Finding my PURPOSE

the-purpose-of-life

I’ve been ill for 5 years now and I really don’t know where the time has gone.  What have I accomplished or learned in these 5 years, if anything I’ve gone backwards not forwards.  Lately I’ve been struggling to figure out my purpose in life and why I became ill and what lessons am I learning from being ill.   My Reiki practitioner said that I fear moving forward and that this fear is  keeping me sick and stagnant and that I am blocked and must find my way out.  She said that she envisions me in a field jumping through leaves being happy and carefree and able to walk and move about freely. She has told me repeatedly that I will not stay in this state forever.

So what is holding me back?  How can I find my “new” purpose in life because whatever I thought my purpose was before I became ill, is outdated.  I vaguely even remember my healthy life anymore.  When I look at pictures, it’s like I’m looking at someone else’s life.   Getting up at 7 am, commuting to work, putting in a 10 hour work day, socializing over dinners and weekend excursions.  That isn’t your purpose in life, that is how you pass your life, so did my life ever have purpose?  Do most people’s lives have real purpose?

If I think about the people in my life, there are a handful that definitely live a purposeful life.  They try and help others, give back to the community, raise awareness and are just plain kind and loving to all humans and animals alike.  But most of the other people I know are just getting through the daily grind and not even appreciating all the gifts they have in their life.

The definition of PURPOSE is “the reason for which something is done or created or for which something exists”.  What have I been put on this earth to accomplish?  Is it to enlighten others as to how illness changes you?  So many people that become ill, remake their lives and try and help others so what special twist on that can I add.  I’m really not sure yet and maybe when I stumble upon what makes me special and unique, I will feel free and move forward.

I know I am a good person.  I am kind, compassionate, empathetic, smart but where has that taken me.   I love learning things, figuring things out and observing people.  What am I missing about what my life is supposed to be…

I hope I realize my true mission in life very soon.  Our life is what we do EVERY minute of EVERY day.  I know it is each of our own responsibility to create the future we want, but does sitting around and wondering what it will be limit the possibilites?  I must  trust and live in the present and let go of my fears of the future.  Fears of living alone, fears of becoming sicker, fears of not being able to support myself or take care of myself.  These are all fears that I have and that I try to put to the side, but they are real concerns.

For right now, I will try and embrace my life and not worry about what the future will hold.  Maybe the answer is right under my nose and if I start living in the present, it will make itself known to me.

To Stress or Not to Stress

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Living with a chronic illness is difficult enough, but your body isn’t immune to getting other conditions.  Wouldn’t it be great if once we had one illness, then we didn’t have to deal with any other one.  Unfortunately things don’t work that way.

I’m not an alarmist, never have been but dealing with an illness that has constant changing symptoms makes you very in tune with your body.  At least it does me.  I have always been very intuitive and very good at reading other peoples body language and mood changes, so it’s only natural that I am also very in sync with my own.

I don’t go running to the doctor at the first sign of new symptoms but I watch them and see if they progress, change or go away.  A few weeks ago I decided it was time to go check out some symptoms that were getting worse and that had to do with my heart and breathing.

I have always had low blood pressure, but about 3 years ago (2 years into this illness) my pressure changed and while it changed to what the doctors considered “normal” it wasn’t my normal.  At the exact same time, I also started getting very strong palputations and heart flutters.  After about 6 weeks of these heart movements, I decided to find a cardiologist and have them checked out.

I had a slightly irregular EKG, but nothing that alarmed a doctor.  I also wore a halter monitor for a week and while they did see some weird activity, it wasn’t anything that warranted any medications or further tests.  I was told to deal with the palputations and come back in a year, unless my symptoms changed.  A year later the palputations were still present so I went back and this time had a sonogram, which showed some funky things going on with my left ventricle, but again was sent home to watch for changing symptoms and a yearly follow up.

Which bring us to this past month.  During the last 6 weeks, I have noticed a slight difficulty in breathing and an ache over my heart.  These 2 new symptoms caused me some concern and I decided since it was time to go back for a check up, I better do it sooner than later.  This time the doctor order a “Nuclear Cardiolite Stress Test”.

Panic set in.  I can’t walk on a treadmill, I can’t sit up in a doctor’s office for 6 hours, I can’t go without caffeine for 24 hours or without eating for 12 hours.  I”m weak to start, how can I even think about taking the test.  I made the appointment because that was what the doctor asked me to do, but in the back of my mind I knew I was going to cancel.

For the next 2 days, I was agitated and couldn’t sleep.  I really didn’t know what to do and went back and forth in my mind.  I asked the 2 closest people to me (who understood my condition) what do they think and both said that I shouldn’t do it.  But on the 3rd day, I decided I had to because the alternative was worse, “what if I really had heart problems and then had a heart attack?”

This was the first time since I’ve been ill, that I really had been faced with a medical decision about taking a complicated test.  I really had never thought about dealing with a second condition or going through a procedure that would tax my already weak and fatigued body.  It’s a scary thought that something else could be wrong and that dealing with my current illness would not be my first priority because what I am living with is a life long condition.

