International Awareness Day

may12

 

I have felt and have been invisible lately and my invisible illness has really prevented me from participating in life and writing on my blog.  Today is ME/FM/MCS Awareness Day and I felt it was important that I write something on this topic.  Unless people become aware of our illness and our suffering we all will remain invisible.  My pain is invisible to others, but very real to me.  To others it may appear that I am healthy, as I do not use a cane, walker or wheelchair, but I am not healthy.  I am limited to 4oo steps at a time and then I need to rest.

So while I may seem fine to the outside world, I suffer in silence and unless our suffering is made known, we will always suffer in silence and in the comfort of our own home with our close loved ones.

They are helpless too, as there is very little that anyone can do for us.  They can drop us off in front of our destination, to save us the extra 25 steps, or they can pick up some grocery items for us to save us from using our precious energy commodity up on daily tasks, but they can’t cure us.

Understanding and compassion from loved ones is very important, but understanding and compassion from the Medical Community is what we need and unless that community is continually made aware of what we deal with on a day to day basis, nothing will change.

So as I once again sit by my window on this beautiful spring day, while the rest of the world is going about their everyday life. I hope that a year from now some headway will be made and I will be able to be on the other side of my window.

I have to keep remembering that there is Life Beyond my Window and I will be able to participate in it again!!

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Water, water everywhere!

oakbeach

 

This is where I was yesterday afternoon…Oak Beach, NY.  While this water is definitely not the prettiest or the bluest, to me it was a lifesaver.  I sent out an SOS yesterday to a friend and needed to get out of my apartment and change my scenery.

Since a week ago, I have been down and just out of sorts.  It all started when I met a friend of mine for lunch at the coffee shop on the corner.  The routine usually is my friend will pick me up in front of my apt, drop me at the front of the restaurant and then go find a parking spot.  The same routine is usually done in reverse on the way home, but this time I wanted to try something new.  I wanted to see if I’ve made any progress with my physical stamina and when it was time to go home, after a very nice lunch, I said I’m going to walk home.

Now to anyone else but me, this would seem like a normal sentence, but to me this was monumental.  The restaurant is on my corner, my building is in the middle of the block, piece of cake you say!  NOT.

I walked very, very slowly, even cut some steps out by walking in the middle of the street, but by the time I got to my apartment, my body was shaking, my legs felt like jelly and they couldn’t support my body weight.  To bed I went and in bed I stayed for the rest of the day.

Now was this worth, definitely not in hindsight, but I was hoping for a much different body response and the one I got really put me in a downward spiral.  How could I not have progressed any since last spring?  Will it be 10 more years before I am physically able to walk to my corner?  What goes on in my body that causes this and why can’t any medical doctor figure this out?

So since this incident, I just have been completely out of sorts and just uninspired to try to do anything because I was afraid of getting the same response.  But the weather has been so beautiful these last few days and yesterday I just couldn’t take it any more and needed to be by water.  So I was lucky that my friend was available and was able to spend the afternoon with me, surrounded by nature and peace and quiet.

It did me a world of good and I came back home in a much better mental state.  Although I am tired today, because I was out for many more hours than I usually venture out, the physical tiredness is worth it today because I feel good mentally and I know my spirit and determination are back.

Today, I wish I was able to do more than gaze out my window and view the life outside, but I am content again and at peace with myself and that’s all that matters to me this afternoon.

The Synergy Trial

synergytrial

This week I had to go for my checkup with my main doctor that follows me since I’ve been on disability.  During our consultation, she mentioned about this trial that is recruiting CFS patients.  This study is called “The Synergy Trial”.

http://thesynergytrial.org/

The trial is being conducted in 4 US cities and will involve 120 participants, over a 12 week period.  The Trial will evaluate the safety and efficacy of a currently available medication (Ritalin) combined with a CFS-specific dietary supplement.

I am located in one of the cities, the trial is being run, but unfortunately I am not eligible to participate because I have some heart issues and that excludes me from the study.

If anyone is interested, please look at the study and perhaps you will be eligible to participate.

Good luck if you do!

 

Red Light, Green Light.. 1 2 3

redlightgreenlight

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.

Sometimes helpless, but never hopeless

man in yellow flower  field under beautiful sky
This week has proven to be a challenging one for me because of how limited I am with my physical and mental capabilities. My system becomes overwhelmed very easily, whether it’s from sound, light or activity, they all seem to cause a shutdown of my brain and my body.

Aside from managing a chronic condition, life does go on and there are everyday mundane tasks that need to be accomplished. This week I had an issue with my cable service provider (Time Warner). I am disgusted by their lack of understanding for dealing with a person with a disability. After having a very frustrating conversation with the representative, which left me weakened to begin with, I had to go take care of a quick errand.

I went to my car, which thankfully was parked right in front of my apartment building, and the car wouldn’t start. I started to panic, which only exaggerated my symptoms and sat paralyzed for a few moments, running through every possible scenario in my head.

I finally gathered my thoughts and calmed down and called my insurance company for a jump. I waited an hour, but rested during this time, and then had to drive the car to a nearby mechanic. The car had to stay overnight and when I was driven home and was alone in my apartment, I became very anxious and felt stranded.

Now what a ridiculous thing for me to feel. I live in a very populated area, in a borough of NYC, in an apartment building filled with people, yet I was still anxious. What if I needed something, how would I be able to get it? Even though there is a supermarket and drug store one block away from where I live, the stores may as well be a mile away, as I can’t walk to them. What if my 85 year old mother, that lives around the corner from me, got ill and I wouldn’t be able to walk around the block to help her? I could come up with a lot of what if’s and believe me I did.

These feelings of helplessness overwhelmed me and I realized how silly they all were and that the likelihood of me needing to do anything but rest for the next 24 hours was remote, but I still felt helpless.

Of course I survived the night without any problems. My mom was alright and I had enough food in my apartment and I didn’t need anything from the drugstore, but I did realize how vulnerable I am to situations that I don’t have control over.

Healthy people don’t realize how lucky they are or how in control they are of so many situations, that they take forgranted. Not having a car for a day, is a big inconvenience, but it doesn’t create fear or helplessness. If I was healthy, none of the images floating through my mind would have occurred because I would be able to depend upon my body.

Just because I felt helpless that day, I was never and will never be hopeless. I still have hope that one day my body will be strong enough so that I can rely on it in any and all situations that I face.