MY LIFE: 6 things that are difficult for me because of chronic illness

MY LIFE: 6 things that are difficult for me because of chronic illness

Chronic Mom had a great blog post the other day, and I totally agreed with it, so I’ve revisited the material here. What are some other things that healthy people take for granted?

  1. Cleaning

When your body isn’t functioning well cleaning is exhausting, so it isn’t unusual for someone with chronic illness to have a house that isn’t spotless.

2. Weather

Where I live the weather yo-yos back and forth so fast you practically get whiplash. While this is inconvenient for healthy people (it wreaks havoc on allergies), it’s even harder when you live with pain. My pain levels are always higher when the weather does this. Many chronic illness warriors struggle with winter and lower temperatures.

3. Getting ready for the day

I often tell my husband that getting ready to go somewhere is worse than actually going somewhere. There are lots of social rules I feel obligated to follow. Just a few examples of the basic tasks that can be daunting to someone with chronic illness: showering, blow drying hair, putting on makeup, and wearing socially acceptable clothes that don’t make the pain worse.

4. Regular sickness

For healthy people getting a cold is miserable, for people with chronic illness it can take over your life for weeks, even months. When you’re barely functioning as it is, additional sickness can knock you out completely.

5. Driving

A normal everyday task that most people take for granted. When you have a chronic illness, driving can be agonizing if you are forced into an uncomfortable position, and can cause vertigo if you suffer from it.

6. Going shopping

Very few people like going to the store, but for someone with chronic illness it’s exhausting. Not only does it involve getting ready, but parking and walking to the store, walking around the store, dealing with the bright lights, bending over to get things from shelves, carrying heavy groceries etc.

 

Life isn’t easy for chronic illness warriors, and we’re doing the best we can. What are some ways you make life easier to deal with? Tell me in the comments!

RECIPES: Fibro-friendly snacks (other chronic illness warriors will love these too!)

RECIPES: Fibro-friendly snacks (other chronic illness warriors will love these too!)

Photo courtesy of Creative Commons, used with permission, photo by swong

It’s sometimes hard to find Paleo-compliant snacks, and yet we’re told we should eat smaller meals throughout the day rather than three bigger meals. What’s a chronic illness warrior to do? I’ve got some ideas!

Mixed Nuts + Salami

A winning combination. Really good for the afternoon slump when you need a bit of protein to power through. You have to make sure you find compliant salami.

Banana Apple Almond Butter Bowl

This is one of my favorite combinations right now. It’s now become one of my go-to breakfasts. I cut up bananas and apples and drizzle almond butter on top.

Apples + Cinnamon

Another winning combo if your sweet tooth is ACTIVATED. The cinnamon brings the sweetness out in the apple.

Prosciutto + Fruit

Nuff said. I like prosciutto with apples more than cantaloupe. Sometimes I mix a bite with dried apricots and almonds.

Carrots + Almond Butter

For a zing, you can add cayenne if you want. Sounds weird but it’s actually good.

DIY Trail mix

We now keep a giant jar of trail mix on the container. It’s a a great way for me to grab a quick snack on the go.  I have a handful of trail mix and a banana for breakfast when I’m too busy to sit down.

Hardboiled Eggs + Bacon Bits

I totally forgot about hard-boiled eggs this round of Whole30. Next time I am going to add more to salads. Especially with bacon bits.

Dried Fruit

I love the dried peaches & apples at Trader Joe’s. I love to end a meal with a few pieces. It’s like having a fruit roll-up.

Baked Sweet Potato Fries

For Whole 30/Paleo, sweet potatoes are preferred rather than traditional white potatoes to create a crispy, tasty fry that is much healthier than the traditional version.

Kale Chips

Here’s a snack that’s yummy, skinny and ultra healthy. You can either make your own or buy them – just be sure to check the label first to be sure it’s compliant.

 

RESOURCES: How to save on your grocery bill

RESOURCES: How to save on your grocery bill

Photo courtesy of Creative Commons, used with permission, photo by Stan

Show of hands – who loves grocery shopping? Even perfectly healthy people hate it, so yeah, us chronic illness warriors are generally not fans of slogging through stores every couple of days. Now, if you’ve been following this blog, you know there are many ways to limit those trips (let’s hear it for Prime Pantry and Subscribe n Save!), or at least, to have a smaller amount to buy.

1. Make a List

Always have a plan before you shop. Take a look at the weekly ads for your local stores and make a shopping list based on the specials. This will help you avoid impulse shopping and get you in and out of the store faster. And don’t forget to stick to the list.

2. Focus on Sale Items

Your list should always consist of at least a few sale items each week. Build your weekly meal plan around what is on sale. Many groceries go on sale on a rotating basis (every 6-12 weeks), so look for the sales, and stock up if you find an amazing deal.

