When to Say “When!”

Oh it’s been a week, Chronic friends.

Busy is good, right?

Busy is the goal, yes?

I’ve got this problem. I hate to even say it out loud, but I have to.

I’ve been having trouble with feeling well.

That’s a weird thing to say, I know, I promise it’s not a typo. Allow me to explain:

I have felt not well for a reallllllly long time.

Try 12 years, give or take a few months at a time.

I am used to waking up closer to the afternoon than the morning, dragging myself out of bed, changing into clothes that most people would still consider pajamas but that I did not only because I hadn’t just slept in them; going downstairs, plopping on the couch, and promptly falling asleep again.

I am used to being so tired and in pain and dizzy, dizzy, dizzy that showering was Victory! and going outside was cause for Joy!

I am used to not

Not being able…to empty the dishwasher, let alone fill it.

Not having the energy…to play with the dog even though she brought her ball right to my feet.

Not knowing if I could handle…well, anything.

So this whole functioning thing is new to me.

2014 has been so wonderful in terms of my personal health progress. I’ve got great doctors who have me on the right track; I’ve learned to breathe correctly and more frequently; and I feel like I’ve made some important emotional growth. Also, happily, I’ve figured out (through MUCH trial and error) how not to induce a heart attack while exercising.

With all this newfound ability, I’m finding it hard to say WHEN.

As in, “Ok, I’m done for right now,” or, “I need a break.”

It’s a confusing place to be in, finding that you have some energy, some stamina, some motivation, yet not knowing how much or if/when it will run out.

Here are some examples:

I haven’t been able to handle the overstimulation of going to the mall in what feels like forever. There’s so much to see! I feel like maybe I have energy; I feel excited to be here; we’ve been here for an hour…what’s another? And then another…

Previously, exercising was hard. No, that’s an understatement. Exercising felt like torture. I couldn’t breathe, and my chest would pound so hard I couldn’t hear anything except my heart beating. Now, I am doing a Couch to 5k program. I am running. I’ve been doing this for a little while now, I feel comfortable. It’s time to take it up a notch. I’ll go for a little longer. And if I’m going to do that, why not go a little faster too?

I haven’t had a blackout in 6 months (WOOHOO!). This means I can safely empty the dishwasher. (Blackouts + Breakable Stuff = “Hey, sweetheart, let me put Grandma’s China back in the cupboard, mmmkay?”) And while I’m here, why don’t I just fill it, too? And wipe the counter. And put the groceries away. And then get back to what I was in the kitchen for in the first place: making dinner, which I also wasn’t able to do by myself for a long time. And because I’m making my dinner, I’ll feed the dog, then take her out, then reheat my dinner because the dog never wants to come inside anymore…

Plus I’ll write my blog, stuff some Christmas card envelopes, try really hard to pay attention to the Medical Transcribing class I’m taking, and I probably have a doctor’s appointment squeezed in there somewhere.

So all of that was Tuesday…

I have done some version of all that stuff every day for the past few weeks.

I don’t want to say When.

I’m scared of When.

If I say When, do I get to get back up again later, tomorrow, the next day?

What happens if this “When” is my last one, and there’s nothing to say When to tomorrow?

It’s making me a pinch nutty.

Plus it leads to days like yesterday, Wednesday.

I woke up. I went downstairs, had breakfast at normal-people breakfast time, and was on my way upstairs to get ready to do marathon-errand-running with my Mom before I had a dentist appointment (my second of the week- darn cavities!).

Except instead of feeling bright and sunshine-y and ready to take on the world all I wanted to do was go back to sleep.

So I did.

I got up around lunchtime, did the dishes, put the laundry in the dryer, got dressed, paid attention to the dog and her needs, etc. I felt like a Zombie, but a Zombie who could probably handle getting her cavities filled, despite still being sore and jaw-achy from having the previous set done on Monday. I was all set to go.

Then the dog wanted to go out.

Suki, my sweet, sweet love, is still wearing her cone from having had eye surgery a month ago. She’s healing, and that means no toys, no running around, no to pretty much all of her favorite things. She’s cranky. And the way she has decided to express that cranky is to sit in the middle of the driveway and not move.

Deadweight, with a “you can’t make me”, sort of attitude.

