Although I’ve been chronically ill my whole life, this was my first year entering the online chronic illness community. You have all been a blessing to me and helped me so much with my “spoonie” status. Thanks to you guys, and my new tablet with voice recognition software, I intend to be much more involved in the online chronic illness community, and to be more active on this blog in 2014.
I also decided to make a few “health resolutions” this year. Many people make resolutions to lose weight, or get healthy, and that’s fine, but I’ve always found these resolutions vague and hard to follow. I decided to make a few targeted resolutions, and make myself a list of ways I could follow them. Hopefully this will keep me from being disappointed at the end of the year when I look back at the progress I’ve made!
This year, my resolutions are:
1. Get involved with online patient advocacy.
The plan of action: be more active on this blog, attend more twitter chats, continue to be active on tumblr, twitter, and inspire.
2. Eat better.
The plan of action: since so many foods make me sick, it’s easy to slip up in a flare or at a restaurant and get something easy or quick or comforting, only to get sick/sicker later. This year I plan to make safe foods when I’m feeling up to it, and not cheat on my food intolerances/allergies/celiac.
3. Spend “illness free time” with my fiance and family.
The plan of action: It’s easy for J and the family to get caught up feeling like my caregivers instead of my family. By recognizing my limits more, and respecting them, I can (hopefully) spend more time with my family that doesn’t revolve around my illness.
What are your New Year’s resolutions? Are they affected by your illnesses or conditions?
When you first find out you have an illness that has “triggers,” it can be really overwhelming. Whether it’s IBS, chronic migraines, asthma, or something else altogether, the first thing you do after being diagnosed- if you’re anything like me- is start googling all the things that can trigger you. It gets overwhelming fast. At first glance, it looks like anything can trigger a migraine, or a fibro flare. But that’s not exactly true.
The truth is, you have to find what works for you. Maybe you do have some common triggers, like wheat or stress. But you might also have some off-the-wall triggers. For example, two of my triggers are wearing scarves and having long hair!
If you’re newly diagnosed, don’t get stressed out trying to avoid everything on a list you’ve found. Take it one step at a time. Remember that some triggers won’t always cause the same reaction, and sometimes may not cause a reaction at all. Remember that your triggers can change. And most importantly, remember that you know your body better than anyone else. If you think that your purple tie-dye bed sheets are the problem, try finding out!
If you’re not newly diagnosed, then this still might be a pertinent reminder. It’s easy for me to get frustrated when something that has never caused a migraine or a flare before suddenly starts giving me horrible vertigo and hives. It’s easy to get frustrated when I can’t pin down what’s caused a constant migraine for three months. In times like these, I have to remind myself that I will take my illness one step at a time. I will find out my new trigger. I will get past this flare. I will continue tracking my symptoms in relation to white cherry powerade consumption and pray that my favorite source of hydration isn’t causing my misery. Being chronically ill is tough, but I am tougher.
How do you feel about trigger lists? Do you have any weird triggers? Do you use a migraine tracking app?
Winter brings a special set of health woes. That’s why, every winter, I make myself a “Winter Wellness” box. I include lots of things I’ll need to stay healthy over the cold winter months, and a few treats for when the gloom and grey get me down!
As someone with Classical Ehlers Danlos, I have to take special care of my skin during the winter, when it’s even more prone to dryness and injury. For my lips, I use Vaseline Lip Therapy. It keeps moisture in, and the taste and texture keep me from licking my lips. I haven’t had any problems with dryness since I started using it. I also use Vaseline lotion, but you can use any kind- here I have Bodycology Vanilla Sugar, which smells festive.
Pain can also increase in the winter, so I always include some pain-relieving bath soak and a cooling eye mask. The cooling eye mask is great for migraines, puffy eyes, and dark circles. I found mine at Dollar Tree.
I put squeeze applesauce in my box, along with powerade, which is great for intense rehydration. As many viruses go around in the winter, it’s better to be safe than sorry. I also stuck a gluten free baking guide in my box, because cold, rainy days are perfect for working on your hobby. Mine is cake decorating!
