MY LIFE: 5 ways I keep cool in the summer

Anyone with a chronic illness knows a common symptom is the “constant fever” and inability to regulate your own temperature. So while we suffer in the cold, the summer isn’t always a picnic either. What to do to ward off a flare because of the heat?

Here’s what I use/do:

1. A cooling towel – This is the one I use. It’s only $7.99 (at time of post publication) and it works quite well. Especially at night, I’ll put it on the parts of me I just can’t cool down enough to sleep. I rarely have to re-wet it, but if I do, it’s no biggie. Just run it under cold water, wring out, and voila! I most often put it around the back of my neck, on my forearms, and on my lower legs/feet, but your mileage may vary.
2. Drinking enough – Nothing complicates heat problems faster than being dehydrated. I drink water – infused or just plain, Bai5, Diet Raspberry Snapple, and, I admit, Pepsi. I know, I know. Caffeine and sugar: bad. But I’ve got bigger fish to fry than beating myself up for drinking a Pepsi every day or two.
3. Ceiling fan – Worth its weight in gold. If nothing else, it keeps the air moving, which seems to help keep me cooler. I actually use mine year-round since I’m so hot in bed no matter the season.
4. Keep using my crockpot – For some reason, many people equate the crockpot with winter, but it’s a godsend in the summer since it doesn’t heat up your kitchen. We all know crockpot cooking rocks – it’s so easy, and if you’re wilting in the summer heat, pull out your crockpot rather than using your range.
5. Loose, breathable clothing – I wear a lot of capris and sundresses in the summer. If I’m inside, alone, I often wear only a long t-shirt. Why wear more than I have to if no one is going to see me anyway?

This is a very basic list. There are lots of other things you can try – cooling pillows, portable fans, bandanas, and more. What do you use? Tell me in the comments!

MY LIFE: Living in pain and how I do it

Everyone has special things they find helpful when they have really bad days, and chronic illness warriors are no different, except that we have more bad days. So how do I and others survive? Several ways…with a hat tip to Chronic Mom.

Heating Pad

My heating pad is practically my best friend. Even in the middle of the summer heat I’m still attached to it. I have tried every brand of heating pad imaginable because they rarely last me more than three or four months. So far the best one I’ve found is a Sunbeam king-sized pad, which I reviewed here.

The plug comes out on occasion which really annoys me, but it doesn’t have a cover that falls off all the time, and it’s lasted the longest out of all the ones I’ve tried. Its size makes it easy for me to soothe more than one area at a time, too, which is a huge bonus.

Epsom Salts

Epsom salt baths are my lifeline. I initially didn’t believe they did anything because there is very little science behind the idea. When my muscles are really sore it helps to soak in a hot bath with epsom salts by Dr Teals and baking soda (for detox purposes). It doesn’t fix everything, but it does seem to reduce the muscle pain.

Pillows

At the moment I sleep with three pillows, one for my head, one for my arms so I don’t curl up into myself too much, and one for my legs. I’d like one of those cooling pillows, but it remains on my wish list for now.

Snacks

My husband bought me two of these fabric containers to contain the snacks I keep in my bedroom. Even when I feel really crappy, I can roll over there and pluck out something to eat. We all know the dual problem of nausea from not eating and then nausea from eating, but we also know we have to keep eating.

In order to make sure I have good snacks, I keep things like Mary’s Gone Crackers Super Seed crackers (review here), Planter’s cashews, Bai5 flavored water and my favorite chocolate, for when I really can’t face anything else.

Roku

Roku has been a lifesaver. We have Netflix, Hulu, Amazon Prime Video, and a couple of other channels, and that’s all I need. On days when I feel crummy, I can either turn on an old favorite like Pride and Prejudice or Clueless, or find a new show to binge watch. I did a review of Roku here if you’re interested.

What are your favorite things to keep you going when you’re having a tough time? Tell me in the comments!

MY LIFE: 5 things I do when I just can’t…

Courtesy Creative Commons

We all have days where at some point we throw up our hands and just mumble (or scream) “I just can’t…”. We’re not being dramatic – those of us who battle chronic pain and illness are already so much behind the eight-ball that even everyday stressors can have a big impact. When we have a day where everything goes wrong, sometimes it seems easier to just give up. But there are things we can do. Here are five of my coping methods:

