2021-03-04 - 7:12 a.m.

I saw this article just now and one thing bugs me about it.

https://www.wsj.com/articles/for-covid-long-haulers-a-little-known-diagnosis-offers-possible-treatmentsand-new-challenges-11606761541?fbclid=IwAR2WUMd3pKwZEj6mt-DP0txA1b4ejdArkv1mVWgr-Rk9jjO4hubYdEBbp60

I hate to disappoint the many Covid Long Haulers who have joined the dysautonomia club, but "Recovery" is a poor choice of word in relation to POTs.

FEW "recover".
POTS is a series of symptoms, a "syndrome" so they say caused by some trigger activating a chronic illness, OR a chronic condition in and of itself (etiology and underlying illness not identified). ( The underlying illness may be one of many autoimmune disorders, EDS, MCAS, Lupis etc...or unknown.)

Most with it do not "recover". The goal for treatment is to learn to mitigate symptoms to best of ability to best live with their chronic condition.

The goal for treatment is more realistically to learn to manage symptoms to be productive and happy more often than not, OR at least content enough of the time even while in pain. I am proud of my older kids who deal with chronic pain as they are more often than not able to manage that pain and find ways to do creative things with their lives that are fulfilling them. Yet they are fully accepting that they are disabled and always will be. This does not mean they are not able to participate in the world to some extent. It does mean that they often need to rest to be able to do so sometimes.

The biggest challenge I am having with my one teen with POTS is how to motivate them to try ways to mitigate symptoms other than just taking medication and sleep. I mean it is OK if that is all they can do. But I have frustration watching them not try other things to find out if they might work for them. EVEN if the other methods only work some of the time I feel like it is worth TRYING THEM. But this teen refuses.

This teen is super bright and respects math and science. So they won't just read a couple articles and buy into their feel good mantra. They go to the source. They find the studies. ( They is the preferred pronoun BTW for this teen if that didn't yet become obvious whenever I reference the teen.)

No, the myriad pop culture messages of mindset and exercise making one feel better are not convincing to my teen. They had to look up the oft cited PACE study which encourages exercise and Cognitive Behavioral Therapy to improve POTS;

and they looked at the criticism;

but then looked at what they could find on the methodology, and the data of the study oft cited;

and is convinced that the happy, optimistic "Exercise and you will feel better" is just abelist bullshit.
"Therapy can improve one's condition" is in their mind ableist bullshit.

I forget the small % of those participating who felt "better" in the oft cited PACE study, but it is actually true that the actual scientific studies DO Show a depressingly low percentage. Yeah, it helps a little for a few to do those two things (exercise and CPT) in conjunction with prescribed medications. They see a negligible difference based on what they read.

NOW that does not HELP The motivation of my teen to TRY

Nor does it help prevent further deconditioning.

That won't prevent things like bed sores long term if someone is bed bound.

So at least this teen is not THAT Bad. They were at one point. They hardly exited their room and just SLEPT.

I am so relieved now the teen is like a more typical teenager that enjoys playing video games and going on You Tube and cooking and baking. There is a HUGE marked improvement in physical capability and mood.
This teen at least does go to the doctor and take prescribed medications.

I am pleased there is terrific social interaction with siblings. There are three living here just now and all three are improving their relationships which is a joy to observe. They are actually acting like friends, or fienemies at least! (True for one sibling relationship. But then true two are actual friends. They tolerate the third and am so happy all three GET ALONG even if they fundamentally still have some deep core issues to work through in order to be real friends with the third. I am hopeful that is possible!)

However they still say they can't do school.

AT ALL.

So the challenge is that I told the school this in the Fall, after the kid had failed last year, then last summer.

and the counselor said "Well, why don't we leave them enrolled and try in the Spring" ( Oh but no, the counselor has to ignore the actual pronoun and name and and misgender and misname and have absolutely no respect after YEARS of being asked to respect my child).
So that also makes my teen want to ignore the persons who they find toxic. I encourage the teen to ignore that PERSON but not the WHOLE SCHOOL System.

