Addison’s Disease and why it changed my life.

Post from contributer, Ilena Bickley


I know a lot of you who follow me already know my story pretty well. But a lot of what I deal with, just on the Addison’s Disease, is more than I like to admit.
Do I think my life would be easier with just the one diagnosis? I believe so. Only because I see a lot of fellow Addisonian’s doing really well on their journey. Am I jealous of that? OH YA! Of course I am. Who wouldn’t be? I know for a fact that they have good and bad days, and they probably post more about their good days than their bad ones. It just depends on who they are wanting to reach. You can totally live an amazing and adventurous life with having Addison’s Disease, but I also know that you will pay for it.
There is a lot of factor in when you are working out, traveling, going to events, and so on. Up dosing is a MUST for most Addisonians. Even when we have to go to the dentist, we have to up dose. It’s so strange to think about that. But that little bit of stress, that you might not even know you had, will come back and bite you later. We have to avoid people who are sick. Our immune system is not as strong as a “healthier” person (this is why I carry a mask in my purse). Our bodies get fatigued way faster and it takes us longer to heal and get well.
With all those factors, it is harder for some of us to want to venture out in the real world. Lot’s of us like to stay in our little homes, safe from sickness and stress. I am one of those people.
Every story is different. Every person handles this disease in a different way. Yes there are some similarities in symptoms and activity, but they will take their toll on us in different ways and to a different extent. I know that when I get a cold, it doesn’t present like a normal cold (nose running, coughing and sneezing). Nope, mine is a full on, my body can’t move. Any bit of air that touches my skin, feel like it is trying to blast my skin off. I lose my voice and all I want to do is sleep, but I can’t. My bed hurts my body, my clothes hurt my body. I can’t seem to keep my eyes open, I can’t eat anything and I have to force myself to drink water. This kind of sounds like the flu. The flu is way worse for me.
When I exercise, it will drain me for the rest of the day, and sometimes even the next day. My body is just like, “nope. We are not gonna participate with you any more.” This is not for all exercise. I can walk for about 15 min briskly. I am able to jog for a couple mins. And that is about all my body will allow. I have done yoga a few times, but it takes me a few days to recover from that. I can make it through the whole 60 min class, but I am struggling and I don’t do all the moves. But my body likes being in the heat.
If I have to travel more than two hours, I have to up dose. Driving really takes its toll on my body. I really don’t know why though. I feel relaxed, listening to my audible, and not stressing-or at least I don’t think I am stressing, but my body deems it as stress.
There is a lot I can’t do that other Addisonians can, but I always have to remind myself that most of them only have the one diagnosis. I have more.
I try to stay positive for the most part. I try to keep my stresses down. But there is only so much you can do. I got into such a dark place that it scared me. I had to seek help, and I am so thankful that I did. I love being able to raise awareness. I love being able to share other spoonie stories. I love being an advocate for such a rare disease. I can dwell in the dark place or I can choose to shine and help others.

man sitting on edge facing sunset
Photo by Abhiram Prakash on

Don’t get discouraged fellow spoonies. There is so much we can still do (from the comfort of our beds even). Hold your head up high, self advocate, and reach out to others, because they will know what you are going through and they will help lift you back up.


-Chronic Mom’s Club

1 Comment

  1. Alyssa Hogan says:

    Prayers for anyone and everyone suffering from this horrible but rare disease. My dad had it for 20 years + and he passed away in December of 2018. He was 46 when he passed. His cause of death was complication of adrenal insufficiency. He had been out of his hydrocortisone for 5 weeks. Was too stubborn to go to the ermegencry room where they would have gave him his medication and a script for more. He caught a cold on top of it and it turned into an upper respiratory infection, which took it’s toll on him and he passed.

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