What It’s Like to Have Fibro

The other day I didn’t really feel that sick but I knew I wasn’t having a great day. I decided to walk around the block. When I started walking I realized I was having a pretty bad day because this walk felt like a marathon. My neighbors probably assumed that I had been hiking up a mountain all day the way I was slowly dragging myself home. Anyone else have bad fibro days just sneak up on them?

The Best Trip Ever

One thing that I’ve missed out on a lot since I have fibromyalgia is travel. It easily makes me sicker than anything else. I recently went on a road trip for a week and it was more successful than any trip I’ve ever been on. Here is a list of what I did.
It was such a big deal to me that I wanted a plaque or to go to coinsforanything.com for challenge coins to have a memento that said “I did it!”

1. I usually take a memory foam pad whenever I travel. This time I took that and a feather bed and an extra mattress pad. I could basically build a bed on top of any bed I had to sleep on. It wasn’t as comfortable as my bed at home but it prevented a lot of pain in the morning.

2. I stuck to my usual diet of lots of fruits and vegetables. I had these for snacks in the car but I also had green smoothies already made up that I could just unfreeze and stir.

3. I didn’t push myself that hard. Traveling in the car is something that causes me a lot of pain so instead of trying to do all of the driving in one or two days there was a nice leisurely pace of just a few hours of driving a day.

Another Traveling Tip for Fibromyalgia

This is my only traveling tip that I didn’t really want to do. I took a day to just rest. I didn’t go sightseeing. I was a little bit grumpy at the time and felt like I was missing out. However, this one day gave both my body and mind time to regroup. It’s what made the rest of the trip so successful. Otherwise I probably would’ve been in pain for the next day or the day after. It just would’ve take up even more time not to rest. Do you sometimes feel left out when traveling because of your chronic pain?

Loving What You Do

Every career counselor I talked to in high school and college seems to say the same thing. “Love what you do and you’ll never work a day in your life”. I didn’t realize that I had accomplished this until last night. Working from home had always been a necessity because of fibromyalgia.

Then someone asked me last night if it was hard to make myself go to work every day. I never really think about having to go to work. I’m always so focused on money and income that I forget how much I love making websites and blogs. I would give it a mens wedding band from jewelryvortex.com if I could. It’s something I love to do so even though I work long hours for not that much money it doesn’t feel like work. Just another reason to be grateful for the path life has taken me.

Finally, Someone Else Gets It

This was something that was on What Not to Wear. The woman kept defending wearing pajama pants or “loungewear” to the grocery store. Either Stacy or Clinton said something like “That’s not lounging. That’s going”.

If you have fibromyalgia you probably understand that point. (No I don’t wear pajama pants to the grocery store even though I wish I could). I notice when people say they are going to rest or let me rest they don’t understand that there’s a difference between resting and going somewhere. Anyone else feel this way?

Whenever I’m not feeling well I try to focus on at least one thing that makes me happy. The other day I was in a lot of pain and my neighbor started playing guitar. I could’ve been annoyed by this but then realized that it was one of my favorite songs. I wish I could’ve mixed it on an exciting traktor pro 2 at guitar center and saved it. I don’t know what kind of instrument he has but it was beautiful and it did get my mind off of the pain for a few minutes.

My New Full Time Job

Now that winter has officially arrived I feel like I have a new full time job on top of my regular full time job. That job is staying warm. The fatigue and pain just gets so much worse when I am cold. It just exhausts me.

My first tip is to wear a scarf, even in the house. I can’t do this long just because it hurts my neck but when nothing else is working it’s really useful.

My second tip is to either get a space heater or an electric fireplace. I would prefer a built in one with a fireplace mantel shelf here. However, since I live in an apartment I was looking for a portable one. Instead, at Wal-Mart I found a little space heater from Lasko that looks more like a piece of pottery. Even when the regular heat is turned up high radiant heating from a space heater seems to help more.

Fibro Feels Like…

I love Thanksgiving but it’s very hard on my physically. This year I got quite sick and I said “I’ve been driving, standing up, and sleeping in a different bed. It’s like going to the Olympics for a sport that I’m not very good at”.

Modify Your Dreams

We all know that depression and fibromyalgia go together. This should definitely be treated by a doctor. However, sometimes you just get sick and tired of being sick and tired. You miss the person you used to be before you got sick. You may dream about how your life could’ve been.