I hope to feel stronger and have less symptoms, but will I ever be totally free of this condition, probably not.  Do I hope to have less severe symptoms and be able to lead a normal life, yes I do.  So for now, I am happy to say that I survived the Stress Test.  It was difficult, very difficult, but the results did ease my mind.  But now, once again, I have unanswered questions and have been referred to a pulmonologist.

Why can’t anything be easy and have a solution?  I have decided to wait another while before dealing with more tests.  I’d like to try and enjoy the summer a little bit and not be sitting in doctor’s offices agonizing about lung scans and xrays and blood tests.  Just as these symptoms appeared, I am hoping they will disappear.

This experience did teach me that on day’s I think I can’t handle one more thing, I can.  Or on day’s when I am down on myself and fall in that deep hole of despair, to remind myself that things are really not the worst they could be and that I have to appreciate the current life I am trying to live.

Freedom

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Freedom means different things to different people.  One of the actual definitions of freedom is “the power or right to act, speak, or think as one wants without hindrance or restraint”.  Taking that definition literally, I guess one could say I am not free as I can’t act as I want without hindrance or restraint.  Maybe it’s not an external hindrance, but my body is not free.

Yesterday,  my body held out long enough so that I was able to get to the new Freedom Tower in downtown Manhattan.  It wasn’t easy to arrange this, but  but a friend drove me there and dropped me at the farthest point you were able to drive and I was able to walk the few hundred steps to actually touch the Memorial.  From my earlier posts, I mentioned I was down there that morning on 9/11 when the unimaginable happened.

It was very moving and quite overwhelming.  I haven’t been down to the Wall Street area since I was fired from my job and had to go on disability.  I don’t know which memories were stronger, but they were all mixed in my mind.  My previous life on Wall Street and the destruction of the World Trade Center.  Both are very emotional and overwhelming on their own, add to it my vulnerability of being limited in my movements and it was an intense 30 minutes.

I felt my body tense as we approached the Memorial and I was dropped off.  My eyes were darting to every side street and nearby store and my mind was wandering with what ifs..  What if my friend can’t park, what if I need help, what if I have to go to the bathroom before my friend returns.  But once I made it to the Memorial and touched the sides and heard the flowing water, all of my worries about my vulnerabilities switched to the people who lost their life that day.

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I wasn’t able to share the experience with my friend, as a parking spot was not easy to come by.  So I waited on the nearby benches to be picked up and sat with my memories and my thoughts.  I was disoriented and couldn’t figure out how the original WTC was where I was sitting.   Back in 1986, I worked in the WTC for a year and up until the week before the attack I passed through the concourse several times a week.  Just as many other people who worked downtown Manhattan did:  whether it was for shopping or banking or eating or just passing through.

Life as I knew it changed slightly that morning, as I didn’t lose a loved one.  I was left with a deep sorrow and definitely some emotional scars, but  After about 6 months or so, my life pretty much returned to normal.  My world ended in 2009.

We all have our life altering moments, some are widely publicized for the world to see and others are more personal. A terrorist didn’t take my life, but an illness did.  An illness that leaves millions of people suffering every day.

Where have I been hiding??

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I haven’t posted in a while, but have been lurking in the backgrounds reading post of the bloggers I follow, but I’ve been feeling very uninspired.  I also  haven’t been participating in any of my on line support groups and I have been wondering why I have shifted my focus away from these communities.  Instead, I have been reaching out to certain individuals from my past that I miss and that I really want to reconnect with.

For the past 5 years, I haven’t cared or thought much about these individuals.  They really, in my opinion, abandoned me when I became ill and when my illness became a problem for them.  So why now am I reaching out.  I’m not sure.  Is it because I am trying to reconstruct my old life (which I know I can’t do), is it because I need to let them know how they have hurt me in order to move forward or is it because I miss human interaction with people.  Not just any people, but people that I have fond memories of.

I’ve heard a million times that time heals all wounds and maybe the hurts I felt are diminishing and I am ready to see these people again and discuss how their actions have hurt me.  I am trying to arrange to see one person in particular within the next week or so and this will be a big meeting for me.  I wonder how I will act and if when I see this person, will all the hurt I’ve been carrying around with me  just dissipate or will I have the need to rehash why I felt hurt and slighted by him.  These are my truths that I’ve been carrying around, what will his truths be?

I hope I have the opportunity to find out!

 

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!!

Happy Holidays!!

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This past week was a holy week for both the Christians and Jewish people.  While both holidays are connected, as the Last Supper is said to have taken place at Passover, the holidays are fundamentally different.

Someone once explained to me their belief is that  Easter seems to be a celebration through suffering whereas Passover is a celebration despite suffering.

Suffering is something people with chronic conditions know a lot about.  So while we all are celebrating the holidays this week, let’s hope that as our ancestors before us triumphed over suffering, we too will be able to move forward despite our limitations.

Happy holidays to all!!

 

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.