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My Experiences of Learning to Live with Addison Disease this Last Year

Thought I'd explain why I haven't added anything to this blog in about a year. Please keep in mind that these are my experiences -- everyone is different and you should consult with your doctor to determine what is the best treatment for you.

When I last wrote, I was experimenting with different doses of hydrocortisone (under my doctor's watchful care). I tried higher doses which
just made my blood pressure and blood sugar slowly rise, so I cut down and in a couple of days they would come down again. I tried lower doses and my blood pressure and blood sugar dropped. About 60mg of hydrocortisone seems to work for me and keeps everything more stable. This is higher than most people need, but I also have several injuries and allergies. When I take less I get depressed, shaky, dizzy when I stand or move, cold, fatigued, and nauseous. I also learned that medication does not seem to stay very long in my body, so I need to take some hydrocortisone every couple of hours. Though I take a dose in the middle of the night, I am still so low by morning that I need a double dose to get me going. I've also learned that hydrocortisone has a very short half life-- from 2 to 6 hours depending on the individual. I could take a stronger, longer lasting cortisone, but I feel much safer with just the natural replacement hydrocortisone.

Though my dose seemed to be keeping my blood pressure and blood sugar pretty stable, I was becoming more and more tired with everything I did. Finally last December, I was unable to get out at all without becoming seriously ill for days afterward. We couldn't think of anything else to try. I was faced with the dismal prospect of having to remain in my home for the rest of my life.

Determined that their must be something I could do, I thought I would try and simplify my life and see if that would help me feel better. As I was going through some CD's, my hands and face started to turn pink and itch. I went to my doctor, and after some tests, learned that I'm very allergic to petrochemicals. The next few months were spent getting rid of as many plastics, polyesters, and vinyls as possible. I had no idea they were everywhere in my home! I also had no idea that some of the chemicals in plastics can interfere with my body's ability to use different hormones. Now that I am living in a cotton, glass, metal, and wood home (I got rid of lots of things!), I'm feeling much better! With Addison's disease I have little immune function and do not have the normal protection a body should have against chemicals. I'm realizing since I do not this normal protection, I need to be far more careful to avoid chemicals in my home and food. I also found that getting rid of particle board has helped me feel better. Both the plastics and the formaldehyde in the particle board were giving me headaches and making me feel more tired.

Getting all these things out of my home caused me to feel better. Now I can get out and only be a little tired the next day. I had had hopes of living a "normal" life and doing whatever I wanted, but I'm coming to see that that is unrealistic. My body doesn't produce any detectable amount of cortisone. I am totally dependent on the hydrocortisone medication to stay alive. I will never be able to live a busy life, but do I really want to? I'm realizing that I need to monitor stress and rest and relax to compensate for stresses.

At first I had hoped that I could just increase my dose of cortisone until I could do whatever I wanted when I wanted. I now see that this simply won't work for me anymore than a diabetic can up their dose of insulin and eat whatever they want. There seems to be a reasonable amount of hydrocortisone I can take, then I must limit the amount of stress to that level of medication. No amount of cortisone will allow me to live a high pressured life, at least not for long, then I will collapse. My doctor has told me that I push myself until I deplete my adrenal reserves. Actually, I think all I know is pushing. I've always been tired and seem to think that as long as I can move, I'm fine. When I run out of reserves, I abruptly stop like a car that runs out of gas, except I takes me months of rest to slowly rebuild the reserves I need.

Now, I'm trying to identify the things and activities that cause me stress. After a big day out, like yesterday, I'm needing to spend a lot time today relaxing and resting to rebuild adrenal reserves. I'm struggling with setting priorities, planning ahead, and eliminating or delegating activities which are stressful for me. I'm trying to listen to my body, notice the early signs of exhaustion, and stop. It is challenging to live a more disciplined life, but I've really had enough of pushing then crashing. I am enjoying being able to make commitments and not have to cancel at the last minute because I am ill. Instead of trying to do everything on days that I feel better, I now pace myself and am able to continue doing something each day instead of rushing one day and barely being able to blink the next day.

I'm learning that Living with Addison's Disease means learning to live a moderate life.