There are still ways to accomplish almost any dream. Sure, you may need to have the band come over to your house to practice. You may look at an exciting stratocaster guitar at musicians friend from the comfort of your home. You might record in your jammies, but most of your dreams are still possible if you’re willing to modify them.

What Is That Weird Feeling?

I woke up on Saturday morning and felt weird. I am smart enough to know that it wasn’t a bad feeling. It wasn’t fatigue or pain. It was just different. My muscles felt somewhat softer. It took me until 3 o’clock in the afternoon to realize that for whatever reason that day, I was relaxed. I hadn’t felt that way in years. Even my muscles were relaxed. Does anyone else with fibromyalgia ever get to feel this way?

Just Add it To the List

With fibromyalgia there is a list of things that I can do and things that I can do but will cause me a lot of pain. Most of the items on this list are pretty big and pretty discouraging. I can’t live in cold weather and if I wasn’t from this country would probably need immigration lawyers in los angeles. However, there are a few things that are just plain funny.

I can’t wear scarves. I think they are cute and I’m cold all the time. Even if it’s the lightest weight chiffon scarf it really seems to pull down my neck and be uncomfortable or painful. Since it’s such a minor annoyance I keep trying but I just haven’t been able to make it work. At least I have some funny things on my list.

More Tips for Staying Comfortable With Fibromyalgia

If you’ve been reading this blog for a while you know that sitting in chairs is extremely painful for me. I do have one chair that works pretty well but I usually lay on the couch.
A few months ago I got an ottoman and I wasn’t expecting it to change my life so much but it did. It is at the exact height of the chair but a little bit firmer. It’s even more comfortable than a recliner and now I can sit in it and work on the computer for 2-3 hours at a time instead of just one. What is the most comfortable piece of furniture in your home?

On a Scale of One to Ten

This is a scale that most everyone in the medical field and even the natural field uses. They all ask “On a scale of one to ten, where is your pain level right now?” In fact, it’s the only thing that I can think of that all of these practitioners have in common. So today was not a great day and I asked myself this question and I answered “Owww”. I don’t know where oww is on the scale.

I’m On a List Somewhere

Through my years of having fibromyalgia I think I’ve become more new age in my personality and I think it’s how I’ve maintained a lot of my happiness and joy. I like spending some time thinking about my dream life living somewhere awesome like Ocean Isle beach nc real estate, being a writer, and in a functional relationship. Lately though I seem to have gotten on some kind of new age list where almost every day at least three different people send me revolutionary tele-summits. They all say the same thing “If you’re trying to use the law of attraction and it’s not working this will help you break through”. This has always been a basic belief of mine but through really listening to all of this advice I believe in it less and less. It really can’t do everything and it doesn’t mean that you’re blocked or you need to pay someone $100. It can do a lot but I still maintain that it can’t make you healthy and three tele-summits a day won’t change my mind about that.

30 Day Shred – My Results So Far

I am on day 20 of the 30 Day Shred. So far I have gained about a pound and lost about half of an inch off my waist. I don’t see any other changes but want to keep going just because I took a before picture. I want to get an after picture; even if it’s exactly the same. Doing the same workout so often hasn’t become boring as I’ve needed the practice on my form. It’s definitely an exercise I would talk with a doctor about if you have fibromyalgia because it’s more brutal than most of the other at home workouts I’ve done. From reading forums most people saw at least some results by day 15 but I’ll keep going to see if there is some kind of miracle in the next ten days.

The 30 Day Shred Experiment

I had read some weight loss forums about doing the 30 day shred by Jillian Michaels and I was really impressed with the results and the befores and afters. I have looked into Insanity and P90x but discounted both because I have fibromyalgia and I know certain things will make me sicker without necessarily building muscle.
So I decided to try doing 30 Day Shred, thinking I wouldn’t be able to make it through. I had been working out for close to an hour a day but I had to cut back. Other people may have to worry about nc property tax appeals but I need to find the time to do my taxes and it’s a busy time of year at my job. I chose this just because it’s a 30 minute workout so I figured I at least had a shot. I was surprised when I made it through. I haven’t done all 30 days consecutively because I don’t think that’s smart for any workout. The biggest problem has been my knees, which isn’t usually a problem area for me. I had to take a day off because of my knee. The biggest surprise has been that I haven’t had any of the muscle aches that other healthy people get the next day after this workout. Granted, I am on my last day of level 2 so that may change. Has anyone else tried the 30 Day Shred?

