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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flu shot time

Last year I think my flu shot just hurt my arm. This time I have developed some symptoms (no fever!) which I think probably means that this year’s vaccine includes strains I have not encountered? If so I am sooooo glad I got it and will deal with these symptoms for a few days because I do not do well exposed to them in the wild. I mean, well obviously.

I could also have just picked up something as I was in the waiting room with a crowd at my GP for a few seconds. Either way not a good time to try and get things done before it becomes too hard.

But while my body is learning what was in the vaccine it’s even more distracted as usual. And because I have my cough still from my last flu I am so not going anywhere.

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Today I managed to reply to an important email and also got my Sunburst gown project into the lounge. I have no idea if I will will my pink or my tiny white pearls but I am finally in a position where I can view this project as a positive use of my time.

I know many other people will be facing the next few months indoors for whatever reason (to protect others, to protect themselves) and so am offering here a specific project: The Tablier #BeadAlong (or any beading project really, no really.)

If you want my line art for the Sunburst embroidery I will have it ready to go as soon as I know of any interest (@TheFrockChick almost everywhere.) But I also have examples of other tablier as they are my favourite solution to many fashion questions of the era from Bustle to Bustle which is, what do we do with this flat skirt front?? Often the solution was Ruffles! or Swags! I love the “understated” solution of beads. Just beads.


#BeadAlong maybe?

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less cranky

I am actually in a fairly good health space, for me. I have managed to collect enough data to be able to say “okay wow, pain is a cause for my worse sleep” as well as “oh this pillow is in fact better right now.” So I have some solutions to a very complex problem.

But last night even in the midst of a very stressful, very reflective time, I can say my sleep was yummy. It was what sleep is supposed to be. My solution includes medication I have avoided for too long due to stigma.

But also, the idea of a year of enforced isolation is somehow very freeing.

I feel light and quite optimistic, so long as I avoid social media, which unfortunately means avoiding friends online. I love and care for you all, but it is very crushing to have been unheard for so long. Not me as a friend, but as a representitive of a community and as such an ambassador.

But right now, I am looking at no time frames to get things done. I am looking at months where I can choose what project to work on because I want to not because there is an opportunity I will miss if I don’t focus now, right now.

And because I feel free I am using my time in a way that is so beneficial to my mental health I can’t express it well enough.

For me this is a much needed respite from trying to keep up with the world. The world is now at my pace.

I really could cry and have been, over what this means. Because the fear of sickness is not at all new, and it makes every single year this very difficult balance between trying to make use of an opportunity and that opportunity being a massive risk to my health.

I have taken a project out of my long term storage to work on. The project is important to me as it’s part of my earliest exposure to historic costume as well as ties me to the old LJ community. And it is in part because not only can I fit it into my new schedule but also a current trend, and I am also able to get photos of a quality that will help me share that by being able to use social media trends and it’s so exciting.

But yes it does mean I need to use this me time for me.

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Accessibility is suddenly everywhere, why am I so sad?

Some of us are now looking at the speed and frankly larger amounts of effort and money being put in that we were told was impossible, unfair, at a small scale.

It’s starting to really hurt. People are sharing how sad they are about conferences closing, about concerts being cancelled and supporting each other. While those of us who have always had to miss out are being ignored still. Even when recommendations of how to get through this include speaking to your isolated friend.

Just because we have always used social media to share information, how we feel, does not mean that is contact.

Many of us are grieving all over again for losses due to being denied reasonable requests. For many it was advanced degrees, for others it was a career. We absorbed the idea that we were unreasonable and while we were able to let each other know that no it wasn’t unreasonable. This is a whole level of in our face. We are talking about the exact same requests and for many in the community from the exact institutions that denied them access.

Please read, but don’t add more pressure on those sharing, it’s a really hard time for us. Read, and remember and remember to keep normalising these accommodations. Once this is over they may be locked off again to those who need these all the time.

And clearly our voices have not ever been enough. I think that is weighing on us too.

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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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life in self isolation

So for those who only hear from the disability and chronic illness communities at a distance, we are currently sharing tips and hacks for how to cope with self isolation.

Right now I’m not doing more self isolation than I normally do, which is close to what is being asked, but I am focusing on what I can do right now, and for another year, even though I have had two particularly bad years already where I couldn’t go out and do things.

