Frock Chick

Self isolation itself takes a bit of time to get used to, but what we are dealing with at a global level makes it that much more stressful. For many reasons. Financial, emotional, and for many of us this is not quite as usual, even if we are always at risk.

I cannot give medical advice, but I can offer my experiences to help validate and support those facing some aspects for the first time.

The first is that you may feel like you are overreacting, you may get accused of overreacting. This one is something most disabled and chronically ill people face all the time. So, no. Self isolating is not overreacting. I’m not even going to pile on people panic buying but ask for people to take a breath.

The second is that you may feel guilty in accepting help from people who have that little more time to be able to shop on your behalf. Again this is a constant. If a disabled or chronically ill person offers help right now, we are doing so because we know what risks there are and what ones we can take. If you are scared to accept help because of stigma, please accept help. If there is one thing I have learned is that this affects many others if we internalise that stigma. If you are scared for health, then I highly recommend saying yes but under conditions you feel safe. For example someone collecting groceries and leaving them at your door.

Third you may try to do everything that you have put off in one go. Again, this is my life, shout out. Pacing is honestly a big deal. It may feel life you are not doing enough but over time those chores or projects may wind up being therapy to keep occupied. Chores especially can be very theraputic and calming if you do them on your terms.

Routine does help, but so does flexibility in changing because perception of time changes. I try to switch things up so I do not over work any set of joints normally, and rest even when i think it’s not time yet. Unfortunately as person at risk I have to be on top of news and even anticipate changes before they take affect. This takes so much time and effort that I’m not really putting into practice everything I know.

And you may also be in a position where your own labour seems cheap compared to cost of some goods. Again, hi, hello. This can lead to the Vimes Boot Theory coming into practice where further down the track you no longer have the ability to purchase quality and instead wind up spending much more over time for the same outcome. This is related to CripTax where the choice to use your own time is no longer there, you have to spend more to do the same things.

People may look at you differently. Either because you are doing things now associated with a pandemic (though are usual practice, or should be) or don’t seem to be affected so are disbelieved. Yep, I am dealing with both and it’s still difficult even now with practice.

There are many more considerations, so many more. But I am going to take my own experiences and take a break.

I am trying to post content or at least positive updates. So first off I had a good sleep last night so that I can’t remember my dreams- this is a lovely stay cation from my mind 😉

I have taken all my jewels off my various pieces. There are not many of the brass filligree pieces left online so I might see if I can get a few of them as well.

And I am ready to tackle the difficult task of putting in a bit more support and frame up my Cleves hat (mutzger) for the old and new pearls.

And I decided to recreate a specific pattern of pearls for a belt (perlengurtel) and a specific pattern for the borstlappe.

I keep remembering specific sources I don’t have on my site yet, and I have spotted that all my images are now also categorised when they shouldn’t be. So I still have a bit of writing to do today.

Yesterday I was overwhelmed.

It was the fourth anniversary of the passing my Kitty Boo Bear and I had to have a big time out and then I was able to got bed at a time most people manage and had a very good sleep.

So today I’ll limit myself to adding in a few easy to add images and then see if I can draw that belt pattern and see if I can work out the borstlappe pattern.

I have not really been updating much as I’ve been having playing catch up and it’s because I can catch up 🙂

As soon as my scar was healed I went back on my DMARD because my disease was getting a bit active again. So I am going to take it that yep I am still not in full remission and need to keep going. On the upside, while a DMARD sounds scary the ones I’m on have fewer side effects and long term consequences than the pain relief or anti-inflammatories I would otherwise need.

And it is long term. It’s been 18 years of my RA and I know what it responds to positively and negatively and while it is a constant juggle of rest, activity, diet, looking after other health. And often needing to change each of these as my body is particularly good at contempt of the familiar!

Anyway. So I did have my final physio session. I have been so good at stretching and massaging and flexing my hand that I have a bit more range of motion than I started.

So I need to do a few of these exercises for my general hand health.

Pain? Gone. Occasional tiny sharp flick if my arm is stretched just so. Strength is coming back and I’m getting used to my new weird tendons popping up in my wrist. It’s my one concern and is entirely about other changes caused by my RA. The bones the ligament attached to are so eroded I’m not sure what else attaches where now. As my surgeon got a good view inside my hand I can ask a few questions 🙂

There is a bit of bruised sensation to he side of the scar, and the scar is still quite rigid put I can put a little pressure on to help slowly soften it.

Already the scar is folding in to my natural creases, the stitch holes are just a little more of a reminder but they too will fade.

A few days ago I wasn’t sure how I would go forward with my right hand. But the concerns are resolving regularly, so every few days there is a change, not so much every day.

Soon it’ll be down to a week to see change, and then a month, and so on. So right now I’m happy with my left hand but would not want this stage for both. But it’s still better than a week ago and so I’ll be better able to take about benefits once fully healed 🙂

And of course I went into this knowing it was about prevention of future issues, not repairing.

I have been sharing my sleeve patterning progress on Instagram (TheFrockChick) because it is such a cool exploration of extant patterns I know very well and how I would make them now.

I have managed to find a way to make the spirals work as spirals!

This is my prefered shape. But I have only seen this Dog Leg pattern for fitted sleeves. And I have a whole article to write up about those! So I went back to what I know is in the various pattern books for full sleeves and worked backwards to get something I think actually would have been the go to for tailors.

I keep my back seam, which allows for an opening to the cuff, and the angles of the panes are shallow at the top and acute at the bottom.

I will get photos and do a proper post about the whole thing but I managed to find a vintage saree woven with metal and a delicate scrolling design!

Normally that pattern would be a beige thread over most of the background but I checked all views (yay for sellers who show the entire length and the reverse of their saree!) and it is gold! the green is not ideal but I also know these respond very well to RIT colour remover. The main body is that pattern on red so I can even just avoid that altogether. There is also a lattice border for other projects!

A perfect match? No. But I agonised over this for so long that I decided to get a compromise in my budget that would also help in my teaching. The gold is metal. It responds very differently to even the very best metal and plastic combo. So I’m hoping to be able to share what real metal feels like and reacts. It is very hot to iron for one!

And when the Sartor Margarete fabric becomes available again I’ll be in on the pre-order!

All of this is three days before my carpal tunnel surgery.

I’m finding it hard because I am scared about the consequences of having a wrist so degraded by erosion. Infection I am prepared for. I have learnt what are danger signals and when to call in reserves. I’m just in a position where the damage from erosion is like 90% of my issues that I wonder if the risk is worth that 10% improvement.

But I also know that I will risk further damage to my nerves without this.

It’s just not the same equation that most people know, and even within RA patients we have different outcomes.

So. I will be very proactive and if my hand feels weird outside of what I know will be weird I will press for investigation.

I am still very much not okay though. But I am very definitely hopeful- any function I can protect or retain I am all on board for. Which is again why the equation is not easy- I want every possible therapy and help I can get hold of. It’s the risks that are unknown that are hovering.

Been a bit quiet. Everything takes a long time with my disability so I wind up a bit behind when I try to do a few things!

My new site is a bit on hold while I decide on future proofing, my book is on hold because it might require an entire restart of images! and my frocks are on hold because I’m just tired and overwhelmed.I do though have a lot to get started which is nice.

Fibro also makes things a bit slower too because it seems to set off muscle twitches and spasms and sometimes it will be a day sometimes it will settle in for a few days. And I can re-set it off again a day later by pushing that little bit further.

Which I did today.

On Thursday my friend came over to help me play SWTOR (it’s Saturday afternoon here as I type.) I need in person help on that, unfortunately, as it’s been points where it’s a forced solo mission but not scaled for story (apparently the other modes are all okay?) And though gaming is something most people do to relax for me it’s a full body activity and so not only do I need to pace for my hands I also need to pace for all the muscles in my torso holding myself upright and also keep my arms in place to take as much strain from my hands as possible.

I wound up with the same kind of cramping and twitching and spasms as I get when I am out travelling. But I was hydrated, had electrolytes, so I really can’t call that anything other than having a very definite upper limit of activity before I go splat. It’s not anxiety (panic attack) it’s not linked to hydration/food, it seems to be linked directly to length of time either walking, or sitting, or any other activity that involves half or full body immersion.

And that really is tough. It is well short of targeted ideas of physical activity. And it’s also rather short of any level of activity that builds stamina, muscle etc..

So while I know this, and I have lived with limits for a long time, and shifting limits at that. This is now very marked. I essentially need to treat one full day as two. I need my midday rest but it can feel forced or at times do the opposite of what I need.

To summarise, It’s probably a good idea for me to really train myself to divide my day into two and treat each as having a warm up, middle, and cool down. And I need to do a little a lot and accept that what used to take me a week now takes 6 months.

Ugh. I wish I was kidding.

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.

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 🙂

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.

Turns out it’s broken, healing but broken. Cartilage does not show up on xrays though and here is weirdness at the jon between bone and cartilage so I will ask for further investigation.

As for what can be done… nothing. Pain relief. But nothing.

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 🙂 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 😉

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 🙂

Tags: health