You Know It’s a Bad Fibro Day

I didn’t even realize how bad my fibromyalgia was today but the laptop cord across my legs really kept bothering me. I was getting frustrated wondering why this has never been a problem before. I tried to sit somewhere else or figure out why this would be any different than normal. I tried moving the plug three times before I realized “Oh, the cord always goes across my leg; it’s just that my muscles and skin hurt so much today that I really feel it a lot more.” How do you know that it’s a bad fibro day?

Your Fibro Emergency Kit

I don’t know if you’ve ever been so sick that you haven’t been able to get up to get what you need to feel better but I have. I’ve assembled a little fibromyalgia emergency kit to keep close to me in the mornings. You could put your medicine, books to read, warm socks and water in it. When I’m sick in bed I always wish I for dvd games and a TV in my room. I also try to keep a good book close by in case I’m up to reading.

Fibromyalgia and Time

Sure, people know I’m in pain pretty much all the time. However, it’s easy to underestimate the other aspects of a chronic illness. I wish I could express how much time it takes to be sick all the time. For a lot of people this means extra doctor appointments with less energy. It means extra work to pay medical bills. I look at other people my age and besides their energy I really envy all of the free time they have when mine is usually eaten up by pain or trying to just catch up at work. I picture everyone else smoking la flor dominicana on a beach but I know all 30 somethings are busy.
What are the things about fibromyalgia that no one else seems to understand?

The Real Reason I Wear Dresses

I don’t wear dresses because they look cute. I don’t wear dresses because it’s fashionable. I wear dresses because there’s less fabric clinging to me. It can be looser than capri pants and is cooler in the summer. Sure, I look more dressed up and it’s one of those things that leads people to be confused when they find out I’m sick because my life looks so together. If only they knew the real reason behind it.

Offline Marketing

I deal with internet marketing so much that I rarely think about offline marketing for my websites. Just the other day someone asked me if I had business cards. I didn’t because I rarely need them.
I spend so much time and hassle marketing online and I never know how the search engines are going to change. Offline marketing would be much more stable but would have a smaller audience. I’ve been thinking about starting to sell physical products locally, probably at farmer’s markets. I would need a lot more than business cards though.
I would also need cheap vinyl banner printing at zooprinting.com. Plus, it would need to be able to handle some of the crazy weather that’s in Southern Utah. I think the grommet edges would be the best for that. Do you do any offline marketing?

Weight Loss Update

I think it was about a year ago I decided to lose some of the weight that just seemed impossible to take off. I tried a lot of workouts and ate healthy all year, and I gained a few pounds. I have decided to let this particular experiment go. I just can’t beat it. I don’t know if it’s because of fibromyalgia or my hormones but the weight won’t come off. I’ve decided to just start focus on what is best for my body and working against it all the time like this probably isn’t the best thing.
In the same amount of time I have been on so many programs and forums with people who were doing the same thing as I was but maybe not quite as diligently as I was. I’ve looked at their astonishing before and after photos and even took some “before” pictures of my own. However, I never got to the after picture. Has anyone actually had an easy or at least a normal time of losing weight with fibromyalgia?

My New Stress Management System

I am a pretty high stress person. I work a lot so that I can take time off when I’m sick. Some people have pointed out that I probably get sick from pushing myself so hard but I don’t feel like I really have a choice at all because I have to be prepared for the not so great times.
Last month I decided to make a monthly schedule, complete with time to have fun. I decided that the fun and relaxing was just as important as the somewhat impossible work goals that I set for myself. I know this about myself so I set a range that was 1/3 lower of what I would usually ask of myself. By having some of the stress off I actually got a lot more done.
I worked really hard and got almost all of it done. However, at the end of the month I could feel my body on the verge of falling apart, like it was fragile and held together with spring pins that were too short. I knew it was time to rest but it was already time to start my goals for June. I think the idea will still work if I just put fewer things on the list. How do you manage stress?

Just 7 More Days

It seems like every day lately I have been going to sleep an hour later. I guess it will only take a few more days before I will slowly progress back to a more normal sleep schedule. My body acts almost like I have jet lag even though I haven’t been on an airplane recentally.

