salty

How many days ago was it that I last wrote? Ah, almost a week. What have I done all week? As it turns out, quite a lot! But not too much!

Last Sunday afternoon we piled into the car for the trip to the viletta. We departed in the rain but luckily it dried up when we got there so we could take the dogs out for a short walk with Basel. The cousins were excited to see each other again - but this time Lupa and Basel played for a bit - she was intense but not aggressive - I was happy that it went so well. Eventually they got distracted by coyote smells by the pear tree.

I'd brought focaccia and tomatoes from the garden for a simple supper (I made the focaccia earlier in the week and stashed it in the freezer). It wasn't a late night though - I was beat by 8:30 with just enough energy left to walk the dogs down the road.

Monday morning the RV repair guy came to evaluate the damage from the lightning strike July 1st. We've got a plan and are now waiting for parts and availability. Kirsten and I (and Basel) drove into town to the pet store and our annual Skor Blizzard! Yum. I'm pretty sure my illness is just a sugar deficiency ;-) For supper Kirsten made sweet potato tacos 😀

We came home Tuesday morning after a coffee with Kirsten (and Basel). I managed 2 days at the trailer without a big PEM crash afterwards, although I did spend a lot of time on the sofa feeling not exactly awesome the next day! But it was better than I'd hoped for. In fact, Wednesday I pulled it together enough to have Kari and Kirsten over for lunch (tomato sandwiches again)... Again, I didn't have a big crash.

The dogs got more time to bond while we had lunch! Lupa wasn't feeling well though so she skipped out on playing…

Thursday I made 2 trays of focaccia, tomato sauce, cooked potatoes, and prepped some stuff for supper. There was also a trip to the groomers with the dogs. By the time Pat arrived, I was done for and starting to feel pretty sick. There were a few moments when I thought I'd collapse onto the floor, but powered through. When we sat at the table I wasn't sure if I'd be able to eat, but somehow managed to scarf down a big steak and some of Carm's too! Pat had brought a cake for dessert (yum!). I crashed in bed while they caught up on the ‘Reacher’ series!

It was too much to do in one day. Carm is a great help but I feel bad asking him to do more and more. He already carries the biggest load around the house! But, as I am learning more about recovery, it seems that getting more help now will eventually lead to needing none!

Friday I had a bit of a crash day which has lasted into today, but again, not as hard as a few weeks ago. I'm exhausted and weak but not nauseous or feeling hungover. I haven't done more than the bare essentials, and I did slice a giant zucchini with the mandolin (which left my arms feeling like rubber!) but I think I've found a baseline… no treadmill yet, but an hour of kitchen time interspersed through the day, plus a 10 minute walk in the field with the dogs and butterflies, a bit more time in the kitchen, and some light puttering around the house seems to be good. I'll try to stick with that for another week, then I'll reevaluate if I can add 10 minutes on the treadmill.

Go slow to go fast!

This morning I made some ‘Tears of Agnes’ finishing salt from one of Olaf's hot sauces. It turned out good and was awesome on a hard-boiled egg and later on a tomato… I'll try it on popcorn tomorrow night! I mixed 5 tablespoons of kosher salt with one tablespoon of hot sauce and dehydrated it - next time I'll just use 4 tablespoons of salt to intensify the heat a bit more!

Oh, and the mosquitos are on a whole other level this year. I haven't been on the deck for 2 weeks except for lunch with Kirsten and Kari, but were driven back into the house when we tried to sit on the sofa… just stepping out the door is a bloodbath. I've been wearing a hoodie to take the dogs out - I can pull the hood up and at least protect the back of my head and my ears. My arms flail trying to keep them biting the rest of me.

And the rain! Still the rain! Today we are having sunshine for a change.

Awesome!

“hot sauce salt”

“no rain today”

“the field is a riot of wildflowers and butterflies”

baseline

This is going to be a long and whiney, repetitive post so feel free to skip reading!

The last few days I've been mentally struggling with getting my head around this illness and what it means for me… I'm deep into the book that I downloaded (Get Your Life Back) which is helping but making things worse. It's given me a plan for recovery but honestly, the plan sucks.

I go back and forth on what is real and what I am making up in my head. Is my own brain imagining my fatigue and illness and if I could just convince my brain that I'm actually fine I'd be back to my old self? Or is it real and my body truly is sick - or maybe both can be true at the same time? I feel stuck in this conundrum.

From what I've read, it is a true medical condition where the mitochondria are not working well to produce ATP which is the energy for our cells. There are other aspects to it, but they boil down to this (from what I've understood so far). How did it happen? Sometimes it can be triggered by a cold or flu, or sometimes by extended stress. I didn't have a cold or anything when this all started - although I'm not really sure of the initial stages. Did the stresses of last few years (Mom’s cancer, my cancer, Mom's meningitis, Graham's passing, Dad's failing health, the situation south of the border, pushing myself to exercise and get fit) finally overwhelm my body? I don't know and I guess it doesn't really matter because here I am now.

