When I don’t conserve my energy, I have a MAJOR health crash

Last night, I had the opportunity to attend a get-together right down the street from my home. Normally, I avoid outings, as they really tire me out. But, I assured myself I could do this.

I did more than what I probably should have. I pushed aside the fatigue which was quickly overwhelming me. I pretended I was “normal”. I feigned being well.

When I got home, my body felt as though it was being electrocuted. I tried to go to sleep, but the pulsating electricity continued to cascade down my body. In the wee morning hours, my body drifted into a restless slumber.

Today, it seems every muscle in my body hurts. It hurts to breathe. Light aggravates my headache. It feels as though my limbs are weighted down with heavy bricks.

I really enjoyed seeing people, some of whom I have not seen in over four years. It was a great night, but I over-did it. It is hard to adhere to strict limits my medical condition has for me. I often forget my body has limited energy. It takes very little to tire me out and make my health crash.

And now I wait...I wait for my energy levels to return back to normal. Thankfully, I have no plans to leave my house for the next week; so my body can take its time recovering from this health crash.

The never-ending game of “catch up”

For man my years, I have felt as though I am constantly in “catch up” mode. There are a mountain of things I want to get done, but they remain undone. I have been trying to make lists and force myself to get things done. This works well until my body says it has had enough.

It is odd to watch people be productive day after day. I wonder how they have so much energy. I try to do things two days in a row, but by day two, my body is throwing an unrelenting fatigue party. It does not matter how hard I push myself, my body refuses to function.

After being sick for so many years, one would think I would be used to having lots to do, but no energy to do it.

Perhaps tomorrow will be a better day…and maybe tomorrow I will be able to get a few more things done and crossed off my never-ending list.

I am tired and in pain. So many things happening…

A few weeks ago, our washing machine abruptly stopped working. Thankfully, since it was during Memorial Day weekend, we were able to get a good deal on a washing machine. We had to survive two weeks without a washing machine. This would not have been a big deal, but while my laundry was in the washing machine is when the machine broke. A neighbor generously offered to finish doing my laundry. I was able to get the load of laundry done, but I still had other laundry which needed to be washed.

On Saturday, a new washing machine was delivered. I was so thankful and grateful to be able to get the rest of my laundry done.

On Monday, I had a doctor’s appointment. The physician played around with my tracheostomy tube. The pain this caused nearly brought me to tears. For two days, I have been having significant pain around my tracheostomy tube. The pain is finally getting better today.

My pancreas has been crabby. Eating food makes it hurt. I am trying to eat, but I am also trying not to agitate my pancreas. It is such a delicate balance. I am thankful for my IV nutrition called TPN. This helps get me calories and nutrition through my vein. It bypasses my pancreas and does not cause me pain. The TPN provides about half to three quarters of my daily calorie needs.

Yesterday, when a small load of laundry was in the dryer, the dryer abruptly stopped working. My heart sank. The dryer now needs to be replaced. At least we have a washing machine. We will just have to hang up everything around the house to dry.

I found out today, after corresponding for over a month with the company who makes my tracheostomy tubes, they are not going to replace my tracheostomy tubes which have been recalled. Despite providing the tracking number for the package, they claim the package is still in transit. The United States Post Office states the package was delivered on May 20. It seems I have lost both the cost of shipping the tracheostomy tubes and the tracheostomy tubes. This is quite frustrating. Tracheostomy tubes are expensive. They are about $80-100 each.

This comes at an inconvenient time as I only have one tracheostomy tube. I have requested more tracheostomy tubes from my respiratory company, but the tracheostomy tubes are on back order.

I am completely drained of energy today. I was going to lay in bed all day. As I got all settled down, my TPN pump started beeping. It said there is an error on the pump. Please contact my provider. Thankfully, I have a spare TPN pump. I had to get the back-up pump out and program it. I then had to disconnect my TPN from the broken pump and connect it to the new pump. It seems to be working ok. I have to wait until next week to get a new pump because my TPN shipment was already sent out for this week. Thankfully, I have a spare TPN pump I can use.

I am laying in bed and about ready to fall asleep. This all has been so stressful on me. I hope nothing else happens as I just want to rest and nurse my sore tracheostomy and aching pancreas.

Oh the headache. When my cuff fails on my tracheostomy tube

For the last week, I have been fighting with my tracheostomy tube cuff. It has been deflating during the night. When this happens, I do not receive the full support of my ventilator. Inspired air leaks up my airway and out my nose and mouth. A significant amount of the inspired air does not reach my lungs.

Breathing works in the following way: it takes energy to breathe in, and expand the lungs. Exhaling is passive. When the body stops inhaling, the lungs automatically decrease in size, which forces air out of the lungs.

When my lungs do not fully inflate due to a faulty tracheostomy tube cuff, my body cannot properly exhale. Carbon dioxide builds up in my body. Often, I will wake up when my carbon dioxide levels get too high. I then have to re-inflate the cuff on my trach tube, and I again receive the full support of the ventilator.

Last night, however, I was extremely tired. I did not wake up during the night. Instead, I woke up this morning with the cuff on my tracheostomy tube deflated, and I had a MASSIVE headache due to high carbon dioxide levels. It is hard to explain this headache. It penetrates every cell in my body. I am extraordinarily tired. I am extremely short of breath.

Due to a recall on my tracheostomy tubes, I only have two spares in my inventory. I am reluctantly going to use one trach tube tonight. (I have an order in to my medical equipment company for two more tracheosotmy tubes. However, they are on back order. It is unknown when they will arrive at my home.) Tomorrow, I need to remember to contact places which sell my tracheostomy tube and hope and pray I can find my tracheostomy in stock and also find one which has not been recalled.