3. Get a Rain Check

If the store is out of the advertised special, ask for a rain check. This will allow you to purchase the sale item, at the sale price, when it’s available again.

4. Research First, Then Plan Meals

After reviewing the weekly specials, add sale items to your grocery list then brainstorm or research some meals you can prepare with these items. By shopping first and planning your meals around what is on sale, you will save money on impulse purchases and avoid buying expensive ingredients that you may only need for one recipe.

Then, again, if you follow my blog you know about the wonder of make ahead/freezer meals. If not, check out this blog post and this one. I also have an entire Pinterest board devoted to make ahead/freezer meals: https://www.pinterest.com/booksbycasscarr/make-ahead-freezer-meals/

5. Don’t Shop Hungry

Hunger can cause you to have less self-control, leaving you vulnerable to impulse buys. Do yourself, and your wallet, a favor. Have a snack before you shop.

6. Sale = Stock Up

Stocking up on a sale item is always a good idea, especially canned, frozen or packaged foods. Stocking up on canned or frozen vegetables, rice and pasta means you always have sides in your pantry. Stock up on meats as well because you can freeze them to use for a later date. If you continually stock up on sale items, you can usually find a last minute dinner idea in your freezer or pantry without having to shop.

Find out what day your supermarket marks down their meat, since that will probably be one of your biggest expenses. Mine does on Thursday, so I try to go on Thursdays when I’m getting low on meat. Right now my freezer is stuffed with meat since there were so many great deals at Wegmans the last time I visited. Guess who’s making freezer meals tomorrow?

7. Purchase Store Brands

In most cases, store brands are of equal quality and quantity to name brand products, but a lot less expensive. In fact, often times, store brands are manufactured by the brands they are competing with. Store brand products are comparable or higher quality than the brand name, with different packaging. You can save big by choosing the generic choice.

8. Plan on Leftovers

Buy a larger amount of food and cook it all at once, planning to have leftovers that can be used for a future meal this week. For instance, a roasted chicken makes a great family dinner, but the leftover can be used for chicken salad or added to soup for lunch the next day. If you can cook once but have at least two meals, this will save you both time and money.

9. Look for Manager Specials

 Often times the manager will put items on sale that are close to their expiration date. If you are planning to use or freeze these items right away, these are great deals to take advantage of. Become familiar with the places in the store where manager’s specials can be found, and check them every time you shop.

10. Don’t Forget Your Rewards Card

 Most grocery stores offer a rewards card. If yours is one of them, make sure you have a card. Not only will you be able to get all sale prices, but you’ll most likely receive special coupons based on your purchases, as well as other bonuses like discounts for gas.

 

 

And a bonus…coupons and couponing apps! I’ll do a whole blog post about my favorites soon, but for now, here’s a list of the ones I use most often:
Coupons.com
Kellogg’s Family Rewards
P&G Everyday
SmartSource
Checkout 51
ibotta
Ebates

DISEASE MANAGEMENT: What to do when you hit a wall

DISEASE MANAGEMENT: What to do when you hit a wall

Photo courtesy of Creative Commons, used with permission, photo by Lee Haywood

 

I call the time right after you realize you’ve done too much but before you get hit with a full-fledged flare “hitting the wall”. We’ve all been there. So, what to do? With a hat tip to Grace Is Sufficient, here are some tips.

  1.  Remember you’re sick – not weak. Give yourself a break. You might have to throw out any type of to-do-list you had planned for today – and you know what? That’s okay! As long as everyone is kept alive (yourself included) think of today as a win. Having to call it quits for the day doesn’t mean you’re weak or lazy. It means you have a chronic illness and you’re doing the best you can each day. If you’ve hit the wall, you have already reached your best for today.
  2. Dump the guilt. There is always a part of us that feels like we aren’t measuring up. We want to be a better wife, mom, daughter, friend, co-worker, etc. Every person has their limitations – yours just came by way of a medical diagnosis.
  3. Rest. This may sound like a no-brainer to some or the-impossible to others. Based on our life demands, we may not think rest is an option. However, part of hitting the wall usually consists of depleted energy reserves. Allowing yourself to rest may mean the difference between hitting-the-wall today or ending up in a full blown flare tomorrow.
  4. Take a moment to think. Too often I’ve hit the wall only to remember I forgot to take my d-ribose, vitamins, or meds. You’d think by now that would be standard practice to me, but I find from time to time I lose my head and those things slip. Take a second to evaluate whether or not you’ve taken care of those necessities.
  5. Exercise some self-care. Now may be the perfect time to indulge in a hot bubble bath, listen to relaxing music, have a hot cup of tea or sit outdoors to soak in some vitamin D. Remember, self-care isn’t selfish.
  6. Nourish your body. Make sure you’re staying well hydrated. We can be slightly dehydrated without even knowing it, which adds to our fatigue. Be sure you’re eating healthy food. You’re body’s in need right now and although a plain hot dog bun and a can of cola is the easiest to grab, it’s not the best for your body. Try to eat something good, but if you absolutely can’t, just be sure you eat SOMETHING and don’t feel guilty about it. You can get back on track tomorrow.
  7. Nourish your soul. You might only have the energy to keep your ears open at this point. Jump over to a favorite blog that will encourage your heart – try CranberryTeaTime or RestMinistries for devotionals for the chronically ill. Listen to music, let Alexa read you a book (see the previous post about Alexa and how she can help you here).

