Exhaustion: The Leap from Fatigue

For many who suffer from chronic illness, the one symptom most have is fatigue. It is constant tiredness which does not go away. No matter how much sleep a person gets, he can wake up feeling just as tired (or sometimes even more tired) than before falling asleep.

For the last week, I have been struggling to get things done. I push myself to fight through the fatigue. My body revolts. It screams in pain. I concentrate even harder at the task which is before me. Suddenly, exhaustion hits. For me, this is the point in which my body shuts down. It does not matter how urgent or necessary something is, my body refuses to function.

I lay on my bed. My head screams in pain. My muscles throb with pain. My brain is a hot mess. Nothing makes sense. All I want to do is sleep, but I am beyond tired. Sleep is fleeting.

Exhaustion is probably one the most frustrating symptoms for someone who has chronic illness. Many people cannot imagine what it is like to hit this brick wall called exhaustion. It does not matter how much will power or desire a person has to complete a task, once exhaustion arrives, the body refuses to cooperate.

Another Week, Another Death

When having chronic medical conditions, it is always wonderful to find other people who have the same medical challenges. Unfortunately, many of my health issues often lead to complications, many of which are life ending.

I have lost so many friends in the last several years. I try to not make any more friends because I cannot endure the loss of another life.

Someone once told me I was over-exaggerating. Everyone loses friends. Perhaps that is true, but just in the last five weeks, five friends have passed away.

When I heard of the passing of another dear soul this week, my poor heart shattered into a million pieces. This person was extremely nice and kind. She tremendously helped me when I got my tracheostomy tube in May 2017.

I wish death would stop coming. I wish just for a year, I did not lose a loved one. Chronic illness is hard, and it is even harder when I am constantly reminded that death is never far away.

Devastated…Absolutely devastated

My attention to Facebook in the recent months has waned. I have so many things going on. I struggle to keep up with just my social media accounts. I only look at a few Facebook posts a week.



My friend, Ashlee, was one of the people I kept up with. She had severe gastroparesis, that is, delayed stomach emptying. She fought hard through some harrowing battles. She always bravely displayed a smile to let the world know she would make it through another hospital stay.

During her most recent hospitalization, she was admitted because she was having seizures. They did not know why she kept having them. After she had been seizure-free for 24 hours, she was allowed to go home.

Three days later, she suffered a seizure. Unfortunately, she did not pull through it.

I am absolutely devastated. Sometimes, you see things coming, but this was so unexpected. She was given the green light to go home. Her last Facebook post reads, “Made it thru another admission, I'm going home and I better freaking stay there!!!!” It seems Ashlee got her wish. She will never have to endure another hospitalization again.

May her memory be a blessing.

Help! My mom fell, and my ventilator got LOCKED in a room!

The last two days have been extremely chaotic. Monday, I spent the day getting blood work done and waiting for my doctor at an appointment. The doctor never showed up. Thankfully, a nurse did the appointment. I have pneumonia and need IV antibiotics. The medicine was ordered.

Yesterday, I spent the morning on the phone with the infusion pharmacy and doctor’s office. The prescription was not sent to the pharmacy. Then, the prescription was sent to the wrong pharmacy. Now I begin the waiting game. It sometimes takes a week for all the paperwork to be properly submitted by my doctor’s office to the pharmacy so the medicine can be sent to me.



My blood work was resulted yesterday. I do indeed have a bacterial infection. My body is working hard to fight off the flare-up of a chronic bacteria which lives in my lungs. I have been sick for two weeks.

Yesterday afternoon, I had to put all my respiratory equipment away as Terminix was coming. I cannot have Terminix spray any place near my equipment. I have to put everything in a closet and seal the closet.

As I was doing this, my mom fell outside on the concrete. She was very banged up. She needed to make supper and get it in the oven. Thankfully, it was only throwing a few ingredients in a dish and mixing in a few spices. I was scrambling to do this for my mom as I knew Terminix was coming at any moment!

