Rollercoaster

 Up. Down. Really down. Life with chronic illness is like a box of chocolates. And so much unpredictable, unavoidable stress; I am not well enough to find a plan to help me cope yet, so until then, rest - rest -rest - if I can, and more waiting. So life is often a combination of small flurries of activity followed by long, frustrating stretches on the sofa. On a depression level this fortnight has been horrendous. And pain. Most of the time ok - certainly not as bad as many people, but it's there.

 Usually life is like this:

This week, there was some of this:

Always this:

And I am always beating myself up about 'complaining'. In a world that doesn't like to hear about the not-so-pleasant realities of life, I have to remind myself - and maybe share with some people who think others complain too much, we are entitled to grieve. Being honest is not being negative or complaining, we are trying to make sense of what we are going through. Yes everyone is going through stuff, but being constantly tired and feeling like you're about to lose the plot, or in pain - it's kinda not how you planned to be a 'productive member of society'. It is not wrong to mourn losing 'that person' that you were working to be. I still think that person is just around the corner, but what if they're not? Then you need to grieve a little more. There isn't a date stamp.

Not knowing when you're going to have energy to mop the floors again is good insentive to mop them while you can; but then you notice the dust, the oven, the washing pile... Before you know it that energy is gone. It is a lot like a video game - watching the 'energy bar' going down and trying to choose the 'most important' task out of the fifty you'd like to get done. Art doesn't usually make the cut unfortunately; it doesn't feed or clothe anyone (yet?) so it is not in the top ten.



The weather has also been strength sapping. Not as hot as the past month, but I am sticking to everything. Such fun.

I sort of threw together an art journal challenge. I was both pleased with the result and pleased that I did it. And I learned that some techniques are more suited to some ideas than others and how I could work around 'mistakes'. Which is all good.

I finally decided that my painting for my Wanderlust class is finished. It is far from perfect, but I learned some things, and that was the main point. Or so I find myself reminding myself! Truth be told, as always, I could rework forever and not be 'happy' with the end result. Which means it is best to leave it where it is and enjoy it. I do like it. It's just not *perfect* - not that I have any idea what perfect *should* look like!

'Cressie' (my SCOBY) is doing very well. I was going to bottle some for a second ferment (thinking peach, or raspberry and lemon?), but I decided to feed her again and she is taking her time... More patience required. I am looking forward to seeing how it improves inflammation.  

I finally bought some plastic lid jars to re-jar the sauerkraut my daughter and I made a few weeks back. It is le-yum. 

I had to go back and buy more jars because the kimchi I learned to make last weekend was nearly ready - double yum. 

A Kefir, Kimchi and Moroccan Lemons Workshop

Kimchi, Strawberry and Lemon Kefir and Moroccan Lemons

Kimchi ready for the fridge- shorter ferment than sauerkraut

Water Kefir (left) and Milk Kefir

Bottling my first batch of second ferment water kefir- raspberry and lemon- yum!

Raspberry and Lemon Kefir -WINNER! 

I bought the milk (as close to raw as I can source) to feed my poor little grains. I don't know why, but I am more nervous about making kefir than kombucha.  Lactose makes my stomach turn, so I am ultra nervous around milk. So I haven't been drinking the milk kefir, but I LOVE the cheese it makes!

Draining the Whey

Kefir Cheese - Oh Yeah.

One of the especially frustrating things is that my learning style is visual/kinesthetic- if I see and do, I am usually pretty good. But remembering how long to leave things to ferment (which I haven't actually seen- I should have written more down but I was spending all my energy listening and doing!) is a bit hazy. And not the least because I have to remember this method for kombucha, this method for water kefir, this method for milk kefir- and even sauerkraut and kimchi have different fermenting times. I clearly need a chart, but I fear it will take me a while to put together. And the water here isn't great with my 'best I can afford' filter, so between less than raw milk and less that great city water, I am very worried I will kill the grains. But I have to give it a shot. Just have to move. Do it. Argh! Fortunately the lady who taught us is lovely and patient and helpful with questions: there are so many differing processes on the internet, and how to know what will suit this climate (and after converting gallons and quarts my brain goes on strike!). But I can say now after a week from starting, I have had a bottle a day from the water kefir (about to crack the pineapple one today!) and the grains seem to be growing, so I am thrilled about that. And I have had two batches of cheese; I could probably do this faster but haven't come up with a system. And though I love cheese, I can't eat THAT much. Might have to rest those grains in the fridge for a bit.

I also spent an afternoon (as I regularly do) baking a triple batch of muesli. It doesn't look like a lot here, but it takes time! Especially considering there is about 36 hours of soaking and dehydrating time involved before even starting. It is hard to see scale in this photo. It is about eight litres worth - whatever that means ;)

Sugar and Gluten Free 'Granola' (come on, Muesli!)

I tried one new project: baking soda and vinegar hair wash and rinse. Again, so many sources on the internet, I settled on this page. I have only tired it once so far, and it does seem very dry. And it doesn't help that we have that through the roof humidity lately, so I don't know how long this will last, but had to give it a go. And also, so thrilled it is uber cheap, as my son HAD to squirt a whole bottle into the bath. I don't really blame him, but it made it a lot easier to remind myself it was two teaspoons of baking soda and less than two minutes work.

Next on the uber productive list was fabric softener. After reading about the chemicals in it I find I can't bring myself to buy it again. There are about three recipes I am planning to try, so it will take some time I think. Not to mention it is raining sporadically enough that it is difficult to get a load dry (and humid enough that even hanging inside it's not doing much) and we have had more than our fair share of wet beds this past fortnight... thinking about the washing is in the (no pun intended) too hard 'basket'. Haha.

The first recipe I am trying is from this page. I have used about 3/4 of that large bottle (on the right in photo below), and so far I am really pleased with it. I am searching for an alternative to making laundry powder, but have read that some mixtures are better than others etc, so - too hard right now and I bought a huge bucket of the petrochemical (etc) free one to last me until I have more energy to think about it!

I am trying to get to my writing course today, but I find going over my notes they may as well be Greek. Being ill not only affects my energy levels and causes weird and varying pains, it messes so much with your cognitive abilities. I was relieved last night while I was doing some reading about one particular disorder I have to see this:

"Symptoms include: Morning nausea, Tendency to delay or skip breakfast, Very dry skin, Pale skin, Inability to tan, Sensitivity to bright lights, Sensitivity to loud noises, Poor wound healing, Joint pains, Premature graying of hair, Extreme mood swings, Severe inner tension, Severe anxiety, Tendency to stay up very late, High irritability and temper, Severe depression, Obsessions with negative thoughts, Little or no dream recall, Poor short-term memory, Autoimmune disorders, Severe oxidative stress, Poor muscle development..."

And also:

"Common symptoms include inability to cope with stress, emotional mood swings and sensitivity to light and sound. It also causes learning difficulties and auditory processing disorder, which means that in a noisy environment, it’s hard to single out the sound you should be listening to."

I have edited the list above- there are some things that either didn't relate to me, or were just a little indelicate.

Relief? Yes, because I keep forgetting that THIS (and more) is normal for me. It's not my imagination, I am not a naturally pessimistic person. I REALLY struggle when the kids are playing 'nicely' (ok, and when they're fighting!)- it is so loud. I'll watch a movie in the dark and my husband will turn the lights on for me, and it is too bright. I can't leave the house without my sunglasses- I can't see straight!  How often I just feel like I am plain going insane. Anyway. I thought having a name for the conditions I have would make it easier to address them. So far, it hasn't been. But I am only a year and a half into the protocols and I guess I shouldn't give up yet. Which isn't even funny because the truth is I would only get much worse. So I have to keep on this path. And hope. Still, it is little things like someone (ok, an article on the internet) pointing out that I am not crazy, this is just what these conditions do to you, that make it a little easier. I am frustrated because it is more than 'feeling blue' - and I am NOT making light of depression. I think people can empathise with you with depression- though more and more people are experiencing it, and I have opinions on why that is too, but those people who say 'yeah, I was really sad for a week back there'- yeah. However I just come across as a completely crazy self-absorbed person with too much paranoia and people can't even begin to imagine what it is like- let alone such a condition exists. Or assume I should be locked up...

 It is more lonely than when I 'just' had depression (as a diagnosis). It takes a lot of re reading reports to remind myself that it is not all in my head- it is a huge effort to get even close to convincing someone else that that is not the case.

Again, that was the long route to saying: I am having trouble recalling what I have already learned; when I have the time and energy to study I find I have to start over, rather than pick up where I left off, and that mountain seems a little insurmountable sometimes. Ok, most of the time. I am told it will improve. I want to believe that but it is hard.

Then there was also the argument I had with God this week. I am so grateful for His patience, and the good counsel of people I can trust But it isn't fun. Grace is an amazing gift, and it is wonderful when people remind you you have been given it, and just show it to you. I won't elaborate here how deep depression took me this week, but it was ugly. really ugly. Screaming, shouting, don't-go-there ugly. And in absolute desperation I reached out to someone and God answered. I was speechless- which was a good thing. God is good. But evil is real, most people don't acknowledge that part. And as a part of the 'I can't do this again' scrambling to save my sanity I finally, to use an odd euphamism, bit the bullet and took out my tongue ring.  It came to a 'I really have to take this out' place. I was  so reluctant, I couldn't say why. With all evidence pointing to galvanic corrosion contributing to a host of problems, (not the least of which is CFS and depression) in my poor body, It had to happen - and now. After 15 years or so, I wanted to have some evidence, that was brave and crazy (the other kind of crazy...) once. I hesitated, because: photos. Eventually I summoned all courage and took these- without makeup *horrors*! (I couldn't resist a little filter though- judge me all you like!)

And now it is gone. And it is weird without it, and I miss it. But after taking it out, and some amazing prayer, this week I have felt less 'muddled'. It is hard to describe. I have also been able to 'taste' the filling I have, which I haven't before.... so I will be seeing my Dr in a few weeks, wonder what that will mean?

Could that really cause so much illness? 

If my goal on this blog is to encourage and remind myself that I am not just a lazy couch potato, I think I have succeeded. I just read down the page again,and I feel like I have earned a rest! But it is raining gently now and for the first time in ages everything is quiet. I am going to seize this time - while it is not too hot, nor too sticky AND while I have some energy to sit in a chair (winning combination!) and do some more study. And be grateful. Give thanks. Calling on Him while He is near.