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Addison’s Disease–time for an update

I’ve had Addison’s Disease for nearly seven years now and they have been some interesting years. It’s time to make some more notes about what I’ve learned.

The absolutely best thing I did

The most useful thing I learned: get a private endocrinologist. You only need to see them twice a year for this to really benefit you, but at first (maybe the first three months or so) you might need to see them more often.

The next most useful thing you can do for yourself: get a good GP.

The next absolutely best thing I did

Was self-care. This is the basic obvious stuff, but once you really commit to improving it, you will see massive improvements. When I first was diagnosed with Addison’s, I would have called myself a slim and healthy 25-year-old, and I would have been so, so wrong. I didn’t really exercise, I drank too much, and my eating habits were good, but could have been better. Addison’s — like any chronic illness — demands that you know what your body is doing most of the time. Do I crave salt? Am I thirsty a lot? Am I way more tired lately? Am I dizzy? Are my joints sore or was I just sitting funny? Once you start listening, you realise your body is telling you some other quieter things. Things like “don’t drink so much, it makes your sleep suck” and “the more you move around, the better you feel” and sometimes “for God’s sake have a snack before you go off the deep end.”

This took years to learn. I began exercising more — some yoga, then a little walking, and then some running — and gradually started feeling the difference. I slept better, I cut back drinking. Good things.

During the eighteen months or so I was taking waaaay too high a daily dose of cortisol, things felt bad. I was moody and tired. I lost too much weight, I started overexercising, I ate too little. I kept losing weight. My right hip became very sore and turned out to be a stress fracture in the femur neck, needing quick-smart surgery to set it. I started gaining a little weight: I found a good balance. I kept exercising, I kept eating .

Chronic conditions are tricky: no bones about it. As far as they go, Addison’s is a really good one to have: the day-to-day stuff is, for me, mostly pretty manageable.

But that’s just me. I don’t have kids, and (so far) I don’t have any other chronic health concerns like Coeliac Disease or endometrosis. They would change things. The key thing about self-care is knowing yourself and knowing how to care for yourself. Which means when the guidelines say exercise a little every day and you come up against a day where you have zero spoons left to give, you don’t get to beat yourself up about it. You get to say ‘not for me, not today’. For me, it means that if I have a day where I’m drained — and it does not make one lick of difference how I got that way, whether it was drinking too many Dark N Stormys or whether I over-meditated and forgot to nurture my lower charkras — if I’m drained, I respect it. I sound really assertive and gung-ho here, but I’ll be honest: I get all whiny and unhappy when I feel like that and I’m way more in denial. So some days I’m better at it than others. Growth is a process.

Take home message

Learning to care for yourself is essential in managing a chronic health condition. There are two prongs to this fork of wonder:

1. Get specialist help. If you can afford it, seeing a private specialist twice a year is great. If you’re dealing with an ongoing health problem, I would assert it’s a better investment than nearly anything. I’m not saying trash the mortgage: I’m saying if you can find a way to save up for a specialist, it is absolutely worth your while. If it’s out of your reach right now, under Australian health care, you should be able to get a referral from your GP and see your local hospital endocrine registrars without having to pay a farm and a leg. Even if you have to drive a fair way or catch the train to do so, it’s worth it.

2. Learn about yourself. Pay close attention: figure out what makes you feel better, what makes you feel suck, and what you bounce back from. Nail down any unfound food allergies; get tough about saying no at work and asking for space to support your health; keep your stress levels down as much as you can. Eat well (whatever ‘well’ means for you), move around if it’s available, drink a bit less, and breathe. Always breathe.

3. BONUS TIP! Tell people what’s happening. Tell your friends, your partner, your children (if they’re old enough to understand), your parents, your siblings: let them know you have a condition but it’s no big deal, and let them know you’ll tell them if it means you can’t do something. Believe me when I say: your friends and family are relieved to know you’re going to say ‘no’ when you can’t do something, even if it means changing your mind at the last second. They don’t want to be dithering about whether or not it’s safe to invite you in case it’s too draining for you: they’d much rather trust you to say yes/no based on your self experience.