Thursday, April 23, 2015

Is Fibromyalgia fake? (The question that will never die)

I've been getting a ton of google traffic from my Top 5 Reasons Fibromyalgia is the Best Fake Disease post. It made me curious to see what the top google search terms are for my blog. The result was not surprising, but a little disappointing.

1. Fibromyalgia fake

According to google, everyone and their dog really does think Fibromyalgia is fake.

2. Fibromyalgia is fake

...And more people out there who still think Fibromyalgia is fake. What I wonder is does my heavily sarcastic post go right over their heads or do they learn something? I wish I could tell.

3. chronic mom

Yay! No complaints about this one. Makes me feel famous

4. cd 57 test

I'm so glad people are being lead to my posts about the CD 57 test for Lyme. There's not a lot of info out their about the test, so the more people learn about it the better.

5. Fibromyalgia crazy people

Okay, so I did write a post once about a crazy person with Fibromyalgia, but that was just one crazy person in millions. She was from Houston too, does that make all Houstonians crazy? You can't judge an entire group by the actions of a few people.

6. Fibromyalgia fake disease

Okay, now this is just getting old.

7. moms with Fibromyalgia

Hallelujah we've run out of search terms related to Fibromyalgia being fake

Wednesday, April 22, 2015

The uncomfortable truths about chronic illness

What's it really like being sick?

It's lonely.

There is a barrier between you and most healthy people. Healthy people want healthy friends. They want friends they can regularly rely on. They want friends who's lives are not regulated by pain, medication, exhaustion, sleep patterns, and doctors appointments. Very few people can see past these barriers to see the person you are.

They can't see that you have a sense of humor because they see you when you are tired and hurting and they think that is you

They can't see that you love helping other people because you are so sick you can hardly take care of yourself.

They can't see all the things you want to do with them and participate in, they can only see that you flake out a lot. So they stop inviting you.

They can't see that you are strong and brave and every day you fight a battle just to meet your basic physical needs. They can't see the effort it takes to just move your arm or put on your makeup or get outside the house. Your strength is invisible to them.

They can't see how you long to be normal and to be a normal friend, all they see is that you periodically fade out of their lives for no discernible reason.

They have no idea what it is like to try and live a normal life when you are not normal. When everyone has expectations for you and you constantly fall short. When you are constantly being pressured to do something you physically can not do and treated with contempt when you inevitably fail.

They don't get it.

So they drift away and move on because you can't be a good friend and it hurts.

The truth about being sick is that you pretty much have to handle it yourself, alone, and it sucks. Even the most understanding healthy person can't really understand what it's like to live this life. They don't understand what it's like to be left behind again and again and again. It feels like shit.

What's it really like being sick?

It's draining. 

It takes over your life and takes up all your energy. Some days your suffering is so intense you literally can't see beyond it. Some days the pain becomes your whole world. Some days are better and you can pretend that life is normal. 

Some days you feel joyful despite the pain, and some days you feel beaten down by it all. 

Some days you feel like the person you were is dead and buried, some days you can see a glimpse of your old life.

Some days you accomplish your to do list, some days you wake up and know you're spending the day in bed. 

Some days you feel like everything is spiraling out of control, some days you feel like you're managing.

Some days you are full of hope, and some days you despair. 

This is life with chronic illness. It's not beautiful or pleasant and often times it gets shoved in the background so no one feels uncomfortable. But you can't shove us in the background. We exist and this is our life. It's not easy, but it's ours and we take ownership of it. For good or for ill it's the hand that has been dealt to us and we're playing it.  

This is an update of an old post from a few years ago. You can find the original one here

Monday, April 20, 2015

How do you deal with stress?

Stress Awareness Month: What’s the best way you deal with stress? How do you like to let loose to escape common stressors? Share with us your favorite ways to shake off the stress. #shakeitoff #HAWMC

Having to change the way I deal with stress has been one of the most difficult things about being sick. For most of my life I have dealt with stress by working it off through athletics. All through high school I participated in sports and regularly ran or swam away my stress. In college I was a gym rat. I worked out six days a week, I played racquetball, played ultimate frisbee, I went rock climbing, and I ran in between all my classes (okay that was a necessity, my college campus was huge). Even after I had my first child I walked to de-stress. I would put her in the stroller and would walk five miles a day. Obviously chronic illness put a stop to all that.

