Wednesday, April 23, 2014

Why don't people see me?



One of my biggest frustrations with chronic illness is my new found super power- invisibility. I feel like people don't ever see me. Just like everyone else I want people to see me, acknowledge me, and accept me. I've always been a behind the scenes kind of person and I've never liked the spotlight, but sometimes I think the people I interact with on a regular basis are hardly aware that I am there. I'm sure if I were jumping up and down and screaming they would notice, but quite frankly I do not have the energy to do it.

I want people to know me. I don't want them to think of me as that sick person who always needs something or is always having a medical crisis. I want them to think of me as being kind hearted, caring, fun, quietly rebellious, sarcastic, adventurous, and little bit crazy because that's who I am. Instead people seem to move around me but never approach me or acknowledge me. If people fully realized the courage that it takes for me to just step out my front door maybe I would be visible again. If they knew all the preparation it took for me to present a good face to the world, they might acknowledge me. I can only come to the conclusion that they don't know me.  So that leaves me with  few choices a) Become an attention hog and try to get people to acknowledge my presence b) Don't let it get to me and focus on the few people who do really know me and appreciate me. I choose answer b of course. I accept my power of invisibility and I refuse to let it bother me any more. After all invisibility is a super power, I'll just have to make sure I only use it for good.

Thursday, April 17, 2014

Top five reasons fibromyalgia is the best "fake" disease



Top five reasons fibromyalgia is the best fake disease (okay syndrome, whatever, it's not real anyway)

1. You get to lay in bed all day and eat marshmallows while watching Mexican soap operas. There is certainly no pain involved, because after all you are faking it. Really it's great to watch everyone else go on with their lives while you sit in bed hopped up on painkillers (you are a druggy after all). If only everyone could be so lucky.

2. You get to get to see your doctor every single month. It's so much fun to go sit in the waiting room for hours in those stiff chairs, it certainly doesn't exacerbate your condition at all. It's even better to be regularly reminded that you are fat and that you need to exercise more and that your pain is just all in your head. Everyone needs to be told on a regular basis that they are fat and that it's their fault.

3. You get to take lots of prescription medicine which costs a lot and works very little. Nothing can beat taking more pills than an 80 year old. There is just an amazing thrill of looking and your 10 bottles of medicine and trying to remember what to take when. It's even better when you have to go to the pharmacy to buy a pill organizer and the check out person asks if you're buying it for your grandma. It's a good thing this fake disease is preparing you for when you are an old person, you're going to be a pro at this "sick" thing. One day all your friends in the nursing home are going to come to you for advice.

4. You don't have to socialize with people ever. You can actually go weeks without seeing anyone! As everyone knows, it's great to stay home all day every day completely immobilized. After all, no one actually likes going out with their friends and having fun. Really we all just want to stay home in bed and not experience anything ever! It's truly an introverts dream.

5. You don't have to work, you get to sponge off others who never make you feel guilty about it at all. You get to spend years fighting to get disability benefits if you can afford a disability lawyer, which you probably can't because you aren't working and are mooching off others. Oh well, what's wrong with mooching a little bit more?   If you can get disability benefits you get to live the life of luxury on $900 a month. You really get to live high on the town with that kind of money, thanks taxpayers!  And, while you're waiting for appeal after appeal for your disability to go through you get to sponge off whomever you want! It's so awesome to have to ask other people for money and for them to try to make you feel guilty about it. You never feel guilt though because you have no conscience. You truly are the luckiest person in the world.


Tuesday, April 15, 2014

5 reasons to take an epsom salts bath

I've been taking Epsom salts baths for a while. At first I t was skeptical of the benefits, but when I found out that athletes use them all the time after a particularly hard work out I figured they were legit. I ran across this article here which gives the top five reasons for fibromyalgia patients to take Epsom salts baths.



Monday, April 14, 2014

Getting through the bad days



I am coming off a week of absolute craziness. I knew I was overdoing it, I knew I was going to have to pay for it, and I knew I was going to be grumpy and frustrated when the crash came. Sure enough I crashed and yes, I am very grumpy about it. I know I'm supposed to have a positive attitude but I just don't. I'm grumpy enough that thinking about being positive just makes me more grumpy.

Sometimes I just want to be allowed to wallow in self pity and a negative attitude. So I woke up this morning with a bad attitude and I was determined to let myself keep it without feeling guilty. However, one look into my sons big brown eyes threw me off as he asked me "Mommy are we going to do something fun today?" Dang it, he just won't let me sit here and feel sorry for myself. So, this is what I decided. I am going to have a pity party but I'm not going to sit here and think about what I am missing or how things could be different. I'm not going to torture myself about how my house could be cleaner or I how I would have more friends or I could be a better mom if I wasn't sick. I'm just going to let myself be a little sad that I can't do what I want to do, but that's it. I'm going to be sad that I don't have control over my body, but I'm not going to torture myself with what-ifs. This means I've banned myself from social media, it just reminds me of what I can't do and that's not healthy during my pity parties.

