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

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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.