But it is quite ridiculous that at age 16 when this chronically ill sick kid ( who at that point I believe had LESS mental fog and could engage MORE in school WANTED To just get a GED- they COULD NOT because in Virginia one must be age 18);
and now at 18 my teen can't even imagine doing work for an English 12 class. The thought of taking a GED is way out of reach just now. I mentioned it and they were angry saying they wanted to do that years ago.

So just forget that Physics class as realistic ( which they took and SHOULD have passed but for the teacher a couple years ago. That truly is the God's honest truth that even IF my autistic kid had socially been rude to peers, it was not justifiable that after those peers excluded them from the project next project meeting that my kid then got a ZERO. They worked darn hard on the project up til the final build. It was ludicrous the teachers misstep had such an impact. I don't blame the teacher at all! They just didn't handle it the best way for this student! Not their fault! This is a child that the teacher did not somehow understand had severe communication limitations and the teacher choose to be hardcore. It did not help at all ...)
but of course that is all past. But I GET it that this kid, with autism, is having a hard time letting that be in the past. Having a hard time re-taking a class they felt wronged in being failed for the work they did in the first place. I mean it was one large project- the kid SHOULD have remain engaged and passed THAT YEAR. But since I they have been enrolled in physics now THREE additional times.

That is just ludicrous.
To not listen to the kid that is saying

"I am done with school
I am not doing it. "

I told the school that in the Fall

It is just disappointing to see this kid not finish when SO CLOSE. Frustrating as at the onset of chronic illness there was ZERO Support given to this chronically ill kid.

The only support was the counselor accommodating enrolling in on line classes a couple years ago ( before it was considered a norm.)

But no one made effort to send assignments, no one made effort to send a freaking book or any guidance on working on line. The on line teachers at the time had auto generated cheery emails that were so incongruent with the kid being disengaged that it was ludicrous.

No one really knew a couple years ago at this local high school how to work with chronically ill kids. My kid is furious about this. The trouble is I WAS NOT at the time- and likely had I been and had been able to advocate more perhaps there would have been more support. However at the time I did not KNOW at the time we were dealing with a chronic illness ! I just thought my kids was sick and it was temporary. I hadn't fully grasped that my kid was suddenly chronically ill with a severity that was life altering.

At the time I was working full time and taking off to run kids to the heart specialist for diagnosis an treatment of POTS, and running this kid to an autism clinic at Childrens National in DC to get testing done.

This child was finally diagnosed with autism at age 17; they just got them in for screening right before their 18th birthday.

Without that diagnosis as a smaller child, there were no supports for autism in particular, just ADHD and in fact there are some unique distinct differences. Between just learning about POTS and learning about the nuances of the fact my kid is actually autistic I did the best I could at the time.

I found a great story and info on a non profit started by a DAD in Fairfax who dealt with this issue over ten years ago. I think for some reason when a kid has cancer people GET IT that those kids are chronically ill. For some reason dysautonomia is much harder for people to understand and empathize with. I love the way he put his efforts into helping other kids with cancer.

https://www.hopecam.org/

What a great way to make an effective change when faced with a challenge!!
Kudos to him!

I presume his kid was engaged in school.

Mine is not.
Mine refuses.

But I agreed to keep on the rolls to enroll the 18 yr old in Spring because my 18 year old said "OK" after one particular conversation last Fall when there was a moment of them feeling a bit more hopeful than typical. They said they would try.

And my teen did try. They logged in and did TWO assignments this Spring.

But that was it. I think after spending hours on each.... it just being so painfully slow, they are discouraged.

They don't see the point.

The frustrating part is WATCHING them as they are on their own personal path. I can't really do much for an 18 year old but allow a safe place to just be themself while they heal.

I am encouraged by those words of Dorothy Day as it is OK just just let people BE when that is what they need in a moment.

