Twelve years ago this month I was diagnosed with a condition that would change my life completely. With a “diagnosis” everyone assumes there is a “cure” and that life will get back to normal eventually. But, that didn’t happen. I understand that I am very lucky that my condition is treatable. If I take care of myself, take my medications and see my doctors regularly this disease shouldn’t shorten my life.  But, it has changed my life.

I cannot get used to the fatigue.  Over powering fatigue.  Debilitating fatigue.  Can’t sit up fatigue.  So weak you hold your pee until it hurts fatigue because the bathroom is so far away.  Feel like you have the flu fatigue.  Miss every party and get together fatigue. Frustrating fatigue.  Hard to cope fatigue.  Impossible to explain fatigue.

Every night when I go to bed I think to myself that tomorrow I will feel better. Sometimes I do….and then I must remind myself to not overdo it…and if I do I will pay for it for days.

Happy anniversary.  I am having cake.


8 responses

  1. I just found this blog, in hopes of finding some encouragement, that things will get better. From what I’ve read so far, it sounds I may be doomed to feel like crap for the rest of my life. I don’t know if I can do that. I just don’t understand why I feel worse now, since I have started the hydrocortisone. The Drs say it is suppose to make me feel better. My endo has been watching my adrenals for 3 years. My cortisol was always on the very low end, and my ACTH on the high end. My only symptoms really were that I would get really tired in the afternoon, then I’d perk back up, then get tired again after dinner, and then about 9 pm I’d be wide awake again.

    Then my ACTH went to 52 which is just 2 points out of range, so they had me start taking hydrocortisone. Since starting the medicine on Nov 6, 2013, I’m freakin tired all the time, having stomach issues, like burning sensations, I feel weak, and woozy, and like I can’t see as well any more. I was also having issues with being too hot or too cold, loose stools (when normally I am constipated), feeling shaky, cloudy/foggy brain, burpy, sweaty feet, trouble sleeping and waking up way too early and not getting back to sleep, nausea, headache, increased thirst and urine output, and legs aching. Some of these side effects have gotten better now, but then all of a sudden I’m feeling bad again.

    I called the Drs office after a couple of days after starting the med and the nurse thought maybe I was getting too much and had me cut back. I was still having issues. I decided to go to another endo because I had been wanting to switch anyway. She thought maybe I wasn’t getting enough and upped the dose. By then I was having the stomach burning. She said if I wasn’t feeling better by the next week (this week) to go see my PC. She was booked up so saw another Dr, who thought I was having excess acid in my stomach and wanted to put me on Nexium, which they never bothered to call into the pharmacy, and then I couldn’t get through to them. Meanwhile my stomach was feeling better.

    A friend told me about an article in First magazine about low Glutathione levels and I had all the symptoms, so I started eating some of the foods that are suppose to boost your Glutathione levels, and started to feel a little better. I feel more alert now. But the night before last I stayed up a little too late, then yesterday I was doing pretty good most of the day, but had to pick my mom up from chemo and take her home, sort her meds, catch up on her check book (I have a LOT on my plate). I was exhausted by the time I got home. And I’m feeling constipated again. I did not feel well so I went to bed early and did not sleep well. Something just does not seem right to me. Maybe they need to check all my labs again. I feel way worse now than I did before starting the medicine. It shouldn’t be that way, should it? Any thoughts or suggestions please?

  2. I get it. I don’t talk much about the fatigue, but I often have a hard time just staying awake…and often fail. Sleep, and then I can’t sleep when I should. The day is easier, Why? I’ve fallen asleep at a party, sitting up, even on the toilet once…sleep is my cruel master. The fatigue, often not relieved by sleep, but that’s all I can think of.

    Every night before I go to sleep I think of plans for the next day….still I do this…and then more often than not I can’t do what I planned. One day I will learn to just take the day as it comes (I actually do that, but I need to think that as I fall asleep).
    I think it’s harder for me to go to sleep at night because normally I wake up feeling like crap!

    a diagnosis is nice, but it sure doesn’t mean you will get better does it? We have a new life, at least we have a life to treasure, and people who treasure us.

    thinking of you and sending healthy thoughts.

  3. Thanks for blogging about Addison’s. I’m undergoing testing currently, but as my dr. says I have all the classic symptoms. I’ve been in bed for weeks, with minor excursions out of bed. I had hoped I’d be one of the lucky ones who felt massively better after a few days on meds, but apparently not. I’ve started blogging about my experiences as well, because as a new Addisonian, I’m extremely hungry to read about personal experiences. Thanks again.

  4. Hi Mo,
    Your anniversary with Addison’s disease seems so bittersweet. I am so sorry you are afflicted with the terrible disease but I am glad you are with us to share your journey. Thank you for sharing your story and creating awareness. I can relate all too well to days of debilitating fatigue.

  5. My friend and twin,
    There really is only one solution and that is to have your cake, your ice cream, whipped cream and sprinkles (notice I have NOT added anything “weird” in honor of your anniversary and eat them all IN BED or on the couch. Why overtax yourself? Frankly, It’s highly over-rated. If I can do one errand a day I’m good for the day, if I can do two and not feel wiped out for days, it’s a miracle. I’ve given up on the cure idea however, instead of any of those stimulant drugs, I’m working with candy corn (and no, I am not kidding, to give me a sugar rush for a little sugar high in the afternoon!) Love, Laurie

  6. You deserve whipped cream and ice cream!
    While a diagnosis might give a name to a chronic illness, it doesn’t come with a guide book on how to deal with all the changes or a cure.
    I hope that tomorrow is one of the days you feel better.

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