Hi everyone. For two and a half months I’ve been plagued by illness, migraines, and exhaustion. It’s been a struggle to live my daily life, much less keep the blog up. I’m hoping to get some posts done next week, but until then, I just want to remind everyone…

In this time of current events upheaval, it’s doubly important to practice self-care. Whatever your brand of that is, make it a priority. Do it for yourself, do it for your family. Fight on, chronic illness warriors!

Is it just me, or does the title say 40, but there are only 30? Either way, there are some great ideas here! Taken from Pinterest: https://www.pinterest.co.uk/pin/444589794454822220/

MY LIFE: Things I do to manage everyday pain

Image courtesy of Creative Commons, used with permission from lisa-skorpion

Chronic illness warriors face pain all day, every day. Because of this, we need to have a lot of tools at our disposal. Here are a few I keep on the front burner:

1. These aren’t physical items, but they do serve as wonderful distractions. I have subscriptions to Hulu, Amazon TV, Netflix, Pandora, and a couple of other entertainment venues.
2. Leggings and t-shirts – long-sleeved and short, depending on the weather. They’re almost the only things I ever wear. The leggings I prefer are LuLaRoe, but they do get quite warm in the summer, which is when I switch to capri leggings and pants. I find shorts uncomfortable, personally.
3. Find somewhere or someone to vent. We all need it, and there must be a safe place to do it.
4. I have bath products. Lots and lots of bath products. That’s because I like baths. They make me feel better. My favorites are baking soda and epsom salts like Dr. Teals. There are other formulations than yours.
5. The ability to say no without letting it overwhelm you with guilt. It’s a valuable skill and one that will keep you sane.
6. Coloring books. I have nearly 20. I also have colored pencils (in a variety of colors and types, like my favorites – metallics!), gel pens, and markers. When I need a quiet distraction, I color. Sometimes they come out well, sometimes they don’t. And it doesn’t matter which happens.
7. Me and my massage therapist have been together for seven years. I see her more often than I see most of my friends and even some of my family. I try my absolute best to keep appointments, because she helps me so much. She’s a huge part of my pain management plan.

What things do you rely on for everyday pain management? Tell me in the comments!

MY LIFE: Why you haven’t seen new posts

I tend to do blog posts in bunches, and I had posts scheduled through most of August, thinking I’d be fine to get another batch out when the time came.

I was wrong.

I’ve been SLAMMED with life, and I apologize for that. My daughter is going back to school on the 7th, and while I’ll miss her, I need my life back. I need my time back.

So look for new posts soon. In the meantime, stay well and be happy!

MY LIFE: Reconnecting with my spouse on our wedding anniversary

Courtesy of Creative Commons, used with permission from Hanza Butt

Today is my thirteen wedding anniversary. As many of you battling a chronic illness know, being sick can exact a heavy toll on your marriage and family life. So on this day of celebration, I decided to share some tips on connecting with your spouse despite your illness.

1. Communicate. Don’t suffer in silence. It doesn’t help you, and it certainly doesn’t help your spouse, who will have no idea you’re having a rough day, etc. Our spouses are not mind readers. State your needs clearly. We need to tell them what’s going on so both of you can face the challenge of your illness together.
2. Deal with anxieties so you can feel more in control. It’s normal to go through the stages of grief when your life changes so drastically. Don’t shove it all down inside and hope it stays there. It won’t. If you can’t deal with this yourself, use a therapist or counselor who specializes in treating people with depression and anxiety. And remember – your spouse might be grieving too.
3. Watch your caregiver’s health too. The stress of helping you might be putting a burden on them, and if they’re sick, they can’t be there for you. Caregivers can suffer from burnout. Help them find ways to relax and recharge, alone or with you.
4. Address the financial strains of the situation. Most people with chronic illness find that doctors’ appointments, meds, and other costs associated with the treatment of that illness can be a burden on a relationship. Use a financial planner if that helps – there are even some who specialize in helping chronic illness families figure out how to make their dollars go further. You’ll find a list of providers here.
5. Put effort into your spouse whenever you can. if you’re able to cook a nice dinner, go see a movie with them, or schedule a time for them to get out of the house to do something they enjoy, do it. Make keeping your spouse happy a priority.
6. Try to keep a positive attitude and encourage your spouse to do the same. Study after study has shown that attitude makes a huge difference in your health, and for a chronic illness warrior, this is especially crucial.
7. Pursue your own activities and interests and make sure your spouse does the same. They may become so wrapped up in helping you that they neglect their own mental well-being. Make sure you each keep separate identities in addition to the joint identity you have as a married couple.
8. Don’t stress about sex. Intimacy can be achieved in many ways that don’t require a marathon session of sex. Cuddling while watching a TV show, cooking together, going somewhere fun – all of these things can create a sense of togetherness.