Finally, as a treat, I have some comfy cat pajamas.
What would you include in your winter wellness pack?
My mom has been my biggest supporter since going gluten free. She’s tried my fake breads, suffered through my trial and error with corn pasta, and always tries to make sure I have at least something gluten free to eat whenever I visit her. She also keeps her house stocked with water for me to hydrate with while I’m visiting, even though she’d much rather be sipping Diet Mountain Dew. Today, when I called her in hysterics because I’d ruined the can soup I had spent hours saving the energy to make, she whipped up some corn pasta and pesto without thinking twice. This isn’t just a mom appreciation post, although I could go on for a while about how great and supportive she is. My mom also has a blog, and she shares her gluten free creations- the ones that turn out well, at least- and I’m going to share a few of them with you.
Toffee Almond Fudge (Remove almonds and it is also nut free.)
Chocolate Peanut Butter Bread (can substitute chocolate almond butter/almond cups for peanut allergy)
Mexican Corn Bread
Butternut Squash Soup (substitute veggie broth for beef broth to make vegetarian)
If you like these, check out her blog The Thrifty Things for more.
Do you adapt normal recipes to be gluten free, or do you make naturally gluten free recipes? Do you have a supportive family?
One of the hardest things about dysautonomia is the need to consume both large amounts of water and large amounts of salt. At first, being able to eat all the salt you want can seem like a dream come true. Unfortunately, I’ve found that after your 147th bag of Lay’s Potato Chips, it starts to grow old. Water and Powerade grow old just as, if not more, quickly. I’ve spent more time trying to think of ways to make my water and salt intake more interesting than I’ve actually spent hydrating and eating salt. Here are a few of the tricks I’ve found:
- Add fruit to your water. Fresh fruit or a bit of fruit juice works best. A few of my favorites are pineapple, lime, and lemon, but the possibilities are practically endless.
- Just eat fruit. There are a lot of fruits and vegetables with a high water content. Sometimes when I can’t stomach the thought of drinking another glass of water, a slice of watermelon or a few chunks of pineapple are a nice option.
- Drink water at room temperature. Yeah, it sounds gross, and it kind of is. But room temperature water is much easier to drink than ice cold water, and you don’t risk a brain freeze.
- Herbal water is excellent. Spas were really onto something here. Adding a few sprigs or mint or some fresh ginger to a glass of water is a good way to change up the flavor. Herbs and fruit also go well together. A little lime and a little mint, and you’ve got a sad, sugar free, non-alcoholic, watery mojito.
- Freeze fruit juice as ice cubes and use in your water. This way, your water is slowly infused with the fruit of your choosing, without losing flavor as your ice melts.
As for salt, there’s the usual: eat pretzels. eat potato chips. eat everything of the “thirty saltiest foods in America” list from Men’s Health. (Not that I wait for the annual “saltiest” list as a guideline for my consumption, or anything.) There’s also pickles, but everyone could have guessed that. But what do you do when these get too routine?
- Mashed potatoes taste good even with lots of extra salt added. This is good because you can salt your own portion, rather than adding salt to the communal dish and accidentally giving your fiance hypertension. (Hey, I said sorry.)
- V8 has lots of salt, if you can stand the taste. If not, try canned tomato soup…or any canned soup!
- Cottage cheese also tastes good with lots of salt. Don’t like cottage cheese? Most packaged cheeses are pretty salty, so you’re in luck.
- Lunch meat. As a celiac, I eat a lot of gluten free lunch meat “wraps”, which consist of a slice of turkey and a slice of cheese wrapped around a pickle. One of these for lunch usually keeps me upright for at least ten minutes.
- If you can tolerate it, you can always take salt tablets.
Remember that how much sodium something has in it is not how much salt it has in it! You have to multiply the grams of sodium by 2.5 to figure out how much salt you’re eating. Obviously, talk to your doctor before you try salt loading, because you may also need to take potassium, and only you and your doctor can determine how much salt you need a day.