Health update

 I thought it was time to post an update on where I'm at with my health.

1. It looks like I've developed Sjögrens syndrome, an autoimmune condition where your immune system attacks glands that make moisture.  This seems to explain my swallowing issues (which seem to be due to a dry mouth, and have gone away since I've been a bit more careful about drinking regularly).  The dental hygienist has suggested some products I can try if it gets worse.  It also explains my dry and scratchy eyes.  For that I'm now using eye drops every 1-2 hours, which helps heaps but is a pain to do!  I've been given new drops to try that might work for a bit longer, but I decided to finish off the current bottle before I open those.
2. It also seems that I've had a recurrence of my concussion symptoms, which is where the brain fog and nausea fit in.  It seems there's some medical controversy as to whether this can actually happen, but my symptoms are responding to the treatment that helped with the concussion, at least.  My GP is of the opinion it doesn't much matter why this has occurred, seeing as I've found something that's helping!
• I had basically continuous nausea when last I wrote, which was worsened by swimming, walking and bending at the middle.  I now only have nausea from walking (and likely from swimming - I haven't done that for a bit to know either way).  I'm doing de-sensitisation exercises for the walking and am up to 10 minute walks as of today; I hope to be at 1 hour walks in another five weeks!
• I'm hoping to re-start swimming when I can walk more than 20 minutes without nausea, as swimming at Blockhouse Bay involves a 10 min walk down the hill and 15 min back up.
• I still have significant brain fog.  I'm hoping to work on that in a more systematic way when other things are a bit more stable.
• I'm really struggling with people contact.  I've been to church for an hour a couple of times, and that's very much at the limit of what I can do.  I also get pretty worn out with visitors and phone calls, but I'm managing to see people by setting a timer and telling people when I need them to go away :-)
3. I still have phenomenal fatigue.  Six weeks ago, when last I wrote about this, I had reduced down to 5 hours up a day and that seemed to be working well.  About two weeks ago I had to acknowledge that was no longer the case, and felt I probably should reduce it to 4.  That felt really, really hard.  I also realised I'd responded to the 5 hour limit by being very 'on the go' all the time I was up.  So I decided to reduce to 4 hours of active stuff per day, but to add in 30 minutes of sewing or reading as well.  That's actually been really nice and has made me feel a lot more human!  It's also made me less stressed about some birthday presents I was struggling to get around to making.  A few observations:
• I was wondering if the CFS had gotten worse again, but I don't think so.  When I was healed back in 2018, the first thing I noticed (before I even got out of bed that day) was how much more easily I could move.  Even though my muscles were crazy-weak, they were heaps more responsive.  At the moment, I'm definitely losing fitness and strength as I'm less active, but I don't feel I have that non-responsiveness I used to have.  Around 10 days ago I started a 4 week trial of D-ribose (which I found really helpful for the CFS back in the day), but since I've realised about the muscle-responsiveness I have much less expectation that it will help - I certainly haven't noticed anything obvious from it thus far.
• Pulling back my daily activities so much has given me a bit of 'margin' at the moment, so I can do a bit more on some days without paying too badly.  Yesterday I was up for nearly 7 hours (mostly due to doing a big bike ride with Martin - I can't walk far but cycling is, wonderfully, fine!).  Today I've been pretty tired (and have only been up for 3 hours so far and it's 4pm), but I'm not completely destroyed by it.
• The horrendous abdominal pain I was getting earlier is definitely fatigue-related.  So long as I don't overdo things it doesn't appear.  Which is nice :-)

And now for some photos of things I have been doing. 

As well as sewing gifts I've been working on patterned darning.  I'm inordinately proud of the zigzag darn on the heel of my bedsock :-)

Camping at McCreadies Paddock

Over ANZAC weekend Martin and I had four nights at McCreadies Paddock campground, near Karekare in the Waitakere ranges.  With my health at the moment AND the trains not running that weekend AND some campgrounds being fully booked for part of the time we wanted, we ended up choosing a place we hadn't been to before and having a friend drop us there and back by car.

It turned out to be a really lovely spot.  It was two areas of flat ground surrounded by trees and a creek.  One of the flat areas had a small cooking shelter and some toilets at the edge, and there was a carpark with space for maybe 6-ish cars.

I'm not very well...

In July of last year I had a cluster of 'real' migraines.  For some years I've had clusters of auras without other symptoms, but these came with light sensitivity, nausea and headaches as well.  I've only had a handful of those in my life and each time, as with the first of these, I haven't recognised what they were as they happen so rarely.

