Sunday, February 22, 2015

SHAME

It has been my experience that people that have been diagnosed with Fibromyalgia feel ashamed or are shamed. I used to be very leery myself  of who I told, for fear of being shamed.

Most people had not heard of this new "AWFUL"; and a lot of the ones that had would tell me that "it was in my head" or "that's not a real disease or diagnosis" ;  that "...It was just made up because the doctors didn't know what else to call it or label it". You may not have been educated enough on the subject yourself, because quite literally the doctors truly did not know much more. There is still a wide fluctuation on what scientists and doctors will agree and disagree as being the root cause of Fibro.

Flash forward 20 years or so and it is a little more acceptable now. People still do not understand, what a flair up is, or when you say "I'm sorry, I can't today" at that precise moment. So they can't see why you can't possibly get up and go. Because this is not a visible disease. People can't see your pain, There is no external evidence of fibro.

Fibro does not affect everyone the same. There are so many different  ways that fibro can rear its ugly head. Some of the symptoms are, but not limited to: pain, which is not even a localized pain; flu like symptoms, absolute exhaustion (fatigue), irritable bowel syndrome (IBS), depression and headaches. And one of my favorites: fibro "fog", or memory loss and confusion. The "dropsies", meaning your hands loose control and stop working (for example, when you are holding your favorite mug full of coffee). Super sensitive skin, which feels like your nerves are on top of your skin, burning like your on fire; it's not the same feeling as having a temperature. Sometimes it is in patches but other times it can be the whole body. Then, there is the joint paint, also not always in the same place. And another favorite is "chasing the pain". It runs a gambit over your body: you don't know which symptom to treat first. There are a lot of us who have been bed ridden for a day or so and quite possibly years: the pain can be so intense that you just simply can't walk or even possibly crawl. There are times that no amount of medicine will make the pain go away. The long term (chronic) pain in turn causes the depression. Let me explain; when you are in pain for extended periods of time without relief, except for sleep, your mind will give into it or give up on ever feeling better, which causes the depression.

"Except for sleep...". Also there is difficulty sleeping. It can swing from one extreme of the pendulum to the other. Either there is excessive sleeping or no sleeping, and alternately when and if you do sleep, it is not a restorative sleep. I personally have done both. Chronic fatigue accompanies fibro most of the time. My theory is that physically dealing with the chronic pain exhaust you. It couldn't help but to. Anxiety is another symptom. Again, when you are not sleeping well, your mind and body do not get the restorative sleep that your body NEEDS to function correctly. When you are exhausted you make bold or rash decisions, your nerves will eventually feel fried and you may lash out at those around you. Or, on the contrary, you keep it ALL IN. Either one of those situations, individually or combined, eventually lead up to anxiety. And pain lends itself to helping in the hand of anxiety also.

Often, any one or all of  these symptoms can be misdiagnosed on either side of the coin. "Managing" (poor word choice: there is not possible managing of something like this) your Fibro is very important. You may need everyone's help. For example, if you are on heavy medications you would probably need someone to help manage your medications. Don't be hard on yourself. Fibro "fog" can make it very tricky at staying on a regular medication routine. I have a few suggestions that I will hit on in a different post.

 It really helps to have a support group. People that are gentle with you and can support you while your down. Learn to treat yourself with as much care, as you would for a sick child that you have cared for. You are tender and fragile in this state, and if you do not care for yourself it WILL agitate a lot of your symptoms making them worse, A LOT WORSE. Do not accept being shamed by someone that has not walked in your shoes. They have no idea what you are up against on a daily basis.

Next time I will expand more on tools that we can use to help keep the pain at a minimum.                                                          

Tuesday, February 10, 2015

Little Boxes Of Joy Questionare

What is her favorite:
Color
Movie
Television show
favorite actress or actor
Style of music, her favorite radio station?
Holiday
Book
hero
drink
meal

What would be her dream career?
Chocolate or potato chips? (favorite food when she's in need of a pick me up)

Steam Punk or Shabby Chic? (what is her decorating style?)

Does she have a hobby or does she like to craft and if so what ?

Friday, February 6, 2015

Boxes of Joy (clarification)

So, I'm not sure that I made my intentions clear. Sometimes what sounds good in my head doesn't always seem clear on paper.

My "Little Boxes of Joy" are FREE to you. There are no charges. This is something that I am wanting to do as MY Give Back. I have felt led to do this. And thankfully Mr. Angel is on board. The longer you stick around you will understand why I call him My Angel.