So there you have it. Do you have any additional tips to share? Tell me in the comments, which I’ll read later, since today is all about my spouse and my marriage.

MY LIFE: 5 things to never say to any chronically ill parent

Image courtesy of Creative Commons, used with permission from Ian

People are sometimes thoughtless. They can also be cruel. I think to think many of the ignorant comments directed toward chronically ill parents are borne from ignorance, not malice, so allow me to talk about some of the things a person should not say to a chronically ill parent.

1. You don’t seem sick!/You look fine!/What do you mean you’re tired?/What do you mean you can’t?/Any variation on this theme.
2. It could be worse./At least it’s not cancer./Any variation on this theme.
3. Do you wish you had never had children?/Do you regret having to take care of someone else with the way you feel?/Any variation on this theme.
4. Have you tried massage?/Pills?/Acupuncture?/Unicorn tears?/Any variation on this theme.
5. Why don’t you just exercise more?/Become a vegetarian?/Hire a nanny?/Any variation on this theme.

The first invalidates our illness. The second trivializes it. The third is just plain insulting and cruel. The fourth is annoying at best because of course you’ve tried everything you can. The fifth is presumptive and dismissive.

This post is short and sweet for a reason. Normally I explain more, but these five things are some of the worst things we hear over and over. Just don’t, and educate others not to either. We can educate (like I am here), but we get tired of explaining/justifying our lives and choices to others.

Do you have any question/statement that grinds your teeth? Tell me below!

MY LIFE: 4 things I’m doing to keep my kid busy and give back

Photo courtesy of Creative Commons, used with permission from Carissa Rogers

It’s summertime, and that means cries of “I’m bored!”, right? But what’s a chronic illness parent with low energy supposed to do about this problem? Find things for your children to do that don’t require much effort on your part. As a bonus, these five suggestions help make the world a brighter place.

1. Buy origami paper and have your children make a bunch of simple origami animals. Take the lot of them to a hospital or homeless shelter so the kids have something to play with. I bought this paper and it should last quite a while since it’s got 1000 sheets in it! The only downside is these are small sheets, but if your child is just learning origami you don’t want big sheets anyway.
2. Use printer or construction paper and ask your children to make cards for residents of a local nursing home. We all know how many of these people never get visitors, and knowing someone cares might mean a great deal to them.
3. Go to the dollar store and buy some pet supplies for a shelter, then bring them there and offer to help clean, walk dogs, or whatever else the shelter needs help with.
4. Also at the dollar store, buy some treats for children and adults alike and bring them to your local food pantry. Oftentimes the people who get supplies from food pantries don’t get fun stuff. Just remember not to buy things that require eggs, milk, etc to prepare. If you prefer to buy things most food pantries never have enough of, here’s a wish list from our local food pantry:
   1. cereal
   2. peanut butter or other nut butters
   3. canned tuna and chicken
   4. canned soups, stews and chili
   5. canned fruits and vegetables
   6. beans, canned or dry
   7. boxed macaroni and cheese
   8. pasta and rice
   9. spaghetti sauce
   10. baby food, formula, and diapers

And there you have it! What things do you like to do with your children during the summer? Tell me in the comments section below!

MY LIFE: Sometimes things get a little crazy…

Courtesy Creative Commons, used with permission from darkday

See all those circles up there? Each one represents at least one problem/issue/need/to-do item right now. My daughter is changing schools and moving up a level in competitive gymnastics and I’m signing a five-story co-writing deal with a colleague and my husband’s job is moving offices so he has to do much of the IT stuff. Getting an idea of how things have been lately?

So that’s why there have been no new posts in a week. I apologize for that and will try to get back on my every three days publishing schedule as soon as I can.

Until then,

Courtesy Creative Commons, used with permission from Chris Jennison

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!

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!

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.