Saturday, August 20, 2011

Lost Blog Posts

I have discovered that I am an absolute dummy.  I’m sure this is no surprise to some people.  Last week while I didn’t have a lot of access to internet I wrote 10 blog posts for my Constant Fear blog and was going to publish them when I had internet and somehow I managed to completely lose them. They’re just gone without a trace.  Everything else was auto-saved when my laptop restarted itself but not those 10 posts.  I had written posts for this blog and for Surviving Fibromyalgia and I found them right away, but the Constant Fear posts just disappeared.  Now that I’ve already done the rewrites I’m sure they’ll pop up somewhere and force me to say very bad words, but what’s done is done.

There’s always things like this in life that make us mad, make us cry and make us feel defeated, but it’s always important that every time we hit these hurdles that we remember that we’ve got over them before and we’re going to get over them again.  No matter how big or small, with enough determination, we can get through whatever life wants to throw our way. 

I hope everyone is having an awesome Saturday. Be brilliant!

Friday, August 19, 2011

My Safe Place

Facebook has become my safe place to express my feelings about being sick because more than half of my friends on there know what it’s like to live with a chronic invisible illness. Most of my friends on Facebook have either Fibromyalgia, Chronic Fatigue Syndrome, ME, Rheumatoid Arthritis, Lyme disease, Multiple Sclerosis, Lupus and Polycystic Ovary Syndrome. (I know there are more, but my mind went blank.) Some of them, like me, have two or more.  

When I started Facebook it was just like any other social network, but over the last two years it has turned into a support group that has gotten me through so many bad days.  It’s hard not to feel crazy when you have one of these illnesses because the symptoms can be totally off the wall, so when you have so many other people who talk about feeling exactly the way you do it helps to ease your mind and lets you know every day that you’re not alone in this battle. Especially when you have so many people in your life who don’t believe that you’re really that sick and that exercise is all you need to live a normal life. My question for them is if exercise is going to save me then why did I ever get sick in the first place?  I was an extremely active kid and as I got older I worked out almost every day.  I was skinny remember?  It wasn’t until I started getting sicker that I started slowing down.  You try living normally when it feels like you’re body is giving up.

I tell people that if they really want to get to know me then just had me on Facebook.  Look at my status updates and my wall posts and you will understand my world a little better.  If you really pay attention then it will be easy for you to see why I get angry, sad and sometimes want to give up.  This life isn’t an easy one, but it’s mine and if you really get to know me then you will see that I do everything in my power to make it the best it can be.  You think I dwell on being sick when actually my actions are all about being understood and learning to live despite being sick.

The greatest thing I’ve learned in this journey is that the physical pain may be constant, but the emotional pain doesn’t have to be.  I can still live…I can still be happy…I can still be me-I’m just me with Fibromyalgia now and that’s okay with me.  It’s all part of the master plan.  If you want me to deny that I’m sick and pretend like I can do everything you can do then there’s no place for you in my life anymore.  Denying that I’m sick is denying who I am and I won’t do that for anyone.  I refuse to lose myself again.

So for all those special people not only on Facebook but in my life…you know who you are…thank you for just letting me be me and not ever questioning the way I live my life.  It’s because of all of you that I can continue to move forward and grow.

I hope everyone has an awesome day. Be brilliant!

Monday, August 15, 2011

For My Friends with CFS

You Know You Have CFS When...
Author Unknown
...when you are cautioned to slow down by your doctor instead of by the police. have a choice of two temptations and you choose the one that will get you home earlier. realize that caution is the only thing you care to exercise. don't worry about avoiding temptation. With CFS, it will avoid you.
...getting lucky means you found your car in the parking lot.'re sitting in a rocker and you can't get it started. don't care where your wife goes, just so you don't have to go along. wake up with that morning-after feeling, and you didn't do anything the night before.
...the doctor says "I have good news and bad news -- the good news is that you are not a hypochondriac..." go to make toast and nothing happens. You've plugged in the can opener. say to your wife, "Good morning, Mary"...and her name is Sharon. have to sit down to brush your teeth in the morning. become exhausted trying to blow out the candles on your birthday cake. forget your twin sister's birthday. realize that you just sprayed spot remover under your arms instead of deodorant. put both contact lenses in the same eye.
...there is a big basket at the bottom of the stairs full of stuff waiting to go upstairs. -- David White takes you longer to get up the energy to go to the store than the completed task takes you. -- sassyj feed your pets, then sit down and try to decide if it is really worthwhile to get up again just to feed yourself. -- Sandy Flake cut off all your hair because you're too tired to wash/style it anymore. -- Shyrell Melara go to the store to get some cosmetics and write your check out to "Wallpaper" instead of "Wal-mart." -- Sheri (HA! I do this ALL the time! T.J.)
... to unlock your car, you pull out a garage door opener from your purse, aim it at the key slot on your car door, click away, and then stand there in a stupor, wondering why the door wont open. -- Sheri
... you decide that tap water is ok, because the new gallon jug of bottled water is on the floor and it's still full. -- Elsie
... you go upstairs to have a bath, only to realize the bathplug is you decide to have a bath tomorrow instead. -- gossamer
... you continue watching Martha Stewart reinvent the brick because the remote is out of the hand grope area. -- Christa (How true, How true! T.J.)

