Most people believe you have to stop doing things you love when you have a chronic illness. True, there will be some activities it simply isn’t possible to do with a low energy level and plenty of pain to deal with, no matter how high your various tolerances.

But a great many things can be accomplished, as long as you learn the “new” method that will work for you given your current health. If you love to go out, then do it. Just take precautions and plan ahead. Don’t spend the entire day cleaning your house and then expect to hit the town. You’ll crash. Or maybe not, but you probably won’t have a lot of fun. Instead, rest as much as you can.

Do you enjoy gardening? Then plant. But temper your expectations. Whether it’s flowers or vegetables, it may be necessary to scale back on what you previously grew. Leave part of the vegetable garden unplanted and only do those foods you love the most. If you’re talking flowers, you might have to decrease the size of your beds. I’ve let part of two of mine go back to grass so I’m better able to tend the rest. I weed when I have energy, and when the sun isn’t blazing down on me.

Is cooking your thing? Concentrate on doing one dish well, rather than trying to put out a large, several meal. Make a huge pot of chili. Don’t try to do soup, a main course with sides, and dessert. If you’re having a gathering, that’s what other people are there for – to help you. Friends and family should all know about your condition and be willing to help. If not, maybe you shouldn’t be hosting parties yourself. Why drain all your energy for people who may not be grateful?

These are just a few examples of how you can work your favorite activities into your life, even with a chronic illness. Do you have your own things that work for you? Tell me in the comments.

Happy Father’s Day to all the Chronic Illness Warriors out there, or anyone who supports them!

My daughter’s last day of school is this upcoming Wednesday. Naturally, she excited. Probably also naturally, I am not. Don’t get me wrong, I adore my daughter. I love taking her on adventures to places she’s never been, and back to all our favorite places. But after my husband leaves for work around 8:30, she is mostly mine and mine alone to care for until 6pm or later when my husband gets home. I have help. Both my parents and my in-laws live in the area and they do watch her, but it’s intermittent. So what’s a parent like me to do?

I compiled a list of five things I’m planning to do so I don’t throw myself into a flare overdoing things while my daughter is home. I hope they help you as much as I’m hoping they’ll help me:

1. Enlist help: Yes, as I said above, both sets of her grandparents live in town and are able to help out, especially when I’m not feeling well. I haven’t talked to my mother-in-law, but I’m hoping she’ll take a day off my hands. Even if help exists in the form of having cousins get together or something similar, it still means it’s not just you and your kid(s) all summer long.
2. Trade with other mothers: One of the other mothers from my daughter’s class asked if I wanted to trade days each week. I’ll take both my daughter and hers (they’re good friends) on Tuesdays for about five hours and she’ll do the same on Wednesdays. So right now, Wednesdays are covered for the most part. I don’t want to shuttle my daughter to different houses every day, but it’s nice to know I will have a day off each week to get my massages, see my doctors, or simply sit at home in the air conditioning. Maybe I’ll go out to our new concrete patio and veg.
3. Look for summer camps or classes that would interest your child(ren): My daughter is starting competitive gymnastics at the end of this month, which means two classes for an hour and 15 minutes each. I predict she’ll love them. Unfortunately, competitive gymnastics classes are costly, so I really don’t have money to do more than an occasional class or two. At this point she isn’t scheduled for any, and that’s okay. But it’s certainly an option for a mom looking for a respite, even if only for a few hours.
4. Buy unlimited passes for attractions near you that your child(ren) enjoys: My daughter and I bowl. Sometimes I have some trouble because of fibro pain, but even if that’s the case, I can bring her. The passes for unlimited summer bowling are $22 each, and that mom I’m trading days with gave me money to get a pass for her daughter too, so even better! I’d suggest somewhere that’s not the same every time, whether a small amusement park, a bowling alley, or something similar, over a place that doesn’t change much like the zoo. The boredom factor may set in with repeated visits to such a place.
5. Be careful when making your schedule: We all know chronic illness warriors can throw ourselves into a flare if we try to push too hard for too long. If you know you’re going to spend a day out somewhere, stay home the next. Your child(ren) should understand your illness. Don’t think you’re fooling them into believing everything is fine. My daughter is only 7 and yet gets that there are days we’ll be laying in my bed and watching movies or coloring. If your kids aren’t okay with that, at least try to rest while they play elsewhere. Maybe your children will go next door to play with a child there, or down to the basement to shoot each other with Nerf guns. As long as it’s safe and keeps them happy and occupied, I say go for it.

