Sunday, 26 April 2020

My Biggest Mistake

I made my biggest mistake in my 11 years of blogging today.

I shared, on the Sometimes it is Lupus Facebook Pate,  an article about misinformation (that people with lupus don't catch COVID-19) a prominent person in a foreign country said.

My main purpose was to warn lupies that if they'd heard this it was inaccurate.  We have weird immune systems,  that doesn't protect us from other diseases, in fact, anecdotally, many of us catch anything that is going around.

I admit I was also having a bit of a laugh at the person who had announced the misinformation.  In my defence, I'm Australian.  We make a national sport of laughing at all politicians, of whatever party, whether we support them or not.

What I was not prepared for was the response.

Instead of a discussion of how to protect ourselves from this horrible pandemic, it immediately became a massive political argument.

I had no idea of just how strongly people from this particular foreign country feel about their politicians.

I promise I will not be making that mistake again.

So, as always, get your medical advice from your doctor, not from celebrities, politicians or anyone else.




Saturday, 25 April 2020

Facebook Understands

Facebook gave me this helpful recommendation.
I really appreciate online support from others with lupus.  It feels less horrible when I am reminded others are facing the same issues I am.

So, as well as the Sometimes, it is Lupus Facebook page, I'm also part of a couple of lupus support Facebook groups. It helps me stay connected.

I have to say, I was very surprised when Facebook gave me recommendations for groups which it said had similar topics and activity to one of the groups I am part of.

Apparently groups based on department stores and hardware stores also discuss living with lupus, or at least Facebook thinks they do.

Or perhaps, Facebook and other platforms don't understand us at all.

That's OK.  As long as we are here for each other, it doesn't really matter if anyone else "gets it".

Hang in there lovely lupies.  These are strange times, but we'll get through them together (while physically apart.)

Friday, 24 April 2020

Life in the Social Distance

Next to the front door.
Sign available for download
 from Chronically Awesone.
I've been social distancing since about a week before the Australian Government told us to do so.  It's
not hard, if you don't normally go out much anyway.

The only regular outings I had were for groceries, church, writers group and the occasional catch up with family and friends.

I'm talking with family over phone and FaceTime, and with friends over Zoom.

Writers' group has been cancelled, and church is now on YouTube.

Even the pharmacy now has an app, which lets me order medication for delivery without having to leave the house.

I've been to my rheumatologist, because he still does things the old way.  I've been to the GP's surgery for my flu shot, but otherwise, GP appointments have been by telehealth (technical term for her phoning me at my appointment time.)

I order groceries and pretty much everything else I want online. I've found a lot of Australian businesses have gone online, including those wineries that used to only have cellar door sales, jerky and lolly manufacturers, and businesses that used to only supply bulk products to restaurants, etc but are now home delivering bulk groceries..

New weatherproof box for deliveries.
I've put out a sign on the front door, explaining my desire to avoid contact with people. (These signs are available for download from Chronically Awesome in the UK.

One thing I don't want is for the postie or other delivery people to decide there's no safe place to leave a parcel, and to take it back to a post office or depot for me to go and collect it.

To deal with that issue I've bought a large weatherproof box, and placed it beside the front door.  So whatever the weather, there's a suitable place to leave parcels.

The box is behind some trees, so while it's kind of visible,  it's still not really obvious from the street.

Some delivery companies still like to actually see me and confirm I'm the intended recipient, but now the delivery people are signing the paperwork on my behalf.

So, I'm learning to adapt.  It's not a big adaptation, after all.  I'm sure the changes are far more challenging for people who actually do spend a lot of time away from home normally.

How are the rest of you lovely lupies adapting to our new situation? Leave a comment on this post or on the Sometimes, It Is Lupus Facebook page.

Before I finish this post, I want to say a big thank  you, to the people who are making it possible for the rest of us to stay safely home.

Thank You
Doctors, Nurses,
Supermarket staff,
Staff at all other shops and businesses,
Delivery People,
Australia Post Staff
Garbage Collectors,
Cleaners (especially Hospital Cleaners),
Teachers and other Educators who have moved online in minimal time,
All of the Artists of all types who have made their work available online to keep us from going nuts while we socially distance,
Everyone who has helped out an elderly or chronically ill friend or neighbour,
Everyone who has chosen to stay home over doing something they would rather do,
The Clergy of all faiths who've adapted to online worship and finding other ways to support their communities,
Everyone who has had to change the way they work and live their day-to-day lives,
The Politicians who have looked past ideological issues to work together in this crisis.


The Biggest Thank You of All
To all members of the online chronic illness community, for helping each other to get through this crisis, in the best way we possibly can. You are amazing. 







Saturday, 4 April 2020

Hand Sanitiser

I made my own hand sanitiser.
In the annals of things never expected to do, today I made hand sanitiser.

You see, I've been looking for some for weeks, but everywhere is always sold out, or are charging something like $60 a bottle.

So I looked up a lot of recipes online, and came up with my own variation.  I only wanted a small amount, to carry with me when I'm away from soap and water.  I don't go away from home much, but do have to go to the pharmacy, specialist's appointment, etc.

So here's what I used:

3 tablespoons isopropyl alcohol
1 tablespoon aloe vera gel (purchased - I have fresh aloe vera growing, but suspect the gel might go off if not refrigerated.)
a drizzle of rosewater so it doesn't smell so alcoholic.

That's it, just all mixed together.  If I did it again, I would probably also add a drizzle of glycerine to help stop skin from drying out.

It's a liquid, rather than a gel, but to make it thick enough to be a gel, would reduce the quantity of alcohol.  It needs to be 60-80% alcohol to work.

I noticed that the World Health Organisation approved recipe also has peroxide, and I would probably add some of that if I had it, but I don't, and I'm not going to make a special trip out to get it.

The main ingredient is, of course, the alcohol.  Everything else is to make it more gentle on skin, and to make it smell slightly better.