MARCH
It is MARCH and the two online classes end needed for graduation in early MAY.

So realistically passing them is not happening.

My kid will not have a high school diploma, and is quite OK with that. A high school diploma does not help regulate your heart or help you stand up and walk two blocks without puking or having asthma or feeling like your heart is racing and you might be dying of a heart attack, then perhaps having a panic attack.

A high school education doesn't allow you to have circulation work normally so you brain works like it should so you can process information and understand it and retain it so you can learn a skill.

This is their thoughts.
Where THEY ARE at.

So I have to meet the kid where at and try best to encourage, love and hope influence to see there ARE POSSIBILITIES for more.

SOMETIMES IT IS OK TO WANT MORE.

That mindset itself can be like a sickness, the one never satisfied.

It is OK to be disabled and OK With that!!! ACCEPTANCE is IMPORTANT. ACCEPTANCE is ESSENTIAL to one's happiness. I am good with ZEN

I am content with being content. There is nothing wrong with the act of just being. I think in fact it is an awesome thing. I read these articles sometimes friends post about how they are just discovering meditation or, yoga or how to be mindfully present and they make me laugh as our home is a content zen state of being.

Heck if you look at my teens there is nothing more meditative than gaming!

The zen of gaming.
YES

ACCEPT that you cannot change.
Enjoy just BEING.
YOU ARE ENOUGH.

I am GOOD with all of that.

The problem I have is influencing my kid to believe that they can CHANGE some things to be happier.

That there are things one can do and enjoy other than video games when one has a chronic illness!

But maybe my teens are actually correct and that it is simply abelist thinking to believe anything WRONG with their lack of interest and effort to try to do other things that they INHERENTLY just can't do right now!

HOWEVER I don't buy into this thinking. I think it is just bullshit that my kid "CAN'T" Do school at all.
The reality is my kid WON'T.

That is a very different thing. That is based on mindset. I KNOW if this kid TRIED they could succeed. They are refusing to try. Nothing I do seems to help them get out of this
"I Can't" moment they are stuck in. I don't buy it that they can't. I don't believe that is an ableist perspective in any way, but rather not buying into their negative self talk.

Abelism is a very real thing. YES abelism is a problem when the disabled body is not acceptable in society. Abelism is a problem when there is not prioritization of care. I could go on and on about that and intend to frankly in my own writing to clarify those thoughts. However it is NOT abelist thinking to believe that one is capable even when disabled! THAT TO ME is the OPPOSITE of abelism! I think my teen is reading but not quite understanding some of the criticism of the lack of inclusion of the disabled persons in society. HONORING the disabled body needs rest is critical, yes! But I think my teen is using an excuse of calling it abelism when anyone has any suggestion of self discipline and self achievement and goal setting. That is just bullshit. They are self deceptive and it is not helping them! Those are just excuses to not try. Excuses to not hold oneself accountable and excuses to remain in the space/place one is in.

It is a choice one makes to either grow or not grow.

The thing is, if one avoids growth they become stagnant.

That to me is the beginning of death.

We of course have to go though a series of death and re-births in life.

Rest is part of that cycle.

So for now, I am grateful baking and cooking are two hobbies my teen is enjoying.

I can't get them to do any exercise whatsoever.
I really want a PT to come into the home to work with my teens kids to do gradiated gentle exercise. (ALL of them!)

And YES it is FINE if disabled such that can not work and remain home doing only this that they are doing.

HOWEVER I just don't BELIEVE that there are NO OTHER POSSIBILITIES.

I prefer to see some spark of interest and trying and failing rather than not being so moved to think of any other possibilities.

Regardless, I suppose next step is officially unenroll this kid from school.

THIS YEAR they actually DO have two wonderful teachers!! I mean they are using preferred name and pronouns with respect ,they are reaching out, they are open to do whatever they can to support my teen. They are willing to test only for knowledge and competence. They seem to actually have genuine empathy and respect my teen and understand moreso than past teachers what a chronic illness is.

