Although every day of my life is different, I have a general routine I do to manage my Mitochondrial Disease. From waking up in the morning until I go to bed at night, my life revolves around keeping my symptoms at bay. Join me this week as I share with you a day in my life with Mitochondrial Disease.
When I wake up in the morning, the first thing I do is turn off my TPN pump and disconnect my TPN. I am thankful I do not have to run my TPN 24 hours a day and can disconnect from it to give my liver a rest. The TPN provides about two thirds of my daily calories.
Next I begin my daily process of cleaning my airways. For more information about my airway management, please see the video a day in my life with a ventilator.Once my airways are clear, it is time to cautiously get out of bed. I have a condition called postural orthostatic tachycardia syndrome which causes my heart rate to be very high when I am upright. For this reason, I have to be very careful when leaving my bed. In the mornings if I move too quickly I develop severe chest pain, dizziness and my muscles may give out. Also, due to mitochondrial disease, my muscles are usually very tight and sore after a night of sleeping. Once I manage to get out of bed, I brush my teeth, comb my hair, change my clothes and then it is time for breakfast.
My muscles are often very weak in the morning. This means eating solid food can cause me to choke because my swallowing muscles are not strong in the morning. For breakfast, I usually drink tea and eat soup. I avoid solid foods until later in the day to prevent food from getting stuck in my throat.
During breakfast, I begin my long day of taking medicine. One of the first medicines I take is liquid carnitine. Carnitine is available in pill form, but I have found taking it in its liquid form is easier to swallow and prevents the pills from getting stuck in my throat. I also take pancreatic enzymes when I eat because I have chronic pancreatitis.
After breakfast, I am usually exhausted. I go back to bed and lay down for a few hours.
When I get out of bed, it is usually time for lunch. For lunch, I usually have tea, soup and fruit. Although my ability to swallow is usually better at lunchtime, I still am cautious about what I eat because solid food can often become stuck in my throat. At lunch, I take more liquid carnitine and pancreatic enzymes.
After lunch, I usually go back to bed. I have weak eye muscles which cause me to have double vision and headaches. It is worse in the mornings and gets better as the day progresses. For this reason, I try not to do too many tasks which require me to read or focus my vision during the day. I try to keep these tasks for the evening. In the afternoon I sometimes listen to YouTube videos, listen to the Bible or catch up on correspondence. Frequently though, I am too exhausted to do anything and often sleep for several hours.
In the evenings I finally have energy to function. For supper, I can have solid food and often eat cooked vegetables and fruit. Also since my swallowing is much better in the evening, at supper is when I take most of my medicines.
After supper, I often work on YouTube videos, read the Bible or check social media.
Around 9 p.m., I start getting ready for bed. One task I have to do is set up my TPN.
Setting up my TPN requires me to infuse my TPN bag with two vials of multivitamins. This is the hardest part of my day because my hands cramp up easily and my double vision makes it hard to accurately get the syringe into the vials. I also have a hard time coordinating my hands to hold the multivitamin vial steady while trying to insert the needle into it. When I try to measure out the multivitamins in the syringe, my weak hand muscles makes it hard to pull back on the syringe. I have messed up this part of my TPN many times. Thankfully I have extra syringes and vials of multivitamin.
Around 10 p.m., I get ready for bed by brushing my teeth, changing my clothes and lie down to sleep. Then it is lights out for the night.
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