• My Chronic Illness Life
    Fatigue is such an understatement, I was working 2 full-time nursing positions at the time my first adrenal crisis hit me, so hard that I woke up one morning and couldn’t even get to my bathroom, I’ve been consuming steroids now just to keep alive but side effects are horrendous
    I’m struggling I’ve been out of my job due to a couple chronic conditions.
    These aren’t curable. I have Addison’s Disease and Chiari Malformation

    You can not always see that I am ill. From the outside I look fine.
    I want to explain the fatigue that comes with being chronically ill.
    Fatigue is not like being tired. When you are tired you simply take a nap and feel recharged when you wake up.
    I do not feel recharged when I wake up from a full nights sleep (if I manage to get a full night at all) let alone feel recharged after a nap.

    Waking up
    Let me explain:
    My energy levels are like a phone battery that does not charge properly. I can sleep a whole night and still feel like I spend the whole night being wide awake. Imagine your phone not charging properly. The connection between the charger and the battery keeps breaking up. You have your phone connected to the charger all night long, but upon waking you find that your phone only charged 50%.
    This is how it is for me:
    There are good days and bad day’s. Let’s say I am having a very good day.
    I have had a solid 8 hours of sleep and I have just woken up. I start the day with half a battery – 50%.
    I open my eyes, get out of bed and get dressed.
    My phone battery is now at 40%, I did not even have breakfast yet. Breakfast and starting the day
    I prepare some food and eat my breakfast, 35% left.
    Now it is time to start the day: take the kids to school, go to work, do housework, whatever I need to do today.
    This takes up the rest of my battery. I am at 1% and is not even lunch time yet.
    Let’s say I am able to take a nap to “recharge”. Many chronic illness fighters are not able to take a nap during the day because they are working or taking care of their children or doing other things preventing them to take a nap. But let’s say it is a good day and you are able to take a nap like me.
    After 2 hours I wake back up, first not realizing where I am or what time it is. When I get back to reality I do feel a little recharged.
    My battery is now at 20% this is all I have left to use for the rest of my day.
    Rest of the dayI start to cook dinner but before I am finished my battery is empty again.
    I still have 3 hours left in my day before I can go to sleep again. I am literally running on an empty battery.
    Finally it is time to go to bed, I am exhausted. I totally overdid it today and insomnia kicks in.
    The next day is not such a good day. I wake up with 30% battery…
    Life while being fatigued
    This is how life for someone with a chronic illness is on a daily basis. You can have days where you wake up with the battery charged for 70% and you can have days that upon waking you feel like you only have 20% for that day.
    Overdoing it one day will take away your energy for the next day. The other way around works too, although to a much less extent. If you know you have a big day coming up and you need energy, you can rest beforehand and make sure you are as charged as you can possibly get before starting your big day. With resting I mean having 2 or 3 complete bedrest days to try and hamster up enough energy to get through the big day ahead. Sleeping for an hour or two do not help at all. Sometimes makes it worse.
    My chronic illness life with Addison’s Disease,

    A. Gray

    • Hi Amanda, I am sorry to hear you are struggling so. Sadly, your story is quite common with our patients. If you’d like to speak with one of our Patient Coordinators, you may do so during a complimentary call. You will get your questions answered, learn what we do here, and together see if and how we can help. You may use this link to get started: https://www.healing.org/info/ Wishing you our very best!

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