These are only a few suggestions. If you have others, let me know in the comments!

 

MY LIFE: How Amazon’s Alexa has made my life easier

MY LIFE: How Amazon’s Alexa has made my life easier

There are two primary “Alexa” products, the Echo Dot…

And the full-sized Echo…

What are the differences?

The full-sized Echo is a 9-inch speaker that at first glance resembles a tube of Pringles. However, this unit is far more than just a speaker that can play all your favorite tunes from Pandora, Spotify, Prime Music, and more. It can easily become the smart controller for your entire home, connecting to smart lights (like Philips Hue), Nest thermostats, Samsung SmartThings, and much more.

It’s basically a smartphone search appliance without the screen. It can answer questions, read audiobooks, check traffic and weather updates, and essentially act as your voice-activated butler (aside from actually bringing you a snack, though you can use it to order pizza from Domino’s…).

In a somewhat creepy display of semi-AI, the Echo is always connected to Amazon’s Alexa network, which is in the cloud and always getting smarter. The more you use it, the more it learns your preferences, speech patterns, and vocabulary, to better deliver on what you’re asking for.

You’ll want the Echo if you want the total package. If you want a whole-home control center coupled with a decent speaker, then the Echo is your best choice. It’s an especially prudent choice if you already have your home rigged with smart devices. This one is designed to truly integrate with your home and therefore become a relatively permanent fixture. It comes in white and black and is $179.99.

The Echo Dot is essentially the Echo’s “Mini-Me.” It has a smaller, quieter speaker and, in size, is more akin to a hockey puck. It does everything the Echo does, but also has a 3.5mm output jack and Bluetooth connectivity, allowing you to connect it to your current sound system. Truly, it’s as though someone just decapitated the Echo and then scrunched up the full-size speaker and jammed it up into the neck, and boom, the Dot.

Connect to and control all of your smart home devices, as well as your existing audio set-up, making the Dot perhaps the most desirable of the Echo family, especially since it’s only $50.

Now that you know all about the Echo and the Echo Dot, let me introduce you to Alexa. Alexa is an intelligent personal assistant developed by Amazon and made popular by the Amazon Echo suite of products. It is capable of voice interaction, music playback, making to-do lists, setting alarms, streaming podcasts, playing audiobooks, and providing weather, traffic, and other real time information.

How can Echo and particularly Alexa help me manage my chronic illness?

The awesome Julie from one of my favorite blogs, Counting My Spoons, recently did a post about this. I took parts of that and added my own experiences.

1. Remind you about meds – if you take medications at certain times of the day you can ask Alexa to remind you to take your meds. Reminders can be set for a single time or daily. This can also be great if you are helping to care for someone who is ill. You may not be able to be there to remind them to take their meds, but you can ask Alexa to do it for you.

2. Keep up with your shopping list – How many times have you gotten to the store only to realize you left your list on the fridge? Now, instead of having the family write items on that magnetic notepad, you can have them ask Alexa to add items to your list. Then when you get to the store just open the Alexa app in your phone and the list will be right there.

3. Confirm your schedule – how many times have you completely forgotten about a doctor’s appointment? Alexa can be linked to your Google calendar and once done all you have to do is ask “Alexa What’s Up?” and she’ll tell give you your agenda for the day.

4. Stay Entertained – Sometimes you just don’t have the focus to watch TV or read a book, but Alexa will keep you entertained. She can read to you from whatever Kindle book you are currently enjoying, play your favorite podcasts or music, and there are even options for interactive stories.

5. Laugh a Little – Laughter is the best medicine, but sometimes there’s no one around to make you smile let alone laugh. But, Alexa always has a joke ready for you. Some of them are cringe-worthy, but even those are entertaining.

6. Meditate – There are several Alexa skills (aka apps) that will play a variety of meditations, allowing you get centered and focused throughout the day.

7. Order Meals – So many times when we live with chronic illness we find ourselves without the energy to cook a meal. When we are stuck at home alone this can be a problem. But, Alexa can help. Your options are dependent upon where you live, but at minimum you can order Domino’s pizza with nothing but the sound of your voice. (Now, if Alexa could just open the door, pay the pizza guy, and bring the pizza to your bed…)

8. Track Your Symptoms – with the “My Nurse Bot” skill enabled you can track your symptoms, get medication reminders, and track your appointments. It will even email you a health summary you can print it out and take to the doctor.

