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…

—-----------

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…

 —-----------

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/”