What would you do today, if you knew you’d have CFS tomorrow?

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As I sat around the Thanksgiving dinner table, I wondered how each and every one of the people sitting around me would cope if they suddenly woke up with CFS tomorrow.  I don’t think anyone of them would handle the situation as graciously and as humbly as I have.  I could be wrong, as some people rise to the occasion and I’m not wishing that any of my loved ones or dear friends, ever have to deal with what I am dealing with.  But I do often wonder if anybody can put themselves in my shoes and envision the realities of my life.

Then today, I get this email from The CFIDS Association and clicked on the link and watched a video, which asked the question:  What would you do if you woke up tomorrow and were well?

Everyone in the video answered with normal everyday things that people take for granted:  getting a job, going on a family vacation, finishing up college; spending a full day with grand kids.  I know at the top of my list would be to take a walk, a very, very long walk.

When I was healthy, I never sat and worried about getting sick or suffering with a long chronic condition.  I think if I woke up well tomorrow, I would always worry that CFS is like the devil sitting on my shoulder waiting to attack again. Could I ever really shake this experience and not be afraid that with the next step I take or movement I make, I’m going to be in pain and suffer with extreme fatigue.  Or maybe the reverse would be true and I would start living life to the fullest, taking advantage of every opportunity presented to me and not shying away from things.

At the very end of the video, it asked the reverse question,  What would you want to do today if you knew you’d have CFS tomorrow? The purpose of the video is to raise money for additional research and I hope that it makes people think about what their life would be like if they woke up and couldn’t move or think clearly.  If their life was undeniably different from when then went to sleep and different not in a good way.

I am just not sure that most people think that way, unless illness has touched their life.  I hope I am wrong and this video raises a lot of money so that the cause of this mysterious illness that desimates the lives of its sufferers can be found and I can wake up well tomorrow.

I guess how I handle a return to wellness is something that I can only dream about right now.  I will cross that bridge when I get there and I hope I do get there.

 

 

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.