Archive for Other

Letter to Normals (Part 2)

Everyone with fibro has different symptoms. “There is no way to just take a pill to make it go away, even for a little while.”  I take Aleve and I know I overuse it. I know I take more than I should and I know it’s bad for me, but without it there are times I can’t walk, brush my teeth, wash my hair, or even get dressed or out of bed. Aleve barely even helps 30% and barely takes the edge off, but if I take enough it usually helps me function. “That’s about the best I can hope for. “ My rheumatologist will not give me anything stronger, but I try not to take too much Aleve because I don’t want to hurt my body even worse. However, there are times when no matter how much medication I take, nothing helps and there is nothing I can do about it. “That’s just the way it goes. “

“There’s no cure for fibromyalgia and it won’t go away. If I am functioning normally, I am having a good day. This doesn’t mean I’m getting better because I suffer from chronic pain and fatigue for which there is no cure.” However, just because I’m functioning normally and seem happy, that doesn’t mean I am not in any level of discomfort or pain. “I can have good days, weeks, or even months.” But I will have fibromyalgia for the rest of my life. There is a certain percentage of people who get fibromyalgia and it progresses to get worse, and I hope I am not in that group. I have days where I feel great in the morning, and then all of a sudden I’m in a lot of pain and have absolutely no energy. I am absolutely exhausted. It can go the other way, too. I have times when I feel sick for an hour or two and then it goes away or vice versa. Just because it doesn’t last or sometimes lasts too long does not mean I am faking it. Like I said, I cannot control the way I feel. When I am in a lot of pain or even just because it is a symptom of fibro, I may get very irritable. If this happens, I will most likely be very quiet. This does not mean I am mad at you or hate you. I am just very uncomfortable. I know if I’m not quiet I may not be very nice and I don’t think you deserve to be treated that way. I’m just trying to cope with my condition in the best way I can. I don’t want it to affect your life negatively by having me treat you in a not-the-best way.

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Never Have Another Bad Day!!

If you have not figured it out yet, one of my biggest passions in life is acting.In one of my acting classes a man shared this with us and I have never (and will never) forget it…

He said, “I never have a bad day. Ever.”

What are you talking about we thought? It is impossible not to have a bad day once in awhile. You can’t be happy all the time. Of course, he is not happy all the time…

but the truth is:

NONE OF US EVER HAVE A BAD DAY!

Every day is a 24 hour period of time. If you say that you have a “bad day,” then you are generalizing. There is no one that goes through a day where not one single thing goes right. There has to be at least one minute or second that something goes right which does not allow the whole day to be bad.

At the least..think about this:

  1. Did you get to work/school safe?
  2. Are your loved ones alive and well?
  3. Are you safe and healthy?
  4. Do you have food on the table?
  5. Do you have a job?

If you are still not convinced, think about this:

The majority of us sleep at least some portion of the day. When you are sleeping, you are not even able to make a judgment about whether things are good and bad in life. It is some level of relief. Thus, if you sleep for one hour of the day and then literally everything in your whole day and life crashes down from the moment you wake up…You had an hour that was at least neutral. Promote “neutral” to “good” (“the glass is half full” type of thing) and at least some portion of your day was good. You can not say it is bad because that would not be true.

The truth is:

none of us have bad days.

He said:

“If I have even one good second in my day, then the whole day was not bad.
I may have a bad minute, I may have a bad hour, but I never have a bad day.”

 

My Zig Zag Days

Today is Friday. Wednesday, I was in a lot of pain. Then, Thursday wasn’t too bad. I was achy but it wasn’t a day full of fibro fun. Then, today I am in a lot of pain again.

This is what I call my zig zag days.

I am not having a flare..I don’t think, just a fibro fun day. When I have days that are good in between my bad days, I call them my zig zag days. Then, a zig zag mini-flare is when it is like a pattern of good days and bad days in a pattern.

This is quite frustrating. Sometimes I wish the bad days could all come together so that it wouldn’t be false hope.

However, on the bright side, at least I get a break sometimes.

I hope you all have a great weekend!

Lyme Disease and Fibro..hype or reality??

For those of you who are active on forums and reading blogs on fibromyalgia, you have surely seen at least one post or comment with someone saying that fibromyalgia does not exist and it is actually lyme disease.

Is this true?
Well, I surely do not know.

I was tested for lyme, like nearly everyone else with fibromyalgia in order to rule it out. Needless to say, the test came back negative. I told the rheumatologist and other doctors that I had never had a tick. Ever. There was no way it could be lyme.