9. Get a Ride – You can easily use Alexa to call for an Uber or Lyft to get you to your Dr appointment, or well… anywhere you need to go. No need to be stuck at home.

10. Pay Your Bills – if you bank at Capitol One you can set up a skill to have Alexa pay bills for you. So, if you are like me and prefer not to have bills paid on the set schedule that banks typically want to set up, now you can just ask Alexa to pay your rent.

11. Keep Your Mind Active – No one around to play games with? Alexa can do that, too. Enable Jeopardy and you can play along or play alone.  There’s also a Spelling Bee skill to keep your spelling skills sharp.

12. Relax – Want to relax to the sound of rain on the rooftop, a summer storm, or ocean waves? Just tell Alexa to play the sound and she will turn it on so that you can tune the world out.

13. Exercise – You need to exercise but you don’t know what to do and you don’t want to spend a lot of time doing it? The 7-minute work-out skill is just one of the skills that will get you moving.

Have you begun using Alexa or other smart devices to make your life with chronic illness easier? If so, I’d love for you to share your tips and tricks in the comments below.

Only $49.99 and totally worth it!

RESOURCES: 5 tips for cooking with a chronic illness

RESOURCES: 5 tips for cooking with a chronic illness

Photo courtesy Creative Commons, used with permission; photo by baron valium.

This post was taken from the wonderful Ava Meena. I couldn’t have said it better, so when I started doing research for this post and found her words, I decided to use them pretty much as she presented them. Check out her blog here.

One of the most difficult things about living with chronic pain and illness is that life must go on no matter how terrible you feel.  We must eat, drink, and have shelter – these things are fundamental requirements for living. Yet, those of us that are chronically ill know that cooking with chronic pain can be extraordinarily difficult, especially if you also have dietary restrictions, suffer from appetite loss, or are trying to feed a family.

Tips for Cooking with Chronic Pain.

 

1 | Cook in batches.

So many recipes begin with the same instructions, such as “brown one pound of ground beef in a pan” or “boil and shred one pound of chicken breasts”.  The repetition of prepping meat for each meal has always driven me a bit nuts, but it was suddenly a huge energy drain after I became chronically ill.  Thanks to batch cooking, I have replaced that first instruction with simply thawing out my fully cooked meat the night before.

GROUND BEEF

To batch cook ground beef I spread it evenly in a deep pan, cover it with aluminum foil, and cook in the oven at 375˚F for 30 minutes (ish).  If you purchase high fat content meat you may want to use a rack inside the pan.  I cook meat in the oven instead of a pan because I don’t have to physically manipulate it (which results in joint pain) throughout the process to make sure it cooks evenly.

Once the meat has cooled, I strain it and set up my food processor.  I add approximately half a pound of meat to the food processor at a time and pulse it for just a few seconds.  This saves my hands from the manually chopping up the meat, since I like my ground beef to be finely crumbled.  I dump all of the meat into a large bowl, and then divide it into freezer bags with one pound in each bag.  I freeze them lying flat so that later I can easily stack them into bins in my freezer. ETA: If I’m doing freezer cooking, I’ll make the beef and the chicken the day before, or ask my spouse to do it, and then just pull it out of the fridge to put together the meals.

CHICKEN

I cook around four pounds of boneless skinless chicken breasts at a time in my crockpot for either six hours on high or ten hours on low. Either way, I plan for the chicken to be finished cooking around 6pm so that I can finish prepping before I get too tired in the evening. Once it’s done and cooled, I add two pieces of chicken at a time to a large bowl and use my hand mixer to shred it. Not only does this technique shred two chicken breasts in about 15 seconds, but I no longer have to use my fingers to manually shred. From there, I either divide the chicken into bags for later or use them in freezer meals I make that night.

 

 

 

I primarily batch cook chicken and ground beef because that’s what we eat most often.  However, there are plenty of other options out there such as batch cooking stew meat, pork, or pot roast.  Simply choose a few things that you eat frequently and optimize your own batch cooking method.

2| Make double portions.

For a long time I was sure that frozen meals wouldn’t taste very good.  I no longer had the luxury of feeling that way once I began cooking with chronic pain (fortunately, my freezer meals have tasted fine so far).  Now I double meals whenever I can and freeze half for later.  Prepping twice the ingredients doesn’t take much additional time or energy – just a bit of extra planning – in exchange for a huge reward.  I’m always thankful later in the month when I don’t have to cook as often.

