Learning About Exhaustion

 The past several days have been all about exhaustion.  

I decided to keep a couple of small routines; breakfast with my husband, make dinner.  Otherwise, I do what my body says it is up to doing.  Some days I'd start out on the computer; others, housework.  Some days I'd sit down before running out of energy, while others I collapse on the couch in frustration.  Rarely did I achieve more than 3 hours of "doing".  

There were two small storm systems in the past five days.  I promised myself I would allow myself to feel what the systems did to me.  Pain.  Exhaustion.  Weak joints.  

The pain had several forms.  Skin buzzing.  Buzzing in my ears.  Muscles tightening and releasing (sometimes) without conscious thought.  Muscle pain.  Aching.  Joint pain.

My legs were more unstable than usual, and I found myself nervous about the basement stairs.  More nervous than usual.  One knee and hip send painful reminders that they want to dislocate.

All of this is exhausting.  Then add the management of them.  Keeping track of which rescue meds were already used.  Finding comfortable ways to rest, because there isn't one I have to change position often.

Chronic illness is not easy.  Ehlers Danlos Syndrome is not a joke.  

How Did I Manage For So Long?

 I am stubborn.  My parents say I get it from my grandparents; all of my grandparents.  I guess that makes me some kind of epic stubborn.  All I know is, right now, I think that is how I managed for so long.

Yesterday wasn't too bad.  Awoke with more energy than the previous two days but made sure to not do much more than I did previously.  Was tired before noon, so I rested.  Then I became one with the couch.  Again.  Dragged myself off in time for a 2 hour online class I'm taking, then passed out after dinner.

Slept all night.

This morning, I'm really tired.  But, I'm enjoying making breakfast with my husband and didn't want to miss it.

I realize a little while into chopping veggies for an omelet that I shoved my exhaustion into a corner.  Mortared the bricks and all.  It was unconscious behavior, but at some point in 30 minutes that morning I took my exhaustion and made it "go away".  But it wasn't gone, it was waiting.

It took a lot of mental energy, but after a couple hours I was able to convince the wall to come down.  The exhaustion is now back, with gusto.

I have been doing this for a long time.  The extreme exhaustion upon waking being put aside so I can teach.  Then wiping me out after school, if not falling asleep, discretely, at my desk for a short nap during my prep time.  Because I have to.  I don't want to stop teaching.  I love teaching; it is a part of me.  I had to care for my own children.  I put my own body's needs to the side for so long to care for others that it became really easy to do.

This isn't physical, it is psychological.  Putting other's needs above my own, even when I'm doing it because it is something that brings me gratification.  I wish I knew more about psychology to put a name to this.  It makes me curious, and I love learning.  

But, right now, I need to take care of my exhaustion.  And researching can be exhausting as much as rewarding.  This isn't just my experience, it is back by research.  

Today's discovery shed a lot of light on comments made by medical professionals about being impressed at how well I hold up considering my considerable medical issues.  Guess I was too stubborn to know otherwise.

Reference:

Hammer, Ashley. “There's a Reason Your Body Is Tired When Your Brain Is Fried.” Discovery, Discovery, 1 Aug. 2019, www.discovery.com/science/Body-Tired-When-Your-Brain-Is-Fried.

There Is No Normal With Chronic Illness

 After my glorious thoughts of setting a morning routine, my body declared otherwise.

Yesterday began with me feeling okay.  Not great, but okay.  So I decided it would be a good day to do a couple of low stress items.  Make a phone call or two.  Play around with my favorite programming language and investigate some new ways to teach the basics.

By 10:30 I started feeling weak.  By 11am I gave up and went to the couch.  Most of the rest of my day was spent there.  Crocheted some.  Binge watched a show which I then finished through the show's finale.  Had another severe tremor episode.  Watched the documentary-drama The Social Dilemma.  Attended an online class concerning the recent Game Stop stock manipulation (or was it really manipulation?).  I found paying attention in the class difficult, even though it was only an hour and a half.

Today, I felt okay, like yesterday.  So I expected to have trouble.  I did.  After less than two hours of investigating new ways to teach basics in coding I am giving up.  That's when I realized that I didn't post yesterday.