1. Get away from other people: When I’m in this mindset, I am not good company. I yell at my child (though sometimes, like today, she deserves it), I snap at telemarketers who are unlucky enough that I actually picked up the phone, and generally I am a cranky, um, witch. So I afford myself a strategic retreat.
2. Eat or drink something, anything: I know sometimes when I have a bad day, food and drink just do not sound appealing. But I need to eat. We all do. So at times like this I search for something I can handle, even if it’s not good for me. Eating something unhealthy is better than not eating at all, at least in my opinion.
3. Find a distraction: Right now I’m watching Foyle’s War, a 9-season British TV show (only 3-5 episodes per season, but they’re each like 90 minutes long) set during WWII and just after. I like historical stuff, and I love British TV shows. After that I might go back to documentaries. Love those too and I have a bunch lined up in my various queues.
4. Do something relaxing: Put on your Himalayan salt lamp, essential oil diffuser, run a bath, use your markers to color, or whatever else serves to relax you. Hell, do all of them. I do!
5. Spend some “stupid time”: Do you like watching cat videos? Endless fanvids from your favorite TV shows? Doesn’t matter what it is, if you laugh or your mood lifts, these things have done their jobs.

What things do you do to fix a crappy day?

MY LIFE: The concept of mindfulness & why it annoys me

I think we all have days where this is the primary expression we wear. Then we see something like this:

Courtesy Stonybrook.edu

Now let’s think about what happens when you take this advice…

1. You turn your focus to what’s going on at that moment.
2. The pain, the fatigue, the stigma, etc are your current reality.
3. Unless you stop being mindful, you’re now trapped in a not-so-fun situation that you spend a lot of time trying to overcome.
4. Vicious circle.

You might disagree with me. Maybe mindfulness works for you. But I think by and large that anyone who lives with chronic pain and illness as a major part of their daily life does not want to be mindful, because then they feel everything.

I’m not saying to never be mindful. There are times when it’s great, like when you’re having fun or if you’re having a good day. But if you’re having a crummy day, deal with it as best you can. Don’t let anyone else tell you how to cope.

MY LIFE: Ways to make your partner understand so you can have a happy Valentine’s Day

Since we’re all busy on this finest of holidays, I thought I’d summarize what you need to know and what you can tell your loved one about your life. I hope these snippets help you get the conversation started, and Happy Valentine’s Day!

every day is not the same

pain affects our day to day energy

we hate how our pain affects our lives; and yours

it upsets us that our life isn’t like other people we know

we still need romance

valentine’s day doesn’t have to be epic

tell us we’re not a burden and that you love us

MY LIFE: 10 Things I need to remind myself to stop doing

Every chronic illness warrior makes mistakes. Most of us make some over and over. I definitely do. Old habits are hard to break, right? But for our health, we need to. What are some of these mistakes?

1. Not pacing: This may be the biggest thing I do wrong. And I don’t think I’m the only one. When I feel good, I do stuff. It’s natural. But even then, I need to realize that preserving some energy is a good idea. After all, none of us know when the tide will turn and we’ll be flaring.
2. Criticizing: No, not my family. Not my friends. Myself. How many of us beat ourselves up when we can’t do what we want? When we can’t be the perfect parent we want to be?
3. Blaming: This is related to #2. After I criticize myself, I start to blame myself for my perceived shortcomings. Sure, I have fibromyalgia and chronic fatigue syndrome, plus hypothyroidism, asthma, and bad back and neck injuries. But I should still be able to DO IT ALL, and if I can’t, it’s my own fault.
4. Believing other people: Or what you think other people are saying or feeling about you. I think we all put words in other people’s mouths; things that we deflect from them onto ourselves. Resist the urge to decide other people are right.
5. Too much hope: Now, this one probably sounds crazy, but hear me out. Let’s say you’re starting a new treatment. Don’t get too excited until you know it’s helping. If you put too much into it and the treatment turns out to be a dud for you, how heartbroken will you be?
6. Too little hope: Yes, this is bad too. Don’t get so down about treatments and medicines that you stop trying things. How are you going to help your symptoms if you don’t go after new ways to treat your chronic illness?
7. Not prioritizing yourself: It sounds selfish, but it’s crucial for you to make absolutely sure that you’re taking care of yourself, both physically and mentally. If you don’t, you’ll regret it later.
8. No patience: You need to give treatments and lifestyle changes time to work. If you don’t, you’ll hop from treatment to treatment without any satisfaction.
9. Getting overwhelmed: We all know our lives carry a tremendous amount of stress. Even if you’re not battling a chronic illness, stress is all around you. But letting this stress get to you when you ARE battling a chronic illness can make things far more difficult. It’s harder to manage your symptoms.
10. Letting the “whys” win: We all want to know why this happened to us. What did we do to deserve a chronic illness? Sure, acknowledge it, but don’t allow yourself to wallow in the whys.

