirrhosis and liver failure resulting in death and/or increased risk of hepatic cancer. Of course, I did not need elucidation of what death by liver failure looks like. And I don’t want that to happen. Trying to assume that it will be this NAFLD which is the least bad outcome and yet it represents such a huge fucking change. To 37 years worth of taste and diet and cooking. To forcing me to have to double up on meal preparation. It would not be a stretch to say I am feeling rather unfairly personally victimised by my liver right now. It’s not like carbohydrates are bad for you. It’s not like it was a known unhealthy thing that I could have made a choice to not do. Everyone eats sandwiches. Everyone loves a nice spag bol. (Fine, not everyone. But most people.) I have chosen to avoid the things that they tell you are bad. I don’t drink. I don’t do LSD or heroin or even fucking weed. I wear sunscreen and avoid going out during peak UV times. I wear a seatbelt. I wash my hands after I pee. I don’t drink a whole lot of soft drink and I especially don’t drink the ones with artificial sweeteners. Ok, I do have one cup of coffee each morning and I do eat some chocolate. But I didn’t expect that was going to make me have a serious liver problem. And yes, I do not do as much physical activity as is recommended. But as I already pointed out, there’s a fucking reason for that.
Sometimes I feel like it would just be easier to die. I’m not suicidal. I’m not looking to go and kill myself. Just seems like it would be less complicated for all involved if I do have something that is going to take me out. But I am scared. Not of dying. But of Daniel not being there. Living or dying, hugely scary things, except for when he is there with me. His hand is the difference between the cowardly lion and the fearless warrior.
Like, a lot. In a lot of places, a lot of the time. My neck, my shoulders; those are normal and those have been problems for me pretty much forever. Which I have always assumed is because my spine is no pulling it’s weight, so to speak, and my muscles and trying to compensate. But muscles are not designed to do the work of bones.
Over the last year or so, the catalogue of body parts that hurt on a regular basis has expanded considerably. My hips and lower back and gluteal muscles have become a pretty much permanent fixture in the list. It is not unusual to wake up with them already aching. There is no bounding out of bed ready to greet the day with enthusiasm and energy. I carefully sit up and prepare myself to stand and get a supporting hand-hold on the bed or the windowsill. And then with a soft grunt, I do it.
I rarely bend to do something now without first bracing myself on something first. Where I used to move between tasks every while to stop things from getting stiff, I now move between them because the resulting pain has reached a “I can’t quite ignore this” level. When it is a particularly bad day, the pain radiates from my lower back down to my calf muscles. Did you know you could get knots in your ass? Not cool. The sides of my hips are tender because of something the physio tells me is called bursitis. He does a thing to help loosen all the tissues around the side of the bone there, but that in itself is not particularly pleasant. He puts deep, firm pressure onto the tender points which makes me sick my breath in and concentrate to keep still. Afterwards, it does feel better, though. I can walk for a little while without every step causing tendrils of shooting pain around the sides of my hips and my lower back.
The hips are the worst, but my upper body has weakened too. Reaching up or trying to lift heavy things is a thing of the past. We got a new microwave and I could not carry the box up the stairs. Stephanie did it. But not that long ago it would have been something I managed with ease.
So I have been noticing this happening and also noticing that many of the people in the Scheuermann’s Disease groups I am in on Facebook have similar complaints. So I have tried to keep moving as much as possible without making things feel worse and been thinking that basically I have reached the end of the relatively complication free time I have enjoyed up til now, and these are the result of a body trying to compensate for it’s main support structure being not quite right.
The number of things I struggle with now and the number of things I can’t do that I used to be able to do is overwhelming and dispiriting when you think about it in great detail. I am struggling to manage with the normal household tasks involved in being a mother and wife. Even ignoring all my head problems, the prospect of being able to find some kind of external employment that generates income but does not generate pain and exhaustion seems impossible. What can I do when I can’t stay in any one position for more than a quarter of an hour without the pain ramping up to the non-ignorable level? And so I made a choice to try applying again for the DSP. I have found out a lot more about the inner workings of the process and discovered that you must have professional documentation for basically every type of task you cannot do or cannot do without pain or can only sustain for a short time. (They don’t tell you this though.) So to begin with I went to see the doctor. I thought maybe getting an updated x-ray would be a good start. (They don’t like medical data older than 2 years apparently, and the last spinal x-ray I had was in 2015.)
Except.. once I described all that I have had happening and the ways in which I have become weaker and unable to do things normally, he said.. “Well, wait. I don’t think this is necessarily to do with your back. The symptoms from the kyphosis shouldn’t cause you that much trouble and not that quickly. Sounds like something else is going on.”
He has ordered a bunch of tests for various auto-immune/inflammatory/jointy type things. I have to go back to see if they show anything.
I really don’t know what to expect. See, a common and almost universal thread through the fb groups is that people are struggling and having similar types of problems as me but when they try to speak to a doctor about it, the doctors invariably say, “..but Scheuermann’s shouldn’t be causing that type of pain.” And they are basically dismissed as being whiny hyperchondriacs and left to continue struggling with the added bonus of having their experience invalidated by the people they go to for help.
