I wrote this article for The Mighty Site to share my favourite hard learned tips and tricks on how to adjust and live with Chronic Illness for those who are newly diagnosed:
If you are reading this and have been newly diagnosed with a chronic illness, you may feel overwhelmed with how much there is to learn and adapt to so that you can feel like you are able to keep getting by.
These things you may be trying as you adjust to them. Maybe they’re skills you once considered easy, but that have now become difficult as you have chronic illness. Maybe you have to adapt the way you go about life and re-think how you use your energy. Sometimes it is about getting your illness in order and strategizing the best way to live with it, so that you can go about your life as best you can.
When I was diagnosed with lupus, I remember feeling lost while not knowing what I could do to improve my situation – especially because it seemed hopeless, like there was so little that I could do. Learning the “tricks” to get by took so much trial and error.
There were so many things that I felt like I needed to know in order to get by with having a chronic illness –and these things took time to learn. It was a learn as you go situation, and chronic illness is hard enough without that.
That’s why I’m passing on some of the things that I have learned that have helped me get by, so you don’t have to learn the hard way.
1. Carry meds with you at all times for everything you tend to experience. This way you can be prepared and so that these things don’t have to be such a problem.
You’ll feel like a walking pharmacy at first, but it’ll help. You’ll be able to tackle more stuff if you don’t have certain side effects and symptoms all interfering with things when you’re in thought process such as, “I have an exam to write – can you not?” It’s better to be prepared than not, right?
And, yeah, some days this won’t help and you’ll just feel sicker. But other days, it makes a difference! And anything that helps a bit counts.
2. Keep a list of your doctor’s names, your allergies, diagnosis, insurance info, and your meds on your fridge. Or keep them in another easy to locate place, so that in case of an emergency, they are easy to access.
3. Make sure to carry the information listed on the point above on you as well, at all times. Keep it in your wallet, or somewhere on your phone. (But it’s not as helpful on your phone because if it’s locked, an emergency care person cannot reach the information.)
4. Have a good relationship with your pharmacist – you will be seeing them often. If you ever run out of meds and are in a bind, they may be able to give you some for a few days in-between prescription refills. Work with them! The pharmacist relationship is super important.
5. When traveling, pack a spare set of meds in your carry on, your handbag or on your person – and have enough to last you incase the set in your luggage gets lost. Also, I suggest to carry a letter from your doctor verifying your prescriptions in the event something happens and you need them filled.
6. It is generally good to always have spare meds on hand, incase you go into a flare and can’t get more or you can’t get to the pharmacy. In addition, know more about your pharmacy’s delivery system or scheduling times for medications and their policies around that. Know it inside and out. My pharmacy, for example, cuts off orders for medication deliveries at 3 p.m. If I need my pain meds to be delivered, then I have to be sure it is organized before three.
7. Adapt your wardrobe to your physical limitations and chronic pain. If you have fibro or arthritis in your hands and find zippers and buttons are too challenging, get pull overs instead.
8. Get easy open prescription bottles. The kind that have the screw off tops and are also arthritis meds are a conundrum that behooves me like no other. There are other ways to have your meds packaged, just ask your pharmacist.
9. Keep some frozen and canned food around the house in case you have a flare period where you can’t go out, are unwell, or mobility is tough and you can’t get to the store.
10. Do some research into online delivery for things you rely on, such as groceries, etc. Many places offer this for a small delivery charge and the same cost for food as you would pay in stores. This will save time and energy for you and may, as a result, save energy and prevent flares. It will also, more importantly, help during them.
11. Buy easy to open packaging of daily items that you frequently use. Laundry detergent pods, are one example, instead of that complicated plastic bin. This will save your hands.
12. Keep an “emergency” bag packed with items you would need in an emergency. Keep a list of people you can rely on for such a purpose, and make sure they know where your bag is. Let them know, too, that there is a list of your meds, allergies, and other information on the fridge. Your emergency contact person’s information should be on that list, too.
13. Have a “flare” or “bad day” box. Put all your favorite things into a box, or a basket, or whatever you want it to be. That way, when you have no energy at all and feel like total crap, it’s all there ready for you. It can be watching “The Notebook,” a chocolate bar, and a nice blanket or slippers, but keep it together in one place, and treat it with importance – like it has healing power. That way, when you pull it out, you feel the power of the box.
Most importantly: Have hope, have faith. It will get easier, it will better.