Fatigue and Hair Cuts

Just saw a video of someone with long COVID describing how hard it is to get their hair cut. Bright lights, loud music, hair dryers, people; it can be exhausting.

My strategy starts with my hairstyle. It allows me to only need to go to the salon 4-5 times a year. I have bangs that I rough cut, not aiming for that perfect straight line. Having my mistakes fixed every few months seems to work. I have my stylist cut it as short as it can go and still be able to pull it back. I don’t have the energy to blow dry and style my hair before work. The back of my hair can grow for months before it noticeably needs to be cut.

I try to make morning appointments, even better if it’s a weekday; less customers and less stylists at their chairs. Finding a ‘one stylist salon’ would be great but it’s difficult and likely expensive. I also have a person I like that caters to my quirks. Like wanting an extra towel under my neck at the sink and knowing that I want to sit up if there is a reason for waiting at the sink (conditioner, getting more towels from the dryer). Most stylists seem good about chatting or not chatting depending on their clients’ mood, and mine is certainly good at that.

The rest of the day’s schedule is kept as light as possible; a short trip to the store on my way home or a couple hours of work at most.

Almost no effort put into getting ready for the appointment. Comfortable clothes, no make up, but do make sure to brush my hair really well to limit any knots they need to work out. If you do not need any processing, you can wash your hair before/after as needed if the hair bowl thing is uncomfortable for you.

Do you have any energy saving tips and tricks?

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ME/CFS and Long COVID Fatigue – Activity Scale

I was looking about online for some information for some of my patients having fatigue issues after COVID and came across a site that had an interesting scale on it. Thought to share in case anyone else found it useful. I added some links at the bottom to store for myself and in case anyone was interested in more information.

I think I am at 50 because I have been going up to level 60 for a couple of weeks and my symptoms have started to flair up. Maybe somewhere in the middle. You are supposed to ask yourself: what activity level am I able to sustain without increasing symptoms?

rating_scaleDownload

Click to access rating_scale.pdf

https://onlinelibrary.wiley.com/doi/full/10.1002/pmrj.12684

http://www.cfsselfhelp.org/pacing-tutorial

https://docs.google.com/document/d/1VfENjAiOBKryT-dIOFyU8CyEAAKVR5xk9WyvlZF-u4M/edit

Patient and Caregiver Resources

My Experience with Pfizer COVID Vaccine Hx Post Lyme

I felt an almost obligation to post something about my vaccine experience. Many people, especially if they have certain health issues, are worried about getting the vaccine. I was. The community in particular has lost a lot of trust in the CDC, IDSA, and the medical establishment in general. I have been fairly lucky. I have had some caring doctors/ARNPs/PAs that really did listen but once my heart and my thyroid tested normal, there was nothing else they could do. After I was treated by a LLMD/PA, most of the doctors I have seen seem to accept a general chronic fatigue type status and move on to the other normal blood work monitoring, testing, and advice. The only time a doctor was dismissive of Lyme Disease, in front of me, was when I was at a marketing lunch with a pain management doctor and asked if he ever treated patients with Lyme Disease. Of course, no one in Florida has Lyme.

This post is not to talk you into anything. It is to provide a little information and a viewpoint. Some of the Lyme community posts about the flu vaccine make people think suffering and death is the most likely outcome. I still have internal debates about the flu vaccine for multiple reasons, most are not Lyme Disease related. I don’t have the loudest voice. I am not trying to sell you anything. I am just trying to balance a little of what is on social media. Not everyone with a Lyme struggle thinks the same way.

I decided to get the vaccine for several reasons

• I am not in any acute stage of illness
• I work with COVID-19 positive patients
• I do NOT want any of the possible long term consequences of having COVID
• I do not want to get sick or carry the virus to give to others (still mask after, research is ongoing about being a carrier)
• I have had 2 flu shots (last 2 years), since being treated 7 years ago for Lyme, with no side effects
• To get things back to relative normal and to decrease the number of mutations, the more people that can be and are vaccinated, the better
• I do not have any known medication or vaccine allergies.
• The vaccine’s efficacy rate is phenomenal

How it went:

The location I was able to get an appointment at was set up for healthcare workers that do not work in hospitals. I selected an appointment time and showed up. They had a massive amount of volunteers and paid staff there to help move people through the process. The only waiting I did was the 15 minute recommended observation time to make sure you do not have an allergic reaction. This was not a drive through site so I had to park and get out. They did have wheelchairs and people on stand by to help anyone who might need assistance.

The day after both the first and the second vaccine, my arm was sore. I did some gentle ROM of my arm to loosen things up and get the juices flowing and that helped a great deal. I did not have any of the other listed side effects. The young nursing student that gave me one of the shots said that she had every side effect on the list. She said that with a smile and was happy to have gotten it. I was a little tired for a couple days after the second vaccine. I had a busy week and the received the vaccine on a Friday. I was not able to distinguish between my normal run out of spoons fatigue and any sort of vaccine reaction. I rested over the weekend and was back to baseline.

Please be careful of what sources you use to make your decisions. Please do not share posts that may have disinformation.

https://www.wsj.com/articles/russian-disinformation-campaign-aims-to-undermine-confidence-in-pfizer-other-covid-19-vaccines-u-s-officials-say-11615129200

If you have any thoughts or questions please leave a comment!!!

Weekend Dress Rehearsal

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– When all else fails, buy a lotto ticket and go home –

I had a plan.

