Cuttlefish Syndrome

 I made that name up. Last year, when this all began, I took a big hit to my mental health. I've had issues with anxiety since grad school, but for the majority of the time, I've been able to handle it without meds or interventions. Around March, after a few months of illness without explanation, my anxiety got really bad. What does that have to do with a cuttlefish? Well, it was my view of the world and how I interacted with people. 

A cuttlefish has an incredible ability to camouflage itself. It can change its color as well as the texture of its skin. I even saw a video where one was put on a checkerboard to see what it would do. Just amazing abilities. As I looked back on my life, I realized that I was trying my best to be a cuttlefish. I had certain responsibilities with work, family, church, and friends that were very hard to maintain. I don't think they were hard in themselves, but the way that I approached them made them difficult at the best of times, and overwhelming at the worst. So, what was my approach?

I'm not sure if everyone feels this way, but I've always seen myself as somewhat awkward and had a difficult time fitting into social situations. I over-evaluated the situation to determine (what I thought) were the expectations of the other people and what role I should play. I tried my best to live up to certain standards that I set for myself, thinking they were the standards that were expected of me. Was I being dishonest or acting outside of my character? No. I was genuine in upholding my beliefs and morals, but I was rarely me. I was who I thought that I was expected to be in that moment. 

If that's not bad enough, I also had an overwhelming desire to make everyone happy. I constantly tried to lift everyone else up, and hold them steady, thinking that I would be able to keep going forever. But, eventually, I broke. The final straw was long covid, but it had been building up for some time. Ending up where I am now was actually a blessing in disguise, it gave me a chance to step out of my life and really start to put the pieces together. Now I'm rebuilding mentally (physically is still a ways away) and changing the way I think and act.

Why the cuttlefish comparison? Every time it changes, it uses energy and stamina. The more difficult the camouflage required (like a checkerboard) the more energy required to get it and maintain. I was getting to the point where interaction was tiring and I just wanted to avoid everyone so I didn't have to use energy that I no longer had. 

My thought patterns that are different now. I can't do everything for everyone. I can only be who I am, not what I think other people want. I can accept help and be grateful for it. I can say no. It's a process that will take a long time, but I already feel better, mentally, than I have for a long time. 

Ups and downs

 The last two weeks have been colder, so I've spent some more time indoors. That's good in one respect because I was able to identify a light sensitivity that causes me to lose energy. On the other hand, it's very difficult to remain content being indoors all of the time. I decided to try to add a little activity into the day to see how I would respond physically. On Tuesday, Wednesday, and Thursday, Amber and I went on a walk (10-14 min, 0.3 to 0.5 miles). During the walks I functioned fairly well, just some slight knee buckling and wobbles at times. When Thursday evening rolled around, I began to wilt. I had planned on going to William's cross country potluck, but I was pretty wiped out by the time it came. I spent most of the morning Friday in and out of sleep. By Friday evening I was feeling a little better and went to nerd night to play pathfinder with some friends. I was definitely more subdued than normal and was really tired at the end. Saturday morning was similar to Friday and the afternoon mostly consisted of laying around. Today isn't much different, still wiped out. Mentally, I'm dealing much better with where I'm at, but I still get frustrated with my inability to perform any amount of physical activity. 

CPAP and diet

 Two nights ago, I started using a CPAP while sleeping since I was diagnosed with obstructive sleep apnea. I'm usually a stomach to side sleeper, so this is taking some getting used to. During the sleep study I had issues an average of every three minutes, but no problem with my oxygen levels. I've never woken up gasping or feeling short of breath, but the study showed I had no REM or deep sleep, only light sleep the whole night.

I've also been on a really strict diet for the last four weeks. I started with the autoimmune protocol diet and am progressing to the anti-inflammatory then the MIND diet. I only add one new food each week. Last week was tomatoes and it did not go well. I had headaches almost every night along with burning in my bladder two out of the four nights that I had tomatoes. This week is eggs, and it's going much better. Next week: macadamia nuts. The AIP diet is very strict, only allowing certain fruits, vegetables, and unprocessed meats. I have lost about twenty pounds since I started. 