So that means not just distracting myself but reminding myself that what I am doing right now has meaning. It is both my own personal meaning, as well as has meaning to people around the world who I would never get to meet anyway.

I am also pacing myself.

This one is more difficult as we tend to want to make as much use of “down” time as possible. But right now being healthy and protecting everyone else as well as ourselves means taking time to build physical, mental, and emotional resources.

I know that projects put on hold are so tempting to finish now, right now, but pacing means perhaps leaving a bit for later in case you don’t have 20 projects on the go. Ehem.

But yes conversely sometimes that passion will help carry you to a point where you can settle for a bit after and you can relax, basking in the glow of success.

It really does depend on you, but also this mix can change over time and so it is absolutely correct to figure out what works for you as an individual.

But this next part is something a bit tough to remember. Isolation is isolation. It brings stresses that even the most introverted of us deal with. Over time if the bulk of your in person contact is purely from professional health providers it can start to impact health, or perception of self.

So absolute kindness to yourself, and in thinking about those who have to self isolate either because they are sick, or to prevent others from being sick is going to go a long way.

For me my self isolation is probably going to ratchet up a bit over the next few weeks. We have very few cases in NZ but one patient was in the hospital I will have to go to and about 50 staff have had to self isolate already. I cannot risk getting sick because I won’t be able to wait it out at home.

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Hat progress

My Anne of Cleves inspired hat is getting her final make over.

I made it in 2006, added more pearls later, then the gold braid and more pearls and now I’m using a different technique to be able to avoid the issues I had the last time.

But I took them off and stabilised the velveteen a year ago. I had not worked on it as I simply had so much in the way of blog posts here and else where that I want to get into an easy to read and see format.

I also had resources totally out of array (thus my domain name) so it was always a case of having to hunt for a reference to share it again.

So I’m looking at putting up my most useful costume projects for each section of my new site and make pages for each element that is iconic to the time and place.

That includes and my hat, but I think I need to get my other hats up and I need detail images as well.

I am sooo excited to share, because as of right now I have every single portrait of an ensemble from the North Rhine. I did exclude relious dress but there is so much that is depicted and I have some written texts that I think that will be a very nice side project.

Also when I move pages/posts from here I can correct some information I got wrong or had to use due to information being not quite ideal 🙂

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COVID 19 and people like me

Every single year is a massive risk of getting very sick for me especially with novel influenza strains, and very scary. When we talk about at risk populations I am part of that. This aspect is not new for those of us who deal with this risk fear every single year.

What is new is the public response.

No-one gains anything by people getting angry and abusive. In fact already many people of the chronic illness community around the world have had to deal with being treated as if they are infectious (not all coughs are the same- I have a noisy cough from my last bout of flu, it is not an infection) or as if we are over-reactive (I probably will need a proper face mask, people wearing them now are getting coughed on to mock them- ironically by people who assume they are well but could be vectors of anything.)

On top of that is too risky for me when I catch influenza to go to hospital. So I have to stay at home and I have nearly died because of it. It was such a small thing to go from breathing to not being able to, and even then the risk of a resistant bug from a long stay in hospital was a more risky option, I felt*.

I am getting increasingly scared to leave home not for my own health, not as a potential vector (like all of us) but in case I cough and get abused. I deal with behaviour that puts my health at risk constantly, now I have to be scared for assault for being ill.

I occasionally time my intake of sugars badly. I have collapsed several times, and I have been stuck on a bus and had all my limbs and digits bend backwards like I was in some horror film!

Other times I am scared and can’t speak, I can’t form words let alone a sentance, I just have to get to fluid and sugar. But other shoppers don’t know that and they tend to see me as an impatient angry person. And the response to that? Getting in my way or putting barriers in my way to punish me for being agitated.

I deal with dirty looks when I use accessible seating, or take a chair. On this, accessibility is for everyone, if it is risky for you to stand, to try to get to another seat, it is there for you. But there are some spaces designed for wheelchair access as there tend to be very few. These I avoid or use temporarily so I can make space when it is safe to do so.

*Not now. I have been assured by enough ambulance staff that yes, yes I should ring them.

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OMG! Done! This is a huge deal, and while not perfect it’s at the point where this is now a truly valuable resource. And it means I can start adding in detail images. I have so much to say that I have not been able to due to these images being all over the place. In books, in digitized books, in image galleries, all kinds of formats.

Next step is to generate some galleries or cats based on decade.

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