Perfect Moments

I’ve found that even on days when I don’t feel good I can still find at least one perfect moment. I was too sick to go on a hike or even walk very far so I went and sat outside for awhile. There was a guy playing this cool harmonica and it made me smile. I wondered if it was something I could learn. He was just playing “Home on the Range” and he wasn’t even good. It was just unexpected I guess and matched the mood of the morning. What was your perfect moment of the day?

Turn Around

I often blog about how quickly a flare can hit. However, for those who currently aren’t feeling well it can also turn around just as quickly. Last week was awful for me pain wise. This week I’ve been sleeping better and I have been feeling so much better too. Granted, I’m just back at my normal pain level, maybe slightly worse. It just feels so much better than it did last week that it’s a big relief. So keep fighting, it does get better.

Just One Tip

If I could give anyone just one tip for fibromyalgia it would be to sleep. Sleep as well as you can. Set a schedule. Hopefully you’ll have awesome dreams about not being sick, or ffinsider, or anything that makes you smile. Whenever my health is really failing it’s because my sleep schedule has gotten messed up in a big way. I know that I blog about this all the time, but I seem to constantly be struggling with it. What is the one fibro tip that you would give to beginners?

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I Know Better

These past few weeks have been really rough for me, and what’s worse is that I know better. I haven’t been sleeping well at all and haven’t had the strength to cook a decent meal or exercise in weeks. Then just last night I realized that I am looking at it the wrong way. I need to be exercising and eating right regardless of how I’m sleeping because at the very least it will help with some of the pain. I know I have figured this out many times before but it’s something that’s so easy to forget when I’m in pain.

It’s Been One of Those Days All Week

It amazes me that a lot of the time I can go hiking or exercise without thinking about it. When the pain is really bad or I haven’t slept well at all there are things that suddenly feel like great accomplishments, such as taking out the trash. I felt like I should have had a picture, not that it merits a iso games downloads but it felt momentous at the time. This is one of those accomplishments I probably won’t brag about too much but at least it means I’m back on my feet literally.

How to Have More Good Days With Fibromyalgia

I shared in my previous post a list of things that cause me the most pain. The best thing that happened to me last year was I got a washer and dryer. I hadn’t thought that carrying the laundry down the stairs and to my apartment’s washer and dryer was a big deal. I just thought that doing the laundry made me sick. I would have to start it on a fairly good day and then know that I’d be in more pain that afternoon and a lot more pain the next day.
Since I got the washer and dryer, I don’t have to think about laundry day at all. I don’t have any residual pain that day or the next day. Sure, I still have my normal fibromyalgia pain, but I don’t have any more then I would usually. I wasn’t sure that it was worth the investment but this adds up to over 60-90 days a year where I’m not a 7 or 8 on a pain scale. If you’re in a lot of pain, make a list of the activities that are making it worse and try to find another way around it.

A Good Day for Fibromyalgia

I was having a good fibromyalgia day and for me that means that I’m still in pain but there are several hours where I can get things done. I was kind of hoping it would happen on the 4th of July so I could sit on direct link and watch the parade. However, I’ll take any good days I can get. I was trying to describe how I was still in pain but only if my muscles were pressed on by clothing or a seat belt instead of having the regular pain all over my skin. I started laughing realize that this really didn’t sound like a good day at all but it was to me.

More Cleaning Must Haves

One tip I have for fibromyalgia is to buy any cleaning supply that means you have to scrub less. This is probably the #1 motion that causes me pain but since I live alone there isn’t anyone to outsource that job too. I was reading about the best cleaning supplies online and kept hearing about The Bar Keepers Friend.
I almost ordered it online which I’ve never done with a cleaning supply before. Wal-Mart started carrying a foam version and I’m not sure if it’s as effective as the powder. It doesn’t work as well on toilets as I had hoped but it has worked better for lots of other tasks compared to other cleaners. It’s also the only repeat purchase of this type I’ve made because I usually look for a better version that will actually live up to the promises it makes on the bottle. How do you keep your house clean when you aren’t feeling well?

The Things You Gave Up

I always try to focus on shifting my energy to something new with fibromyalgia. Before I got sick I had played the violin for years but my hands are now too stiff. I bought a guitar and eboot but they bit into my fingers too much to practice much. I don’t know if I could get a version that would be more comfortable for me. Now I’m thinking about switching to the ukulele mostly because of Amanda Palmer. What little things have you had to give up because you are sick?

