Adrenal Insufficiency What It’s Really Like to Have AI

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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.

  1. 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.
  2. 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 nowhere to be found when exhaustion takes over.
  3. 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.
  4. 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.
  5. 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.
  6. 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.
  7. 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.
  8. 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?
  9. Makeup. 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.
  10. Appetite. Barely notice it. Sometimes you go without eating cause you’re not hungry and you get distracted easily and busy with other stuff.
  11. Pain. Random leg, arm, neck, back and stomach pain. Aching. At night. During the day. Whenever.
  12. Shakey. Dizzy. Blurred vision. Light headed. Self-explanatory. Especially after standing up.
  13. Depression. Anxiety. Excessive worrying. Overthinking. Mood swings. No drive. No motivation.
  14. 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 arthritis 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.

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.

Angela x

Angela Milnes is a Qualified Early Years Teacher who has specialised in Preschool and Kindergarten teaching. She has a wealth of experience teaching young children and is passionate about kids crafts and having fun as a family. Angela has also taught cooking skills and loves to share both family recipes and easy crafts here on The Inspiration Edit. Follow her on Pinterest!

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  1. whoah, sounds tough! I get the impression it’s somewhat tiring? I hope there’s something that can help soon. I’m a midwife and nurse although mostly midwife but I’ve not come across AI. #thelist

    1. Yes, It is a very exhausting illness and it is so rare. I think anyone with AI, who becomes pregnant would be under a specialist team at the hospital and would be carefully monitored during the pregnancy etc so im not sure how common it would be to meet an expectant mother with AI, as she’s be surrounded by loads of specialists and during labour would need continuos IV of hydrocortisone to be pumped through to prevent death. ANGELA X

  2. Angela, thank you for sharing this and helping to give an insight into what life is like with adrenal insufficiency. I didn’t realise just quite how exhausting and debilitating it is. Just been catching up on some of your other posts too and getting more insight into your illness. Glad that blogging is helping you through and really hope that you manage to raise the funds for an adrenal pump as soon as possible xx

    1. Thanks Louise. It really is a difficult illness and i’ll keep doing my best to get through! i appreciate you taking the time to read and comment on this and your words mean a lot to me. Angela x

  3. Thanks for sharing the information. I never knew anything about it but this is a real eye opener. I take for granted too easily the small things that I don’t even think twice about. Well it’s going to make me think more than twice from now on. Keep doing what you’re doing- Thanks for that!

    1. Thanks Aby. It’s not easy and makes writing posts hard and frustrating. I read another blogger saying it only takes an hour or two to write a certain type of post and I was like thinking, gosh that would take me ages. it’s not easy but, we have to live with it and find ways to cope as well as fight for better treatment. ANgela x

  4. I have Addison’s and while my family is very supportive I still feel very bad because
    I cancel more than I go out and it is amazing at how doing simple things are the hardest.
    This is such a rare disease that it’s exhausting explaining it to people.
    I am grateful for my physicians who communicate with each other as well as with me.
    After years of misdiagnosis and pure run around .
    I was literally near death when I met and was diagnosed by my docs who had brains.

    1. Oh it can be exhausting explaining the illness to others. Often the illness is hard to diagnose and sorry to hear you had such a difficult time getting a diagnosis. Hope your getting good treatment now, although we still suffer as its a chronic condition which affects us every day,

  5. Thank you! I have such a hard time explaing how I feel to my family and friends. This post is my life. I even sit down to do my make up and to dry my hair. It takes forever to get ready because I have to keep taking breaks. I shared this with a few of my family and friends, and I really think they “got it”! I have enjoyed reading your posts. You are making a difference. Addison’s disease is something I wouldn’t wish on anyone. The last crisis I had, the triage nurse was so uneducated on the disease that she didn’t think I needed to be seen right away. I sat in the emergency room for 8 hours. My husband was holding me up in the chair as I was in and out of conciousness. They finally took me back when I passed out and my husband couldn’t arose me. I spent the next 2 days in ICU but don’t remember any of it. I am full of these horror stories as most Addison’s patients are. Thank you for raising awareness!!

    1. yes, half the time my illness is NOT taken serious until I’ve already suffered. There is a huge lack of awareness and lack of education even in ambulances and A and E. it can be scary when they ask you or your hubby what they need to do.

  6. Thank you for sharing. I too have PAI and it sucks. I have other autoimmune diseases but adrenal insufficiency kicks my butt harder than the others. More acknowledgement needs to be placed on adrenal diseses. People just don’t get it. Your article hit every point straight on. Awesomeness!! ?

  7. Hi Angela , I have recently been diagnosed with Secondary Adrenal Insufficiency. I also have fibromyalgia ,vulvadynia, IBS and, spinal issues. Your blog has made me feel that I’m not alone. Doctors don’t know what to do with me, I go to the hospital for a Adrenal crisis only to be sent home after it’s calmed down. On top of it all the Prednisone I’m taking makes me sick, so does the Hydrocortisone. How can I possibly have to take something for the rest of my life that makes me sick? This is a terrible disease, but reading your blogs have given me hope and a feeling that I’m not alone or crazy. Luckily, like you , I have a very supportive husband who made it so that he could work from home to take care of me. I could only hope that the rest of the bloggers out there have the same support. Thank you Angela for helping us all to understand this condition a little better. With knowledge there is power! Thank you so much, Christina Lopez

    1. Hi Christina, I’m glad this has helped. It is so hard and whilst i am stuck at home most of the time it is good to know we are not alone and that we can still have some kind of life with this awful illness. I hope you can have the best treatment possible.

  8. I was diagnosed with AI 9 years ago. I can’t tell you how spot on you are about the showers & hair!!! OMG! It literally takes everything out of me! I have to take breaks in order to complete the task. It’s crazy. And I adore my granddaughter- she’s such a sweetheart. It’s hard for me that I can only play with her the way I want to for 10-20 min at a time and then am exhausted. She is so much fun and it breaks my heart that o tire so quickly. Shopping is exhausting! Doing the floors is exhausting and makes my whole body ache. A good day is a day where others would feel like they’ve had to get through the day on two hours of sleep the 2nd day after a strenuous workout. A bad day equates to someone else having the flu. A serious day is one where out of the blue you start slurring your words, lose your balance, get agitated and start to feel queezy and nauseas. (Symptoms resembling a mild stroke). I lose everything all the time…even things I had 2 seconds ago…and can go to get something but once I get where I was going I forgot what I was going for. I’m lucky. My family knows more than most families do about this disease and my warning signs. But yet no one can truly understand it unless they have it.

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