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”

7 zucchini on the counter

So much time has passed since I last wrote (July 20th!) but nothing much has changed. Summer is racing by and it seems like it will be a short one this year 😞 It started late and the weather forecast going forward isn't great… last week we had 217mm of rain - that's over 7inches! The hayfield swale is still draining water, the creek was in flood, and the ground everywhere is saturated. It's the total opposite of last summer which was such a drought that even the car wash places were closed!

Today is gorgeous though! I stupidly wrote down the wrong time for my doctor's appointment this morning so I drove all the way there and back for nothing - 55 minutes wasted - dooh! That used up my allotment of energy for the day but luckily Carm was back from golf to drive me back this afternoon.

I did get some time to sit outside! Last week we had so many rainy days, and then there are the days when it's too much effort to even take the cover off the sofa out there so today was a bonus :-)

I still don't know what's wrong with me… 😞 My doctor and his resident are leaning towards me/cfs but I have more blood tests to rule out a few other things. I thought I was starting to be on the mend last week so started with a bit of time in the kitchen, then after a few days 10 minutes of walking, gradually increasing to 20 minutes, but then I hit a wall again and I'm back to barely able to do anything. My arms and legs feel like jelly… Even cooking can be a trial as I get so tired that it's all I can do to stay standing up - at times I feel such a strong need to lie down that the floor seems an option -  I've managed to keep upright so far!

It wouldn't be so bad (yeah right), except that when I get really tired it's like having a horrible hangover - my head gets foggy and dizzy and I feel nauseous on top of barely being able to move. It's really frustrating! I am so over this!!! It's time to get better now! I keep singing a little song to myself about all my cells being happy and healthy which may or may not help (but doesn't seem to hurt at least!).

We spent a few days at the trailer last week with Kirsten. Carm didn't have golf so he hung around as well. We did discover that a lightning strike took out our tv, furnace and airconditioner… luckily we had cool nights so we were able to sleep. We met up with the insurance adjuster yesterday to get the ball moving. It's too hot for the next week to do sleep-overs there though!

Kirsten and I spent some time at a dog show that wasn't too far away - she was interested in the St. Bernards (and we saw a couple of very sweet dogs). I don't need another dog at the moment but did meet two ladies with schnauzers and gosh, I was very tempted to get another puppy - which would be absolute insanity right now with my energy levels!!! But wouldn't it be fun for Lupa to have a sister her own size 😀 

Oh, and we went shoe shopping one day when I was feeling a bit better. I ended up with two pairs to try out at home - I like to test them out on the treadmill to see if they'll work on my fussy feet! I'm keeping both pairs ;-)  One is a pretty pair with sparkles (of course!) to wear for dress up times, and the other is a platform shoe, less dressy but still nice. Two weeks today I leave for my cousin's wedding in Medicine Hat and now have my dress and shoes sorted!

I see that I mentioned doing a ‘stress test’ in my last post. Well, I did it and it went well. It showed something possibly unrelated, but overall it said I had above average fitness and the technician mentioned that my heart rate recovered quickly. So at least my heart has been ruled out! My blood work ruled out iron, thyroid, b12, d, blood sugar, etc. Which is good I guess, although I'd hoped it was just a low iron issue which would be easily sorted out!

I have been complaining about my energy levels, but I guess I'd be remiss if I didn't also mention the heaps of zucchini that I've been dealing with! I made 2 loaves of a lemon zucchini cake last week. Then I used the mandolin to do long thin slices that I layered with homemade tomato sauce like lasagne. I cooked it for a bit, and then cut it up and airfried sandwich sized pieces. A sandwich with prosciutto (the one processed meat that I will eat as it has no additives), some black olives, fresh mozzarella, and a stack of zucchini slices makes a 5 star meal! So messy but delicious. I had it again tonight - yum!

Monday I thinly sliced some zucchini for a salad, but never got around to adding the dressing (which I did make)… tomorrow I might mix them with a homemade pesto, eggs, and lay them out on a baking sheet to cook. Maybe for a sandwich or maybe just to eat plain.

Well, this was just a whining post. I know that others have it so much worse than I do so I feel guilty about complaining… I try to keep that in mind and to be grateful for everything good in my life!

Awesome!

“the rain finally ending - should we start building an ark?”

“getting sandals!”

“lots of zucchini”

“just one schnauzer who likes to cuddle against me”