But don’t just stick to doubling the obvious things, like spaghetti – keep looking for ways to get more done with less physical effort.  For example, I always create an extra batch of dry ingredients when I’m making banana bread waffles.  There are seven dry ingredients in that recipe, so it really cuts down on the time I spend taking things out of my pantry, measuring them, and then cleaning up the mess next time I make the waffles.

3| Only invest in a few quality gadgets.

Most of the posts I’ve read about cooking with chronic pain are gadget-centric.  In my opinion, having lots of kitchen gadgets doesn’t necessarily make cooking with chronic pain easier.  It’s better to have less to store, less to clean, and less to worry about in general. Ninety nine percent of the time I only need my crockpot, hand mixer, and food processor to make cooking easier.  This is partly because I can use my food processor for so many different things, such as:

  • creating creamy sauces
  • mincing leafy greens
  • crumbling ground beef
  • making frozen yogurt
  • mashing food (such as carrots for my bird or bananas for my waffles)
  • chopping vegetables (just be careful to pulse them or you’ll end up with mush)

I love my food processor because it saves me from having to use my hands to do things in the kitchen.  Take a moment and think about what you really need for your own cooking style.  If you do purchase a new gadget, then try to choose a high-quality, multifunctional item.

4| Be strategic.

It is essential to work strategically in the kitchen when you struggle with things like chronic pain, fatigue, and brain fog.  Here are some of the ways I’m strategic in streamlining my cooking process.

USE THE SAME INGREDIENTS.

I learned this technique from my friend Emily over at The Unprepared Kitchen.  She uses a recipe pairing concept where you cook several different meals using the same base ingredients.  This saves time and energy throughout the entire cooking process – from the initial shopping trip to the last meal of the week.

Bonus: You can try out Emily’s meal plans for free at The Unprepared Kitchen.

USE ONE POT RECIPES.

One pot recipes are an ingenious way to use less dishes while still creating a delicious meal.  Melissa from No. 2 Pencil has an entire section of her blog dedicated to one pot meals.

SAVE IT FOR LATER.

If I only need half an onion for a recipe, I’ll quickly run the other half through my food processor and freeze it in water to use later.  I freeze leftover wine, chicken broth, bananas, coffee, spinach – really anything that can be safely frozen.  Be sure to look up the best way to freeze each food item and label storage bags accurately.  It also helps to keep a list of what you have in the freezer so you don’t have to go on a scavenger hunt when you need something.

STAY VIGILANT.

I try to pay close attention to what I’m doing in the kitchen (and why) instead of cooking on autopilot.  This way I can analyze my process and hopefully find ways to improve it.  When I can, I cook in the morning when my mind is typically clearer and more alert.

5| Grocery shop like a pro.

The cooking process begins at the grocery store.  One thing I’ve learned is that I need to grocery shop and cook on different days, because trying to do both in one day really wears me out.

Since going to the grocery store can be so difficult for me, I shop in bulk and keep extras of things I use regularly.  I have a storage space in my pantry for extras and I add them to my grocery list once I’ve taken the extra out to use.  This helps me because I can go shopping less frequently and not have to worry about running out of things I need.

I also recommend using delivery services if they are available to you.  I’m a big fan of ordering Amazon Prime Pantry Boxes and my local grocery store (Harris Teeter) has grocery pickup and delivery services for reasonable prices.  Anytime I don’t have to walk around the store or carry heavy bags home is a win for me.

ETA: I use Amazon’s Subscribe n Save service in addition to Prime Pantry. There are certain items I *know* we’ll need on a regular basis, on why on earth would I want to buy them over and over at the grocery store when Amazon will deliver them to my door on a schedule that I can choose? I HIGHLY recommend checking out this service. If you’re not a Prime member, here’s a coupon code for a FREE 30-day trial!

But what about those times when you can’t go grocery shopping at all?  I often find myself sitting at home while my husband goes grocery shopping alone.  If you have to send someone to the store for you, try to give very detailed instructions on what to purchase.  Don’t just say “almond milk”, say “unsweetened original Silk almond milk in the large container”.  This prevents accidental purchases, food waste, and multiple trips to the store.

Also, try using a list application such as Google Keep, which can be shared with the person who is shopping for you.  I gradually add items to my grocery list throughout the week and, since I’ve added him as a contributor, Mr. Meena can access the list directly from his phone when he is at the store.  I don’t have to worry about forgetting to tell him I need something in the moment thanks to brain fog.


Finally, be gentle with yourself.  Don’t worry if your food doesn’t look pretty or if you haven’t tried a new recipe in a while.  Just do the best you can and know that it’s okay to eat cereal for dinner when you need to.  While these techniques help me to be more independent (and I know my husband appreciates it when I can successfully make dinner by myself), my health always comes first when it comes to cooking with chronic pain.

Do you have any tips for cooking with chronic pain? Tell me in the comments!