So much for that routine.

On the positive side, I have a telehealth with my GP this afternoon.  And my couch.

There is no normal when you have a chronic illness.  I am learning this, or, at least, that is what it seems I'm learning.  I've got to learn how to let go and take care of myself. 

Weekend Routines Are Difficult To Break

I've mentioned before that I like my routines.  Routines bring me comfort and low stress.  But I need to rest more, find my new health baseline, and this weekend showed me how dangerous my routines can be.

For over two years, and slightly adapted a year ago when quarantine went into place, my weekends were similar.  Clean the house.  Unpack a box or two or five.  Rearrange.  Sort.  Organize.  Moving to a new smaller home meant a lot of work.  And we are still working on it, just not as intensely.  However, often working to exhaustion and looking forward to work on Monday because it would be less physically involved.

I am supposed to go easier on myself physically and mentally.  I had to constantly fight myself to rest.

I'll only unpack this one box became two.  Then two more.  I'll only clean this space, then I find I'm cleaning the entire house.

Routines.

I struggled last week because I felt the need for routines, then the weekend comes and my routines are my downfall.

Irony?

On the positive side, I only had one severe tremor episode and I will definitely sleep well tonight.

Wintering is not easy when you are leaving constant activity for rest.  I think I will try establishing a small, easy routine or two next week.  Like writing in this blog each evening.  Breakfast with my husband.  Perhaps an hour or two of listening to a book or learning online.  Definitely watching for the little routines to show themselves instead of me designing them.

Reopening Of Schools For Full Time In Person Learning

Whether or not K-12 schools should be open for in person learning is a hot debate.  One argument is the need for children to have social interaction and easy access to teachers and staff.  Another argument is the dangers of possible exposure.  Yet others indicate the need for vaccines.  Meanwhile new variants emerge, vaccines become available yet not for everyone, and children nationwide are experiencing varied approaches to adhering to the CDC guidelines.  Earlier this week the CDC Director stated that schools should reopen for in-person academics.  Additionally, news outlets are stating the CDC Director also states that K-12 schools can safely reopen without vaccinating teachers.  These are research backed statements, but the concern is what is not being said.

Firstly, yes, children need to be in school.  They need fair and equitable access to education.  Can this happen online? Yes.  Can this happen in a school building?  Yes.  Education can happen anywhere those with knowledge or skills are willing and able to share in a way children learn.  School is a concept, not a building.  The push for children to be back in a school building presents as a societal need; one being placed on parents who need to be able to work and not assist with online teaching, but is not limited to parents.  There are others who make this difficult for parents, whether employers with strict times to work or the pressure to work extra hours to afford the now required Internet access.  Society is slow to change, but Covid-19 is not.

Research being quoted by the American Medical Association is that the data shows schools are safe.  But there are many questions not addressed.  For example, which schools are open?  Where?  Community transmission levels?  How do you define "safe"?   Are the schools that are part of the data collection hybrid or full time?  How large is the student and staff population of these schools on a given day?  Are they following all of the CDC guidelines for safety within schools? What is the level of infection amongst teachers, staff and students who are online only? 

How are communities being held responsible for keeping children safe?  So many reports expound on the lack of mask wearing, and now encouraging wearing two.  Travel between states via car and plane is increasing.  How do you keep communities responsible?  

What about vaccines?  Availability of vaccines varies greatly between states, but one constant is that children, those under 16 years old, are not eligible.  What about teachers?  As of February 4th, in 24 states, DC, and Puerto Rico all or some teachers are eligible for vaccination.  Even though the CDC recommended teachers are in phase 1B of the vaccine availability, states such as Indiana and New Hampshire do not have teachers eligible until phase 2.  

Finally, we are still learning about this disease.  Covid-19 is barely a year old.  Yes, our knowledge of epidemiology is much better than when learning about Polio, but Covid is mutating into new variations.  Multisystem inflamatory disorder in children (MIS-C) is rare, as are children showing symptoms.  Though early evidence pointed to children not being very contagious, Harvard Health reports that more recent studies show that they can be.