What other tips do you have for making sure you don’t set yourself back this summer? Tell me in the comments!

I tend to be skeptical about many treatment options for fibromyalgia and, more generally, autoimmune diseases. In dealing specifically with fibromyalgia, we know there are no drugs that can “cure” the illness, just different ones to deal with the symptoms. Also, no other treatments address the illness itself; all are symptomatic only.

So when I go see one of the seemingly never-ending line of doctors who deal with this or that aspect of my fibro, and they suggest a treatment, I never jump for joy. For one thing, I’ve probably already heard of it. I’ve already researched it and rejected it as something I believe would help me. But I’m not a doctor, so despite my reservations, I’ve agreed to try some of the treatments.

Right now I’ve got a dilemma. My neurologist wants me to try a gluten-free diet. I know all about leaky gut syndrome, but it’s one of those things that doesn’t appear to have any correlation to my fibro. That’s why I’ve never gone gluten-free before.

Gluten-free can be a slippery slope. It’s difficult for someone like me who is often on the go to avoid all foods with gluten. The diet can actually harm you or create symptoms you never had before. But would it help me? Perhaps.

What are your experiences with going gluten-free? Tell me in the comments!

I’ve had migraines for years, but they’ve grown especially hard to deal with since being diagnosed with fibromyalgia. I don’t know if it’s the stress of learning the new normal, dealing with more going on health-wise than ever, or something else.

Like most people, I hate migraines. Mine aren’t “regular” migraines. The doctors call them tension migraines, which basically means they’re a combination of different types of tension triggers and classic migraines. Having more ways to get a migraine doesn’t make it them any easier to deal with, believe me. The pain, the brain mushiness, the overwhelming tiredness…they all weigh down on you.

Millions of people suffer from migraines. For years the biggest things I’ve wondered is – why can’t they figure out what causes migraines? Why can’t they do better than mitigate the symptoms; even somewhat? Medical advances have come so far in tons of ways, but doctors the world over are stumped about migraines?

Yes, I realize migraines can come for a variety of reasons. There’s nothing about them that’s simple or uncomplicated, but few health issues are.

So how do we cope, before, during, and after the migraine hits?

Before:

• Keep a migraine log. Know what you ate, drank, and did activity-wise before your migraines have come on. Look for a pattern.
• Do what you can to manage your stress. Migraines are not always brought on by stress, but they certainly play a part.
• Watch your alcohol intake. Beer and red wine seem to be especially bad for triggers.
• Other triggers can include food additives, hormones, and withdrawing from certain drugs. Even bright sunlight or a weird odor can bring one on.

During:

• Hot or cold showers can help. Not everyone finds relief from any method of treatment, but there are worse ways to spend 20 minutes.
• Medicine, whether prescribed or over the counter, are also considerations. Be careful, though. It’s easy to take too many pills or mix the wrong pills when your head feels like an anvil fell on it. Painkillers, muscle relaxers – there are tons of options out there and lots of ways to combine them, both good and bad.
• Massage therapy is also a viable option. I get massages every two weeks, and have been for about seven years. Since my injuries are chronic, they’re a part of an overall treatment plan.