DISEASE MANAGEMENT: Hacks to make living with chronic illness easier

DISEASE MANAGEMENT: Hacks to make living with chronic illness easier

 

  1. Have stools in your kitchen. I use the bar stools we have around our island when I’m doing things like chopping vegetables. It’s a lot easier than standing.
  2. Keep to-do lists – prioritized. I use 1, 2, 3 for mine. The 3’s need to be done at some point, but aren’t important enough to spend energy on when I don’t have it. The 2’s are items that have more urgency, but if I can’t do them within the next few days that’s okay. Some will remain 2’s, others may move to 1’s. 1’s are tasks that need to be done within the next 2-3 days, so it’s necessary to manage my energy to accomplish those tasks.
  3. Use Amazon Subscribe n Save. We all have items we buy on a regular basis – paper towels, vitamins, snack foods, etc. They’re delivered straight to my door once a month. Each item can be sent anywhere from every month to every six months, based on the preferences you set. It saves me time and energy on things I know I will need and use.
  4. Find enough comfortable clothing that’s acceptable to wear out of the house. Sometimes you can’t wear sweats, etc, so for times like those, I have leggings, flat-heeled boots, t-shirts, and other things I can put on and look okay for functions.
  5. Have a basket of snacks by my bed. I have everything from healthy stuff like nuts to less healthy things that will give me a mental boost, like chocolate. While I’d like to say I always eat healthy, there are times when I need to soothe myself with food. I don’t feel guilty about it. This saves me from having to go up and down the stairs since my bedroom is on the second floor and my kitchen is on the first.
  6. Use compression socks. I have restless legs syndrome, and it can make sleeping very difficult. Compression socks help a lot and I keep them right near the head of my bed so I don’t have to stumble around in the dark trying to find them. I have a little basket with those, some slippers, fuzzy socks, etc.
  7. Set a blue light filter on my phone and turn down the lights early. This all gets my body in the “time to go to sleep” mode. The filter is definitely a help.

There are other things, but I don’t want to overwhelm anyone, so you’ll see more in future posts. Do you have any hacks? Tell me in the comments!

MY LIFE: 22 things I wish healthy people understood

MY LIFE: 22 things I wish healthy people understood

Creative Commons photo courtesy of amenclinicsphotos ac, used with permission

It’s beyond frustrating dealing with people who don’t understand our chronic illness conditions, and I’ve listed several here. Basically, I want healthy people to read this to hopefully open their eyes, and I want chronic illness warriors to know they’re not alone.