I also did a few medical assessments on my mom. She was concerned about her bloody mouth and the injuries she sustained to her face. I was concerned about her severely injured arm. (At first, she seemed clueless she had even hurt her arm. I was alarmed because I saw it was cut up and badly bruised. I could see it swelling in size right before my eyes.) Additionally, she was in shock. I kept a close eye on her as shock can be very dangerous. I had to make sure she did not have any complications. I filled several plastic zip top bags with ice to help with the pain and swelling in her face, wrist, arm and shoulder.

Before I was done throwing supper into the oven, Terminix arrived. I praise God, my dad had a lot of questions for the man. So it delayed the man about 15-20 minutes, and it gave me precious time to finish throwing supper in the oven, and grabbing clothes, Bible study materials and my ventilator equipment as I dashed out the door.  I quickly did one last assessment on my mom, and seeing she seemed to be stable, I bolted out of the house.

I cannot be in the house when Terminix sprays. We try to arrange these visits when I am in the hospital, at a medical appointment or have Bible study. Last night was Bible study night. I went to the community hall which is just down the street from my home. I went into the community hall. I set-up my heated humidifier and ventilator. I changed my clothes and combed my hair. I rested for a few minutes, allowing myself to calm down as I cooled off. (I was DRENCHED in sweat!)



I then decided I should take my clothes and place them back in the car. Since I had already taken my ventilator and heated humidifier into the community hall and had everything set-up, I decided to leave my respiratory equipment alone. I was just going to be right outside the front door. My medical equipment should be fine. I can breathe for a few minutes on my own.

When I returned from the car, the door to the room in which we have Bible study was LOCKED!!! I was dumb-founded! How can this be!? I knew at once, security must have locked the door. But this was so strange! There was a farmer’s market in the parking. They still needed access to the room and adjacent rooms to put away the tables. Why would anyone lock the door!?



I was absolutely panicked! People from Bible study were arriving. The door was locked. I did not have my ventilator. I frantically searched for security’s phone number. I told one person to go look for security. The man could not be too far away.



THANK GOD the man from security was found a short ways away intermingling with the farmer’s market staff. The man opened the door. He asked, “You have Bible Study tonight?” He also said, “You know, I saw the medical equipment set-up in there. I thought someone might need that.”



I was too flabbergasted and overwhelmed with panic to reply to the man. I hooked up to my ventilator and gulped down precious air as I tried to get rid of all the carbon dioxide which had built up in my body.

Praise be to God, Bible study went wonderfully. It was one of the best studies I have ever attended!

When I came home, I re-evaluated my mom. Her arm was very bruised. It did not appear anything was overtly broken, but I was concerned she could have a hairline fracture. I told her she should go to the emergency department and be evaluated.

My mom went to the emergency department. X-rays revealed no broken bones in her arm. (She still needs to be evaluated for her back, neck, head and shoulder, but that will wait until she can see her regular medical team.) She is very bruised and in a lot of pain, but we were all reminded of what a blessing her relatively minor injuries were. Shortly after arriving at the emergency department, a number of people involved in a BAD car accident came pouring into the hospital. Someone ran a red light and hit about 5 or 6 cars. How very blessed we were we were not involved in that car crash!

Motivation From the Grave

I went to Bible study tonight, and a woman who attended Bible study in December 2021 came. She owns a home in our community, but only visits for a few months a year. She lives in Canada for the rest of the year.

As soon as I saw her, I immediately asked her how her husband was. He was one of the nicest people I have ever met. My dear friend informed me her husband passed away in January 2022.

Tears sprang to my eyes. 

This last year has been incredibly hard. There have been so many times I did not want to go to Bible study, but I kept going because I knew one day my two friends would be back in town. They had told me they would return in early 2023.

For many weeks, I fought to get through the time at Bible study. The one thing which kept me going was knowing my two friends would return.

I was informed by a member of Bible study my dear friend was back in town. I thought it was odd only the wife was mentioned and not the husband. I prayed to God. I asked if her husband may have passed away. I heard a voice say he died shortly after their last visit. I did not want to believe what I heard.

