So here's some of the things I wish someone had told me when I was first diagnosed:
- In the words of the Hitchhiker's Guide to the Galaxy: Don't Panic. Yes, it it all seems scary, but there are ways to handle just about anything.
- Lupus can go in any number of directions - you can't predict what yours will do, so don't worry about the future, focus on what you can do now to care for yourself.
- Anything you can do for your overall health is a good idea - eat healthy food, get some exercise (gentle, don't push beyond your limits); get plenty of rest; keep track of your medication and take it at the right time.
- Learn to pace yourself. When you were well you might have been able to just push yourself to do those one or two extra things when you were tired. Now your energy is a limited commodity, and you need to budget carefully.
- Learn the difference between reliable information, and the disinformation that you will find available. As a general rule, any internet site with .gov in the address, or sites from recognised lupus organisations, will be reliable. Blogs (like this one) are about support and general awareness, and can help you feel less alone and less like you're the only one who has ever been through this, but don't use them as a basis for your medical decisions. Any site that recommends you disregard your doctor's advice, or suggests some strange alternative treatment, should be treated with suspicion.
- Remember that lupus is a disease that behaves in a huge variety of different ways. What happens to someone else will not necessarily happen to you. For some people, lupus is a mild inconvenience, and for others it is a struggle to survive. Instead of anticipating the worst, just make the best of the life you have today.
- If you need a nap, have a nap.
- If you have to stop work, or reduce your working hours, that does not make you "weak" or a "failure".
- If you have to ask for help, you're still not a failure.
- Some people will make judgements based on your appearance. You don't look sick so you mustn't be sick. You can try to educate them, but don't try to do more than your limits to please or appease them.
- You will have good days and bad days. Make the most of the good ones.
- Just as your body gets tired, your mind does too. Write things down. Especially if you have new symptoms/questions for your doctor (it's easy to forget when you get into the doctor's office.)
- You are not alone. There are about 17000 people in Australia with lupus. World-wide there are about 5 million of us. There are communities where people meet face-to-face and communities where people meet on-line. If you can't find an active group in your community, join an on-line one. (On the Lupus Links page, you'll find a number of lupus support pages on social media.)
- Your life has not ended. It might have changed a bit, but it is not over.
This post written as part of Wego Health's National Health Blog Post Month.
My newest book is Beside Still Waters. It's a book of some of my sermons and reflections on Christian Scripture. (When I'm not blogging about lupus, I'm a Christian minister. I have a theology degree and everything.)
It (and all my other books) is available from the publisher, Lulu. It's also available in Kindle Edition from Amazon.
Looking for any other items produced by people with lupus or other chronic illnesses? Take a look at the Lupus Business Directory. You will find some great Christmas gift ideas there.