Feeling Rough and Remembering my Sister.

You know, I've  picked up just a little in July.  Still, overall, I'm feeling sick and rough.  I saw my NP this past week and of course had to suffer a day or two crash just from the outing.  Ironic, if you ask me.  I have a medical appointment and am sicker because of it.

We did do blood work because I wanted to see if I'm anemic.  Not only am I sick and tired, but more out of breath and more lightheaded than usual.  I'm not anemic.  In fact, it turns out that the floridix and vitamin C have brought my ferritin levels into the normal range for only the 2nd time since I've been ill!!!

Lots of people don't seem to understand that low ferritin or iron deficiency does not equal anemia.  Anemia means that either your hemoglobin or red blood count is low.  The most common cause (but only one of many) is iron deficiency.  But you can be anemic for reasons besides iron deffiencny and you can have low iron or ferritin stores and not be anemic.  I have had bottomed-out iron or ferritin levels for over 10 years.  Still, I've only tested anemic once and that was last summer.

I'm pretty happy that my ferritin levels are a bit better (still on the low end of normal) but unfortunately it hasn't translated even slightly into more energy.  On the other hand, my NP did call to say my WBC (white blood count) is mildly low again at 3.8.  This is barely considered low, but it does seem to coincide with my sickest times.  Most Drs. wouldn't even bat an eye at this level, but for me, mildly low WBC and occasional neutropenia just seem to be part of the illness.

In other news, I also had my longest interview yet, which in the big scheme of things is good, on the other hand it was completely draining  due to my energy being so low.  I have now conducted 7 interviews by phone or skype for my PhD research and I have two more scheduled next week.  My hope was 12-15 interviews total, and I have 11 people committed, so that is progress.  Despite it being really hard work to do sick, I enjoy talking with people about their work as educators.  It's so nice to do something that takes me out of myself and my own little world.

A lot of the time I try NOT to think about my life with illness.  This is hard because there is little escape.  I have an hour or so in the morning where I don't feel too ill.  If I don't test myself during this time (e.g. keep my feet elevated and stay mostly resting) I can almost pretend or imagine I'm not sick.

Otherwise, it takes a lot of work to put my illness out of my mind because it is so potent and overwhelming.  I stand or sit up and am dizzy, it hurts to breath like there's an infection in my chest (how does one avoid breathing?), every night my throat is so sore, my armpits ache and throb (lymph nodes) and the fatigue and weakness and feeling of icky sicky are just impossible to ignore.

For most of us, at least eventually, life throws hardships and tragedy at us.  Some of us more than others.  I do not believe we choose a good part of our destiny.  Many things happen to us (like illness, loss, trauma) that we have no power over.  On the other hand, we can choose what to do despite all the horrible stuff.  There is a lot I can NOT do because I'm sick, but I can still choose what to spend time thinking about, how to spend my time while I'm laying down, how to treat my friends and family when I do talk with them, etc.

For some reason I've been thinking about my sister in this regard.  I am the 4th child in a family of 5. My oldest sister was born with Downs Syndrome and a weak heart. Then, when she was 2 she had a stroke.  She could walk and talk, but not well, she was partially paralyzed.  She always walked with a limp, couldn't run at all, or even walk very far, and one of her arms was not very functional.  Growing up with her (she lived with us part-time), I witnessed someone living with  a mountain of struggles and disabilities.  And yet, I think she may be one of that happiest, most joyful people I ever met.  Truly. She died at 19 during a hip operation.  Her heart failed.  I think I was 13 (8th grade) at the time.

For some reason lately, when I'm feeling sorry for myself, I think of her.  Not that I never saw her frustrated when she couldn't run or grasp something.  And it's not that I didn't see her sad when people were afraid or awkward around her because of the Downs Syndrome.  It's just that she spent so much of her time, despite all her challenges, happy.  I think about how I might be happier despite living with M.E.? How I might better find joy despite feeling horribly ill?  Ideas?