More health and costume

I saw my GP today and explained my fears. That while I am still getting my tests to keep on top of the Rheumatoid Disease that outside my core team that it might mask other issues.

And explained that I have not ever had a succesful A&S visit. Because of assumptions about my ability to recognise the source of pain and other issues that are particular to people in my situation.

But I now have some help for the Fibro and a little extra short term help to enable me to get back to the stretching and exercise that helps.

And am reconciled to the fact that after 17 years of real pain signals my brain is a bit overwhelmed and is perhaps not shutting up for pain that isn’t so much not there but shouldn’t be as bad. Also I spent 99.99% of that or more without pain relief. Even when I needed it. So now I get to stop being hard on myself.

Yesterday did see some unpicking and restitching of a Padme Light Blue cloak. Today is for stabilising the seams so they can stretch safely but also keep the seam allowances in place.

So I am feeling a whole lot better with a plan for going forward.

I don’t know what i expected

But I did not expect to have fibromyalgia diagnosed by my rheumatologist.

If I wasn’t wandering around with a cough for the last year and wasn’t pretty sure my broken rib has made a bit of a mess in terms of muscle spasming in my torso I think I’d still have trouble with it as a diagnosis, but as much because of the extreme misunderstanding of it, as actually having it. Like it’s hard enough to have chronic illness let alone one that is basically your body SHOUTING instead of hinting that something hurts. People just hear that it’s not real pain caused by real reasons.

I mean I can give quite clear reasons for why I hurt where I hurt right now. But I can’t get it taken seriously. I’m coughing multiple times a day, it’s productive but apparently not preductive enough to count. But I went through this with my kidney stone too. I wound up in an ambulance and still not believed at the hospital.

And why? Thought I was drug seeking.

So no, I’m not exactly happy with a Dx that means more pain and less treatment.

(edited to add: I should state my rheumy is good, she didn’t dx to dismiss my pain but to help explain why I am so tired and so sore all the time outside of the damaged joints. It’s just as a disease it’s possible to mask potential future issues from my Rheumatoid disease-causing I have more nodules so it is definitely not confined to joint spaces. My cough might be asthma, it might be lingering viral stuff, it is not bacterial, but it’s aggravating my rib and so I know I’m sore all over from that. I’ll just tired of being sore and tired and it’s going on so long it just has begun to appear normal.)

congrats here’s a cold

I realised I have been able to travel three times this year thanks to friends offering sleep space and more. So fantastic.

Disability is incredibly isolating. And once upon a time Social Media was a lifeline. Now… well with how timelines are manipulated it’s quite the opposite.

It’s easier than ever to find another disabled person on the other side of the planet, but connecting to friends and family? Totally relies on how their SM feeds are set up. There is nothing we can do as individuals to be part of that. It is up to everyone else to know how to tidy their feeds.

It requires going through ad preferences for one, which can be overwhelming if you haven’t had a look in a few months. Every single like or click on a post winds up affecting that directly. And thus fills up your feed. And actively choosing “hide post” and any other directions after that to either hide the person or the content. It’s a constant. Not a one off.

Anyway. I do currently have what feels like the start of a cold. Not surprising. I also have been having skin issues- any scratch or nick in my skin becomes a super enticing place for bacteria that normally are perfectly happy as background actors.

So time to have a rest. All I want to do is eat and sleep. So pretty sure it is indeed a cold.

a bit behind

Currently trying to play catch up with cleaning, it’s a bit tough though as my cough turned a bit weird over night. I had a dream about chest pains and even woke myself up coughing. Today it feels like I have some conjestion and I had to use my inhaler- it’s something I use rarely.

So taking extra care today, and am trying to learn to relax when not asleep.

So yes, I have terrible sleep. And with my disease there is extra pressure to be on form. Every moment is to be used and anything less is not good enough.

So the idea of just lying down and watching TV is super difficult to think of as anything but a failure.

I think I need to do something though.

So I haven’t really been able to work on my book, except to confirm I think I have covered all the stitches already so it’s a matter of making them look nice 🙂

everything is a careful balance

I’ve been able to walk much more easily recently. And this is great. However it’s been a bit tough and there are multiple factors.

One of those is finding that line where an activity is helpful and where it starts to take up time/ability that could be spent living in other ways.

It’s hard to really understand until you start feeling like you are hoarding every step and every tap on the keyboard.

So for walking I had to accept a really really really limited start. Literally around the block. This was due to pain immediately and pain further in the day/night.

I can’t exercise my RA away, but what this is for is general health. Yes, we still have to think about heart health, about everything that comes with being a biological entity.

We don’t get a reprive from anything. in fact there are higher rates of some diseases due to all those inflammatory markers hanging out systemically.

Anyway. I’m really happy with the walk I am doing now, it’s long enough to have an impact, not as much as I’d like for my former self who would want five times as much, but not so much as to take away from the rest of my life.

That said, a trip to the shops and the walk means I’m pretty much useless for anything else for the day.

disease is a rogue app

If you have ever wanted a new phone because it was getting slow, or just didn’t do what you wanted, or stopped working, imagine having to keep it. Having to become your own maintenance crew, having to make changes that means you are not as connected to everyone as you want to be. Having to get technical support so often yet not as often as needed.


Having an invisible disease feels like there is a rogue app that is hidden. Rogue apps hog data but they also drain the battery. They even put a drain on memory. Over time that battery wears out, as it does for everyone, but it’s faster.  It’s part of the operating system, but it is part of the code and trying to safely remove it takes a specialist.