When I went to Bible study, the woman said, “My husband died shortly after our last visit.” I was thunderstruck. It was almost the identical words I had heard during my prayer.

I am very grateful for this man’s life. For one year, he kept me motivated. May his memory continue to be a blessing.

Stressed out! And there goes my blood sugar!

Yesterday was a stressful day. I had to film a YouTube video and quickly edit it in time for release tomorrow. I usually do not film, edit and upload a video all in the same week, but I forgot this week was Feeding Tube Awareness Week.

After frantically pulling everything together, I was exhausted. I thought I would relax in bed. I was in the midst of reading God’s Word, when my mom came into my room. Someone down the street was selling medical equipment. It was possible the person was selling an item I had been looking at buying. My mom was going to look at it by herself, but I wanted to go with her to check out the items. I hoped in the car. In a flash, we were at our neighbors.

The neighbor is moving and was selling wheelchairs, a scooter and two rollator walkers. The walkers were the items I was interested in. I need someplace to set my ventilator and heated humidifier on which has wheels and is easy to move. It was hard to choose between the two walkers with wheels. I suddenly felt very unwell. My blood sugar was dropping. I quickly selected a walker, and we swiftly drove back home.

When I entered my home, my body was shaking. I immediately ate an apple and laid down. My head was spinning, and I felt as though I could not breathe. I rested for an hour. When I was a little bit more steady, I connected my IV nutrition called TPN, and infused it. The TPN has a large amount of sugar in it. Soon, my blood sugar stabilized.

For the rest of the night, I felt as though I had been run over by a train. Usually my blood sugar does not drop that quickly after leaving home. I guess I got stressed out trying to decide which medical item I wanted. This is one reason why I do not like shopping. My body goes haywire.

When someone keeps throwing acid in my face.

Last year someone contacted me because he was an advocate for people with a certain medical condition. The people afflicted with this ailment frequently need a tracheostomy tube. The person wanted information about tracheostomy tubes. I politely emailed the person a number of times. We shared our knowledge. The conversation died out.

Recently, someone emailed me. I had no idea who the person was. The person DEMANDED I answer the email and the laundry list of questions included in the email. The email was sent late in the evening. I was already in bed. The following day, just 14 hours after the first email was sent, the person wrote another lengthy email, which included a LONG rant about what a horrible person I was because I had not answered the first email.



The email was quite vicious and dripped with venom. It disturbed me so much, I had a terrible night of sleep, one which was full of nightmares.

I speculated this person must have been given my email address from the man who contacted me last year (since the person suffered from the same medical condition the man was advocating for. This assumption was unofficially confirmed when a reference was made to the organization the man worked for in a subsequent email.).

I spent about two hours responding to the emails. I gave the person extensive information answering the questions asked. I gave resources to help the person understand the concerns raised.

The response I received back was in short, “Yeah. My doctor told me the same thing. But I am not going to do it.” And then the person went on and on about all the complications which have arisen since the advice was not followed.

Included in this email were many hostile words which seared my soul to the core. I could not understand why this person was filled with such contempt when I had done nothing but been polite and had spent HOURS trying to help the person.

There was no reason I had to answer they person’s emails. I could simply not respond.



I prayed to God, “What should I do?”

I heard in my head a saying from a preacher, “Hurt people hurt people.”

Let me expand this saying. If someone is hurt, the person will lash out and hurt other people. The person writing me these emails probably feels hurt. In turn, I am the target of the person’s ill feelings.

I decide to respond to the emails, but I employ a tactic I learned long ago. Do not say anything in the email. Give no advice. Do not relate anything to my own life. Simply read the email and respond, “Thank you for sharing xxx with me. I am sorry xxx did not go as you had hoped.” And continue the email in broad statements which should not elicit any negativity. Be support but do not give any information which can be turned around and used as a basis to throw acid in my face.

So far, this style of writing seems to have worked. It is allowing my wounds to heal.