Sunday, May 24, 2020

On the Merry-Go-Round Once More

It has been a truly emotional week - both good and bad. You would think I would be used to riding this mood roller coaster by now, living with bipolar as well as going through all kinds of crap throughout my life, but it's still hard to deal with.

First, the really good news... two months after I first filed for unemployment because of COVID-19 issues, I finally received it, including some (not all) of the weeks I filed in the past but didn't get anything. This has been an incredible stressor off of me, as even though I had a decent amount of money still out due to the way my clients pay me and I had a little bit saved up, I knew it wouldn't last forever. I tried not to worry, but I had a huge underlying stress every minute of every day during that time of uncertainty.

So, that's a big relief.

But medical issues... Ah, medical issues... Many years ago I wrote an article about the issue of not finding answers to my medical issues - or at least not ones that help. I updated it and posted it last year. If you go to https://www.spotlightonstigma.com/2019/09/on-merry-go-round-again.html and read it, you'll see more where I'm coming from.

The past couple of weeks I've been spinning again on that merry-go-round. I virtually saw my sleep specialist after the last failed attempt at using a BiPAP (similar to CPAP) machine for my truly horrible sleep apnea. I finally got to see a rheumatologist after suspecting I have fibromyalgia for many years. I also actually asked my primary doctor to prescribe something for the GERD (acid reflux) that she told me I have, but that taking an OTC acid reducer didn't help (hoping the prescription will help more). I also was finally able to reschedule my appointment for my cataract surgery after COVID-19 postponed the original one.

Second, the good news... I guess. My rheumatologist did confirm that I have fibro as well as an overarching syndrome called Joint Hypermobility Syndrome. Though hearing you have yet another lifelong, chronic condition isn't good news in and of itself, he does have a treatment that he uses that most rheumatologists don't.

In fact, that's why I decided to pursue a diagnosis - my daughter switched to him after already being diagnosed with really bad fibro but the doctor told her there was nothing she could do other than yoga or water aerobics to help the pain. Always before I had assumed that there was nothing that could be done about it, so why take the money and time to pursue that particular diagnosis?

The frustrating part about that good news is that there was a mix-up with calling in that wonderful prescription and I have no idea when I'll be able to get started on it. I'm hoping for one day later this week, but I just don't know.

At least the fibro diagnosis only had one frustrating part. The sleep apnea was an incredible debacle...

So, third - the pursing of an alternative to the BiPAP machine. I was originally diagnosed with both really bad Obstructive Sleep Apnea (OSA) and Restless Leg Syndrome (RLS) in 2007. RLS was able to be somewhat controlled through meds but I tried various types of CPAP machines and different masks and couldn't handle any of them. After trying and trying, I gave up. If I knew then what I know now, I would have saved myself a lot of time, trouble, and money.  But there's nothing I can do about that now.

(Note... CPAP and BiPAP are two versions of the same type of OSA therapy. Throughout this I might use them interchangeably but they mean the same type of thing.)

Then around 2014-15 I decided I'd try again. I thought maybe the technology was better with the machines or there was another new therapy that would help. The same thing happened. No matter what I did, I couldn't sleep with the BiPAP going.

This time I took it a step further... I went to an ENT. He told me I had several issues that made me a horrible candidate for CPAP/BiPAP therapy - a severe overbite that put my lower jaw too far back, a deviated septum, and a large tongue (gross to think about). Surgery could fix the first two but jaw surgery is a big surgery with a long recovery period, so that was out. Because fixing the deviated septum alone didn't seem like it would help that much, I gave up again on this therapy.

Something the ENT has stuck with me since that visit. He actually got mad... saying something like "These neurologists should never prescribe a CPAP without consulting an ENT who can sometimes automatically tell if the patient can use one or not." So all that time I fought with the machine was for nothing! I never would have been able to use it. But there's nothing I can do about that now.

