1. Documentation Is Your Saving Grace
When I first became ill, before even seeing anyone who really helped me, I started what I now jokingly call “My Lime Bible”. It’s a green binder (I want to get a Lyme and tick photo to slip into the clear, plastic front cover….) that is sectioned off with pocket files, one for each doctor, specialist, dietician, or practitioner. I have a separate pocket for blood work results. I also have a pocket with general information about my health prior to my illness as well as monthly changes, positive or negative.
Additionally, I created a table in Word where I record daily my food and liquid intake, with measured amounts, as well as any reactions I had. I note exercise and daily supplements and amounts as well. I make hard copies of this to bring to appointments as needed. Sometimes this information changes, so it is important to note what date supplements were added or stopped as well as reactions that occurred.
I take a loose leaf notebook with me to every appointment, and put all my notes in the corresponding pocket. It’s impossible to remember every thing, so this is a quick way to help me and gives me a system to check back if I need to.
I keep a post it note with the name, address, and phone number of the specialist on the front of each pocket for easy reference as well. This was especially helpful for me when I had to go see a neurologist and was having difficulty reaching the office over the phone with the number they gave me. When they called me on a different line, I jotted that number down as well.
Little things like this help streamline my treatment and make it easier to share my complex history with new practitioners.
2. Know And Listen To Your Body
When you are struck with a chronic illness, your body has amazing ways to tell you when something is or isn’t good for you. Learn to listen to your body and respond. Back to back activities for me right now is a recipe for disaster, so I have learned to really pace what extra activities I can do. I’ve come to realize my health is more imporant right now than being sure that I attend every family get togther.
If you feel tired, say not to family and friends.
Even if you anticipate being tired, say no to friends and family.
Leave from events early if you need to.
Eat and drink what and when you should to avoid getting more tired than necessary.
Get at least 8 hours of sleep a night; 10 hours is best.
3. Brain Fog Strategies
I was so distressed early on when I realized that my brain wasn’t functioning like normal. I was used to having a ‘ticker tape’ running in my head of things I needed to accomplish each day, especially on the weekends. Now, I realize that is just not a good option for me anymore.
Instead, I use little strategies to help me remember things:
Stay in one area of the house to complete a task before leaving the room. Many a lunch was left unfinished before I started doing this!
Use post-it notes for reminders like : switch the laundry or empty the dishwasher. Display them in a prominent place where they will likely be seen.
Tape invitations next to the calendar as well as write the information down on the corresponding date.
If your store offers this service, order groceries on-line and have them delivered or picked up when scheduled. This both a time and energy saver for me. The store I use also saves my favorites and my last order, so I always go to those sections of the website first to see what I need before adding new items. This helps me remember to order staples like milk or eggs, which I may have in my head to do, but oftentimes, I’ll forget, because I get sidetracked looking up other items.
Write due dates for library books right on the calendar.
Focus and tackle one small cleaning job at a time if you feel up to it. Starting two or three is too taxing on the memory and the body.
4. Food Can Be Your Best Friend Or Your Worst Enemy
Remember my Lyme Bible? Over time, I was able to see what foods caused what reactions in my body. It was so disheartening to me to find out that I was having issues with almost every part of the food pyramid: dairy, carbohydrates, fruits, nuts, and nightshade vegetables. But I’d never know this if I didn’t keep a food journal on the advice of my naturopath and dietician.
Just as an example, I was drinking lemon water for the longest time, thinking that it was a healthy way to detox my body. One day it dawned on me that lemon was a fruit, and that was probably why I was experiencing a light stinging sensation over my whole body! Sure enough, once I just switched to regular water, the stinging subsided. I felt even better once I started adding green tea into my diet.
Becoming a label reader was really important for me. I read many posts about Lyme warriors eating gluten-free processed products because they are staying away from wheat, and I cringe inside. Gluten-free doesn’t mean sugar-free. In fact, if you start to read and compare labels, you will see that many gluten-free products have just as much sugar as regular wheat produced products! You are just feeding your little Lyme friends by eating gluten-free processed food products like breads, cereals, and crackers.
A few guidelines that have helped me:
Stick to eating whole foods, not packaged or processed foods.
Cook in olive oil.
Drink only water or tea that you brew. I drink 40 oz of water and/or green tea per meal, and another 10-16 oz in between meals to total close to 100 oz or more of fluids a day. The green tea seems to help me greatly with inflammation.
Eat at least 4 – 6 oz of protein for each large meal to help sustain cravings and maintain energy levels. I typically eat 5-8 oz of protein.
Use supplements that are made out of whole foods and not synthetic compounds. Talk to an experienced holistic practitioner or naturopath about the important difference between the two.
5. Reach out and Touch Somebody’s Hand
The best information I received about how to heal wasn’t from anyone with an MD after his or her name, it was from people who went through Lyme, are going through it, or know someone with Lyme. Also, natural practitioners and a dietician helped me greatly. Don’t try to re-invent the wheel. There is so much information out there, you need to work smarter, not harder, when you have Lyme.
Ask friends and family whom they recommend for a naturopath, holistic practitioner, dietician, or LLMD.
Research all natural cleaning products, shampoos, and body cleansers, toothpastes, etc. to find ways to limit more outside toxins entering into your body. Some companies will send you free samples to try if you ask! Dr. Bronner’s sent me free many free samples of their products, and I’ve discovered what compounds from their line my skin can tolerate as well as which ones aren’t safe for me.
Keep in touch with family, friends, and co-workers either on the phone or by email. These little connections can help you to keep a positive attitude even on a bad day.
Send cards to friends and family via snail mail. It’s nice to receive letters from people, and it’s equally as nice to send them out, too!
And never stop learning. Your health depends on it.