Writing 101: Serially Lost

losttime

Losing someone special or something that you care a great deal about is very painful, yet it’s something that everyone has to deal with and process in their own way and in their own time.  I lost 2 very special people, within a few months of each other and I’ve been thinking all day about which one I should write about and how to approach this post.  But as I sat down to write, I realized the greatest loss I have had in my life is losing the last 5 years to an illness.

When you lose a person, there’s a grieving process and the pain and sadness ease up after a period of time, but what happens when you lose your life to an illness and I don’t mean death, I mean having to figure out a way to live a purposeful and happy life, while you lost your previous life.  Grief associated with an ongoing illness isn’t as finite as losing a loved one.  The event happens and doesn’t go away.  How can time heal all wounds when your life is a daily permanent reminder of that loss and it is never ending.

Five years ago, I was in a great place, living a great life, not perfect but great.  I had entered a new relationship which was very special to me, I had a terrific job, where I was fairly compensated and I had freedom and unlimited choices.  I was happy and optimistic about my future.

It was a very cold February night as I went to sleep, thinking about the fun I was going to have at tomorrow’s Super Bowl Party and hoping that the numbers I picked in the office pool were going to net me the big win of the night.   I fell asleep quickly that Saturday night and when I awoke on Sunday morning, nothing was the same.

I couldn’t move, couldn’t get my legs to support my weight and I just lie there wondering what was going on.  After a while, my legs stopped shaking and I was able to make my way to the kitchen and brew a pot of coffee, thinking that would help me get on with my day.

Unfortunately, 2 cups of coffee later, I was in no better shape and had to go back to bed, where I spent the better part of the following week.  Everyone kept telling me I must have picked up a nasty virus and that I’d be back to normal in no time, but I knew something was very wrong and that a week in bed was not going to cure this ailment.

When you have a chronic condition, you are forever walking down a imaginary line that separates the past from the future. I think back to what I used to be able to do and think about the things I’ve had to give up and the time that I lost.  When I look forward, I can’t really picture what my future will bring, as I’m entering unchartered territory.

 

 

 

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To Stress or Not to Stress

stress

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.