By the way did I mention that it’s like 20*F outside and the wind is blowing so hard it knocked over the trashcans?

At least it wasn’t raining this time (#Monday).

I humored her for 25 minutes. Then I started to get cranky, because she still had to do her business and I needed to leave for the dentist. Plus, I couldn’t feel my nose any more.

Eventually, after much cajoling and finally just scraping her furry little bum off the pavement, she did her thing and we went inside.

Where it was decidedly not 20*F.

There are a lot of sucky things about POTS and the other chronic illnesses that hang out with me. For instance, I am not a fan of tachycardia, vomiting, or overall soreness.

But what really, truly sucks is my body’s inability to regulate it’s own temperature.

This is what happens when I walk inside where it is a humidifier-ed 74*F from being outside in cold, dry, windy, 20*F air for the past half hour:

~My chest tightens instantly, causing me to feel like the wind has been knocked out of me.

~My head starts to pound and I see colors and spots instead of normal vision because the temperature change affects the way my veins constrict (cold=tight, warm=loosey goosey) so my blood flow is all off.

~My skin flushes and gets itchy because my mast cells think warmth is an enemy invader.

~My internal thermostat, trying to be helpful, warms me up too quickly, and so I break out in a cold sweat which completely soaks me, from my hairline to my socks.

~All conscious, rational thought is completely scrambled by this incredibly sudden and all encompassing turn of events, and so all conscious, rational reaction is completely scrambled as well.

I didn’t make it to the dentist. I was crying too much.


Somewhere in my tear-streaked meltdown, I realized that stuff like my body’s inability to deal with temperature change is probably never going to go away.

This sucks.

However, the fact that I completely fell apart and had to cry about it for <WayTooLong> doesn’t have to stay with me. I had emptied my wells of “rational-thought surplus,” spending my energy on walking around stores for an extra hour AND writing my blog AND studying for hours AND stuffing Christmas cards AND making stuffed animals all in the same day.

I didn’t keep any Spoons on reserve for actual chronic illness hiccups like coming into a warm house from the cold outside.

(Spoon Theory: http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/)

I’ll say it again: I’m having trouble with feeling well.

I’m not ungrateful, by any means; in fact I practically kiss the ground I run on each and every day because I’m so happy to have any sort of progress.

But I haven’t quite figured it out yet.

I’m sure that just like chronic illness didn’t happen over night, chronic wellness won’t happen that way either.

I’m learning.

I’m working hard (but not too hard!) at it.

I’m writing this blog, and then I’m taking the rest of the day off! It’s time to recharge my Spoon supply.


I would love, love, love to hear from you, Chronic friends, about how you find a new normal during times of improvement. Are you scared of taking breaks, too? How do you deal with that “I’ve got an hour of energy, I’m going to do everything I’ve been neglecting for the past week all in this one moment!” feeling? Thanks in advance for your thoughts!


2 thoughts on “When to Say “When!”

  1. sarcoidosissoldier says:

    Wow! I can totally relate. My symptoms aren’t the same because our diseases are different but the emotional roller coaster and struggle to find balance that you write about are things that I have to work at every day. I am great at fooling myself into thinking I am perfectly normal when I am having a good day and when I have several good days strung together I become convinced that I am healed. Then I’ll crash and I realize yet again that I have a CHRONIC condition. I’ll have ups and downs and the answer is simple…I have to accept this. Enjoy the energy when I have it and not feel guilty when I don’t. Lists are very helpful for me. But more than that is setting just a few goals a day for myself. I make sure I get those met and once they are met, then I decide if there is any energy left to tackle something more or not. By trying to keep my goals simple and realistic, I am better able to manage my expectations. It’s a process. Sometimes I am better at it than others. I just have to remember to be kind to myself no matter what because I can be hard on myself.

  2. abodyofhope says:

    I really do appreciate you sharing this about how you have gotten from being very very ill to now doing so much more. I believe I’m in the in between stage. Now I’m stabilized finally, but very far from being out of bed and doing… I can’t see that far ahead and it seems impossible and makes me feel overwhelmed and frustrated, but hearing from you nad knowing you have gotten so far makes me have so much hope. Thank you. I know it cannot be easy and you have to be struggling every day. But thank you for sharing how you are pushing ahead.
    Hugs and spoons

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