Lots of updates

 We are extremely blessed!  I've fallen behind on here on blogging. A lot has happened. Let me try and catch up briefly on a few things. Eric's neurologist in Vegas thinks that Eric will recover. Eric's last EEG showed improvements. Less brain burn out and an increase in brain energy.  We did an exercise test in San Francisco that showed abnormalities on every level possible.  I'll try and post those results maybe.  After being a stay-at-home mom for 18 years I was amazed that I didn't even have to look for a job but they just started falling out of the sky in my lap.  I worked briefly as the housekeeper for two different hotels/bed and breakfast. I was offered Allison's pantry.  I was able to get a full-time job working from home with benefits for $14.15 hour.  It's a start. I went to school for X-ray and ultrasound but there are only three x-ray positions in the entire County with no openings currently.  One of the X-ray techs is due to retire in about 2 years and the other one is 67. So something will come open sooner or later.  I start my full time job with benefits, working from home tomorrow. It will be easier on Eric me and the kids with me working from home. I finished my first Alison's pantry order.  It was far from flawless but it went well for the most part. It will get easier and faster as I learn the products.

Salt Lake

    We are here in Salt Lake City lying in bed at 5:45 a.m. waiting for our Dr appointment at 7 at the University of Utah covid 19 long hauler clinic.  We aren't holding our breathe because no one seems to have a cure for long covid but we are hopeful that if there's any help to be had it's going to be here.  This clinic is supposed to be on the same level as the Mayo clinic.  Eric was diagnosed with long covid at the Covid aftercare clinic in Vegas but they offered no treatment or advice or anything. They only sent us to specialists to see what the extent of damage was. We are hoping this University of Utah clinic will offer some sort of treatment. 

     The test results from the specialists have all been negative so far meaning his lungs and heart and brain look good. We have one last test result we are waiting on- the EEG. 

     

    

     

Long covid

 https://m.youtube.com/watch?v=0gLmMPOHDwM&t=59s

Blessings

 

A week ago without asking  my ministering sister bought all the school supplies we needed for the kids to start school. I was so grateful because it was really low down on the priority list but was something that needed my attention.  Today she dropped off six bags of groceries. It's been really appreciated because there have been times when Eric and I have felt alone just because we're having a hard time finding a doctor who can help us.  These two acts of kindness have helped me to feel seen and heard, cared for, and loved. 

Recovery Day

 I woke up this morning and my limbs felt super heavy and I had a headache. Not surprising considering how busy the last two days were. We had a couple of Telehealth visits (thank goodness we didn't have to travel). The first was with the neuro psychologist who did the cognitive testing a couple of weeks ago. The results were pretty much what we expected: my brain is functioning well, my emotion health is not good (anxiety and depression), and my motor skills are low average to below average (due to tremors). The second was a follow up with the covid clinic in Las Vegas. I just updated him on the tests that have been done and let him know what the upcoming tests are. No changes, we'll follow up next month. Good news is that, even though I don't have a follow up with pulmonology for two weeks, I saw the results of the test done last week and my lungs are functioning normally. So we can check heart, lungs, and cognition off the list. 

First day of school!

 The kids went off this morning for the first day of school and were excited to see friends again. Amber and I drove down to Las Vegas for a neurologist appointment. I had an EEG done and the neurologist that we drove 2.5 hours to see spent a total of about two minutes with us. He only asked like three questions that only required a one word response. No history taken.  His exam took like 30 seconds.  The doctor's communication was poor. He ordered a brain MRI and Amber and I were back on the road again, heading home. It was a rough trip. I was still wore out from yesterday and had to lay down in the back seat for a couple of hours to clear my head of the brain fog. 

Lots of Docs

 Today was long. Amelia had a doctor appointment in st George and then I had a follow up with the psychiatric NP and then a neurofeedback treatment. Amelia had a sinus infection, but is doing well. The only change I had from the NP was that he increased my Propranolol to help with the tremors since 20mg wasn't making a difference. I was pretty wore out and ready for bed when we finally got home. 

More rest, but not enough sleep.

 I've continued to have trouble sleeping through the night. Last night was probably the best I've had in a while as I was only awake for about an hour in the night. Another interesting thing that I've noticed increasingly occurring is the twitching before I fall asleep has increased and become more noticeable. For example, instead of my hand twitching a little as I doze off, my shoulder will jerk. Also, I've had a few incidents in the past few weeks where I wake myself up moving to go with my dream. The first time I dreamt that some animal was attacking my legs and I tried to kick it off. I woke up kicking my legs. The other two involved my arms. These aren't real issues by themselves, but do contribute to the sleeping difficulties. 

Meteor Shower

 Last night, Amber, Eric, William, Bradley, and Amelia layed on the trampoline and watched the meteor shower. Amber and Amelia nodded off pretty quickly, then Bradley and William went not too long after. We weren't out very late, but still saw some good meteors.