It's raining and grey outside which is not improving my mood, so now I'm sorting laundry and feeling annoyed with the weather. If it were sunny I'd go outside and push my son in the swing and enjoy how the sunshine can almost always improve my mood. But since the weather is not cooperating today, I'm going to try to keep myself as busy as possible so my sadness doesn't slip into depression because I know myself and I know if I watch tv and eat cookie dough my sadness with quickly spiral our of control. Still I know it is okay to be sad, not even healthy people are happy and positive all the time. So I am going to focus on getting through this hard day and after that I will continue  to take one day at a time.


Friday, April 11, 2014

I can do hard things


Things have been going to crap lately. Not for me especially, I'm pretty stable at this point (minus the kidney stones that's just something small my body likes to throw at me to keep me on my toes ) but for other people. It seems like everyone I know is getting hit with something whether it's illness, unemployment, marriage issues, death, disabilities, or difficult children. As I thought about the adversity my friends and family have been facing I was reminded of my motto when things were at their worst, "I can do hard things."

I've changed in a lot of ways since I became sick. This is a phrase that I live by now. When things get really really tough I think to myself "I CAN do hard things."  It reminds me that I am strong and capable. Sure I could choose to give up and refuse to go on living my life, but I choose to be strong

Before I got sick I thought "hard things" were the heater breaking or friends being unkind. Those things can be hard, but I've learned to roll with the punches a bit better and not sweat over the small stuff. This is an unexpected blessing of chronic illness, you learn what is truly important. What is truly important to me is my family and friends. 

The other day when I was feeling terrible and my husband was off helping someone else with their problems (he's a volunteer leader at our church so he spends a lot of time visiting with people and helping them if they are in need of anything) I was feeling pretty selfish, I needed him to be home, not off helping someone else. Then I felt bad for being selfish and for wishing that I didn't have to deal with my terror of a child by myself (seriously, he pulled the phone jack off the wall and stripped the wires, we were lucky he didn't set the house on fire). So I decided I needed to fix my horrible attitude and I reminded myself that I CAN do hard things if I need to. I have been blessed in so many ways, I need to focus on that instead of thinking "poor me, my life is so hard." People ask me how I can possibly deal with things, and this is really how I deal because it works for me. 


* This is a repost but with updates because life has been crazy, see original post here

Wednesday, April 9, 2014

Chronic illness and going to college

I read an article here about how college students with chronic illness face an uphill battle while trying to get their education. Many colleges are equipped to assist students with physical disabilities, but not students with chronic illness whose disabilities are invisible.

This reminded me of my college experience where thankfully I was completely healthy. I attended Texas A&M which I loved, but it is not a friendly campus for chronic illness. The grounds are huge and even though I was physically fit I wore myself out running from one class to another, many of which were more than a mile apart. There was a bus system but quite often the buses were too full and I would be forced to sprint to my classes to get their on time. I can't imagine navigating the campus with a chronic illness, just thinking about all the running I used to do makes me tired. There is no way I could do it now with the condition my body is in.

Another problem for students with chronic illnesses is strict attendance policies and professors who could care less. My major classes had a strict three strikes and you're out attendance policy. You could miss a class three times a semester and that was it unless there was a death in the immediate family. I also had more than one professor who would not accept assignments late, ever. Even if someone close to you died it was too bad. This policy was very irritating to me at the time, but looking at it through the lens of chronic illness it's just unbelievable. An estimated 7% of young people deal with chronic illness, are they to be denied an education because colleges refuse to offer flexibility? I'm lucky enough that I was able to graduate before I got sick, but others have not been so fortunate. Colleges need to develop ways to offer services to their chronically ill students just as they offer services to those who are physically disabled. Professors need to find a way to be more flexible and understanding so students who become ill aren't forced to withdraw. Colleges and students with chronic illness should work on developing policy so that students don't have to depend on individual's good will.

Book review- A Sensible Arrangement

I was provided this book for free by the publisher in exchange for a review.

A Sensible Arrangement

Marty is a widow from Texas who is looking for an escape so she agrees to marry Jake Wythe, a widower from Colorado whose boss wants him to get married.  Their marriage was an arrangement of convenience and yet they slowly find themselves falling in love. Marty was a feisty main character that I really identified with. She doesn't let anyone push her around and yet she is also kind, loving, and thoughtful.

I enjoyed this book for the most part. I loved that the characters were both from Texas and both had a deep love for their home. I liked following Marty's journey to finding God again and I didn't feel like the religious part was overdone as it is in some Christian novels. The only thing I didn't feel was the love story. I knew the characters were supposed to be falling in love and yet it wasn't believable. It seemed like they just jumped from like to love over a very short time and with very little interaction with each other. Overall I enjoyed the book, but wouldn't read it again.
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