After:

• Try to get some rest, or, even better, sleep. Depending on who you are and what your headaches feel like, sleep may be your friend or your enemy during the acute attack. Too much sleep is bad; too little sleep is also bad.
• Light exercise might help you feel more “with it” again. Having a migraine often makes you feel disconnected from the world. Even running a few errands can do the trick.
• Start eating. One of the common things that go wrong when you have a migraine is your diet. You might be hungry, you might not be. You could be eating junk, or whatever’s easiest at the moment. No one can blame you for any of that, but you must get back on track.

There’s enough advice out there to fill a small ocean. These are just things that work for me. Take them as that, and I hope they help you!

Do you have any different methods of coping? Tell me in the comments!

Other people see a holiday weekend coming up and think “Yay! No work for (insert) days!” Chronic illness sufferers, though, often look less forward to them. Why? Because lots of special things happen during holiday weekends. And lots of special things take lots of energy, which many of us don’t have.

How can you make things easier?

Planning and the willingness to say no.

Let’s tackle these one at a time. Planning: Try to find out what these special events are, when they will happen, and if there are any expectations for your participation. Then you will have the information you need to make a battle plan. Yes, that sounds rather extreme. When you suffer from chronic illness, though, you know it’s not.

What the special events are makes a huge difference. Are they inside? Outside? Lots of other people? Physicality required? Seating available? All of these things need to be taken under consideration.

That brings us to the second part. Saying no: You may have to do this more often than you’d like or even feel comfortable with. Unfortunately, that’s part of life with chronic illness. I will admit there are times the ability to say no is nice, for those events people invite you to or that you are expected to go to, but don’t want to attend.

Then there are the times you have to say no. You feel like crap, you’re exhausted – you know the drill. If you attend one or more of these aforementioned events, you will get worse. You know that. And yet the guilt. The guilt. Coming from family, friends, and even strangers. But resist. You need to. You really, really need to.

Your health is more important than almost anything else. Remember that.

What are your strategies for coping with holiday weekends or other special events?

Any chronic illness comes with a million complications to your life, not the least of which is the sheer number of doctors, each with their own specialties. But when are there too many cooks in the kitchen, so to speak? Let’s examine the particulars…

1. It’s difficult to coordinate medications with many doctors. As a result, one from a certain doctor may cause side effects from another. While we try to keep all our providers apprised to every medication we take, sometimes we forget which have the full list and which don’t.
2. Doctor appointments take time, between scheduling, traveling, waiting time, and the actual appointment. Just one can eat up an entire morning — one that might be better spent in bed resting.
3. I don’t know if others feel this way, but personally, seeing so many doctors can become depressing. Most of them aren’t giving us good news, and yet there’s no way we can avoid going to the appointments. If I have several in one week, I often find myself melancholy after I’ve driven all over the county and not received even one little tidbit of good news.
4. Doctors cost money. Whether you’re only responsible for a $20 copay, or if you are forced to foot the entire bill, the cash seems to flow out of your pocket and into theirs quite often. I wouldn’t be surprised to hear that patients with chronic illness are the ones responsible for sending all these doctors to Aruba every year. I’m only half-joking here.
5. Medications are expensive. Even good insurance adds up when you’re forced to fill ten or more prescriptions each month, plus all the supplements and vitamins every one of us uses in a vain effort to have more good days than bad.

I’m sure there are more than five reasons, but these seemed the most important. If you have others to add to the list, let me know down in the comments section.

These are ridiculously comfortable shoes. Check them out! If you’ve tried them, post a comment below. I’d like to hear from you all if you own a pair of these shoes.

I just got a beautiful tattoo on the inside of my wrist late last week. Here’s a picture.

Why the butterfly?

From Fibro Daily: Because the impact of Fibromyalgia can be felt in major ways, no matter how small or light. The lightest touch of a butterfly could cause massive repercussions for a Fibromyalgia patient. Most Fibromyalgia patients are women. Hugging your child can cause intense pain.

