Adrenal Insufficiency What it’s really like to have AI
Today I’m sharing a post written by Stephanie Lynn who has a diagnosis of Adrenal Insufficiency. This is what it’s really like to live with the illness and was written in an attempt to help her friends and family understand how life is now she has the illness. This is shared with permission. Angela x
What it’s really like to have Adrenal Insufficiency
You wanna know what it’s like to have Addison’s Disease? I can give you a few examples of things that I have struggled with & continue to struggle with, that might shine the tiniest amount of light for you. My medicine just kicked in and food won the battle of whether I was gonna sleep or not and I’m bored.
- Earlier I was doing my nails, I finished my left hand but barely had the energy or desire to do my right hand. But I did it anyways, sloppily though. I don’t care at this point.
- Sitting upwards for too long, or standing, is exhausting. You’ll literally sit down on the floor or lay down in random places. Literally no care given. Dignity is no where to be found when exhaustion takes over.
- Taking showers becomes a chore. Rinsing the conditioner out of your hair can’t seem to happen fast enough. The warm water & steam makes you feel even more out of breath. Don’t sit down though, at this rate you probably won’t get back up. At least not until you’ve sat there long enough for the water to get cold. Or you could call someone to help you out of the bath. I never take a bath or a shower without my phone very close by in case of an emergency or if I need help out.
- Shopping. The concept is fun. Trying on clothes and getting undressed and redressed becomes a nuisance. You no longer really wanna try stuff on, so you take chances. Walking is even more exhausting.
- Preparing your food. Whether it be microwave, oven or a stove. Getting the ingredients or food ready is one big task, getting a drink is another. Carrying it all to the table is another. Cleaning up is another tiring task.
- Have children? Try not being able to hold your daughter for long or even just a little while unless you’re sitting down and even then you can’t hold them that long either. The physical exertion of just making sure they don’t fall is exhausting. Playing with them, teaching them how to walk, bending over, the fighting when changing the diapers. It is a struggle.
- Sleep and waking up is tiring in itself. I can sleep 16 hours and feel like I only slept 2. I have to force myself up. Then you have trouble falling asleep too sometimes.
- Memory. It’s slipping.. or was this 8? What were my cards again? This is the 4th time I’ve had to look at them within 10 seconds. Did I take my medicine? When did I eat last?
- Make up. I have to sit down. I have to take breaks. Same for doing my hair. Blow drying it becomes an impatient chore. The heat isn’t helping much either. I’m already out of breath from the shower, drying off and getting dressed.
- Appetite. Barely notice it. Sometimes you go without eating cause you’re not hungry and you get distracted easily and busy with other stuff.
- Pain. Random leg, arm, neck, back and stomach pain. Aching. At night. During the day. Whenever.
- Shakey. Dizzy. Blurred vision. Light headed. Self explanatory. Especially after standing up.
- Depression. Anxiety. Excessive worrying. Overthinking. Mood swings. No drive. No motivation.
- Conversations. Too much effort. Too much to type. (Messaging). Focusing. Can’t focus. I’ve said exhausted a lot. And that’s because that is what it is. Exhausting. Absolutely exhausting. Imagine being 20 something but feeling like you’re 80 years old with athritis and all of these problems. Your body all of a sudden doesn’t feel like the body you should have. All because your body is lacking one ( more) hormone- cortisol.
You kind of get the feeling of for goodness sake why the **** do i have to deal with this ****.”
Oh and another one.. holding your phone to type this. Hands. Cramping. Burning. Going down into your arms. Pain.
Thanks Stephanie for sharing your experience with AI. Hopefully this can help people to understand and those who have the illness to relate and know this is what it’s really like.