Do you have anything you need to stop doing that I didn’t mention?

MY LIFE: Coping with colds when you battle a chronic illness

I doubt any of us even looks this happy when we have a cold (or another common illness) on top of whatever else we battle on a daily basis. But even with our messed up immune systems, there are things we can do to mitigate our symptoms. I recently wrote a blog post about a product you can take, Sambucol, which has helped me when I have a cold. This is only one avenue, though. What are some other tips?

REST. Yes, I know we all rest. We have to. But now is not the time to be a hero. Colds and other temporary illnesses can be a huge thing for warriors like us, and we need to take them seriously, more seriously than other people do.

MAKE YOUR ENVIRONMENT AS CONDUCIVE TO HEALING AS POSSIBLE. This means being in your most comfortable place, even if it means you stay in bed for a week. It means you banish anything that might make you sicker, like your children. I know that sounds callous, but, at least to a certain degree, necessary. I allow my daughter to come in and see me for short periods, but not for long.

USE ANY PRODUCTS YOU BELIEVE IN. I’m not a big fan of commercial cold medicines like DayQuil, but there is a time and place for them, particularly if you have to do something despite being sick. If you can avoid using them, all the better. Sambucol is an example of a product that you should be taking if you have a cold. Airborne, OnGuard beadlets, and other immune-boosting products are your friends right now.

TRY NON-TRADITIONAL REMEDIES. As I mentioned, I’m sick right now. Looking around my bedroom, where I am resting in my bed (see what I did there?), I can see all the ways I’m trying to kick this cold. My Himalayan salt lamp is on full-bore, I’m diffusing a combination of oregano, marjoram, Breathe, and OnGuard essential oils. I have an OnGuard roll-on bottle and a blend I made myself for immune boosting.

Here are some recipes for roll-on bottle blends for illnesses:

Just in case you can’t read the teeny-tiny writing on the bottles, here’s the recipe:
5 drops Frankincense
5 drops Oregano
10 drops Lemon
10 drops Melaleuca
10 drops OnGuard
Top with carrier oil of your choice in a 10ml rollerball. Roll on the bottom of the feet frequently.

EAT AND DRINK. You know that whole, feed a cold, starve a fever? Well, I don’t know how true that is, but I try to make sure I keep eating and drinking when I have a cold. Nausea is a whole different ballgame, but as long as the major symptoms coincide with that of a cold, keep something in your stomach. I tend to graze, since my appetite isn’t great on a good day. Right now, I’ve got a Bai5 that I’ve dumped two scoops of Doctor’s Best D-Ribose into. You can’t taste it and it seems to help with the whole energy sucking part of fibromyalgia.

That’s all I can come up with for now. If you have other tips, tell me in the comments!

MY LIFE: Things to do with your kids when you’re all cooped up

My daughter is home on holiday break right now and I’m battling this very issue. I figured if I am, surely I’m not alone. I did some brainstorming with my daughter and came up with some ideas we thought might work. We’ve done many of these, in fact.

1. Anything art-related like painting or coloring. You can use gel pens and an adult coloring book, your kids can go nuts with their crayons and some scrap paper or a coloring book made for children. Or, if your child is like mine, she’ll want to color in the adult coloring book too! For painting, watercolors probably work best and are the most forgiving, both in terms of how they work and what they might do to your clothing and the area surrounding you.
2. Reading together. If your children enjoy it and will stick around in one place, try reading together. Take turns so you’re not using all your energy. But with what energy you have, your children will really appreciate it if you go to the trouble of sound effects, funny voices, etc.
3. Putting together a puzzle. You definitely don’t have to spend a lot of money to get some cool puzzles. They’ve gone out of vogue, so you can find tons at thrift shops and other discount stores. Just make sure it’s easy enough that your children won’t get discouraged.
4. Musical or athletic performances. Here’s one where you can simply watch most of the time. Our children love performing for us, so when you’re not feeling well, tell them you want to see what they can do. My daughter is a competitive gymnast and jumps at the chance to show me her new skills.
5. Take a walk around the block with a list of things to find. Make a quick list of items commonly — or less commonly so they have to work a little harder — found in your neighborhood. I often use things like a pinecone, a cat in a window, a red door, and silly things like lawn gnomes and skateboards.
6. Boardgames. I think sometimes we rely too much on videogames and other electronic stimulation to entertain ourselves and our children. Why not go back to basics? You can find a lot of classic games at thrift and discount stores. Think Monopoly (or Monopoly Junior if your kids are younger), Clue, Sorry, Chutes and Ladders, even Trivial Pursuit if you think your kids can handle it. Card games fall under this same general category.
7. Pretend games. Do your children like to run schools, a cafe, or a hospital? You’re the customer, so you stay in one place, while they dress up and run back and forth providing the pretend customer service.
8. Blocks/Tinker Toys/Legos. Anything you can use to build stuff can take up a bunch of time and not demand too much energy from you. Let your kids go nuts making entire cities. Yes, there’s more clean up, but if you have bins, just shove it all in one of those when you’re done.
9. Indoor playgrounds. Chuck E Cheese or anywhere else you can trust your child in without worrying if they’re out of sight for a bit is a godsend when you don’t feel well. Some places are better than others, but most average to large cities offer multiple choices.
10. Pillow and blanket forts. Let your children build while you lay around, supported by extra pillows and blankets. Kids love making forts and though you may have to help with design so the whole thing doesn’t collapse, overall it should be a good time for you to rest while still entertaining the kids.
11. Tell stories. What child doesn’t like to hear about themselves as babies? Or about you when you were their age? If those ideas don’t work, try making stuff up. Do it yourself or as a collaboration with the kids. Write it down if you want. Illustrate it. Get your kids to bring you props for the story. It will get them moving!
12. Write letters. Whether you do on email or with paper, a lot of kids will get a kick out of crafting a letter to someone like a grandparent. A bonus is that the grandparent gets the benefit too, when they receive the letter or note. Many older people are lonely and this is a great way to keep them connected.
13. Homemade Pictionary. All you need is crayons/colored pencils/markers, and paper. Having something to prop up the paper on is even better. Take turns drawing and guessing.
14. Activity games (for them). Anything where you’re the boss works. Red light/green light, Simon, and tons of other games can be played with you in bed or on the couch.

Do you have other ideas that work for you? Tell me in the comments!

Just wanted to take a moment to thank all of you for coming on this journey with me. I’m truly honored you trust me to help you live your best life. Here’s to a great 2017!

MY LIFE: Coping with winter weather when you have a chronic illness

Ah, cold, snow, wind…all enemies of the chronic illness warrior. So what can you do to fight back? Here are a couple of things I’ve found that work.

I’m always hot, so even in the winter weather I don’t wear tons of clothes. This works well with the sensitivity issue some of us struggle with, since the clothes aren’t heavy. But on the other hand, letting yourself get cold won’t do! So lots of gloves, wraps, and other things that are easy to transport and layer are my go-to’s. I have wrist warmers, fingerless gloves, light wraps, heavier wraps, and I use them all.

During the wintertime, especially, I avoid driving at night. I also avoid driving when it’s snowing. My vision gets distorted at night, and damp nights are even worse. Trying to navigate through snow can be a challenge for chronic illness warriors, though, and I prefer to stay home. I have migraines as part of my illness, and the effort it takes to see through all the distractions really takes a toll on me.

Also during cold weather I increase the number of baths I take. About once a week I do a detox bath with baking soda and epsom salts or magnesium flakes, and just a regular bath the rest of the time. I find this keeps my muscles happier and less likely to seize up. Additionally, it’s easier for me to fall asleep after a bath.

One of the biggest causes of depression in chronic illness warriors is lack of Vitamin D and sunlight. You can use a lightbox or other specially-designed light to simulate sunlight. I have one of these but I use it sparingly since it’s SO BRIGHT. I also up my Vitamin D supplements to offset the lesser amount I’m getting from the sun.

With all the social functions and holidays over the fall/winter, you might feel pressure to offer to host, etc. Resist that guilty feeling. You don’t have to prove you can do anything, and if having Thanksgiving at your house is going to throw you into a week-long flare, it’s not worth it. If you must be the one hosting, try to get people to bring food and don’t worry about cleaning your house. Throw stuff in closets. Call in reinforcements – this is a time for your family to shoulder the load.

Don’t try to walk outside. One of my favorite ways to exercise in decent weather is simply a stroll around the block. But especially those of us who are weather sensitive need to be careful about how much we’re exposing ourselves to the elements. Plus, how much would it suck to slip on slick roads and sidewalks?

Lastly, this may seem selfish and hard to do, but try try try to stay away from sick people. When chronic illness warriors get sick, it’s a big deal. I just got over a cold that, of course, turned into a sinus infection. All told I was sick for about two weeks. And when I’m not feeling well, on top of regular not feeling well, it’s game over. Of course, this illness coincided with Christmas. You may need to increase the amount of immune-boosting supplements you take, or diffuse one of the many essential oil offerings to help your immune system fight off the bugs.

Those are my major strategies for winter weather. What are yours? Tell me in the comments!