Day 193 “Character Counts”

I knew something was wrong the week before my granddaughter’s first birthday.  Despite the increase in asthma medication, I was not able to get my breathing under control.  On the day of her celebration, I was in Emergency, then back home with Prednisone: the wonder drug.

This summer was more active thanks to a new home with a pool and within walking distance of a park.  Our new lifestyle felt promising, especially the fact that we were entertaining more, and enjoying the great outdoors.  Thor was still recovering from a spring full of surgeries, so his movement was limited, but he too felt more positive.

By July, the pain in my body had increased, but I told myself:  No pain, no gain, and pushed harder.  Isn’t that how the body works?  When record high temperatures hit mid July, I decided that was to blame for my troubled breathing.

The Prednisone didn’t work, so I continued to up my meds and rationalized that once the frost came, everything would be better.

Soon school was back in and with it the onslaught of germs.  I constantly felt like I was fighting something, and then one day, standing talking to a peer, I felt faint, unable to breath, and was sweating profusely.  I called the doctor.  An xray showed pneumonia.  A bout of antibiotics and I would be good as new.

Except, I wasn’t, and my breathing became more and more laboured and the dizzy spells continued, and the sweats, and I found myself back in Emergency and on the wonder drug again.  Twice, with no effect.

By December, the doctor decided that maybe this wasn’t asthma, and began to treat me for COPD, and arranged lung tests.  Nothing.  So, I went for heart tests.  Nothing still.

No, it’s asthma!  declared the lung specialist and he upped my medication, stating he would see me in two weeks.

In the meantime, I felt more and more like I was swimming against the tide, through thick, debilitating muddy waters.

I just want to be able to breath again!  I told him on my next visit.  To be honest, none of these meds are making any difference, and I am fed up!

Now I like this doctor just fine, but he has a undeniable sense of self-importance and on any given occasion is prone to answer his own questions before hearing my response, but this day he stopped and looked at my file.  Really looked at my file.  He went on-line and looked back over all the tests, and former tests and diagnosis, and sat back and looked at me with renewed interest.

You have Fibromyalgia, he said, as if realizing it for the first time.  This is not asthma.  This is Chronic Fatigue. 

Chronic Fatigue Syndrome.  My family doctor had mumbled it questioningly months before, then dismissed it in favour of further testing.  I can treat your lungs, he said, but it’s back to your family doctor for the rest.  

So, there it is.  A diagnosis.  Eight months of struggle, exhaustion, self-doubt, and frustration, and here is where I land.

There is relief in knowing what I am up against, but there is also an enormous sense of disappointment and a bracing myself for what is to come next.

Chronic Fatigue Syndrome, like Fibromyalgia, is an unknown that draws at best blank stares, but mostly, misinformed advice.  I brace myself for what lies ahead.

As the criticism, and ‘you shoulds’ rolls in, I realize that I will need clear boundaries, and the ability to deflect the controversy.  Now more than ever, I will need to walk with my head held high, choosing the path that supports me best.

Now is the time that character counts.

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2 comments

  1. I’m so sorry for your new diagnosis. Having said that, I believe you are just starting a journey of a lifetime. It won’t be easy. It will be painful, frustrating, depressing, etc. However, it is worth it. It has to be because it is our new reality. If you have time, I would be honored if you took a peak at my blog. Maybe something there would help you. At the very least, I list resources that have helped me regain a meaningful level of life. There is hope! Most importantly, one can “Find Joy in the Journey!”

    Like

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