#parenting while sick

[iplaywithstring]

Every now and then I get slapped in the face with memories from before I was sick. My ME/CFS started in the spring of 2010. I thought it was just anemia (and I was anemic) so I kept having cycles of feeling better and then crashing, until I ended up so ill that I was sleeping 16 hours a day and had trouble being upright.

so it's been a long time and I've gotten pretty good at pacing and keeping within my energy envelope and not overdoing things too frequently. Which means my activity level is fairly low, but consistent.

And then I remember I used to work full time on my feet - in an environment where there weren't any chairs. I used to clean my house while the kids napped. I'd spend a whole day walking or hiking or exploring places. I was active, even with kids less than 2 years apart.

Sometimes I still feel like I'm lazy or not doing enough. Even after all these years I question if I'm really that sick, or maybe I'm just exaggerating. Maybe doing xyz wouldn't be so bad and I secretly just don't want to.

This is another round of grief. My husband remembers what I was like before I was sick - when I was in university and always involved in whatever was going on, worked part time while finishing a double major in 4 years, walking from one side of town to the other just because it was a nice day to be outside.

My kids don't remember - I have so many pictures of them hanging out in bed with me, and being out or doing something was such a big special day. Sometimes I feel like they don't know "real me" and they only know "sick me". They can tell when I'm exhausted or in pain and remind me to rest, and it feels like kids shouldn't have to do that.

But then I realize that by pacing and keeping myself as stable as possible, I am being "real me" - I do things that are important to me, I show up as much as possible for what matters, I share my thoughts and my passions and as much of myself as I can. I don't take the good days for granted and work to connect intentionally as much as I can.

Grief is complicated.

[iplaywithstring]

My daughter graduates June 24

Prom is on the 19th (18th? It's on the calendar, it's fine)

The dress isn't finished yet

Sleeves need to be finished and sewn into lining

Outer bodice needs sewn together

Outer and lining need to be sewn together

Bertha needs to be draped

Bertha needs to be attached

Gromits need to be put into bodice

I realize none of these steps are super huge, but also none of them have been able to happen this week. For example, the sleeves are drafted, but my kid isn't here so I can't measure for the cuffs, so I can't finish them.

The kid wants to sew the bodice together (now that I've done the tricky bit), and the other steps need that to happen first.

Also I probably could manage to mostly drape a bertha based on the bodice measurements, but it would be much easier to do with the kid in the dress.....so we wait.

Plus I'm planning the grad party

Also I'm doing a class but the proff is behind in posting videos which i need to watch to complete my assignment due on Sunday. So, that's fun.

And I've been not feeling well this week- two ocular migraines + one regular migraine with aura (the difference between ocular migraine and migraine with aura is that the aura is in both eyes/still there when you close your eyes, ocular migraine is in one eye - aura happens in the brain, ocular migraine is actually happening in the eye).

So basically I'm stressed and restless and not feeling very productive at all. But I can get some other homework done, so that's my plan for now, and then hopefully sewing after the kid gets home.

[iplaywithstring]

I've been feeling especially awful on weekends lately. It seems every weekend I'm sure I'm coming down with something. Low grade fever. Headache. Body aches. Just not quite right.

Which, for those of you unfamiliar, is a sign of ME/CFS flaring up. The ambiguous "flu like symptoms" really do seem like you're getting the flu, but then a couple days of rest later and things are back to baseline.

This is not sustainable and could lead to a bigger crash, and I don't have time for that.

I'm hoping it's down to 2 factors

My last class was brutal and very stressful, moreso than any other class I've taken so far for this program

My kids are in the school production which opens April 4 - the last few weeks have been very hectic.

I'm only working 1 day a week (last month it was 12 hours over 2 days), so I'm going to say that's a positive change. The new class I'm in is much less stressful and material I am more familiar with.

So maybe if I get through the next two weeks things will level off again? Term ends April 21 and I get two weeks off, which will also help.

[iplaywithstring]

The kids carved their pumpkins while I napped

Lit pictures will happen once I find the candles

[iplaywithstring]

We went for a hike. I might have regrets tomorrow, but my kids have memories and it's worth it.

[iplaywithstring]

I know that wrist strap readings are inaccurate and all, but this is helpful for me - a reminder that my symptoms are a result of physiological changes and I'm not just exaggerating or whatever. This was sitting upright, a little more than an hour after waking up, after a cup of coffee. I was on my feet a little bit, but nothing significant. I had an adrenaline surge around vacation (and a few days before, which I used to start painting my kitchen). I did so well on vacation - only one really active day (Friday, 11k steps, most of them over 6 hrs at a historic site), the rest of the time was mostly chill. The last 3 days I've rested (well, aside from the 6 hrs in the car). Yesterday I felt better than expected, but my sister in law was here so I think I was still a bit "on". I didn't let myself get back to painting or go for a walk because I figured worse was coming. Today, I have pain and I'm walking through sludge and have a few other things going on, but I'm out of bed for now, so it's not so bad. Plans for today are reading, having a nap and not cooking supper. I hope to go see an outdoor play tomorrow night, but if I can't make it, it'll be ok. Otherwise it'll be more resting, maybe some bobbin lace. ME/CFS is hard. Its hard reconciling the 11k steps on Friday and 1479 yesterday. It's hard feeling embarrassed because yesterday I had to ask for help opening a ziplock bag. It's hard being upstairs in bed when my family is all together doing something I can't be part of. It's hard seeing the look my husband gives me when I'm in pain or nauseous or generally feeling awful but trying to ignore it. It's hard putting things off and not really knowing when I'll be able to get to them. It's hard feeling unsure about all my choices.

[iplaywithstring]

Perfect day to teach the children how to build a fire when all the wood is wet

[iplaywithstring]

Today I have done TOO MUCH and I am not going to nap and it's completely likely I will have regrets. Tonight my husband is taking our son and a couple friends to a hotel to swim and play video games and eat free breakfast because that's the easiest way to do a birthday party. I am not involved in any of this, but I've still been all hyped up all day. So I cleaned the bathroom and did laundry and went for a walk and I'm going to finish threading my loom and fold more laundry and I'm going out with a friend for supper. Because why not? I can't sit still without feeling like it's wrong and my brain won't let me sleep and aside from doing the bathroom and a walk on the same day, it's not really all that much more than I'd normally do. We will be at my inlaws from Sunday to Wednesday, I will rest and recover there, and then we'll have a few kid-free days, which will also be very relaxing. If tomorrow sucks, I can live with that.