Have courage for the great sorrows of life, and patience for the small ones. When you have laboriously accomplished your daily tasks, go to sleep in peace. God is awake.  – Victor Hugo

Lately I have been plagued with extreme fatigue. After listening to others with gastroparesis, I notice a common symptom of fatigue. All of us, more or less, may suffer from varying levels of fatigue. It is my experience that this fatigue is exaggerated with any kind of stress, illness or even just normal activity. I’m currently fighting an infection of my stoma and in doing so, have been completely drained of all my energy. I don’t even want to get up in the morning, but the morning cry of my new puppy forces me out of bed. I suppose this is a good thing, but it doesn’t feel all that great. I can’t tell if my body is just being lazy after the many months of being sick, or it truly is using every resource to build my body back to a healthy status. It isn’t as if I don’t get enough sleep. It isn’t straight up sleep deprivation that’s causing it. I get nearly 12 hours every night with the help of my sleeping medications (lorazepam and ambien combo). I guess it is yet another subject to bring up with my doctor! He really is a saint for having to put up with me. I am not an easy patient!

Never hurry. Take plenty of exercise. Always be cheerful. Take all the sleep you need. You may expect to be well. — James Freeman Clarke

I guess this is my complaining post. This past weekend was not a good weekend for me, physically or emotionally. I had a difficult time accepting my new normal, I guess you could say. Normal meaning obeying a restricted diet and getting the rest of my nutrition via jejunostomy tube. My husband wanted to go out and try new restaurants this past weekend which was difficult for me, because either I didn’t feel like eating or I couldn’t eat what it is they served (greasy, fatty, whatnot). I wanted to give up and give in to the great food at the restaurants we visited. Not being able to enjoy what I once was able to, made me feel so depressed. Eating may seem like a small part of our day but when you can no longer participate as you once had, you realize what a big part of the day it really is, and how important it is to not only your physical wellbeing but your emotional wellbeing. In order to pull myself out of, what I could recognize as a downward spiral of negative emotions, I had to remember all that I do have – and how it is often more than some and to be thankful for it.

While my health isn’t what it could be, it is stable. I’m thankful for that. I have one heck of a husband who has helped me through everything. Unfortunately I have been dealing with these health issues for the entirety of our relationship (married and not), but he has handled it wonderfully. My family and even extended family has been more than supportive and I have been blessed to find the most fantastic doctors and nurses and hospital staff in the world.

Having good doctors really makes a huge difference. For years I stumbled around looking for doctors who would listen to me and believe me. Over the years I learned to self diagnose and figure out tests that should be done so I could demand whatever random doctor I was seeing at the time, to do them. Not anymore though. It is such a relief and load of stress removed from my life, to have a team of doctors and nurses fighting the fights I used to fight alone. Because of all the years of physician neglect, I have become, like previously mentioned, a difficult patient. My attitude or behavior has not altered the treatment I have received, and for this, again, I am thankful. So many things to be thankful for, I cannot possibly have right to complain.

The way to keep your health is to eat what you don’t want, drink what you don’t like, and do what you’d rather not. — Mark Twain

Sometimes you just need to suck it up and move on in the best way you know how.

I am normally a daytime feeder, as I feel it is more natural and it lets me drain/decompress at night. A few nights back I had my Farrell Valve hooked up to my J-tube for a night of decompression and drainage. I have found the J-tube to be much more secure than the NJ tube ever was so when I woke up to a mess the next morning, I was more than surprised. Somehow I had rolled over on to my connector tube, pinching it shut and forcing the Farrell Valve to come unplugged. Since I had been draining all night – the clamp on my tube was open to allow for that process to happen. Being that the clamp was open and the Farrell Valve disconnected, intestinal fluid gushed out on to my bed like an erupting volcano. I realized quickly what had happened and rushed to close the clamp. My fast reaction time was no match for the current flowing through my body, and my bed and sheets will forever show the signs of this most disgusting battle.

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