Over time the headaches stopped, but I developed other visual weirdnesses and the nausea became near-constant - never gone, although sometimes better and sometimes worse.  In recent months I've developed huge fatigue, too.  Issues with swallowing that I had a few years' back have returned, and haven't gone away with a medication increase.

Hīkoi ki Waitangi with Karuwhā

On Sunday February 1st Martin and I caught the bus to Waitangi to participate in Karuwhā's annual commemoration of the signing of the Treaty/te Tiriti.  I wasn't all that sure what to expect (and was pretty apprehensive of how my energy would hold up!), but was hopeful it'd be a thought-provoking week.

In the mid-1990s I was in the young adults group of the Baptist Tabernacle when one of the other young adults, a law student called Sam Carpenter, was starting to think about how Christians might respond to the repeated dishonouring of the Treaty.  He was a direct descendant of Henry Williams (whose Māori name was Karuwhā), the man who translated the treaty into te reo Māori.  Karuwhā was born out of that thinking, and exists to encourage Christians to know and respond to the treaty story they are part of - particularly bearing in mind the strong involvement of Christians at the time of the signing and the much lesser involvement ever since.  They run a variety of events (many of them Haerenga/journeys like this one), but their 'signature' event seems to be this annual trip to Waitangi.  Over four days the participants are welcomed by Te Tiriti O Waitangi marae, told stories of our nation's early days by Māori, serve the marae as it hosts thousands and thousands of people, do guided reflections and participate in prayer times and a church service, and observe the treaty sites and happenings there over February 5th and 6th.

I'd long heard that, whilst Waitangi Day on TV looks like non-stop political arguments, in person it's much more joyous, and that was 100% my experience - although there were clearly many serious discussions going on, and if we go back some time I'd like to listen in to more of those.

A guide to maintaining and using lievito madre (Italian sourdough starter)

In recent years I've greatly enjoyed baking with lievito madre - the Italian 'stiff' sourdough starter.  I've been intimidated by the challenge of keeping an 'English' sourdough starter alive, and the complexity of making English sourdough bread.  The Italian version seems much more straightforward, and has the added advantage of being less sour so being suitable for making sweet baked goods as well as breads.  However, I've found very little information on lievito madre in English so have decided to put together a guide and hope it is of use to other non-Italian speakers.

The below guide is also available as a pdf. 

Most of my information comes from Giovanni Tiso, who posted instructions on making the starter and various recipes on Twitter in 2021.  I've also incorporated some things that he's posted more recently on Bluesky, as well as recipes from a variety of other sources and from my own growing experience.

If I know you and you're local I'm very happy to give you a ball of starter.  Otherwise, if you don't have one and would like to make your own there are instructions on doing that at the end.

Experiments in visible mending: darning

I don't think the term 'visible mending' existed when I was growing up, but it was certainly something my mum certainly practised.  My childhood clothes sometimes sported cool patches that I was allowed to pick out at the sewing shop, and the acid burns on my university 'chemistry' jeans were covered over with hand-embroidered flowers.  Darning, however, aimed to be largely 'invisible'.  It was also something I found fiddly and hated doing.

I've recently come across the idea of darning for visible mending.  I love the idea of mending things.  It fits well with frugality and good stewardship: two things I value highly.  And maybe attractive darning (combined with some new pointers on how to do it well) would be more fun?

We have a chair cushion that I'd like to try visible darning on, but I decided to practise on an holey towel first.  In a bit over an hour this afternoon, here's what I came up with:

The first attempt

The second - and a crude black one in the corner as I was getting tired

The section of the towel with the two mends

I'm pretty pleased with how they worked out!  I'm using very fine wool thread that I picked up from the op shop in Whangaparāoa when we were there in September, and following ideas from this video.  I learned a few things from these first attempts and may well move straight onto the chair squab next :-)

And, if I take to it, I'll probably buy a little darning loom (a tool I only very recently came across) which should make it easier to do neat darns with fine wool. 

Thoughts on asking God for things

I've just been reading 1 Samuel 1 and 2 (through to 2:10) and was particularly struck by 1 Samuel 1:18b:

Then the woman went her way and ate and drank with her husband, and her countenance was sad no longer.

Hannah ('the woman') is deeply distressed because she doesn't have in children; a situation made worse as her husband has two wives and the other has a bunch of children and is always rubbing in that discrepancy.

In the text I was reading today she brings this distress to God, asks for Him to give her a son, and promises that she will then give that son back to God (i.e. he will live in the temple and serve there right from when he's weaned).  Then comes the verse I quoted.  After bringing her distress to God and asking for a specific solution, she's calm and no longer sad.