I've floundered for years on finding a new appropriate outlet for my stress. I'm not artistic so I can't paint or write poetry to calm myself down. I love music but it ramps up my stress more than anything. I love to read but I get too emotionally involved with the characters. I find baths relaxing but they only calm my body not my mind. I've found that I really do have to exercise to reduce my stress, there is no other way for me. So I changed how I exercise. I now do light relaxing yoga which stretches my muscles, helps my pain, and keeps me from worrying too much by lulling me into a relaxed state (yoga instructors have such peaceful voices). I also still walk off my stress. Although I can no longer go for five miles I've worked my way up to walking about two miles on average. It doesn't do my knees any favors but it really helps my state of mind and sometimes that's just as important.

Thursday, April 16, 2015

Happy Calm Focused- product review

Happy, Calm, and Focused (HCF) is  supplement composed of amino-acids, vitamins, and minerals. It includes: Vitamin A, Vitamin E, Vitamin B1, Vitamin B2, Vitamin B3, Vitamin B6, Folic Acid, Vitamin B12, Biotin, Vitamin B5, Calcium, Iron, Magnesium, Zinc, and Chromium. HCF helps to support the increase of key "feel good" neurotransmitter levels in your brain. HCF is specifically formulated to go through the Blood Brain Barrier in order to make it more effective then other products. The idea behind HCF is not to trick your brain, but to actually make changes.

The biggest struggle for me was taking HCF on an empty stomach. The most logical time to take them would be first thing in the morning, but I have to eat right after I get up or I get nauseous. I'm also a snacker, I don't eat big meals I just eat little snacks throughout the day, which made it difficult to take HCF. I wish it wasn't necessary to take on an empty stomach. On the plus side HCF contains no preservatives, chemicals, or sweeteners.

I took HCF for one month. I took it according to the directions which call for an empty stomach and a glass of water while taking three pills. It did not make me nauseous like many other supplements do. After a month I did not notice a particular difference in my weight, reduction of negative feelings, sleep cycle, or attention span. I do wonder if maybe a month is not long enough for the supplement to make a difference or if three a day was just not enough in my case. Overall I'm not sure it's something I would purchase at full price, it's a little too much money for what you get.

I received a complimentary bottle of HCF in exchange for a fair review

Tuesday, April 14, 2015

Inspiration porn

I came across a term the other day that I have never heard before, "Inspiration Porn." My shout of "EUREKA" may have been heard across the globe. I've searched for a term for this phenomenon before and Inspiration Porn nails it.

Inspiration porn is an image of a person with a disability, doing something completely ordinary – like playing, or talking, or running, or drawing a picture, or hitting a tennis ball – carrying a caption like “your excuse is invalid” or “before you quit, try." It often includes the quote:

“The only disability in life is a bad attitude.”
– cancer survivor Scott Hamilton

I despise the frequent memes featuring a disabled person doing something and pointing out that no one else has any excuses because if even a disabled person can do it so can you. For example, there is a meme I see all the time of a young kid running on artificial legs with the caption, "Your excuse is invalid." Putting aside the fact that people are not going to be motivated by a meme, I find this meme insulting.  It serves to remind the able bodied that their lives aren't as bad as they think they are, because at least they aren't disabled. You don't want to go running because it's hard? Well you should do it because after all, at least you have legs. What this says is that living with a disability is the worst thing that can happen. I find this dehumanizing to disabled people. 

While of course it is wonderful to see disabled people making extraordinary achievements, it becomes problematic when we hold them up as a community standard. "You have a painful chronic illness so you can't run? If someone without legs can run so can you. What's your excuse?"  Pointing out that someone else has it worse so you are responsible for your own failure to achieve xyz is textbook shaming. It tells disabled people that they are not good enough because someone else with a disability did it better. It says that disabled people are not allowed to share their fears or negative feelings because they are supposed to be an inspiration to everyone else. It says that if a disabled person isn't always happy and achieving glorious things they should be ashamed. The really terrible part is this shaming comes from a place of fear of becoming as incomplete as a disabled person. 