I had another session of neurofeedback today as well as a lung function test. I haven't been sleeping well over the last week and woke up pretty weak and tired this morning. I improved some by midday, but was wiped out again after the doctor's. 

Pretty restful days

 The last few days have been pretty restful. Friday and most of sa were spent at home, cont to recover from the weeks activities. Sat evening however, I had the chance to play pathfinder at nerd night. I'm grateful that we got into that game over the last year or so. It's actually something I can participate in and socialize through without being too draining. I went to Sacrament meeting Sunday and then spent the rest of the day at home or at Keith and Lacie's house. Monday was just a quick trip to St George to do neurofeedback and then back home. Tuesday I was a little foggy again, so I just wanted to keep calm and with no things to focus on. Today was mostly spent at home with just one trip into Caliente to get some blood drawn.

One of the troubles that I have every once in a while is feeling like a burden and worthless. Amber has done a great job of taking care of me and helping me feel loved and needed, but it is very difficult mentally to go from being a provider to being a patient. 

Rest Day

 Today was a day to rest from the last couple of days. Eric is still recovering from the last two days and has continued muscle weakness and soreness. He said that he feels like he ran a few miles yesterday. We ran a few errands, going to Caliente and Pioche, but Eric spent the majority of the day in bed. 

Stress Test

 Today Eric had a stress test in St. George.  It went about exactly how it shows in the picture.  He lasted about eight and a half minutes on the treadmill before his legs couldn't take any more.  Thankfully the EKG and Ultrasound showed that his heart is in good shape, but he is below average in activity tolerance due to Long Covid.  The interesting part of the picture happens after the initial stress test.  You can see that his body doesn't really return to a state of rest for another six hours after the test.  During that time we ate lunch, visited with his parents at the St. George Tabernacle, took a nap at his parents house, and then went to a Neurofeedback appointment (which involves sitting in a chair watching TV).  He was pretty drained after the test for the rest of the day.

Cognitive Testing

Eric went through more than 4 hours of cognitive testing today at a Neuro Psycholgist's office. There were various methods of testing including: mental math, memory, visual-spatial, auditory, and comprehension.  He handled the testing pretty well, but was wiped out afterwards. We won't know the results until our follow up appointment in September. The psychologist did refer us to a neurologist that specializes in movement disorders to address the tremors, but all of the neurologists in Southern Utah are booked out for months. 

Long Covid

 Hello everyone, I am awful at journaling but wanted to have some sort of record of what has been a major challenge in our family for the past seven months. I worked in a small county hospital, but had to leave my job last week because of the worsening fatigue and post exertional malaise as well as brain fog that increased with the fatigue. My son tested positive in Nov and my wife in Dec, but I never did, nor did I have any symptoms. It's likely that I had Covid at some point prior to being tested or had a false negative. I had the Pfizer Vax in Dec and Jan. I reacted badly to the second shot: nausea, fever, swollen lymph nodes, fatigue, etc. It lasted for almost a week before I felt somewhat back to normal. A week later, I ended up with decreased motivation and increased fatigue and brain fog. It's kind of a blur and my Amber handled setting up appointments for me since I couldn't concentrate, but I ended up at a men's health Doc and after running labs, they found that I had low testosterone. I was treated for that and 6 weeks later it was high, so they cut the dose back. I did have some improvement, but the fatigue continued. Anxiety began to increase and I went to my primary Doc who prescribed some meds. We ran a bunch of labs but everything mostly came back normal (high ferritin, slightly elevated lymps), but the fatigue continued. We switched some meds thinking that they were contributing to the fatigue, but with no effect. My Doc thought it was anxiety related and said that we'd just have to keep working on getting the right meds. I was tired of having no answer to the continued issues and began researching various things when I stumbled upon long covid. I had never considered it a possibility since I never tested positive and had the vaccine, but everything fit. I ended up going to a long covid clinic and the Doc diagnosed me with long covid.  I finally had to leave my job because I couldn't tolerate the fatigue any longer. After reading so many stories, I know that was the right thing to do, but it is a hard decision since I loved my work environment so much. So far I've been to a cardio, pulmonologist, and psychiatric nurse practitioner with normal labs and ECG. I have a stress test next week (I am dreading how that will affect me for the following days) and I hope it will give some answers to my poor activity tolerance.  It's nice to have so much love and caring shown by so many people throughout this time. Thanks!