Wednesday, August 10, 2011

Re-Post: Letter to "Normals"

This is still one of my favorite ways to explain how Fibromyalgia affects us so I'm re-posting it for the new people in my life.

These are the things I would like you to understand before you judge me...

Please know that being sick doesn't mean I'm not human. I may spend most of my day flat on my back and I might not seem like great company, but I'm still me stuck inside this body. I worry about school, work, family and friends and I'd still like to hear about yours.

Please understand the difference between "happy" and "healthy". When you've got the flu you probably feel miserable but it will pass. I've been sick for for so long that I can't afford to be miserable all the time, in fact I work hard at not being miserable. So if I sound happy, it means that I'm happy, it does not mean that I am well. I may be in pain and sicker than ever.

Please, don't say, "Oh, you're sounding better!".
I am not sounding better, I am sounding happy. If you want to comment on that, you're welcome.

Please understand that being able to stand up for five minutes, doesn't mean that I can stand ten minutes, or an hour. It's likely that five minutes has exhausted my resources and I'll need to recover - imagine an athlete after a race. They couldn't repeat that feat right away either. With a lot of diseases you're either paralyzed or you can move, but with Fibromyalgia it gets more confusing.
Please repeat the above paragraph substituting, "sitting up", "walking", "thinking", "being sociable" and so on ... it applies to everything. That's what a fatigue-based illness does to you.

Please understand that chronic illnesses are variable. It's quite possible (for me, it's common) that one day I am able to walk to the park and back, and the next I'll struggle to reach the kitchen.

Please don't attack me when I'm ill by saying, "But you did it before!".
If you want me to do something, ask if I can and I'll tell you. In a similar vein, I may need to cancel an invitation at the last minute, if this happens please don't take it personally.

Please understand that "getting out and doing things" does not make me feel better, and can often make me worse. Fibromyalgia may cause secondary depression (wouldn't you get depressed if you were no longer able to participate in life?) but it is not caused by depression. Telling me that I need exercise is not appreciated or correct - if I could do it, I would.

Please understand that if I say I have to sit down/lie down/take these pills now, that I do have to do it right now - it can't be put off or forgotten just because I'm doing something. Fibromyalgia does not forgive.

Please understand that I can't spend all of my energy trying to get well. With a short-term illness like the flu, you can afford to put life on hold for a week or two while you get well. But part of having a chronic illness is coming to the realization that you have to spend some energy on having a life now. This doesn't mean I'm not trying to get better. It doesn't mean I've given up. It's just how life is when you're dealing with a chronic illness.

If you want to suggest a cure, please don't. It's not because I don't appreciate the thought, and it's not because I don't want to get well. It's because every one of my friends has already suggested every theory known to man. I tried them all, but quickly realized I was using up so much energy trying new treatments I was making myself sicker, not better. If there was something that cured Fibromyalgia, all of us would know about it by now.
If you read this and still want to suggest a cure, submit it in writing but don't expect me to rush out and try it. If it is something new, with merit, I'll discuss it with my doctor.

Please understand that getting better can be a slow process. Fibromyalgia entails numerous symptoms and it can take a long time to sort them all out.

I depend on you - people who are not sick for many things but most importantly, I need you to understand me.

The above text may be printed freely, and shared as needed providing all content is kept intact. No other person shall ever publish this work citing themselves as the author.

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