  1. Why I sometimes don’t take meds for pain. If I did this, I’d be popping pills like Pez, and as any chronic illness warrior knows, you can’t do that. The reasons are myriad and varied, but you can’t. Sometimes we have to live with our pain, and sometimes meds don’t help. Also, with the current opiate epidemic, it’s hard for us to get painkillers, so we hoard them.
  2. To dovetail on #1, I’m always in pain. Always. I’ve learned to live with it, so you might not notice, but yes, I’m in pain. ALL. THE. TIME.
  3. I am not lazy. I have low energy and need manage it. That means that I may do absolutely nothing in a day besides stumble between the bed, the bathroom, and the fridge. If I could do more, I would. And yes, I feel guilty that I can’t do more.
  4. And to dovetail on the end of #3, I constantly feel guilty. We all have long “to-do” lists, but if we’re smart about managing our conditions, we know sometimes we’ll get nothing done, sometimes a little, seldom a lot. We feel guilty because our illness affects others around us, and we’re powerless to do anything about it.
  5. That sometimes I don’t want to talk about my condition. It’s nice to talk to people about things other than my fibromyalgia and related illnesses. Sometimes, yes, I do need to talk/vent about it, but I’d rather hear about something I don’t eat, sleep (ha!), and breathe every day.
  6. I am not the person I want to be, and that’s really hard on me. I want to be productive like I used to be. I want to have pain-free days when I can frolic with my husband and daughter and not worry that I’ll pay for it. I want to go where I please, when I please. And most of all, I want to be a person who doesn’t have a chronic illness. And, if I react to you in anger or another negative way, remember that it’s likely the pain talking.
  7. I am not faking it. I have a chronic illness. It gives me a lot of pain and crushing fatigue. I realize a lot of people don’t believe me, and that makes me angry, but there’s little I can do to change someone’s mind.
  8. There’s a difference between happy and healthy. I can’t be miserable all the time. In fact, I work hard at not being miserable. So, if you’re talking to me and I sound happy, it means I’m happy. That’s all. It doesn’t mean that I’m not in a lot of pain, or extremely tired, or that I’m getting better, or any of those things. Please don’t say, “Oh, you’re sounding better!” or “But you look so healthy!¨ I am merely coping. I am sounding happy and trying to look normal. If you want to comment on that, you’re welcome.
  9. I can’t do the same things today that I could yesterday, or vice versa. Some days I can stand for a while, others I can’t even sit for a short time. It’s difficult to know how I’ll feel on any given day, so making plans is a crapshoot. I don’t like being unreliable. It’s merely my reality. Please repeat the above, substituting, “sitting”, “walking”, “thinking”, “concentrating”, “being sociable” and so on … it applies to everything. That’s what chronic pain does to you.
  10. I am trying to manage my illness, but it will never, ever “get better”, and hearing those words constantly is frustrating beyond measure. Please understand that “getting out and doing things” does not make me feel better, and can often make me seriously worse. You don’t know what I go through or how I suffer in my own private time. Telling me that I need to exercise, or do some things to get my mind off of it may frustrate me to tears, and is not correct. If I was capable of doing some things any or all of the time, don’t you know that I would?
  11. My mind is not what it used to be. So you may have to repeat a request, or write things down for a person with chronic pain. Don’t take it personally, or think that they are stupid. We might drift off while you’re talking, which makes you feel like we don’t care. We do, but brain fog is insidious and we do the best we can.
  12. Pain and fatigue can make what seems like a small task to you a huge mountain for me. Pain can sometimes trigger psychological disabilities (usually very temporary). When in pain, a small task, like showering or doing the dishes, can seem like a huge wall, too high to climb over. An hour later the same job may be quite OK.
  13. I may shy away from going to particular places, but I have my reasons. I may not want to go anywhere that has no refuge (e.g.no place to sit or lie down). I might not go somewhere that’s loud and bright. It’s all self-preservation, not me trying to inconvenience you.
  14. I appreciate even small acts of kindness. Bringing me food, washing my hair, taking care of my child so I can rest…all of these things are truly appreciated, even if I do occasionally forget to say thank you. It’s nice to know I’m not in this alone, that you support me, in whatever way you are willing to.
  15. I love hearing that you believe me. So many people don’t. And when those people are close to you, it hurts. So if you tell me or show me you believe I am suffering, it means the world to me.
  16. I may need time to recover from something you don’t think is a big deal, or a lot of time to recover from a major event. Going to my daughter’s gymnastics meets exhaust me, and make me very sore since the places to sit are atrocious if they’re even available. Attending a party might do me in, well before the end of the night. Just making dinner or cleaning the house might necessitate a nap. It’s just the way it is. When something as simple as sitting the wrong way or standing up takes effort, nearly everything becomes a labor or a chore that I have to deal with and overcome, then rest from.
  17. I wear pajamas and other comfort clothes a lot. Why? Because if no one is going to see me anyway, why shouldn’t I at least be comfortable? I’ve got enough to deal with and don’t need to add unnecessary chores.
  18. I micromanage every single aspect and moment of every day. I have to, or I’m unable to determine what I can and can’t do and figure out how to get things done. This in itself is exhausting, but absolutely necessary. I’m not being a control freak because it’s fun.
  19. I don’t invite people to my house because it’s always messy and I feel bad about that. But that doesn’t mean if you offer to come over I’ll refuse. It’s embarrassing when people come over and judge my cleaning skills.
  20. I may not answer texts or phone calls. Sometimes I just can’t. I’m too tired to type or talk. I might not want others to know how bad I’m feeling. I might not want to have to say no if you make a request of me, so I avoid communication. Texting is always better than talking on the phone, though. I text instead of calling because I’m not sure how I’ll sound over the phone, and I can make the text sound positive without acting.
  21. I may stay inside/at home for days at a time. I’m resting. I need to do it. Please don’t make me feel bad about it or lazy. Yes, it’s a beautiful day. Yes, I’d love to take a walk and enjoy the sunshine, but sometimes I just can’t. I keep a lot of my curtains closed. Bright lights and repetitive noises can be agony to me.
  22. Family or friend gatherings might not be fun for me. I’m surrounded by people and kids are running around and everyone is talking, laughing, and having a good time. No one realizes how huge that sensory overload is for me or how much energy even sitting there can sap.

I could go on, but I won’t. Feel free to comment on what you wish people understood.

 

 

 

 

 

RESOURCES: Apps to help with managing chronic illness

RESOURCES: Apps to help with managing chronic illness

Image courtesy of Creative Commons, Duy Pham Nhat, used with permission

We all need a little help managing our lives, and especially our chronic pain conditions. Sometimes it overwhelms me to think about my meds, exercise, eating right, and all the other “should do’s” associated with living with a chronic illness. Fortunately, I’m not the only one who feels this way, so a bunch people much smarter than I have made lots of chronic illness apps. I’ve highlighted several below.

Caveat: some of these apps are only available for iOS or Android, but not both.

