shouldn’t

I hurt.

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.

shouldn’t

a wish list

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.

a wish list

i don’t want to know

In a couple of hours, the result of this thing will be announced.

I was trying to explain this to Daniel last night. About why I feel scared. He sees things in very black and white terms, and his opinion is that it doesn’t matter what the result is anyway, because all the matters is what the few super rich people who support the politicians want. And while he may be correct about it “not mattering” in the whole non-binding part of it; and possibly also correct in that those rich people who talk into the ears of the politicians may influence any possible legislation that they try to make… it does matter.

It matters to me, and so very many people. Not the law part, but the “opinion” part.

If you remove any religious arguments, because we are a secular society; and you discard anything that is related to child-rearing, because in the 21st century parenting happens in many different forms and many of them are not a formal marriage between a man and a woman…. then you are left with the simple fact that marriage is a legal state which confers many benefits and which de-facto relationships have been clearly demonstrated to not give you… and some people are allowed the privilege of this status and some people are not. Fixing that should not be a matter of opinion.

We just want it done.

But in forcing this opinion poll, we are now forced to have a loud and public record of what the entire country thinks about gay people and their families. You can’t avoid the result, because it will be everywhere.

But what if we don’t want to know? Sometimes you purposely don’t ask a question if you don’t want to know the answer. Of if you are worried that the answer might be something you don’t like or can’t handle, that might hurt you or make you sad or angry or anything else. Sometimes it is easier and more peaceful to just live, and surround yourself with like-minded people and shut out all the others.

That choice has been taken away here.

I don’t think I’d be ready to ask, if it was up to me.

That’s why I’m scared. Because I don’t feel ready to know the result.

i don’t want to know

it’s a yes from me

It’s a yes from me.

Obviously.

By this point, a week before the end of voting closes, I’m really kind of fed up of the whole thing. Actually, not ‘kind of’.. I am fed up. It’s exhausting experiencing all of the things that one is prompted to feel when seeing people energetically and eagerly supporting and encouraging others to support the Yes campaign, and it is exhausting and disheartening and frustrating experiencing all of the feels when you see some of the incredibly mean-spirited and outright false stuff that the No campaign are saying in their attempt to convince people that they’re right. Even more frustrating and incomprehensible is that people actually seem to believe some of the patently ludicrous stuff they are putting out there.

And while I want to hope that change will happen, I have waited for too long and seen too many people say and do cruel and damaging things to LGBTQI+ people and their allies for far too long to actually believe that it will. Seen too many times where it seems like a problem has an obviously better and more humanitarian solution and people keep choosing the other thing. See the reality that the government could have just fixed this without having to spend a fuckload of money on a non-compulsory, non-binding opinion poll that’s given all the people who hate gays the opportunity to shout their propaganda as loudly as they want and it’s fucking fine because it’s their opinion and they have a right to campaign for what they believe and you have to respect that. But they didn’t.

And actually, no. I don’t have to respect your opinion. I respect your equal right (somebody fetch Alanis) in our society to have and even express an opinion; that does not mean I must respect whatever opinion it is that you hold. There’s a big difference. Further to that, while I agree that you can have your opinion and even that you should be able to express it without fear of persecution, I don’t believe that your right to do it means that you should do it. If you can’t say something nice, don’t say nothing at all. Shortcomings in the rabbit’s grammar aside, isn’t this still a valuable lesson to hold and practise? Just because something is your opinion does not give it some kind of sacred status that absolves you of the basic obligation not to hurt other human beings with your words and/or actions, nor can you rebrand false information as an opinion to magically make it a truth. Lies are lies, there is no ambiguity about it. They are not “alternative facts” or “opinions,” and trying to claim that they are is clutching at straws trying to justify your lies in order that you don’t get called out for it.

But when it all comes down to it, I just simply do not understand why the prospect of two people who love each other being able to marry each other is such a threat to some. It changes exactly nothing about any other existing or future marriage or relationship, it only makes a difference to the (potential) spouses in question and their nearest and dearest. I saw one person claim that she was going to vote no because one of the reasons people were saying you should vote yes is because LGBTQI+ people and young ones especially were at significantly greater risk of experiencing depression or attempting suicide, but getting married is not going to change that so it’s really not a good reason to vote yes. How can a person be so willfully and blatantly disingenuous? Of course getting married is not a cure for mental health issues and no one is fucking claiming that it is. What it does do is helps to remove part of the reason people end up feeling that way in the first place, i.e. that they are continually shown that they and their relationships hold less value to the community than those of straight people.

Anyway. It’s not like I’m saying anything new or even unique. Millions of us feel the same way and millions of us have two more weeks to wait to see how this shitshow turns out. And then to see what the inept twats in our government are going to do with the outcome of this not-sticky shitshow. It’s such a festive time of year.

Here’s more I wrote earlier on the topic.

it’s a yes from me