Society has not evolved to handle the reality of schools needing to be closed for extended periods.  The CDC Director is receiving pressure to declare in-person schooling to be safe.  Research is being presented, but without enough supporting evidence for this multifaceted problem.  The virus is evolving, mutating, and it's effects upon K-12 children still not well known.  Yes, children need to be educated, but they and their educators should also be afforded the knowledge that this education is being conducted with an understanding that it is safe. 

This is not a numbers game.  These are human beings.  

References:  

“COVID-19 - SCHOOL REOPENING: Indicators to Inform Decision Making,” September 15, 2020. https://www.cdc.gov/coronavirus/2019-ncov/community/schools-childcare/indicators.html.

Honein MA, Barrios LC, Brooks JT. Data and Policy to Guide Opening Schools Safely to Limit the Spread of SARS-CoV-2 Infection. JAMA. Published online January 26, 2021. doi:10.1001/jama.2021.0374

Lovelace, Berkeley. “CDC Director Says Schools Can Safely Reopen without Vaccinating Teachers.” CNBC. CNBC, February 3, 2021. https://www.cnbc.com/2021/02/03/cdc-director-says-schools-can-safely-reopen-without-vaccinating-teachers.html.

“Operating Schools during COVID-19: CDC's Considerations.” Centers for Disease Control and Prevention. Centers for Disease Control and Prevention, February 3, 2021. https://www.cdc.gov/coronavirus/2019-ncov/community/schools-childcare/schools.html.

Publishing, Harvard Health. “Coronavirus Outbreak and Kids.” Harvard Health. Harvard Health, January 28, 2021. https://www.health.harvard.edu/diseases-and-conditions/coronavirus-outbreak-and-kids.

“Where Teachers Are Eligible for the COVID-19 Vaccine.” Education Week. Education Week, January 15, 2021. https://www.edweek.org/policy-politics/where-teachers-are-eligible-for-the-covid-19-vaccine/2021/01.

A Little At A Time

 A bit more strength today.  

Submitted my grades for last semester, a bittersweet ending to teaching at this time.  I still don't know where my path is heading, but am thankful for not needing to force myself to be "on" for 7 hours or more.  Even with the reduction of stress this little act today brought I still had to take medication to ward off another tremor episode.

I packed up my electronics to be dropped off at the school tomorrow.  These are needed for my sub.  In the process I did a little cleaning of the space, then set up my aging laptop, new webcam, speakers, and headphones so I can continue learning.  I'm trying very hard to take this week as it comes, but am forming ideas for routines.

Remember, I like my routines.

Doing a bit of mold cleaning in the bathroom was too much.  Shouldn't have done it, but needed to do it.  Will take a long time to change this thinking, if it is worth changing.

Otherwise, finished a couple more dishcloths.  Why dishcloths?  The dishwasher broke, again.  This time it looks like enough of a repair cost (at least one hose and a plastic water resevoir are cracked) that we are considering replacing it.  Until that decision is made, and the money is saved, dishes are done by hand.  I am happy I had several balls of cotton yarn lying around without a purpose.  Also gave me something that involved my brain and little movement while I rested on the couch.

The glimmer of a routine is hinting.  It is peeking out at me.  I'm trying to ignore it until later, but it is so hard for me to just rest.  Be still.  Heal.

Another Day of Rest

I keep reminding myself that if my body needs to rest then let it rest.  I awoke this morning with my muscles not feeling as heavy, but my joints were issuing a lot of complaints!  Felt like I had too heavy of a workout or PT session during the summer, only I did almost nothing yesterday.

This is part of being chronically ill; you cannot plan when you will need to care for your body's needs.  You cannot schedule your life without realizing that sometimes that schedule needs to be put off a day.

So my plans for today became my plans for tomorrow.  I spent much of the day on the couch, crocheted a few more dishcloths, managed a major tremors episode, and was able to gather the strength to attend my 2 hour online class in the late afternoon.  

I have a looming deadline for submitting grades.  I also have an upcoming window for the certification exam for the class series that ended tonight.  These will have to happen on time. 

But for today, I rested.  Again.