There are apps we love but have to remove because we can’t afford the cost they have on data and battery, but we have to as they are the only ones we can uninstall. There is usually a short immediate relief, but pretty soon we are back to being vigilant about the state of the battery, and struggling with trying to start up each app, and losing productivity due to not just any one of these, but all.

And we can’t reset. We can’t switch bodies. We just have to keep going.

Specialist technicians have their place, they spend years learning the code, but like any technical support call it is never as easy you think. This might interfere with your other apps but you won’t know until you test them all.


The analogy works because most of western society, and beyond, now has a phone constantly with them. They are vital, they look after our social life, they let us know how to get places, the are vital now. And even more so for people with disease and disability to access services safely and quickly.

I have an invisible disease as well as an older phone. It too runs slowly, is reliant on a battery that doesn’t charge well and I am stuck with it as there is no other option on the market that works with my disease being degenerative. On top of that, I just can’t afford the upgrade to a new phone or plan. I have had to turn of most apps everyone else I know uses every day. But I need my phone. I haven’t called emergency services often, but I should.

There is further metaphor in there. My fast draining battery, my rogue app that keeps me focused on it or it goes out of control, and it still going out of control (not as often) it all leads to not being financially able to invest in upgrades that could help.

And I think this is part of the feedback loop that eventually leads to isolation.

nerve test done

It was definitely not fun. Mainly because the tendons in my palm are so tight. I do now have a frame of reference for a really weird thing. My right little toe occasionally feels like it is being jolted with electricity. And using the test, it’s about the same level as the 23.3 near the rist and 70ish near the elbow. But it lasts for about 10 seconds. I did feel sick, it’s just part of my pain reaction- nausea. And I was wobbly. But I’m definitely fine now and was about an hour after.

So regarding my hands. Only on the low side of normal, so this should mean no actual nerve damage.

This is fantastic. I was really worried that this was a case of why bother trying to save my hands, but I now can be pretty sure that if I try and do the hand therapy exercises (I got a single sheet the very first time I was diagnosed, nothing since) it should be worth it.

I still think it’s mainly because my bones have rotated at the elbow in the same way they have rotated at the wrist.

Also as mentioned my tendons in my hands are tight, and so could be pulling out of alignment as well. So my concern about surgery destablising my wrist more seems to be supported. We’ll see. I have my ortho. appointment in a few weeks.

Now I can feel good about delaying carpel tunnel surgery. The trouble is injections really do have a marked effect. But steroids do break down tissue. Therefore having another injection could cause me to actually need the surgery.

So.. I guess protecting my hands to prevent tangible damage is still the way to go.

So if you see me walk with may hands up near my chest, you know why 😉 I have been trying to save as much function as I can for 16 years. It seems to be working. It’s mainly instinct now. I stecth my hands at the desk fairly often.

But I will need to really dedicate time every day to stretching my entire body. And try to build up muscle again.

busy busy

While putting some more latex on Ahsoka and wetforming the knee cops I got a call to do a photoshoot today. Was able to put it off til tomorrow 🙂 It’s for the Herald article that I did a short interview for 🙂 So I’ve tidied up most of the issues with my frock, just need to whizz the chemise under a sewing machine. Or I can sew by hand for when I do eventually hand finish it. Hmmm…..

I’ve been watching Elementary today to do so and been able to do some back stretches again! Physio for my rib was pretty much to loosen all the muscles that tightened during all the flinching and flu while the break was healing.

I’ve obviously also been very wary of stretching and especially using props due to how I injured my rib in the first place. I’m a bit concerned about bone density as it has been treated before, and has everything to do with medication and disuease full stop.

finally progress

Ahsoka has really been overly difficult. I know all the techniques I’m using well so why it has gone so badly I do not know. Well yes I do.

So it really is my health. Take tonight for example. I am not fit for doing anything right now. I need to go to bed. This time tonight is “wasted” because I can’t do anything productive. But I also have this horrible issue of insomnia.

I’m too tired to do anything but I am far too awake to sleep.

And I can’t even “reset” by going to bed later. Anything I do in this physical state has a higher cost that even my normal. So I really can’t stay up later a few nights. That is several hours extra use of my physical resources. And I can’t catch up on it except by rest.

That said. The B12 injection has been great. I may see if I can get another this week instead of fortnightly. Which I am allowed to do. I may see if next week helps, then do fortnightly for a couple of months then a maintenance monthly shot.

Oh the trick to these? bend arm at elbow and pretend to play a keyboard. Tricks the nerves. At least for long enough to let it settle 🙂

I have also passed the printing on to someone else. I know everything I need to do for it and I cannot get it done in time. I need to set the temp higher and make/buy a cover so that the heat is maintained. So thanks to the hobbyist community I save a good week of watchinbg my printer. I still don’t trust a machine that heats up as high as it does!


But further to progress: the montral are curing. Thank goodness. Still going to be a few days.

I have new tunic fabric. It’s very slippery so internal knickers have been cut as well.

I think I can use my scrap faux suede for the underbelt- the one that fits fairly closely.

The leatherwork I have done looks good and I have enough paints, sealer, and cleaner.

And there is a seam up the back of the greaves and darnit I’m going to cut right up the back regardless of the impossible continuous upper section. Why??????