Red Light, Green Light.. 1 2 3

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When I was a child growing up, we used to play red light, green light 123 and even now when I think back about this game, I have a smile on my face.  Growing up was fun, I lived on a great block, with terrific neighbors and they were my extended family.

Now when I think of red light, green light  it has a different meaning to me.  I have started using these lights as symbols to my friends and family about what type of day I am having.  I hate to say NO, I don’t like hearing the word NO and I don’t like using the word NO.

Green Light means I’m having a good day; Yellow Light means proceed with caution; Red Light means leave me alone, stay away.

I have tried to use these lights, as a way of avoiding saying No I can’t go out to dinner, or No I can’t go to the movies, or using the Yellow Light to mean I can’t get dressed and meet you somewhere, but if you’d like to come over for an hour I would love that.    It worked for a little while and still does work with certain people, but other people grow tired of hearing that I’m having another Red day.

Don’t people realize, I don’t like having Red days, it’s not fun for me.  Or when I hear the comment, “Don’t you get tired of resting” or “Don’t you get tired of going to the doctor”, the hairs on my body stand up and it’s like nails on a chalkboard to me.  My response back lately has been, “What rationale person wouldn’t get tired of resting all the time or constantly going to the doctor”.  That stops them in their tracks.  Our society is all about instant gratification, so when a chronically ill person doesn’t get well quickly, somehow we are treated like it’s our fault.

What are people thinking sometimes?  I wish they could imagine never recovering from the flu, and waking up every single day achy and sore and very tired, as if they haven’t slept a wink. And then having to accomplish all the daily things that life requires of you; washing your hair, taking a shower, paying your bills, food shopping, preparing meals.  All tasks that a healthy person takes forgranted.  So next time you healthy people find yourself in our company, please think before you say something hurtful or tactless.  I know you don’t mean to offend us, but sometimes you do.

Here’s a list of 10 things you should never say to a chronically ill person.   I read this on another website and thought it hit the mark on every point:

  • Do not imply that we are not truly ill
  • Do not imply that the illness can be easily fixed
  • Do not imply that we brought this on ourselves
  • Do not imply that you can relate to what we are going through
  • Do not insult or argue with us about our limits
  • Please be mindful of the family members that take care of us or help us, as their lives have changed too
  • Please acknowledge our efforts and celebrate our little accomplishments, no matter how small they may seem to you
  • Please offer us specific help, not just a general let me know if you need something
  • Please remember important events in our lives like birthdays, medical procedures, holidays
  • Please remember we are more than just a “sick person”, this illness is a part of us, but it is not who we are

A chronic illness is not for the faint of heart, but only for the toughest indiviuals who can continually deal with everyday life and also contend with the daily trials and tribulations of life with a debilating illness.  We deserve your admiration, undying support and utmost respect.

Invisible Illness shouldn’t mean Invisible Me

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Like all other individuals that suffer from an Invisible Illness, our pain and suffering is deep inside us and not viewable to anyone.  Sometimes, we pay a price for this as people don’t understand how we feel or why we act like we do..

I haven’t written much this past week, as I’ve been in a flare where my pain is high and my brain fog is intense. When I go into a flare, I disappear from the world and feel invisible, as I don’t see or communicate with many people when this occurs.  Even on a good day, my social interactions are limited, but during a flare, they come to a halt and it’s like I have disappeared from the world.  

When you have an invisible illness such as Lupus or RA or Fibro,  people don’t realize how hard life is for us because we look like the normal “healthy” population.  We go through the motions of everyday life, but carry a burden deep within us.  We are silent warriors, wearing our shield of armor, but really should be given a medal of honor for trying to get through each day with love, light and hope in our hearts.

Living with an Invisible Illness can get lonely on a physical and emotional level as  we spend so much time alone and within ourselves. I know when I’m in a flare, no one can help.  I must listen to my body and leave the world for a few days, so that I can heal.