Then, today out of the blue I remembered. I was in 6th grade and sitting in the back of the classroom. I ran my fingers through my hair and I felt something. What was it? I tried to run my fingers through it thinking maybe someone threw a piece of paper at me or maybe it was just a leaf. I couldn’t get it out. I tried again and again pulling harder every time. Eventually, I got it out, it WAS a tick. I got scared and tried to throw it on the ground trying not to call attention to myself amidst my panic.

Did all of the legs come out?
I don’t know.
Did I end up getting a bulls-eye rash?
I don’t know.
Could I have lyme disease?
I don’t know.

However, here is what I believe to be true:

  1. Fibromyalgia is a real condition and so is lyme disease
  2. There are people with both lyme disease and fibromyalgia but there are also people with only one.
  3. Fibromyalgia is NOT always lyme disease no matter how inaccurate people claim the tests are for lyme disease.

Do I think, honestly, that I have lyme disease?
Absolutely not.
There are certain symptoms that go along with fibromyalgia, such as the tender points (or trigger points, depending on what you call them), that are not the same as lyme disease. Even though apparently there is new criteria (…sounds like I’m studying for an exam) for diagnosing fibro that does not include the trigger point test according to a fibromyalgia magazine from last year. I do not quite understand why they have taken this out, but perhaps that is a topic for another blog post. Anyway, there are certain symptoms in both conditions that do not overlap so they must be separate, no?

I would love to hear what you think.
Why not leave a comment and share??

Looking Good, Feeling Good

There is a real connection with the way people look and the way they feel both physically and emotionally. There are endorphins that are released to make people feel good similar to the way people feel good when they are exercising.

I understand that with fibromyalgia it is just not possible to put a lot of effort into your appearance every day. I can almost never do my hair because my shoulders hurt too much. Instead, I will try to do my makeup in a way that makes me feel good about the way I look. Sometimes me hands hurt too much and I can’t do my makeup, but I try to do as much as I can. I am trying to learn more about fashion and style and wearing clothes that I feel confident in. Even little things like having your nails polished or wearing a bracelet. Little things go a long way. I try to do little things to help myself feel better. I, personally, could definitely tell a difference because my attitude was different. Did all of my pain go away? No. Did I still feel symptoms of fibromyalgia? Absolutely. However, it did not completely drag me down and cause me to feel more depressed.

There are always little things you can do to feel good. Here are some ideas:

–          Exercise

–          Eat healthier. (Skip the cookies. Try an apple.)

–          Get a mani/pedi

–          Give yourself a facial

–          Wear a dress

–          Apply mascara

–        Go shopping!

What do you do to feel good?

Leave a comment and share!

I have fibromyalgia, but I am not a fibromyalgic.

What? How can you have fibromyalgia but not be fibromyalgic, right?

WRONG!

There is so much power in the way sayings are phrased. How many heated discussions are truly the result of a miscommunication? How many times have you said something that “wasn’t what you meant”? The word “fibromyalgic” is a work to define people.People are far to complex and unique to EVER be defined by ANYTHING!  I believe that everyone and everything is beautiful in their own way and for different reasons. I choose to never “define” myself because there are no words, or combination of words, that will ever be able to fully capture me as a person. It is impossible.

Thus, I choose to say that I have fibromyalgia or that I am a person with fibromyalgia. I am not, nor will I ever be a fibromyalgic. Although my condition does affect my life in a great way, I am still me and much of me is so far passed fibromyalgia that it could never EVER describe me a person.

Fibromyalgia is a PART of me. It is not who I am. It is not who you are either.

You don’t have to give into that.

 

Life is Beautiful Challenge

I challenge you to make a change.

Depression is so common with fibromyalgia because of the differences in chemicals in the brain. It does NOT have to be this way. When people are in a state of clinical depression or depression of any kind, they are blind to the beauty in their life and the world surrounding them. This beauty is surrounding each and every one of us.

This was a technique I learned in an acting class and I am going to share it with you today:

When people fall in love, it is a natural high. Every thing in the world seems wonderful and happy. It is like nothing can bring them down. You don’t have to have a significant other to fall in love with every day. There are things all around you that you can fall in love with. Here is how it works:

  • Start with one thing in your day that inspires you. It can be a loved one, a pet, a flower, a sunset, or anything else that lets you feel good. Fall in love with it. It sounds silly, but you can do it.
  • Then, try to do this 5 times a day. Find the beauty in the world around you. Fall in love with all of the wonderful things surrounding you.
  • Turn the love on yourself. Find the traits and characteristics about yourself that are beautiful and wonderful. Love them. The things that you do not like, embrace them! They are the things that make you unique and beautiful. As with almost all insecurities, there are people in the world who would love to have the things that you dislike about yourself. Do not waste time being negative. Try to love everything about yourself. Accept and embrace the things you do not like about yourself. Learn to love them.
  • The ultimate goal is to fall in love with life. No one is ever going to live the same life you life or have the same experiences as you so make the most of your life. Every moment will only come once and you can never get it back. Embrace yourself. Embrace the moment. Embrace you life…it is beautiful.