Life is not the oppression Olympics. We all have our struggles, we all deal with different problems and we all have to continue on with our lives. It is not helpful to point out that there is someone (often a disabled or sick person) who always has it worse. It is not helpful to point out all the inspirational disabled or sick people and hold the entire community to the same standard. Stop the shaming and think twice before posting memes featured disabled people to motivate the able bodied. 

Monday, April 13, 2015

Why don't my hands work?

I have come to dread the summer and since I live in Texas my summer goes from April-October. It's a never ending pain-fest for me. I know a lot of people have problems with cold, I have no idea if I'm one of them though because it's never really cold here. Instead I react to heat and humidity, and since I live close to the ocean humidity is not in short supply.

Every year it starts in March or April, usually with the arrival of the humidity accompanied by the spring rains. My hands start to swell up. As first it's not too bad, I can still wear my wedding ring but I'm a little uncomfortable. I start wearing arthritis gloves when I'm cleaning to give my hands some extra support. By April the temperatures are over 80 degrees and I've lost the ability to even make a fist much less wear my wedding ring. Using my hands to do anything becomes extraordinary painful. I can no longer tie my kids shoes or button their shirts. My hands are so swollen and painful I remain in a permanent arthritic curl. I struggle to cook, clean, and even get dressed. You don't realize how much you use your hands until you can't use them anymore.

It's incredibly frustrating to explain this phenomenon to other people. If I could do something in December, why can't I do it now?  The problem is I don't even have an answer for them. I've asked every doctor I've ever seen and no one has been able to come up with an adequate explanation. A few doctors have said I have the pre-arthritis markers. Some articles I've read have said it's Fibromyalgia making my joints feel like they are damaged because of the swelling of the muscle tissue. The problem is while I do have swelling of the muscle tissue, I also have some joint damage. Another possible explanation is that Lyme Disease caused the damage to my joints, and now Fibromyalgia is creating other problems with the tissue in my hands. It's a mess and nobody seems to be able to help me with it.  It's only April and I'm incredibly frustrated.

Friday, April 10, 2015

Comfort Food

Comfort Food: We’re not all 5 star chefs, but we all need to eat! Tell your readers how to make your favorite dish. Does the recipe hold a good memory for you? Is it the act of cooking itself that brings you joy, or the people that come together to eat it? #HAWMC

My favorite comfort food of late actually involves very little cooking skill. The found the original recipe here, but it has some glaring flaws so here is my version:

Stuffed mini peppers with pesto

Pesto sauce
2 cups fresh cilantro
4 garlic cloves
3/4 cup walnuts
small pinch sea salt
1/2 cup Parmesan cheese
1/2 cup olive oil

Put all ingredients in a food processor and puree.

Additional ingredients

1 bag sweet mini peppers
1 8 oz block cream cheese

Preheat oven to 350 degrees. Slice peppers and remove seeds. Fill each pepper with cheese. Arrange peppers on baking sheet and cook for 8-10 minutes until peppers are tender. Remove from oven and place pesto on top of each pepper.

I really enjoy cooking. I like to experiment a lot much to the chagrin of my children who would prefer to just eat spaghetti every day. I actually find cooking relaxing. What I don't love are the dishes I have to clean afterword. If I decide not to cook it's usually not related to the idea of cooking, but the dread of the dishes.

I don't particular enjoy coming together with my family to eat what I have made because inevitably my kids won't eat it. They don't seem to appreciate that they have a good cook for a Mom and they complain about all the interesting dishes. So I have to listen to whining all through dinner about how I never make anything they like. I remind them they are lucky I don't cook casseroles like my mom did, but then again they don't know what a casserole is so they don't know how lucky they are.

Related Posts Plugin for WordPress, Blogger...