Wednesday, April 12, 2017

Another Ruffle in the Feathers...

Another moment in the life of ICL:

I had the flu in early February.  I still have not recovered completely from it.  I have a cough that just will not leave.  Of course, my sinuses are still icky - but that is a permanent part of my life.  I am drained and tired.  This is what ICL and Immunodeficiency is all about.  My body fights battles I don't even know it is fighting.

I am sluggish, tired, no initiative, and my get up and go has gotten up and gone.  I can not force myself through daily activities - much less enjoy every moment of life.  I enjoy moments in life.  Steve and I often sit in silence because I am so lost in my own thoughts trying to figure out how to survive  - that I forget there is anyone out there I need to talk to.  It is a comfortable silence, but I don't chatter about day to day activities.  Maybe that is a good thing.  When my body crashes and it usually crashes hard.  Today I slept the day away.  This is very common in people with Immunodeficiencies.

I have always been able to push through, and though I appear to push through to outsiders and locals - (I have only lived here 5 years), I don't.  If you have not seen me during my kids growing up years, then what you see is not what my life has been.  I have always been extremely active in volunteer work.  I was active as a Girl Scout leader/SUM/Cookie Director for 21 years, I was a band booster for 9 years, I was a Boy Scout helper, an active church member for many years and I had a full time job during some of that.  I kept up with my kids their entire lives and my 3 nieces and nephew who lived with us for 2+ years.  I have always been able to multitask.  Now I can't even single task!  And a nasty brain fog is part of this disease.  I have the brain fog most days.  Directions are like reading German... and I don't speak German.

I can't dust, vacuum, do dishes, laundry and tidy up in one day.  I can only do one or the other - and I sleep in between because the fatigue is beyond any I have ever felt before.  If it weren't for Steve, I would be in a terrible bind.  Thankfully, he helps a lot.  An awful love.  He pulls his share and most of my share.  I love him so much.

Finally, I finished my antibiotics last Friday... but guess what?  I need them again as my sinuses are raw, bleeding and well... nasty.  I can never stay off of antibiotics - not even for a week.  Do you know what strong antibiotics do to the body?  Stomach issues from you-know-where.  Probiotics you say?  Guess what - they have LIVE bacteria.  Good bacterica, but still live.  Can't have anything with 'live' in it; probiotics, live vaccines (you know, shingles, some flu shots...).  So another ruffle in the feathers - I got a normal tummy for less than a week and get to start the mess all over again. 


Tomorrow I go see my immunologist... he will look at my paperwork from NIH (National Insititue of Health) and we will see where I go from there.  I know my numbers dropped (not good) and I have a few questions about things they found.  Wish me luck! 

All of these problems are what people with immunodeficiency suffer.  It is not just me - it is the entire 'zebra herd'.  Life with immunodeficiency/ICL just sucks rocks.  My life is good - it is the ICL that saps the enjoyment out it.  As I said, I enjoy the moments.  

And I sleep between them.

1 comment:

cemile duraz said...
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