After seeing the ENT and finding out about my jaw, my neurologist prescribed a custom-fitted mouthguard to bring my lower jaw forward. Getting that mouthguard was a huge mess in and of itself, which I won't go into. But I tried the mouthguard and even went back for another sleep study solely to see how much it helped. During the follow-up visit, my neurologist said that it wasn't a big improvement and since it was a pain to deal with, I also abandoned that treatment even though the mouth guard cost like $750 out of pocket. But there's nothing I can do about that now.

So... a few more years roll around and I had a routine visit with my cardiologist. He told me that there were was a brand new treatment for OSA that didn't have anything to do with tubes or mouthguards. It's a hypoglossal nerve stimulator (brand name "Inspire") which basically is similar to a pacemaker for your airway, keeping it open throughout the night.

I decided to look into this option. I got a new sleep specialist (who was the first one I really felt had my best interest at heart and didn't just want to push CPAP treatments). During our first visit, I explained my history and that I wanted to look into this new surgical option. She told me that because it was new, they were pretty strict on the criteria to qualify and at this time I wouldn't due to my high BMI (which, ironically, is probably at least partially so high BECAUSE of the apnea... sigh...)

She did, however, tell me that the technology once again had changed and would I again try the BiPAP? She also told me that the settings the last neurologist had used were way too high and it was no wonder that I couldn't stand it.

In addition, she asked why I was no longer using the mouthguard. I told her that the last doctor said it wasn't helping. She said that it was, just not enough to "cure" the apnea. This kind of ticked me off. I could have been using it that entire time and could have had a little better sleep. But there's nothing I can do about that now.

Against my better judgment, I gave in and decided to try the newest, latest BiPAP machine and ending up getting a mask that was hot off the press. I really thought this time it would work.

I was wrong.

Once again, I tried and tried. This time I also added in another mouthguard, but one I didn't have to see a dentist to get (you fit it yourself). I didn't really try the mouthguard much without the BiPAP, as I thought my jaw was part of the reason the BiPAP wasn't working. In hindsight, I should have at least kept using the mouthguard when the BiPAP therapy wasn't an option. But there's nothing I can do about that now.

I also had sinus surgery, as I knew my sinus issues were at least part of the reasons I couldn't use the BiPAP. The sinus surgery corrected one of the issues but didn't help enough for me to be able to use the machine.

Life got really busy and so I just put the machine in the closet and just prayed that I wouldn't have a heart attack due to the apnea (one of my biggest fears). I didn't want to follow-up because she acted like she had exhausted all of her options anyway, so why deal with one more doctor's appointment?

Then a couple of years passed. I thought that maybe by now they would have relaxed the qualifications on the nerve stimulator and I might qualify now. So I made an appointment with her to discuss it. It takes months to get in to see her and guess when my appointment hit?  Yes, right as the COVID-19 restrictions made most doctor's offices close. But there's nothing I can do about that now.

I had to wait a couple more months for the appointment, but thankfully I was able to get in to see her virtually relatively quickly. I suggested trying the nerve stimulator and said that maybe the standards were less now. She checked with the ENT who does this procedure. (See? An ENT consult IS needed for sleep apnea issues!)

This is where it really got messed up. She told me that they require a recent sleep study - within 3 years. My last one was too old. I haven't yet mentioned this but I HATE sleep studies. I can't sleep; I have horrible anxiety; and I am more than miserable the entire time. I had said I would never do another one. But if it was required, what could I do? I agreed to do the sleep study appointment.

She also told me that they would have to do an Upper GI to see how my airway opens and closes in order to see if I was a candidate for that treatment. An Upper GI isn't fun, by any means, but it's much easier than a sleep study.

After I got home, I realized that I might not qualify because of the way my airway opens and closes (I assumed that if my BMI was still a rule-out, I would find that out early on). So I called the ENT's office and asked if I could do the Upper GI first. If it showed I was still a candidate, then I would do the updated sleep study. After all, I had two sleep studies that showed I had it and it doesn't cure itself, so I definitely still had OSA. The scheduler supposedly asked the doctor and said that I had to have the sleep study first.

Well, the day came for the sleep study. My anxiety rose all day even though I tried really hard to keep myself calm. One thing I comforted myself with was that I didn't have to have the RLS leads, which I hate more than all the other leads combined (except the nasal cannula - it's #1).