So what about the purple ribbon in the middle? Does every disease and its brother use a purple ribbon? Well, yes. But here’s why, from Deb Devlin Design:  This color is a symbol of pancreatic cancer, domestic violence, religious tolerance, animal abuse, the victims of 9/11 including the police and firefighters, Crohn’s disease and colitis, Alzheimer’s, rett syndrome, cystic fibrosis, lupus, fibromyalgia & epilepsy, chronic urticaria (hives), Chiari malformation

Why aren’t there any words?

I haven’t decided if they’re necessary, that’s why. If I did get words, I’d love them to be:

Fate said to me: You cannot withstand the storm.
I said: I am the storm.

But that’s an awful lot of words, so who knows?

Let’s get back to why I got the tattoo in the first place. Right off the bat, I should tell you I didn’t do this for anyone else. I did it for me. Even when my flaring is at its worst, my arm is still attached (hopefully) and I can look down on it, remembering that I have a 100% success rate when it comes to getting through these flares.

I wanted something simple, yet beautiful. I think Tom over at Redhouse Tattoos did a great job and I highly recommend him for anyone looking to get ink done.

Do you have a tattoo for personal reasons? Do you talk about it or why you have it? Tell me in the comments section!

Hi everybody! Today I’ve invited my seven year old daughter to talk about what her life is like since I have fibromyalgia. I’m going to ask her questions and then type her answers.

Q: What do you feel like when your mom is in pain?
A: Angry, sad. Not angry at her, angry at the fibro.

Q: What is the biggest change in your life since your mom got diagnosed?
A: I was surprised and sad when she got diagnosed. I knew there would be a change in life for me. That change is that I never got to spend as much time doing fun stuff with her. It’s blown me off my original track because it made a total change in life for me. I was surprised that my mom got diagnosed with it, because she looks totally healthy, but then she explained to me that it’s an invisible disease and then I wondered how it could be a disease because no one can see it. Then she told me she tries not to show the pain. Now I am one year older and I’ve gotten used to it but it still makes me sad.

Q: What’s your favorite thing you can do with your mom that she’s still able to do?
A: Go out to stores and look out, especially in the art sections. I love art and she always tells me how good I am at it and buys me lots of supplies.

Q: What is your least favorite part of your mom having fibro?
A: She has to lay in bed a lot, so I can’t play with her as much as I want to.

Q: Does your mom do anything to try to make up for the fact she’s in bed so much?
A: Yes. She invites me up to her room to watch TV and she’s bought us a ton of adult coloring books, plus colored pencils, markers, and gel pens. We like coloring together.

Q: How does it make you feel if you do something special together?
A: Really good, but I still know she has fibro so that makes it so it can’t be perfect.

Q: What are good clues that tell you whether your mom is feeling well or bad?
A: Well – My mom doesn’t have eyes that are half-closed. Also, she’s not in bed.
Bad – When she tells me she has to go to sleep – that she doesn’t have any choice. Also, when she takes a bath with epsom salts.

Q: Do you sometimes see your mom crashing before she sees it or you know she’s pushing and will be flaring later?
A: Yes, because she has to sit more, or because she falls asleep while we’re coloring.

Q: What does it feel like when mom isn’t available because she’s resting or flaring?
A: I feel sad, but not as bad as I used to feel because I’m used to it now. Plus, sometimes I spend the day with my dad and that’s usually cool.

Q: Are there any things you know your mother shouldn’t do and so you try to help?
A: Sometimes I see something that has to be done and I tell her I’ll help or I’ll do it for her.

Q: If you could take away all her pain and tiredness for one day, what would you want to do?
A: As much as we could do. Go get ice cream, go to the playground, take a bike ride, just be with her without worrying.

Q: Do you feel like you’re missing out on anything because your mom has fibro?
A: Not really. I know I’m still very lucky and my parents love me a lot.

That’s about it for the small person. It’s time for bed! If you have any questions for her, leave them in the comments and I’ll show them to her.

These are some of my daughter’s favorite markers for coloring with!