So it would be great if his tests show up something that could explain this rapid decline into decrepitude that I am experiencing; but a large part of me is really expecting that they won’t, based on the experiences of hundreds of others in the same boat as me. I do understand that a correlation does not equal a causation and just because we all happen to have SD and we all happen to have debilitating pain in similar places does not mean it is caused by the SD. But I also believe that when there are a lot of people with the same condition reporting the same experiences, hearing “but it shouldn’t” does not cut the grade, ethically as a medical practitioner who is essentially telling the patient “my books say differently so you are wrong, go away,” nor scientifically – when patterns like this can be seen but not explained, they warrant investigation. But each of us around the world see our own doctors and they don’t see the patterns and probably don’t have the resources to make research happen, anyway.
And even if the tests do show something, that is not a guarantee that it could be fixed. Sometimes I envy those people who have had healthily uncomplicated lives and who have the untarnished belief that when something doesn’t feel right in your body, you can go to the doctor and they will fix it for you.
The last week or so it feels like I have constantly been saying no to people. No, you can’t have that. Or that. Or that. Not that either. I am not a fucking millionaire, why do you seem to think I am? No. No. No. Must you keep asking? I already said no to that! That was [insert sibling name] that asked, not me! Oh! That makes it completely different… NOT! NO!!
So I decided to make a list of what I want. I don’t ask anyone for these things because there is no one to ask. On the plus side, there isn’t anyone saying no to me. On the not plus side, not having anyone higher up the chain responsible for providing for me means that I am all too aware how unlikely it is I will get some things, ever, and others for at least a very long time. And you know there’s a whole depressing pathetic spiral about misshapen bodies that are falling apart and making even the simplest of tasks difficult and the idea of being able to do something meaningful towards achieving these things my own personal Everest. (Except in this analogy I am not Hillary, I am one of the people who dies before they get to the top.) Anyway. Wasn’t intending to go that path today.
· A house. It has at least four bedrooms, decently sized ones. It has network cabling throughout, ducted vacuuming, reverse cycle air conditioning (super energy efficient of course), a fuck-load of solar panels all over it and one of those fancy Tesla battery things. There is greenery in the garden but it is super low maintenance. There’s shade, and a medium sized pool with one of those clever natural UV/charcoal/bacteria filter systems and a solar powered temperature control so the water is pleasant without having to be in direct sunlight. Anyway, if you are gonna build me a dream house you should probably look at my Pinterest board on the subject.
· Two brand new perfectly working cars, with the fuel efficiency and electric and whatever. I don’t know about the car technology but I want the best balance between performance and environmentally friendly that is available right now. Daniel’s one can have turbo or stripes or something so it is manly. Loud speakers that go doof doof. One of those exhaust pipes that is noisy and men will tell you sounds amazeballs and women will be like.. it’s noisy. I will just have the plain quiet kind. They will of course do all automatically Bluetooth with our phones for music and nav and stuff. I would like my car to be dark charcoal grey, I will have to check on Daniel’s colour pref. Oh and they need to have a remote control that unlocks it and goes bweep bweep when you forgot where you parked. And darkest legal tint on windows because The Sun.
· A Google Pixel 2 or a Samsung Galaxy S8. I’m not fussy, I will take either. I would of course like the biggest storage version. Not the XL or Plus or whatever with the bigger screen, I like it to still fit in my hand. And one for Daniel too. Black for both of us.
· I have fairly recently had a new tablet that I am pretty happy with but I would not turn down one of the large iPad Pros with an Apple Pencil for artistic purposes. One for my mum too would be cool. I would like to have another Galaxy Tab S3 like mine for Daniel to have because he has a few years older version. He does not need the iPad. He is allergic to apples.
· New computers for everyone. With all the best everything. There are a few special requests. Daniel’s should have adequate power and processing to easily support dual monitors. Which are of course huge and amazeballs. One monitor each should be fine for the rest of us. Can we get them with really clever adjustable arms for the keyboard/mouse and monitors as well as super ergonomic chairs suited to each of us. My mum’s one should have a smaller extra monitor with a webcam on it that can be placed at floor level for when Dora needs to Skype people. Or maybe a tablet of her own would be better. I don’t know, I shouldn’t have to figure this out, I am the giftee. We all would like generally awesome keyboards and mouse but Daniel should have the most kick-arse gaming ones available, with macros and super fast clicks and shit like that. Headphones too. Super comfortable ones. Wireless would be great, can you get that nowadays? Them for everyone. (Not Dora, they would not fit her very well.) Also, someone else will come and set all these up in our new house so that Daniel doesn’t have to do it but they have to ask him all his preferences for network settings and things like that and do it how he says.
· We will have a puppy and a kitten who are born on the same day. I am not exactly sure what kind of puppy but the kitten will be a Burmese or maybe Burmese x Ragdoll. Or a Bengal, cause they are clever. And we could take them for walks together. They can have like a special plumbed in litter tray that basically is a toilet for cats and dogs. I don’t know if such a thing exists but you can invent it. Also in our house you should build some of those cat walkway playground things, because those are cool.
· A machete. I don’t really have any need or use for one, I just want one.
· Chocolate. Of course. I shouldn’t really need to include this in the list but anyway.