I got to the clinic and when the tech came in to hook up the leads, she reached down to my legs. This wasn't my first rodeo so I knew what she was doing and I objected. I won't go into that whole story, but let's just say I lost and had to have them. If I had thought about it ahead of time and specifically asked my doctor to mention not to do that part of the test, I probably wouldn't have had to do it. But there's nothing I can do about that now.

I'm also not going to go into the details about the sleep study. It was just as bad as I remembered... no, it was worse. The ONLY thing that was good was that I was exhausted so I was able to sleep a little on the front end of the night. I knew from past experience that an hour or so of data is enough so I knew I had enough by the wee hours of the morning. I was able to leave at 3:00am, which was wonderful (though I was messed up from the anxiety and lack of decent sleep for a couple days afterward).

But I was glad it was done. Now I should be able to at least get to step two towards the nerve stimulator treatment, right? WRONG!

My follow-up with the ENT was two days after the sleep study. Once more, I won't go into all the ENT said, but the main point was that the nerve stimulator wasn't an option because of my BMI. WHAT?! So I went through that sleep study for nothing?!

He gave me some other options, none of which are really good options - soft palate surgery (which is mentioned twice is really painful), jaw surgery, which I already knew was major surgery with a long recovery time, and a tracheostomy, which "wouldn't be that bad because I could plug it up during the day." WHAT?! A trach?! Jaw surgery that takes literally months to heal? Soft palate surgery that is really painful (and doctors never admit that something is going to be painful so it must be really bad).

I got home and spent the day extremely depressed. That horrible sleep study (and the huge copay) may have been for nothing. As of right now, I did go on and make the appointment for the Upper GI test, just to know my options - exactly which of the procedures I would need to get done. However, I might cancel it. I already know I would need the jaw surgery and that's the one that has the longest recovery time. I just can't be off work that long. However, I might cancel the appointment and just keep praying that the apnea won't cause something like a heart attack. After all, there's nothing I can do about that now (or at least nothing I feel I'm willing to do about that now.)

And last, the cataract surgery. This blog is already way too long but I wanted to mention it. Right now the first one is four days away and the one on the other eye is two weeks after that. I'm again really nervous. Everyone I talk to says it's not a big deal but it seems like no medical procedure is simple for me. But hopefully both surgeries will go well and for the first time since I was a preschooler (or maybe earlier), I will be able to see clearly without glasses or contacts.




Tuesday, May 19, 2020

Exhaustion From COVID-19 - Not the Illness, But From Helping to Flatten the Curve

COVID-19 has affected society in so many ways. When the CDC first asked everyone to stay at home as much as possible, I didn't think too much of it. In fact, I kind of liked the idea... at first.

When I first heard it was going to be much longer than I had originally thought, the idea became a lot harder to deal with... but it was still doable. My initial impression had been how much I could get done with not as much paid work as before (though that worried me on another level) and so much time at home. As the time was extended, that was still my goal - to get a lot of projects done that I normally don't have time for.

But nothing in me realized how it would feel to be home so much - and its unanticipated effects. 

One of those has been exhaustion... bone-weary, fall-asleep-at-my-desk, can't-think exhaustion.

There are so many factors directly related to the pandemic that could be playing into this issue:

- Not getting enough sunlight...
     Lack of sunlight affects us physically in two main ways. First, being in direct sunlight for about 10-30 minutes a day helps your body produce vitamin D, which is essential in warding off fatigue. Second, the lack of sunlight causes your body to produce more melatonin, which helps make you sleepy. On top of these, there is a psychological boost to being outside and spending time in the sun.

- Anxiety...
     Excessive worry causes tiredness due to many factors. It's draining to try to figure out solutions constantly, especially if the cause of the worry doesn't have a solution (like COVID-19). Your adrenaline runs high with anxiety and when it finally runs out, there can be a physical crash. Wanting to get away from the worrisome thoughts may lead to naps which makes sleeping at night more difficult. Insomnia from this stress can also lead to being very tired during the day.