What’s Your Biggest Factor?

I have to relearn this lesson over and over again even though I’ve been dealing with fibromyalgia for such a long time. I really need to have it embroidered on a throw pillow that I can look at all the time. Sleep is the biggest thing that affects my pain level and it’s also the most difficult thing to manage. What is the one puzzle piece that changes all the other ones for you?

Quality Family Time

I usually talk about how difficult it is to deal with fibromyalgia with the outside world. However, it also affects the family a lot and creates stress and tension.
Remember to have fun and spend quality time with your family even when you have lots of doctor appointments or the bills are piling up. In my family we play music together a lot. When I don’t feel like going out to do something we can still play the piano and sing together or add in any other instruments we own like the guitar or violin. So, instead of a ticket to a movie or a theme park I may invest in a games for songs that we all know like a Disney version. These small moments together help take off some of the pressure of living with someone with a chronic illness.

T-Tapp Update

I had a lot of hopes for T-Tapp just because so many women in the forums had seemed to lose weight and had reduced pain when dealing with fibromyalgia. For me though, I have been doing this for about 3 months and I have gained weight and my pain level is about the same, it may be about 7-10% better but it’s really hard to tell. I will keep trying for another month or so before switching to a different workout.

How to Keep Your Hope Up

This is an essential principle both for fibromyalgia, but also when working from home. Creating websites requires a heavy dose of optimism as well as patience and I often find both of these wane depending on how much I earn. It’s always something. My rankings either drop or sometimes my computer isn’t working right and I need something like iso games tips.
When this happens I usually go and watch a TED Talk, something about technology. Then I get so excited to be a part of it, even in a small way. I really see where the internet could go in the future. How do you stay motivated to work during those months when you aren’t getting the results that you want?

Communication and Fibromyalgia

I only know about having fibromyalgia from my perspective.Ii don’t know what it’s like to live with someone with the disease, except for myself. I think it would take a lot of time just to communicate whether it was a good day or a bad day. When I’m having a good day, rare though they are, I suddenly want to go do all the fun things that usually I turn down because I don’t have the energy for it.
I guess I’ve trained people about all the things I can’t do, or I get tired of even being asked honestly. However, when a good day comes round I want to go have fun before the pain sets in again. That must be really confusing to most people. How does your life change when you have a good day?

To the Newly Diagnosed

I will be having my fibro-versary next month. It will either be 18 or 19 years since I got sick. During that time I’ve met and heard from a lot of people who are just starting out and don’t know what to do next. My biggest piece of advice would be “It gets better”. You find the right doctors and the right medicine and your life changes. Maybe it isn’t the life you had planned on, but it can still be a good life, a very happy life. Probably that life will have pain in it and a lot of adjustments but it will be just as beautiful as anyone else’s. It gets better.

The Exercise Experiment….Again

Ok, so I know I said I wasn’t going to do any more exercise experiments but I just can’t look at the number on the scale anymore. I also know I said I wasn’t going to worry about that number, but I’m fine if it stays. If that’s really the best I can do, I understand that I have a chronic illness, and I honestly like the way I look.
However, I’m not ok with just being ok with the number if it can possibly budge. I’ve decided to go back to Tiffany Rothe workouts on Youtube. I kept these up for several months, but they made my pain level increase so much so I dropped it and went with a gentler workout. I’m going to see if I feel good enough in the summer time to get through at least a few weeks.

T-Tapp Update

I decided to try out some t-tapp workout videos because a few people in the forums had mentioned that it helped them with their fibromyalgia pain. Since I’ve been sick for a very long time I know better than to get my hopes up but I needed a new workout anyways.
I’ve been doing this for about three months and have gained weight and a few inches too. I have noticed a slight decrease in my pain level. I’m going to keep trying this for a few months to see how it progresses.

Random Fibromyalgia Inspiration

When you’re chronically ill it’s really easy to start thinking that life isn’t going to get better or even that you can change anything in your life. So when I find inspiring quotes I do like to share them. This is from the Wizard of Oz. Glinda says it. I wasn’t even watching the movie and it still made me cry. The quote is:
“You’ve always had the power my dear you just had to learn it for yourself”
I say this to myself when it seems like my websites aren’t working. Then I find something I can have control over like getting iso or a site redesign. What inspires you to stay positive and keep trying?