This is possible even with a chronic illness.

Give it a try.

Love your life.
Embrace yourself.
Life is beautiful.

People STILL think fibromyalgia is fake!

It is not a shock to hear that there are still people who think fibromyalgia is fake. It is one of the most common complaints of people with this illness.  Despite the studies that have been done, it is still difficult for some people with fibromyalgia to even get a diagnosis. The studies have demonstrated the differences in the brain of people with fibromyalgia. It is so discouraging to hear people say that if you just don’t think about the pain, then it won’t be there because it is all in your head. I worried for a long time that if I told anyone that I had fibromyalgia they would immediately dismiss it because of rumors they may have heard in the past.

There was a time that I felt all alone with fibromyalgia. My family had made negative comments regarding fibromyalgia and I was not sure if they were joking or not. It was so upsetting to hear things and doubt whether my own family even believed me that there was something wrong with me and beyond my control. As a result, I did not see the rheumatologist for over a year and I managed my pain in silence and self-treatment. Eventually, they realized that I was still hurting and hurt by the comments that had been made in the past. Since then, my family has all been very supportive. At times, I still feel like I am alone in my battle with fibromyalgia but I know that I will have support when/if I need/want it.

I feel like the people in my life who do not think it is fake, do not fully understand it. Sometimes I wonder what people think about me having fibromyalgia. What do they think it is? Do they think it is going to kill me? What do they think I go through? I have been very open, but many people do not like to ask questions. I feel constantly misunderstood by several people in my life. I just hope that one day if my friends have questions, they will ask me. Some of them still do not even know.

I truly hope that all of you with fibromyalgia have supportive family and friends in your life so that you never have to feel alone with fibromyalgia.

I am sure that everyone with fibromyalgia has had some experience(s) with people thinking fibromyalgia is fake. Share your story by leaving a comment.

Even in my sleep…

I am exhausted right now.

Last night I kept waking up due to pain in my hip. I do not know how people can say it is fake when it actually wakes me up in my sleep. There is absolutely no way that I, or anyone else, could make that up. When I do not wake up, I have had people tell me that I groan in my sleep like I’m in pain. I do talk (and laugh) in my sleep and people have several funny stories about the different things I say in my sleep. Sometimes they hear me say things like “Ouch”, “I’m hurting”, or “This really hurts.” When I hear about it, I think it is funny and it makes me laugh.

Then, the humidity was pretty high today and I’ve been in pain all day. I have tried taking Aleve and it barely even takes the edge off. I am going back to the rheumatologist in about two weeks and hopefully he will give me something stronger.

What do you take for pain? Leave a comment and let me know.

Top 3 Fears with Fibromyalgia…

I find that, as with any illness, there are fears associated with my condition. Since different people are at different stages of their life, these fears may not be the same for every person with fibromyalgia. However, I am sure that there are other people that share these fears with me. Here they are:

  1. Family/Work – I am still in college so my life has barely even begun. One day, I plan on having a family and my own house. Things everyone wants and dreams of having when they are young. However, I worry about being a mother with fibromyalgia. What if I am having a flare and cannot take care of my children? What if, instead, my children have to take care of me? I want to be a great mother and give my future children all they want and need. I want them to grow up and thing that I was a great mother to them. I want to have a career and be  able to provide for them and myself. I do not want to end up on disability like so many other people with fibromyalgia.  I don’t want fibromyalgia to stop me from achieving all that I deserve and desire in life.
  2. Weight – Perhaps this is because I am young, but I do worry a lot about my weight. One of my biggest fears when I was diagnosed was becoming overweight. It is so common in people with fibromyalgia through no fault of their own. According to The Idiots Guide to Fibromyalgia, the average person gains 35 pounds in the first year they are diagnosed. I, personally, did not gain that much weight. However, I wonder if in the future I will.
  3. Future Illness – There are so many people who are diagnosed with fibromyalgia only to find out years later that it is something far worse. In comparison to all of the diseases people need to get tested for prior to getting the diagnosis of fibromyalgia, fibro is a blessing. I do not want to get even sicker one day and to find out that it was far worse than I ever could have imagined…

Can you relate?

What are your biggest fears with fibromyalgia?

Share them. Comment. 🙂

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