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.