- Lack of exercise...
     We don't realize how much we are up and moving around in the course of a typical workday. Even short times of movement like walking to and from your home/office to the car add up. Kids activities, church events, social gatherings... these all lead to not sitting as much. I know that for some, being at home has caused increased exercise - maybe from chasing children who would normally be at school or cooking and cleaning more because of more bodies being in the house all day. But for many of us, the days are passed through more screentime than we are used to and thus, less being up and about.

- Too much or too little noise...
     Too much noise can cause what's called "listener fatigue." There are many who are used to having at least periods of quiet at home or work during the day. More people at home, as well as more screentime, often means more noise to deal with. On the other side, for those who may be home alone may have too little noise, which subconsciously promotes the feeling that it's time to sleep.

 - Boredom...
     Like anxiety, being bored can lead to activities and behaviors which interfere with good sleep. Not having a lot of plans can lead to staying in bed longer than typical in the morning, taking naps throughout the day, and going to bed early at night.

- Eye strain...
     Because of the screentime increases in most households, eye strain can be a problem. This can result from looking at something at one set distance for long periods. In the course of a regular day at school, work, or even leisure, there are a variety of things to look at - all different distances. For example - going to your child's ball game. Getting ready involves going back and forth from looking for what you may wear to what you are putting on to looking in a mirror to just looking around the room. The drive there includes looking out the window, looking at the speedometer, and looking at others in the car. Once you are at the ballpark, you are watching your child play ball, checking your phone, looking at the back of the ball field for the score, etc. During the stay-at-home order, there often are much longer periods of watching tv, gaming, or Zoom meetings where you look at one place. This eye strain can lead to feeling worn out when all you've done is sat in a chair all day.

- Grieving/Depression...
     Everyone has lost something during COVID-19. It could be having to cancel special plans, job/income loss, a relationship, or just the freedom of being able to run into a store without worrying about wearing a mask and abiding by social distancing measures. Grief is hard on both your physical and emotional state. It often leads to a period of depression. One of the main symptoms of depression is not being motivated to do tasks that were loved before. This lack of motivation, like several other factors mentioned, leads to less activity, more naps, and generally an interruption of regular sleep cycles, which contribute to fatigue.

- Too much caffeine or rich/sugary foods...
     Caffeine and sugar are often used as ways to wake up. But what many don't think about is how after that period of being artificially alert, there is a crash. The fatigue that some of the other issues listed have caused is only exacerbated by using stimulants such as sugar and caffeine to combat it due to this crash later. Plus, these can interrupt getting deep sleep at night due to the effects of caffeine lasting into bedtime and GI issues from too many rich foods.
     
- Not enough water...
     Dehydration is a sneaky thing. It's obvious when you have been outside in the hot sun and haven't been drinking water. But it's way too easy to miss when you are home all day and just forget to drink as much. Maybe you are used to having a water bottle at your desk at work but can't seem to remember to carry it around with you while you are at home. Maybe it's because you are used to bottled water but there is a shortage in your area. Maybe it's because since you are home you are drinking more soda or alcohol than you would normally drink in a typical day. But either way, even mild dehydration can lead to fatigue.

- And finally, actually having COVID-19...
   One of the top symptoms of COVID-19 is excessive fatigue because it's a byproduct of your body fighting the virus. Add to that, other COVID-19 symptoms can lead to not getting good sleep, like continuous coughing or a high fever. 

So when I am fighting exhaustion, there is a continuous battle playing out in my brain... Is it one, two, or a combination of many of the non-COVID-19 causes listed above or do I have one of those cases of COVID-19 where I don't really have the other symptoms? Without being able to get tested every time I feel really tired, I'll never really know. 

What I'm doing is trying to work on as many of the preventable non-COVID-19 exhaustion causes as I can. I'm taking extra vitamin D and trying to get outside every day for just a few minutes if I can't do more. I'm trying to be grateful for little things, which helps with both anxiety and grieving/depression. Exercising isn't happening but I'm working on a plan to do so. I try to control noise levels and eye strain (though not always successful). I finally got to the point where I carry water with me all day. 

