Missing InAction

 

missing

 

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.

 

 

 

Sensory Overload

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Since I’ve been ill, I have always struggled with multitasking, background noise, light and distractions, but over the past week this symptom has gotten really bad and has been sidelining me every afternoon with unbearable headaches.  Reading, writing and even processing a thought has been difficult starting around 2PM.  I’m not sure why this symptom is rearing it’s ugly head with such intensity this week, but it is very difficult to do anything useful when this occurs.

My mind feels like mush and my body is useless and all I can do is remove myself from the stimulus and retire to a dark room.  I have managed this problem with a good degree of success over the past few years, but this week something has changed.  I am hoping it’s part of a flare and will go back to a somewhat more manageable level.

When things like this happen, it always humbles me and reminds me that no matter how bad I feel, things can always be worse.  It reminds me to repeat on a daily basis what I am grateful for and all the blessings I do have, even when I am dealing with a chronic condition.

 

Winter Weather Blues

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I live in NY and we are experiencing very unusual weather.  A ‘polar vortex’ is bringing the coldest air in 118 years to my area.  Prior to this cold day, I have been stuck inside at my mom’s house since Thursday without much of an internet connection and finally made it home yesterday, only  to be stuck in again today because of the brutally cold weather.

I have felt trapped since being buried under many inches of snow and now that the snow has been washed away by rain, I am trapped again because of the cold air.   Being trapped  has caused me to go inside my head and think about things that I really don’t want to think about.

I have been doing a lot of knitting and making myself some new cold weather accessories, but aside from knitting and watching movies, I haven’t done much of anything.

I had to go to my mom’s house, because I live in an apartment building and don’t have a designated or inside parking spot.  I knew I wasn’t able to dig myself out, so the only alternative was to park the car in my mom’s garage.  But that brings a whole lot of other issues, I have to worry about her noisy upstairs neighbor and not sleeping in my own bed.

Regular healthy people return to normal once the snow has fallen and the snow doesn’t disrupt their lives for 5 days because of an illness.  The lack of spontaneity in my life and the ability to bounce back easily and accept changes as they happen is something that I sorely miss.  I wish that I didn’t have to plan out everything to the last detail and run scenarios over and over again in my head, but I do.  When the fog isn’t present, I have an active brain, but the fog also takes over when disorder enters my life.

So, I can’t wait for tomorrow and hopefully I will be able to go out and have a change of scenery and get the demons out of my head.  I need to talk with a friend or two and hear about their day and their stories about how they ushered in the New Year.

Well I guess being stuck in has helped me keep one of my New Year’s resolutions.. spending less time with toxic people..  See there’s always a positive thing to take away from any situation.

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.

 

 

The Synergy Trial

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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!

 

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.