But all that doesn't make it tenable for this kid to engage in classes if the kid won't and doesn't feel capable of doing so.

Its the fixed thinking "I can't" which is what I have trouble shifting! I say that is an assumption and you don't know until you TRY.

Just try and you might surprise yourself!

I have offered to be the reader, the typist. I had offered to hire a tutor. Heck I had HIRED a tutor.
I hired a counselor.
I tried to set up music therapy.

At some point the teen just did not want to go and I really couldn't force them to.

The thing about having good support is they have to KEEP SHOWING UP even sometimes when there is resistance.

But once again , chronic illness is so misunderstood.

The window of opportunity for me to teach and train in habit feels like it has closed. I think that is where the frustration comes in.

MEANING BEFORE AGE 18 as a parent one can INSIST on things even if there is resistance much easier than after a kid is 18.

You can say, " You must go to school
etc." but after 18 it really is impossible to make your now adult child do anything they don't want to do. One can TRY various methods. Heck some parents make house rules and simply just kick the kid out if they don't follow the rules. That makes perfect sense for SOME Things,
But when a child has an actual chronic illness much of what would make sense for a typical kid of 18 just doesn't seem to be reasonable. Yes, some things still are the same!

That is the point I want to get my kid to see. That even if disabled, my kid CAN contribute. It is reasonable for them to TRY to contribute as they can. It is reasonable for an expectation to be placed on them to help out as able.

The thing is, when under age 18 a parent can insist a kid go to counseling. Just bring the kid to the counselor ( can at least try)
but after 18, its out of the parents hands. I think a counselor is the best hope for helping one with issues related to very fixed thinking. (The autism issue frankly)

The problem with chronic illness is that it is hard to even leave the house for a chronically ill person. They really NEED in home supports.

But I could not find any in home care. Heck I looked. I wanted to find a Physical Therapist to come in, I wanted to find a music therapist to come in, I wanted to find a counselor to come in EVEN When my minor children did not want to engage in these. When minors I could have insisted they do those things. I couldn't even find in home services however. I tried. I tried to find services that could work with me bringing the kids and juggling work schedule. HECK if someone SHOW UP then my kids often WILL engage. When I got this particular child to an office- then this child did engage and it was helpful.

But when at the lowest point, I could not find anyone to come to try to help this kid in home where the kid was at EXCEPT the tutor.

As a parent once a kid who says "NO I don't want to" is indulged and they are given that autonomy, it is then often hard to back pedal and insist.

And at times parents need to ignore the kid's resistance and MAKE The kid do things! THAT is in fact an important skill in good parenting- knowing when to not accept the "NO" Not accept the resistance- even in a teenager.

I honestly think what chronically ill kids need is IN HOME CARE by providers who show up when a kid is unable.

So as a parent that is the best I can do for MY kid just now.

I love my kid.
And I show up.

I am here.

I hope that is in fact enough.

Just have to be content with our home being, in fact, the perfect epitome of a ZEN home. Those here are welcome to be here in peace as they are, where they are at.

Rest is honored.

Its actually true. I always wanted a peaceful home like the one I grew up in!! Now that I think of it, I have it!

A wonderful irony.

So for now, it must be enough.

I just have to determine when it is time for me to give up MY HOPE, MY dreams for my kid and let it be.
And just accept and give the support they need- which most likely will be to drop out of school.

I will just let my kid be and hold on a little longer before taking that action.

Maybe there is a kernel of hope inside my kid that will ignite?

I have trouble not being an optimist and letting go of a dream.

I have trouble NOT TRYING,
even when it is no longer my issue.
But at least I am actually at peace regardless.
But I want to leave the window of opportunity, or possibility open for my kid as long as can and don't want to close it too soon. JUST IN CASE their dream awakens. At one point my kid WAS excited about college. At one point my kid DID have goals.

In the meantime, zen be it...

We just Be

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