All I can do is control what is possible to control. There's that Serenity Prayer again: God, give me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference.


Thursday, May 7, 2020

Mania to Depression During COVID-19


I have bipolar disorder, Type 2, which some consider "mild"... but live in my shoes for a few weeks and you'll think it's anything but mild.

As with many mental illnesses, one can be high-functioning or lower-functioning, depending on the severity of the illness, support from others, etc. 

Maybe it's because performing well is a major part of my self-worth; maybe it's the work ethic I've been brought up with; maybe it's something else, but I have to be really, really depressed to keep me from working if I have a deadline for a task.

Lately, I’ve been that depressed.

Today I realized a couple of the reasons...

First, the obvious: I mentioned why I feel I am high functioning despite having a serious disorder. COVID-19 has robbed some of that from me and I hadn't even realized it.

My main job is as an event photographer. I supplement my income with rideshare (Uber/Lyft), mystery shopping, and some writing. So, three out of four of my main sources of income have been taken away, as I'm high risk so photography, rideshare, and mystery shopping are all out.

I thought my recent severe depression was due to the financial stress of losing my main three sources of income. But today I realized it's a lot deeper.

I get a lot of my self-worth by hearing how great a job I've done on a project. Since all this social isolation started, I've gotten very little of that positive feedback. There has been almost no photography work and my writing though "good enough" isn't award-winning.

This has affected me more than I like to admit. I had no idea how much I thrived on hearing those accolades or even just giving them to myself when I took a great photo. Both the photography and writing assignments I've gotten haven't lent themselves to getting those types of compliments. They are good... just not "great." Many mystery shops are scored... and I love getting those high "grades." Even with rideshare, you can tell when a customer has enjoyed the trip, and even when my riders don't mention it, I can tell when I've done a good.

Currently, I don't have that steady stream of compliments. With the work I've managed to get, I send the photos and/or articles to the newspaper and then hopefully later see them published. I don't get any, "Wow, that was a great photo!" or "I really enjoyed that article. You had some wonderful insights."

Then there is the mania/depression cycle that is inherent in Bipolar Disorder and its impact on all this.

At the beginning of the stay-at-home orders, I was mostly manic (I am a rapid cycler and can cycle between moods even within a day). I had so many hopes and plans about what I could get done since I had to be stuck at home - all the projects I've been putting off for a while, sometimes years.

The mania stuck with me long enough to get started on several projects. I pitched some great ideas to my editor (of course I thought they were great - I was manic). I was going to catch up on personal photo editing, go through and get rid of lots of stuff in my attic, finish updating a series of articles that never got published, clean out and organize all of my camera equipment, list most of this extra stuff on eBay, work on the book I started writing months back, etc. And then, in my spare time, I was going to take over the world.

It hasn't happened quite that way.

To my credit, I have had a lot of issues that got in the way. Major computer problems showed up that had to be resolved before I could do anything else. I re-did my photography website which took at least four times longer than it should have, due to issues with the new hosting site. My daughter broke her foot which caused some hassles. I started showing symptoms and, though I tested negative, haven't felt well more days than not. Basically, it seemed like everything I tried to do took at least two or three times longer than usual... or more!

So, my list of all of the things I planned to do during my COVID-19 isolation should be mostly done by now. 

It hasn't been. 

Not by a long shot. 

I have made progress and have gotten a lot done, but one thing about the mania, you think you can do so much more... and it's just not possible. Then you get down on yourself for not finishing all you started. Then that depression leads to doing even less. The only thing that breaks this cycle is a new manic period, but then though I do get more done, I add more to the list.

Sigh...

This has happened before but usually, steady work gets in the way. In other words, I make the plans but there's a part of me that knows I probably won't be able to finish many of them. In the COVID-19 isolation situation, my expectation of finishing that crazy amount of tasks was way too high - and the disappointment when there is still a lot more on my list even after almost two months of being home has driven me into a deep depression, which, ironically, has made it more difficult to get anything done.

My plan is to take some time and try to list everything I HAVE gotten done during this crisis. Maybe being positive and putting the emphasis on what I've finished instead of what I haven't will help list some of my depression and give me hope again.