A few days ago I felt optimistic -  “I've got this”. I'd had a busy week last week which made me feel pretty sick but was recovering and had a few better days. I was keeping within an energy window - in other words I wasn't doing much… I would have a leisurely coffee in the morning, walk for 10 minutes on the treadmill, rest for a while, do 20 or 30 minutes in the kitchen, rest, take the dogs for a 10 minute walk in the field, rest for a few hours, make a simple supper, and maybe some light puttering throughout the day. After 2 days of this I woke up feeling pretty good. Mentally I felt good! Physically, I was a bit fatigued but not dragging myself, and was not feeling nauseous or dizzy. My brain was not in a muddle for a change!

That was a good day. I did my usual morning routine, including 10 minutes on the treadmill (just 10 minutes!), then we went out to a shop in the village - a 30 minute outing. I did a few other things throughout the day but nothing energetic.

The next morning I woke up exhausted, fatigued, and feeling sick to my stomach. One of the hallmarks of me/cfs is ‘post exertional fatigue’ or PEM. It's a 24 - 48 hour delayed response to ‘over-doing’ it. I know that this was not in my head as I was NOT expecting it at all and thought I was starting to be on the mend and that it would be another great day. This was not part of the plan!

From the book, the first step in recovery is finding your ‘baseline’. Or the amount of energy that you can expend without triggering PEM. I guess I've found my baseline and it's not great. It doesn't even include a 30 minute outing! Friday, the first day I crashed, I did the bare minium… no treadmill, minimal time in the kitchen, not much at all. Lots of lying in bed or on the sofa, trying to read or listen to the book but having no luck as my brain fog was brutal.

Yesterday we had to drive to get the dog's raw food - it's a 45 minute drive each way but even as a passenger it was exhausting. We got home, got the food into the freezer (after rearranging and shoehorning in the blocks of food), and then I crashed for the rest of the day. I felt nauseous, dizzy, and exhausted. There were times when I could barely get the energy to take another step. How am I today? Not great but not the worst either, but mornings are usually my best time. I've started doing supper prep in the morning while I still have energy…

So there we have it. My baseline is low. I can barely do anything other than the absolute bare minimum. I cannot get myself to accept this! I'm supposed to find my baseline and stick with it for 2 to 4 weeks until fully stabilised, and then I can add a tiny bit more activity while keeping within my energy budget for another 2 to 4 weeks. This continues until I am recovered in 6 to 12 months. THIS FUCKING SUCKS! How am I supposed to do basically nothing for so long?

We are going to the trailer for 2 nights this afternoon so we'll see how that goes. It's an hour in the car but no traffic so it's a little easier on my brain. Then at the trailer I have to walk the dogs a few times a day. A few weeks ago we were there and I actually had a few good days, so maybe even with the extra walking and socializing I stay within my baseline… or worse, maybe my baseline has gone down even lower since then… I guess the next few days will tell.

I usually go to the trailer with heaps of food, but this time, tomato sandwiches… I did make focaccia on one of my better days last week which has been in the freezer. A tomato sandwich on focaccia is not a hardship and in fact I can eat them day after day without getting tired of them! Thank goodness Carm has no problem eating sandwiches as that's pretty much all I've made lately.

I can see now why so much of the book focuses on mindset and acceptance. It is impossible to recover if you don't accept your limits. This is the hardest part. I don't tend to have a ton of patience and do have the habit of pushing myself. I'm finding it very difficult to accept that this is my reality, at least for the next little while. 

I'll finish with a small whine about missing out on my trip to Alberta for my cousin Aura's wedding… she danced at my wedding as a little toddler - I'd hoped to dance at hers… I don't cry for myself much, but this did bring some tears to my eyes…

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I have friends going through even worse things so I feel bad about complaining - I have it easy! But I've found that I can have two opposite truths: it sucks, but it's good (i.e. it could be worse). So I'm grateful but railing at the same time! And I see that almost everyone has something that they struggle with - I don't want to dismiss their reality!!! Maybe I've articulated some of their own mental struggles…

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The weather has continued to be on and off again. And the mosquitos are still keeping me off the deck :-( Today it is pouring rain… yes, more rain!!! There were even more mosquitos when I took the dogs out a few minutes ago - they seem to be able to manoeuvre through the raindropp. It's been the wettest summer on record - the grass in the hayfield never browned off, the grass on the lawn has been growing at a ferocious rate all summer - no late July/early August reprive…

I'm going to end this by saying that yet again, Carm has been my rock. I don't know what he thinks about all of this but he has been doing double duty in keeping the household going. And all without a complaint, although he did have trouble understanding that I physically couldn't rotate the king size mattress yesterday!

Awesome!

“a freezer full of dog food”

“cheerful budgie chatter”

“and yes, tomato sandwiches again/”

mindset

I got a little bit of puppy therapy this afternoon 😀 Kirsten dropped by with their new family addition, a 13 week old Swiss Mountain/Bernese Mountain dog mix. He's totally adorable and will grow up to be a gorgeous guy! We wanted to introduce him to our crew - Adia was very interested and perhaps a bit pushy with sniffing, while Lupa was totally out of control and had to be leashed the whole time.

