International Awareness Day

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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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Missing InAction

 

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I have been Missing InAction for the past week and I haven’t been able to do much.  My mind has been like mush and I haven’t been able to formulate a thought, or rather a logical thought.  These episodes hit us like bricks and we are like zombies walking around in the world yet not participating.  This past episode has been a long one, maybe not as dire as past ones, but longer.  I am finally starting to emerge from this state, but still feel empty and uninspired.

Yesterday I made it to a doctor’s appointment, it was a new doctor and with a new doctor comes all the anxieties of will he believe me,  will he treat me with respect.  kindness and understanding and will he have anything new to offer me.

I am happy to say that I can answer yes to all of the above uncertainties.  The doctor was gentle, gave me a thorough examination and talked to me with respect.  Even though he did seem a bit rushed, I didn’t feel neglected.  We went through a history of my illness and symptoms and he asked a bunch of questions about previous medications and then he offered me a medicine I have not taken before.

He wrote me a prescription for Savella, which is the 3rd approved medication of it’s kind for Fibromyalgia.  I have previously tried Lyrica and Cymbalta, with no improvement in my symptoms.  These medications only made me feel worse with their side effects.  So now the big question is, “Do I try Savella”?

I have been researching the medication and its side effects, some of which scare me.  I am sitting here staring at the prescription and I just don’t know what to do.  At first I was so excited that I was offered something new to try and help me and I was going to rush to the pharmacy, but now I really am unsure.  This doctor spent 15 minutes with me and did he hear that I currently have palpitations due to some minor heart issue, or did he hear that I get dizzy at times.  These are 2 side effects of the drug that I am not sure I want to encounter.

The dilemma I feel right now is faced by many people dealing with illness.  Do I try something that could make me feel worse in the short term, but perhaps a little better in the long term?  Do I try something that I likely will have to be on for the rest of my life, if I feel it helps, only to find out in 5 years that the drug can cause cancer or some other fatal ailment?

These situations and many others that I deal with on a day to day basis escape the healthy individual.  Sometimes I just wish I could shake my healthy friends and make them realize how lucky they are.  If I have to hear one more story about how a friend is upset because she had to miss her nail appointment or that she has 2 parties to attend in one day and just doesn’t know what to do, I THINK I WILL SCREAM.

So for today, I will sit and mull over what to do.  I know once I make the decision, I will be alright with it and that will be that.

 

 

 

Gratitude

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Yesterday Jenny of “My Fibrotastic Life” blogged about the 21 Days of Gratitude program she was participating in.  This intrigued me, as I too have been searching for my purpose in life since I became ill.  I registered for the course and listened to the first day’s message about finding something in life that makes your heart sing.  Jenny is lucky, she has found this purpose at a young age.  I thought I knew what my purpose was in life, as I was proceeding down that course, but then I was thrown a curveball and I became ill.  How do you find meaning in a life, where society (and even worse) friends and family sometimes consider you as an afterthought or don’t consider you at all.

Work defines so many of us and when I was working it defined my too.  I held onto my job, way longer than I should have because I couldn’t bear the thought of going on disability and not having a workplace to go to every day.  I loved my work and couldn’t imagine a life without it.  I had been lucky (once again in society’s terms) to work for a straight 27 years from the time I completed my Masters Degree in Finance.  I was a very dedicated,  conscientious and motivated employee and my superiors recognized that quickly.  Even though I had to work long hours, I didn’t mind it.  I loved what I was doing and loved the people I was working with.  I thought that made my heart sing, but you know what, while I miss being able to work, I really don’t miss what I was doing.

If I was lucky enough to function at a level where my illness was under control and I was able to rejoin the workforce, I wouldn’t want to go back to my old job.  I have found great solace in writing and would want to pursue that in some form.  Does that mean, writing now makes my heart sing, yes it does, but is it because of my current circumstance or because it really fills my heart with joy?  I guess I will learn the answer to that as my writing and my blog matures.

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.

Thank you for nominating me….

Liebster

Today,  when I read my emails I was pleasantly surprised to see that I was nominated for a Liebster award, a WordPress family award, and a Versatile blogger award.  These awards were given to me by  pastry chef Celeste from the Baking, Butter, & Happiness blog at http://bakingbutterhappiness.wordpress.com/welcome/

Thank you so much Celeste, for this honor, and for noticing my blog.  The wordpress community has provided alot of support for me, as I deal with my day to day issues.

I am relatively new at blogging and wish I was able to follow more blogs and write more, but the limits of my illness prevent that.  I get great joy from writing and hope that my insights as a woman living alone with a chronic condition can help others.

I hope you forgive me for copying and pasting the rules and pictures to my blog.  Please stay tuned for follow up posts for more about the 3 awards and for my nominees.

Thank you again,

Rose

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!!