I am not sure why, but for the past month or so I have had a lot more energy and a lot less brain fog.  I have been gradually increasing activity to try to avoid any sort of crash.  Last weekend, the box with the crossbars for my car was finally opened and they were installed.  Last night, the SUP carrier was attached.  I decided to wait until the morning to inflate the board.  The board was purchased last year because it was lighter than my previous board and because it was bigger and so easier to balance on – allowing for a less strenuous ride.  Before the end of the night, I had found my waterproof camera and started charging the battery. All systems go for morning launch.

This morning I woke feeling a little off but still good. I got a cup of coffee and started to inflate the board.  The point of inflating it at home instead of at the lake was because the loud motor seems so disruptive when the water is still glass and the boats are still on shore.  Apparently, it also seems disruptive at 8am in my neighborhood.  I brought the board into the garage and closed the door, hoping to muffle the sound at least a little.  Eventually, I caught on that I had hooked the air compressor up wrong and was not getting any air into the board.  That fixed, the hose then popped loose halfway through and the board lost a good bit of the air.  So, started again but this time holding it on to make sure it stayed attached.  

The board was loaded but I was dripping with sweat (it gets hot/humid early) and my legs felt shot.  The last few SUP outings I tried prior to being diagnosed with Lyme, taught me that  pushing through the feeling I was having would pretty much lead to a short and disappointing outing.  

Trying to roll with it, I decided that if my legs were going to be wobbly today, I would try out the kayak seat attachment.  I took it out of the bag to make sure I knew how to use it and made adjustments to my paddle.  I also decided to pick a closer lake and then went inside for some cold water and a rest break.

Time to roll out.  I headed down the road and was a good bit away from the house when I realized that I forgot my fanny pack life vest (picture with link).  No problem I thought, I have my leash and a regular vest in the car so I will be legal.  I started planning out how to adjust the leash from the regular attachment to a kayak conversion position.  My brain then fired off a Red Alert.  I forgot the center fin.  The detachable fin was still sitting on top of the garbage can.  I hit the next turn lane and headed back to the house.  I pulled into a gas station to take a minute to plan and, well, to get gas.  

Vacation Slide show! With a side of Bug Bite Prevention.

Spent some time at a cabin surrounded by the Ocala National Forest. Ahhhhh.

Bug bite prevention ideas below.

Click a photo to start a show.

dirt road

 

I spent a lot of time outside during the day and at night.  I have 3 mosquito bites and no found ticks.  The bites may have come from the first day I was there when the car was stuck in a mud hole and I was caught out without any protection.  That’s a story for the next post.

First, spray shirts, shorts, hats, socks, and shoes, to be worn in the woods with Permethrin. Take clothes outside and spray.  Let dry prior to packing.

Second, ideas for while you are out:

If you get bit:

Ticks

Mosquitos

 

 

Rose Theory of a Health Journey

I have had a hard time finding a way to explain why I am even on a search for better health.  I needed to be able to explain it to myself.  I was not as concerned about what others thought.  It never really occurred to me to try to explain it outside my own ego.

When fighting Lyme and company, there has always seemed to be something just not right.  We are missing a puzzle piece somewhere.  Various infections, hormones, nutrition….it always seems much more difficult and complicated than it should be.

I believe that I have found a way to explain it to myself.  The theory will not fix anything but thought I should share it in case anyone else could use it.

The Rose Theory

I first moved into my house over 10 years ago.  As a new home owner I was excited to fix up things and put to use all of those hours spent watching home improvement shows.  One thing that I really wanted was a beautiful rose bush.  It was a peace rose.  I tended to it as Google said I should.  I watered it often but careful not to over water it.  I sought advice on what fertilizer to use and when to apply it.  I made sure it received all the nutrients it needed.  I trimmed it as directed.  I was very attentive to its every need.  If I was doing everything just right, there were a few beautiful blooms as a reward.

Spread Positive Jam On Toast

A friend gave a gift from a company that has a mission to share meaning and positive energy.  It is a pretty cool idea.  You think of one or two words that are meaningful to you.  The word can be a goal or an intention, or just something meaningful.  They press the word into a metal circle and you choose if it is on a bracelet or necklace.  Example words are love, grateful, compassion, purpose, and surrender.  The company is running behind due to a record number of orders and sent an email apologizing. The email included a link to free music.

What is your word?

In the spirit of sharing positive energy, here are some YouTube versions of songs on the album. 

SUP Saturday Rebellion

Patience, recovery, and rehab…

I teach it. I preach it. I skipped it.

Lil’ Red’s whispers grew in my ear.  

Echoing, bellowing, 

“Let’s go to the river,” He shouted.

I ventured out for a short stand up paddle boarding session today.  Tie down straps did not work, the launch fees increased from 3 to 10 dollars.  The crowd started by 9AM when the grounds used to be ghostly until closer to 10:30.

My legs were shaky and my balance faulty.  There were no falls or splashes.  It was clear that I had skimped on my preparation.  My flexibility was surprisingly constrained when transitioning from kneeling to standing.  The muscles in both feet have been spoiled.  A few minutes later, I was back on shore.

It was nice to be back out on the water!

With new exercises in mind, I put Lil’ Red away for another day.

 

Lyme Disease Challenge

 

I am not going to call anyone out for the challenge, not even Ralph 🙂

However, everyone is welcome to help raise awareness and research funding for Lyme Disease!

A special thanks to my friends for providing the cast and the location!!

Organic Online Shopping: Thrive and Pete’s Paleo

I love to shop from the couch.  I thought I would share two of my new favorite hangouts.

Thrive: