Tag Archives: health

Self isolation from the long term side

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.

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self isolation update

I think I neglected to cover “pacing” properly. And today I am here to update from my vantage of my own incorrectly calibrated pacing!

Again, this is part of my daily life, and has been for nearly 19 years so I really should have got this down by now. The fact that I haven’t means I want to tell people, again, be gentle on yourself. You may not know what pacing you need right now. It’s tough for many of us.

And that not knowing I think is going to be a shared experience for many people self isolating due to mild symptoms. Is it flu? Is it something else? At what point do I change my routine? When do I ask for help?

I know my RA and fibro by now, but that familiarity leads me to push a bit often because I forget that I am in a constant state of inflammation that has subtle tolls.

For me all I was doing was knotting and securing ends of pearl strands to my fabric. Yet last night my back and hips were in so much pain during the night I now have a numb patch in my upper left back. Pain too, but that numbness is possibly a fibro thing. I don’t know!

Learning pacing is not a linear thing. But over time I learnt it is better to recover from over doing things rather than punishing myself for failing. So instead of saying “well it was my own fault for making myself sore” I say “ah fork, I need some anti-inflammatories/pain relief/extra meds but it’s a one off and if I get them sooner rather than later I’ll be able to get back to that project faster.

Self blame is harmful. Recovery is good. Self blame comes from some very harsh societal messages. Recovery is revolutionary and is about compassion and kindness. When we can feel that way about our own health we start to think that way about others.

Even if it is expected or you do know what risk you took, being in a worse state is not helpful or healthy. Put a line under it. Give yourself the best chance.

But yes, the subtle symptoms of illness have a way of demanding payback. So treating them to your best plan, which is different for each of us, will help you better than saying “this is expected” or “I deserve this for not looking after myself.

Oh and the reason my pearling took such a toll, it was a change in how I sit and use my body. It wasn’t more work, but it was different, that is enough under the best circumstance but it is an extra challenge by using muscles in unpracticed ways.

So am I glad I got my pearls to that point yesterday? Oh yes! It’s an emotional project and I want those pearls in particular secured and safe.

Did I forget pacing and am dealing with difficulty now? Oh yes!

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overdue update

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.

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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.

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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??????

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So that rib

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.

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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.


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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 🙂 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 🙂

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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.


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 the natural edge of the cartilage curve 🙂 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.

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whoops, fell into a research rabbit warren

In order to figure out history of the gown I wound up with dozens of reference notes about the production of garments and how there are multiple copies and why.

I still haven’t found the specific references I want (all secondary atm) but enough to feel confident in several statements made.

But there are some conflicting descriptions of materials, I have my suspicions about why so will also have to discuss those.

So yeah. I can now start the day and do things.


But I also will have my abs juice ready to go today and the latex work of yesterday will hopefully pay off today. Unless it didn’t adhere in what case I get to strip the base back and redo it. IsoPro does work but it is a PITA to time correctly. The latex needs to be clean and dry for the next layer of latex. But with a very damp climate there is a fine layer of moisture on anything outdoors- or in a room without insulation.


What else… Oh yes. I need to bleach my sateen panels for my 1870s gored stays. I worked out what I need vs the original pattern styles so will also see if I can make one in red sateen finally. I have tried to do this in the past and somehow wound up with stays too short.

What I need from stays is less about squish as it is about reducing stress on ribs. My current pain is a very good reminder! My ribs are very long, there is barely two fingerwidths distance at the side of my waist between ribs and pelvis. So this means if I want a wasp waist I either deal with ribs being heavily squished or I make it nip in only at that narrow point. Or I can avoid too much restriction and taper the stays to the waist then flare out over the hip.

This last one is what I find gives a shape that is both acceptable to a modern eye as well as historic. If I nip in only at the waisy it tends to make everything else seem disproportionate rather than drawing the line in.

So today will be spent cutting fabric and bleaching to have a summer and winter variation. There may even be enough silk satin left over, though that feels a bit extravagant!


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