Days, sometimes weeks go by before I reach out to friends or hear from them  and really my story doesn’t change.  My daily routine is the same, rest, doctors, acupuncture, reiki, pt, errands…  I’m in survival mode, but would still love to hear about your latest vacation, or parents weekend visiting children in college, or even the latest movie or broadway show that you’ve seen.

So please, friends and family, call the loved one in your life that is homebound and tell them the stories from your daily life.  As mundane as they may seem to you, they will lift our spirits and make us feel like we are a part of the everyday world and that we are alive.

Canary in a Coalmine

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A few months ago I stumbled across an article that was comparing a CFS diagnosis to being a Canary in a Coalmine.  Early coal mines did not have ventilation systems, so legend has it that miners would bring a caged canary into a new coalmine. Since canaries are especially sensitive to carbon monoxide and methane,  it made them ideal for detecting any dangerous gas build-ups.  As long as the canary kept singing, the miners knew their air supply was safe.  A dead canary signaled an immediate evacuation.

The article I was reading stated that CFS is an epidemic waiting to happen and that the people that came down with CFS, were early warning signals of a major epidemic waiting to hit the population.  Today the expression,  “living like a canary in a coal mine” refers to serving as a warning to others.   Us sufferers can be compared to a canary because just like the little bird had very little control over his fate, so do we.  Whether we are healthy or sick, we need to experience all that life has to offer.

Unfortunately as a person suffering a chronic illness, I have to find comforts in littler things.  I am not able to plan that big Alaskian cruise vacation that I have always dreamed about or returned to my favorite destination spa in Utah or plan to host an upcoming holiday dinner.  But I am able to spend an hour relaxing while getting a massage or attend a holiday gathering at my sister’s house.

This morning, I received a link about a new movie that needs funding.  There is a kickstarter campaign attempting to raise money to allow the film to go into production next year and  fund the time, equipment rental, and travel expenses needed.

Please take a look at this movie and at the very least promote it to spread awareness about the illness that so many people are still unaware of or worse, believe that it doesn’t exist.

http://www.canaryinacoalminefilm.com/#

 

 

Pain, Pain Go Away

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How do you get people to understand something that they can’t see?  I am struggling with that thought right now.  I have been in alot of pain this last week, whether it was back, head, neck, shoulders…just all encompassing pain.  I have been sitting in a dark room or wearing sunglasses in my apartment to minimize the light, yet I can’t make anyone understand how I feel.  Not even my doctor.

I had a doctors appointment yesterday with my rheumatologist, who believes Fibromyalgia is a real condition with real, life changing symptoms.  He listens to me when I have an appointment, yet offers no help because he tells me I have exhausted all the possibilities for treatment.  I have tried Lyrica, Savella, Cymbalta, Nuvigil.  I have tried it all and nothing makes a bit of a difference.  I have taken supplements, probiotics, eaten healthy green vegetables, drank immune shakes and D Ribose powder, but yet I feel no different.   I asked him when the magic pill will be discovered to take away my pain and he said, “Unfortunately, I don’t think it will happen in my lifetime”.   I replied, “Well then I hope you live to be a 100”.  He smiled slightly and replied “So does my wife”.  And off I went with my naproxsen and tramadol prescriptions.

I have wasted hundreds and hundreds of dollars, which I unfortunately don’t have to waste, in an attempt to do something that will make me feel better, but so far, no luck.  So what am I suppossed to do when noone offers me any real helpful solutions.

I guess I am feeling alittle down this week as my frustration levels are high and I am just plain sick and tired of feeling sick and tired.  I know I need a good night sleep, but that hasn’t happened in the last few days as the pain has kept me tossing and turning.  I don’t even think a visit with a friend is the solution to this latest flare.  I just need to do what I have done for the past 4 years when I feel like this… pull myself together and take one day at a time.  I am the only one that can help myself right now and that’s what I’m going to have to do!!