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 πŸ™‚

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.Β  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 πŸ˜‰ 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 πŸ™‚ It’s for the Herald article that I did a short interview for πŸ™‚ 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 πŸ™‚

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??????

very sore indeed

I may have to face the fact that my infusions are wearing out and I need to get ahead of the pain rather than treat it as it happens. I can hardly walk at the moment due to weirdness. I think it’s a mix of nerve pinching and muscle wasting after that nasty nasty bug.

I’m wearing heavy boots, it’s true but that’s also to try and build up strength again. I tried going for a walk and got to the end of the street and wanted to go back home :/ And today it was just the length of the drive! I’ve been standing and doing things but actually walking- my legs feels half numb like I’ve been sitting on my knees for a while!

But my wrists are also really acting up (note- hand surgeon appointment next month) and I’m sore all over like with the flu. So that’s usually the start of a big flare. But I don’t want to take steroids. I may try upping my Leflunomide again. Right yes. It’ll take longer but will last longer.

 

a recommendation- health

So for regular readers or those who simply land on my site or page can tell, I don’t do paywalls, nor sponsorship. I want to be free to promote things that have really made an impact πŸ™‚ I don’t like putting bad feedback out there as it is so permanent and may still be around even when a manufacturer/seller does make changes.

Anyway. This post is brought to you because I am upright after figuring out how to arrange my pillows so I could breathe last night and that I am remaining upright thanks to a nasal spray that actually works- it’s a bit stingy as it has tea tree in it but well.. This is the first time I have painlessly reduced congestion from a cold ever.

So it’s Fess.

I may have used it it little differently because I found the spray actually did the thing it’s supposed to and with nasal passages so full that you can’t breath that’s impressive.

So I sprayed, cleared into a tissue, and repeated because I was so congested.

Anyway, my nose was not happy the first time I used this as the tea tree oil is very astringent. but it does have moisturising agents so it didn’t last for long. It also did sting my tonsils- yes it really does clear congestion that much! But wow.

Okay so it’s so good I need to be careful to not over use it πŸ˜‰

Oh and it leaves a pleasant taste. And everything also smells slightly minty. And that is indeed a wonder while leaking germs!

 

For those curious about the pillows- I have a habit of rolling on to my back at night- usually not good but actually the only way to breathe while the virus is super active. So I used a feather pillow to make supports for my head and my normal pillow for my upper back and shoulders to keep my head raised. A tiny bit cheaper than those electric head options though man.. they seem like the perfect future bed option.

 

So I am going to attempt to have a day of gentle sewing catch up πŸ™‚

the steroid shot has worked

While I wouldn’t say it’s a cure it has helped decrease local swelling to the point I can genuinely test what is going on.

http://www.fprmed.com/Pages/Trauma/Costochondral_Seperation.html

Go down two more ribs and that’s where mine is. I finally was able to do a very gentle test of the hook manoevre and I did at least find theΒ natural edge of the cartilage curve πŸ™‚ And it moves with breathing.

I can even sit upright for a while now :0 Breathing is weird as the muscles that attach to that rib feel stretched and so also feel like they are cramping. So I don’t want to move it all too much.

 

Also that amount of inflammation set of a mini relapse of my RA, and also ummm… inflammation in the abdomen. But I think that has settled as well.

 

Still a long road to recovery. And there is a lot of mixed information out there about treatment.