Pain Trackers

My Pain Diary: I don’t use this app, but I know it’s very popular, so I’ll let a user who posted on The Mighty (a website you should definitely check out), talk about it. Other pain tracking apps include Catch My Pain, Manage My Pain, Chronic Pain Tracker, Fibromapp, Pain Tricks (helps if you’re scared about a medical procedure or even a blood draw), and WebMD Pain Coach.

You can log your pain score each day (you know that your doctors are going to ask) – but it does much more than that. In addition, it tracks the weather, so you can see if your pain scores change with the weather, and it allows you to track more than one condition at the same time.

You can then check off location, type, trigger, remedy for pain and even set more metrics that you may want to track.  Each of those metrics is customizable, so you may have pain in your leg and want to differentiate between pain in your foot, calf, knee or thigh. You can put those into the location category. Maybe you
get different types of pain: burning, dull, and throbbing, you can enter all of those under the “type” entry.

There is a place for you to write notes and the ability to take a photo and add that to a daily entry. The best part, to me, is that you can send the info to your computer and either email it or print it out for your doctor.

 

 medication trackers

Some other medication trackers include MedCoach, MedicineList+Pillboxie, and DoseCast.

Medisafe: This is one of many medication trackers. It lets you enter each medication you take and the frequency you take it each day. Then it will remind you to take it at the pre-set time. You can also use it to count the pills you have left in your bottle, which then helps you know when to order a refill.

Medisafe will give you information about each of your medications and interactions (of course you should get your primary info from your doctor or pharmacist, but it can provide a useful reminder). You can even get a compliance report, if you want to know how well you have been doing on sticking to your medication regimen.

at-home therapy

These apps help with things you do at home to manage your condition, like yoga, music therapy, and more. Some apps not expanded upon here include HeadSpace, SmilingMind, YogAmazing, Accupressure: Heal Yourself, Simply Being, and TrackNShare.

eMTCP Music App: The American Chronic Pain Association reports on the eMTCP music pain app which was developed by researchers at the University of Malaga. Music therapy has long been shown to be an effective therapy for reducing chronic pain symptoms. This pain app allows you try this therapy directly from your phone, whether on your commute or while getting ready for bed.

diet

Other apps not listed here include Diet Assistant, Fitocracy, Paprika (this is a cooking app geared to foodies but would work great if you’re on a special diet), BigOven, and Fooducate.

MyFitnessPal: MyFitnessPal is one of the most popular and widely used of the diet apps that work, due in part to its features and ease of use. This app is used as a weight loss tool, tracking daily food consumption and exercise. With a database of over five million different foods, it is easy to track your daily calorie consumption over time. Exercises can also be tracked, either by selecting an exercise from a list or describing it. This app is free, available for both Android and iOS phones, and offers a supportive community online.

sleep assistance

For other apps, try SimplyNoise.

SleepCycle: This app is available for both Android and Apple phones for 99 cents. SleepCycle tracks your sleeping patterns over several days and then uses that data when you set your alarm clock. Then it wakes you only during your lightest level of sleep. This prevents grogginess upon awakening.

fitness

I think we can all agree that FitBit has cornered the market here, but others worth noting are MotionX 24/7, MapMyFitness (only for working out, really), and Argus.

FitBit: Fitbit tracks every part of your day—including activity, exercise, food, weight and sleep. I have a FitBit and I love it for tracking several of the things I’m supposed to be paying attention to. I especially like the sleep tracker, but let’s face it, the pedometer is a major motivator (though studies have shown some people are actually DE-motivated by it, so your mileage may vary). You can customize everything, look at results over time, etc. FitBit has a bunch of different products based on your wants and needs, though I will admit they are a little pricey.

What have I missed? Do you have a favorite app? Tell me in the comments section!

 

 

 

 

DISEASE MANAGEMENT: Quotes about chronic illness when you need a lift

DISEASE MANAGEMENT: Quotes about chronic illness when you need a lift

Creative Commons picture by Forsaken Fotos, used with permission

Who hasn’t felt like this before? But don’t throw in the towel! Lots of inspiration exists for those of us who battle chronic illness. I’ve pulled out some of my favorites for you.

What are your favorite quotes about dealing with chronic illness?

RawSpiceBar delivers freshly ground, global spices, created by top chefs for your next globally inspired home meal. Direct to your door for $8/month. Encouraging home cooks to incorporate fresh, authentic & new globally inspired meals into their cooking routine each month.

RAWSPICEBAR’S MONTHLY SPICE SUBSCRIPTION BOX

Receive 3 hand-picked, small batch, freshly ground spice blends with each RawSpiceBar’s monthly spice box contains 1-2 ounces of spice blends, creating three dishes for serving 8-10. You will also receive kitchen-tested, detailed recipes and ideas for each spice blend you receive.

RawSpiceBar partners with award winning chefs, bloggers and source old family recipes to bring you unique spice blends from the highest quality spices around the world, with an unprecedented focus on quality and flavor.