A blogger that I really admire gave me some sound advice recently. She told me to always make sure I am my authentic and true self on my blog. So I am following her guidance and taking the time today to talk about a part of my life that’s not glamorous or pretty or shiny…it just sucks. I should acknowledge before going any further that most days I am grateful. Grateful for the life I have, the love I’ve received, living in a lovely house, both of my parents living, friends that care about me, a good paying job and that things aren’t as bad as they could be. I acknowledge all of that, but some days I’m just plain sick of being sick already!
I’ve mentioned here before that I have Lupus, a chronic autoimmune disease. As far as Lupus goes, I am “luckier” than most in that I haven’t had any kidney problems, have all of my limbs and have led a fairly self-sufficient life. I’ve never had to go on disability from my job (and hopefully never will, but who can say?), I can drive, get out of bed most days without assistance, etc. However, I am still reminded every damn day in some way that I have this chronic disease, that I will always have this disease. I know I’m preaching to the choir for all of you other sufferers out there of chronic diseases. It sucks, doesn’t it? A woman with Lupus once wrote about the spoon theory and I’m sure it applies to many chronic diseases. To summarize, it’s the idea that some people with chronic disease have a limited number of “spoons” we expend to get through the day. Getting up and getting ready might take 2 spoons on some days and before we know it all of our spoons are spent and we have no energy left for the remainder of the day.
I was at the ER last week (don’t worry, false alarm and everything is fine) and while I was in line waiting to be checked in and my husband was parking the car, I noticed that the furniture was different “than last time”. I had to chuckle to myself otherwise I knew I would cry because it’s a little sad that I’ve been to that ER enough that I’ve noticed when the decor changes. Ugh. The bottom line is sometimes I am sick of being sick.
I am sick of not having a reliable or predictable level of energy every day.
I’m sick of feeling guilty when I am not as empathetic of others that are “just normal sick”.
I’m sick of worrying what my quality of life will be by the time I’m 50.
I’m sick of calling in sick.
I’m sick of flaking on social events at the last minute because I know I don’t have the stamina to get through them.
I’m sick of fretting about talking to my friends about my health because I don’t want to be “that friend” that talks about her health all the time.
I’m sick of random new health problems popping every year that are somehow caused by the damn disease I already have.
I am sick of never being just “normal sick” (I can’t remember the last time I had a cold that lasted less than 2 week).
I’m sick of knowing where my “good veins” are because I get poked so much.
I’m sick of taking Alleve.
I’m sick of seeing a doctor of some kind at least once a quarter.
Lastly, I’m sick of staying positive, putting on a brave face when all I want to do is have a “pity party of one”.
Anyway, I had to get that off my chest. The last few weeks have been tough and I just haven’t been able to fake it. The next post will be something lighter I promise, I just needed to get this out to get out of this funk.