I love myself enough…..

I love myself enough to do what is necessary. I love myself enough to make some very difficult changes. I love myself enough to embark on this journey and stick with it. I love myself enough to change my lifestyle. And I love myself enough to try.

Two weeks ago I had yet another surgery. It just so happens to have been the 5th one in the last 4 years. The last 4 years have been the most difficult years of my life. 4 years! I had come to terms with the fact I was going to be sick for the rest of my life. Having been diagnosed with fibromyalgia, endometriosis and functional movement disorder; chronic pain and fatigue were just a fraction of what my life has become. After surgery the doctor discovered the endometriosis has taken ahold of my bladder, a fairly rare occurrence. I figured, “ok, just one more thing to add to the list.”

However, something struck me really hard today and I just thought to myself I’ve had enough!!! I’ve had enough of always being tired, sick, weak and overweight. I’ve had enough of giving into my disabilities. So I have decided to make a change.

I do not expect fast or easy results. I do not expect a miracle cure. In fact, I don’t expect to be cured at all. What I do need is something to make my quality of life better.

So today marks the first day of my new journey. The first day of change. Currently I do not drink ANY water during the day. I consume an average of 3 sodas and 2 cups of coffee per day. I eat out about 4 or 5 times a week. Carbs and Sugars have been my weakness. I smoke almost a pack of cigarettes a day.

My goal is to stop putting all of these toxins into my body. slowly because Lord knows I never have been successful quitting anything cold turkey.

Today I started with a glass of water. Tomorrow I’ll make another change. Each day I’m going to tell myself that I am worth the change.

Because I love myself enough to do what is necessary

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We are reminders of how quickly life can get bad

I asked an MS group why they think our world becomes so small when we start to deal with things such as MS or Fibromyalgia. The best answer I received was, “We’re reminders of how quickly life can get bad. I think that’s why people disappear.”

I’ve never had it put to me quite like that, but in reality, I think it’s something we all know. Hidden in the darkest part of our minds. Trapped there, only revealing itself in our moments of utter weakness and loneliness.

For most of us, with each passing day, we put on that fake smile. We get up and try our best to hide our pain from you. We try to hide it from ourselves. But the reality of it is, we hurt. Physically and emotionally. We are confused, emotional, scared and angry. Day in and day out we never know what to expect. There are horrible days and days that aren’t so bad. But there are never “great” days.

I can see it in your eyes and hear it in your voice. Your exasperated attempts to make me feel better. You think your words fall on deaf ears.
If you would just exercise more
If you would eat healthier; stop drinking diet soda
You’re going to get better
Think positive
My friend with MS still lives a normal life

Trust me, we’ve heard it all. Not just from you; from our parents, our siblings, the guy in the check out line in the grocery store, an old coworker we ran into in the parking lot. We cant escape the unwanted advice. We fall guilty of repeating ourselves as well. Which is maybe why you push us away, slowly disappearing into a life we can only dream of. A normal life, without pain and sorrow or looks of pity; when we do manage to get out.

Whether it’s pity or your benevolent nature, we see it everywhere we go. From us tiring of the constant stares and questions to you becoming weary of our monotonous demeanor; we have grown apart. We are a reminder of how quickly life can get bad. And let me tell you, we are fully aware of how bad it can get. But we are also aware of just how beautiful it can be. We see things in a different light and do not take for granted the little things.

I recently had my first seizure a few days ago. After bawling uncontrollably, scared out of my mind; my 5 year old crawled into bed with me. We had the most sentimental/adult conversation that her and I had ever exchanged. I saw, for a moment, the world through her eyes. I sobbed softly for a moment after. Not because I was scared or in pain but because I was being treated (by a 5 year old) the way I need others to treat me. Not with pity but with compassion and patients.

Compassion but not pity. Patients but not overbearing. We know you could not possibly understand what we deal with day to day. Understand that you can not cure us, you can not take away our pain. But you can make our world just a little less dark. Continue to be our friend, lend us an ear. We do the same for you when we can. Understand we are unreliable but not by choice. We would drop everything for you, if we physically could.

Promise to love us, through the good and the bad because we promise to do the same.

Yes, we are a reminder of how quickly life can get bad but more importantly We are a reminder of how strong and faithful and loving life can be

I Need You to Understand

I’ve been neglecting this poor blog for a couple of days. It teases me as I contemplate sleep or writing. Neither of which I’ve accomplished much of in days. I wrote a post on my Autoimmune Facebook Page a few months ago. I asked for some input from other spoonies. I wanted to know what their thoughts were as well. The NUMBER 1 thing that kept repeating was how alone each and everyone of us feel. (Note:the page is no longer up and running)

Take this list into consideration when talking to a spoonie.

I know I “don’t look sick” but I am. That’s why it’s called an invisible illness

Yes, I tend to be unreliable. And yes, I feel guilty about it. I often bail on plans or avoid making them because I’m in pain or I’ve forgotten. I’ll avoid your calls because I feel so lousy.

I know that I have changed. Pain and suffering does that to a person. I may not be as fun to hang out with, but I am still a human being with feelings

I am not lazy. It takes every ounce of energy I have to make sure my house is clean and there’s dinner on the table. I’d much rather curl up in bed for days. And sometimes I do.

I feel guilty. Maybe because I haven’t seen you in weeks. Maybe because I’m to embarrassed to text you. I have nothing new to say. I’m still not physically well. I know you get tired of hearing that things are worse or there’s no change So do I.

If you ask me how I am doing, I’ll either lie to you and tell you I’m great or you’ll get every new ache and pain in lengthy detail. Be prepared. When you tell me “your looking better” or “your walking better” it’s because I’m able to fake it just a bit better that day. Who knew I was gonna be a great actress.

Yes, I know you experience pain. No, it’s nothing like what I go through. Take the worst flu you’ve ever had and multiply it by ten. Now imagine that it never goes away. There are no meds that help and you still have to go to work or take care of your children.

I lose the use of my hands. They get numb, tingly and when my brain tells them to pick something up they malfunction and I drop it.

I also lose my vision.

Noise causes pain. The bass from music, the buzzing on a tv, YOUR VOICE. It can put me in physical pain.

Showers cause pain. It feels like thousands of bee stings on top of sun burn. No, I can’t relax in a hot bath. Hot water puts me into a flare. Then there’s the possibility I’d be stuck in the tub.

Aspartame did not cause my disease. Diet soda did not either. Changing my diet won’t help. Ive done the detox and elimination diets. Exercising wont help either. I have a hard time walking. Don’t expect me to run or lift weights. I’ve tried.

Lastly, all I want is your friendship. I don’t want to be judged or told I’m not trying hard enough. I don’t expect you to understand my issues, I expect you to love me anyway. I want you to accept me. That’s what I ask of you.

In Light of Celebration

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It’s May 12th which means two things to me this year; Mothers Day and Fibromyalgia Awareness Day. Both of these have played a huge part in my life. One a little ok a lot longer than the other.

My mother and I have had a relationship that goes beyond words. Like any good, great rather, mom she has been there to lift me when when I’ve fallen. She has wiped away my tears, she’s encouraged me to try new things and given me the occasional “cowgirl up” speech.

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Things have changed drastically for both my mom and I in the last year. I won’t go into detail, mostly to respect her privacy but also to save myself (and maybe you) the tears. Our relationship has even changed, I believe for the better. My mom has been the one person I can depend on through life. Whether it be a breakup, losing a job, dropping out of college, another break up, becoming a mother myself, yet more breakups and now my health, she has yet to leave my side.

I pray that I’m half the mom she is. My daughter’s father and I had separated when she was about a year old. I never really did get to celebrate Mother’s Day. No flowers or cards, breakfast in bed or thank yous. Nonetheless I was grateful to have my lil princess just call me mommy.

With all of that being said, I’m brought to the fibromyalgia part of all this. I was diagnosed with FM a year ago. However, I believe I’ve had it since around age 14. (I’ll save that for another post). It makes life and motherhood extremely difficult.

There isn’t much literature on FM. There’s a monster list of symptoms and no cure. Doctors don’t know what causes it (though there are theories) and there’s no definitive tests. Some doctors and family members and friends don’t believe it even exists.

I’m here to tell you FIBROMYALGIA EXISTS. We need to raise awareness and find a cure. People, just like me, suffer every single day of their lives. It’s time to put an end to the judgmental looks, hurtful comments and physical pain.

We have voices that need to be heard and faces that belong to this invisible illness. It’s time to fix this!

LETS CELEBRATE LIFE TODAY

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