With writing this, it occurred to me... maybe I'm not the only one who feels this way. Maybe others with high-functioning Bipolar or other mental illnesses are having similar problems coping with these kinds of issues. Maybe, just maybe, it's not just me.


Wednesday, May 6, 2020

My Heart is Breaking Once Again

I don't know how many of you have children with multiple physical and mental issues, but it's hard. I mean, HARD! As a parent, one thing you most want for your children is for them to be successful in whatever they want to do... whether it's to be a stay-at-home mom, a garbage collector, a doctor, or anything else.

She did so much to become all she could as she was growing up... All those years of trotting around to lessons and sporting events and after-school activities... All those years of Science fair projects and research papers and practicing math facts... All those years of teaching manners and work ethic and compassion for others... Sometimes I feel like all of that was for nothing because of the diseases and conditions and syndromes that my almost 21-year-old has to deal with.

Last semester her physical and mental health issues caused her to have to drop out of college and take incompletes for 3 of her classes (she was able to finish 2 through a lot of pushing through). She now has about a week to make up the work that she missed in those classes in order to change the incompletes to credits or they will turn into F's.

She worked so very hard last semester to try to get everything done but her own body and mind became her worst enemy. It just wasn't possible to push through and do everything needed in time.

So she took the incompletes, knowing that a couple of months to focus on her health and it would be no problem to finish these 3 classes when she was already so close... right???

Just as she was starting to recover from all of the trauma and stress of last semester and was again able to focus on getting into various specialists (which always takes a while), the world stopped. She had made several appointments but then she only got into one before doctors' offices closed for anything except for emergencies or COVID related cases.

Even without the doctors' appointments and treatments being done, at least she could go on and get in touch with her professors and start her work, right? NOPE! About the time she planned to do that, the college shut down. The professors were scrambling to switch to online learning for their current students so she felt bad about bothering them to help her get started on her classes.

At this point, she had plenty of time to finish so it wasn't a big deal. But as the deadline loomed closer and closer, stress about finishing set in and exacerbated her symptoms. This was heightened by stress about COVID-19, both because she is high risk and because she can't work.

As a parent of a child with an invisible illness, I often get "advice" on how I should be pulling back and letting her take care of her life on her own. "She's smart and she's 20 years old now," they would say, having no idea how hard it can be just for her to get out of bed each day or take a shower without almost passing out. They see her on good days and so, for them, she should be able to be doing these kinds of things on her own by now.

But what the advice-givers don't understand is that ongoing struggle. They haven't seen her cry because it hurt to get dressed. They haven't seen her try to study (and she really is smart) where she would read the same paragraph over and over and not be able to retain the information.

So this is my dilemma in all of this... How much do I push her to finish? How much do I let her do it on her own, knowing that the consequences could be failing those classes and ultimately not finishing school (because she's already struggling so much, any issue like having to make up these classes, could be too much)?

I've been walking this tightrope for a few weeks now and finally really talked to her about it last week. She said she did want to finish and I and some of her friends said they would help her in any way we could.

So I had hope that at least this chapter of her life would be okay... until she was in so much pain that she again missed a virtual voice lesson earlier this week. I was devastated... and so mad.

Your first thought might be that I was upset and mad at her. I'm not. I'm so f'n mad at these diseases that are robbing my beautiful, talented, smart daughter out of living the life she should be able to that sometimes I can't see straight.

I don't know what to do with these feelings. It's not going to change. She has been able to see a couple more doctors virtually the past couple of weeks, as offices are switching to that format, but there are still no answers. The more I learn about her conditions, the more I realize that she will probably have to deal with chronic pain and mental health issues her entire life. There are no cures. There isn't even an effective treatment for most of the issues she deals with.

The best we can hope for is a reduction in pain, a reduction in depression and anxiety, a reduction in the symptoms that keep her from living life.

Now she's at less than a week. I'm worried she won't finish, but I can't do it for her. Once again, it's time for the Serenity Prayer...
     "God, grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference."