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
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 ran across a Facebook post by Cindy over at FibroColors mentioning that Morgan Freeman had been living with Fibromyalgia. Now I’m a huge fan of Mr. Freeman and almost every movie I’ve ever seen him in. So I have to google it. The first link that pops up is an awe inspiring article by Tom Chiarella. “This Earth That Holds Me Fast Will Find Me Breath” The Morgan Freeman Story absolutely gave me chills. It even brought a tear to my eye.
If I’d have been alone, no doubt I’d have cried hard upon reading the descriptive words about how Freeman’s life had been changed. How he could no longer do the things that had once brought him so much joy. What hit me even harder, was how he simply took the same pleasure in just walking his land in Mississippi.
Here is a man that rode horses every…
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Translated to “the more things change, the more they stay the same”.
Often times I hear this in passing, on the radio or even within my own thoughts. It’s a phrase we so often hear but have we stopped to ask why it is so? Today I reflect.
I was scouring the Internet this this morning, reading blogs for inspiration when I ran across this blog Three paragraphs in this caught my eye…
The reality is that by about 25, your future can be fairly well predicted by your life at that point. Perhaps not the details, but the general character. The thing is, people don’t change much past that age. Of course, things can happen to alter your course. You could land a great job, get laid off, develop an addiction or come into an inheritance. However, you can usually take a look at what someone is doing at around 25 or so and predict what they will be doing in ten years. Chances are, it won’t be too different.
Pardon my french, but fuck that! If I were to stand out side my window and look in knowing I would see the same thing in ten years….you can just picture me beating on the window, screaming so loud no noise comes out.
Ultimately I’m telling myself to wake up! So often we heard growing up that anything is possible if we just believe. That’s bull shit. Anything is possible through hard work, perseverance, blood, sweat and tears.
I have a handful of lifes “bumps in the road” that hinder me from living the life I dreamed of. A diagnosis of fibromyalgia, nerve damage in my back, a pending diagnosis of multiple sclerosis or maybe even lupus, being about 50 lbs overweight, myositis and chronic fatigue. All of these things lead me to where I am now.
I lost the career I’d always dreamed about and haven’t worked in almost 10 months. I am bored, overweight and in a terrible amount of pain every day. I do not want to be doing this same old song and dance in 10 years.
I refuse to sit back and let life pass me by
On Monday I started something amazing and wrote this
Feeling extremely accomplished right now…. in my quest to make my daughter’s summer awesome I just did something that is a huge deal. …We completed the tumwater falls loop in 45 minutes. Up and down all those hills and bridges along with over 100 stairs (Kara counted them with me). I used my cane and we stopped a few times but I did it! I may be down for the count for several days but it was so worth it!
Where will you be in 10 years?
Go read A Letter to Patients With Chronic Disease before you even finish reading what I’m about to say.
A twitter friend of mine Lisa sent me this a while back. I’ve read it at least a couple dozen times. Each time I read through it, it provokes a different reaction deep within me. At times, I’m thankful someone is willing to be so honest. At other times, I’m so angered by the brutal honesty of it.
Here’s what I mean:
Dr. Rob offers up this bit of information to chronic pain sufferers. He says, “You scare doctors”. My initial response is, “Well I hope so! I’m scared to. Even though I wouldn’t admit it to the outside world. Fix me!! Once I’ve calmed down, I realize this is helpful information.
Continuing on he says,
I am talking about your understanding of a fact that everyone else seems to miss, a fact that many doctors hide from: we are normal, fallible people who happen to doctor for a job. We are not special. In fact, many of us are very insecure, wanting to feel the affirmation of people who get better, hearing the praise of those we help. We want to cure disease, to save lives, to be the helping hand, the right person in the right place at the right time
Often times, as a patient, I do forget that doctors are human. They are not a God or any other higher power. They all went to school, studied from books and all have their own opinions. THAT is important for me to remember. Just like members of my family, friends, or the guy in the grocery store staring at my cane; doctors all have their own opinions about my pain and fatigue.
So it makes sense to me that if I choose to push the negative nay-saying friends and family out of my life, what’s to say I shouldn’t do the same with doctors?
Dr. Rob also makes a point that doctors can’t possibly understand what your going through. Just like we have come to accept that the people in our daily lives couldn’t possibly understand our pain, we need to accept this of our doctors.
Even doctors who specialize in your disorder don’t share the kind of knowledge you can only get through living with a disease.
Makes sense to me.
Dr. Rob also goes on to list some helpful tips when interacting with doctors. I highly suggest you go take a look.
What I’m left with is this…my primary doctor, my MS specialist, the ER physician…is someone’s daughter, son, brother, wife, fiancé or father. They are just a person who set out in their life to help people. Then *I came along, not their typical patient. I screwed with everything they learned. I defied their books and challenged their knowledge of disease and pain. Why shouldn’t they be frustrated? I know I am.
Food for thought.
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.