We did a lot of approach/retreat which eventually led to her ‘quietly’ sitting - and by quiet, I mean totally focused on the next bit of food I'd give her! Still, it was progress and while it would be great to have a ‘simple’ dog without all her baggage and high anxiety, it's not our reality - at the end of the day, I have to deal with the dog I have in front of me, and not some hypothetical dog that doesn't go to 11 on the dial!

In the same vein, I'm learning to deal with my reality and also learning that I can't force my way to better health… I've been researching me/cfs as that's my likely diagnosis - much tracks exactly, including periods of PEM, or post exertional malaise.  PEM is a delayed response to over exercition, physical, mental, or emotional. It doesn't always show up right away but often the next day or even the day after that. All my years of record keeping is coming in handy - I've even added a few more fields to track energy and level of awfulness so that I can see more detailed trends.

A few days ago, I realized that I could continue to rail and rant against what is happening to me or I could accept that this is my new normal and build from here. I immediately started to feel better, not physically yet, but mentally. Some of my reading is depressing - not everyone gets better - but I've also stumbled on positive ideas for recovery. Some of what I read suggests that pacing and not pushing is what will trigger recovery… I had the start of a plan!

Making that simple change to my thinking made me feel more positive and that I am going to get through this! I started getting videos in my feed from an organization called CFSHealth. They have a 4 week recovery program but it's $500 - I'm not desperate enough for that yet, so I’ll see what I can do on my own.  BUT! Yesterday afternoon a post came up - they also have a book - which turned out to be free through Amazon's music & podcast app! The timing was perfect.

The first few chapters have been about creating a growth and recovery mindset which I was already developing so I'm on the right track. Part of the mindset is taking responsibility and not waiting for someone else to fix it… that's the easy part for me in some ways - I've spent 22 years taking responsibility for bipolar, so this is a natural step.

Now I'm reading about pacing and how important it is to keep within my energy envelope - it boils down to gentle activity with rest periods before my energy is too low. I’ve already adapted to having less energy - I've gotten used to my arms and legs feeling like lead! But now I'm learning how to listen to my body better - when my head starts to get fuzzy and dizzy, and the fatigue drags at me, I stop what I'm doing (this is the hard part! Don't finish the dishes!) and lie down for a little while, then I can build enough energy for another bit of activity. I'm learning that the trick is to stop right away which is against my normal way of being - I tend to push, push, push myself which only sets me back and even lowers my baseline.

So here we are… I'm learning to listen to my body and to be patient with myself. It is what it is, and fighting it was just making me progressively worse. But now I have a guideline and a plan! This is what I'm good at!

Through all of that, we had a busy week that I'm finally recovering from - no nausea or dizziness for me at all today or yesterday… 

Last Tuesday we had supper out with Leo & Eleanor, then Wednesday Tina & Bruce came for supper and the night. They left around 11am Thursday, so I rested for a few hours before heading to my parents for a farewell dinner for Kari. It was not a great night for me - I felt awful: sick and tired. The fatigue is bad - it can be like moving through quicksand, but the sick feeling is horrible. I had to leave the table after I finished eating to lie down in a chair. I had flights to Alberta for my cousin's wedding - leaving tomorrow - but I realized that there was no way my body would deal with 6 days of travel… luckily it wasn't a huge penalty to cancel my trip. I'm sad not to go and will miss out (too much FOMO!), but it was a relief as I honestly didn't know how I would pull it off!

So much for the shoe shopping!

Anyway, Friday was a rest day, with a bit of cooking to prepare for Sunday. Saturday was Trudie's celebration of life. We gathered at the cemetery - it was a beautiful day - and then reconvened at a community centre for some reminiscing. I think Trudie would have been (mostly) happy with how it turned out…

Sunday Jo Ellen, Don, Deirdre, and Chris came for lunch - how many years did I have morning coffee with Jo Ellen and Chris. I'd need more than my fingers and toes to count them out. Tomato sandwiches again! The joy of August has to be the never ending stream of tomato sandwiches! Wednesday second supper, Friday supper for just Carm and I, Sunday lunch, last night's supper, and finally today's lunch with Kirsten. All on tasty homemade focaccia! I made a new batch of focaccia to take to Kirsten's next weekend for yes, more tomato sandwiches! hurray!

Yesterday Mom & Dad dropped by to bring their budgies for us to babysit for a few weeks :-) They are a bit freaked out still, but eating and starting to sing a bit. It's a lot for them to take in!

I do have one major complaint to make though… the mosquitos are HORRIBLE! They swarm as soon as you step out the door. Even the back deck is uninhabitable… I tried with no luck to read outside this afternoon. We took down the shade and came inside. Boo hiss! There isn't much summer left for the deck. We've never seen them so thick and aggressive. I can't recall ever being forced inside from the deck except at dusk. Never during the day 😞 

We have been seeing lots of giant dragonflies though! Did you know that hummingbirds also eat tons of flying insects?

Awesome!

“tomato sandwiches”

“Kirsten's new puppy”

“a visit from Mom & Dad”

“friends together”