Overwhelmed and Overtired

My trip to the doctor Thursday confirmed that my lupus is indeed rearing its ugly head and having a wild rumpus in my body.  It appears my kidneys, lungs, eyes, and possibly BRAIN are under attack.  I really didn't think my brain could be affected, but the truth is I have been having some pretty scary episodes in which I find myself confused, unable to think clearly, remember conversations, and unable to locate things (like my vehicle at Walmart last week).  My doctor has ordered a CT scan of my brain to see what's going on in there since I have a history of TIAs.  SO in addition to my crippling insomnia, I also am experiencing vision loss and excruciating flank pain.  Oh and did I mention my joints are killing me and my hands, legs and face keep swelling up?  My short term memory prevents me from remembering if I already mentioned that I look like the Michelin Man unless I stay in bed all day.  So now I have to go back to my nephrologist, ophthalmologist, pulmonologist, and neurologist to try to get this under control. My kidneys hurt so bad that I very nearly drove myself to the ER this morning at 4:00.  I don't know what they could do for me, but this pain is becoming unbearable.  My life is like a saga of medications, pain, exhaustion, and doctor appointments.  So forgive me if I'm a little bitchy and withdrawn for a while.  It's driving me insane that my house is messy because I have a ten year old who can't seem to figure out how to put anything away and I've been too exhausted to clean.  Usually my husband helps with that, but he has been working out of town for the past three weeks.  I'm also still upset because the weekend before Easter my mom's dog (who practically lived at my house because we live on the same property) got hit by a car and I had to call the neighbor to come over and shoot him because he was suffering and couldn't be transported to a vet in his condition.  I really love animals and even though that dog was a royal pain in my ass, I loved the big dummy.  It feels weird everytime I walk outside and he isn't on my porch. Well, I'm getting really sleepy because I barely slept at all because of the pain last night, so I am going to spare you from any further complaining on my part (for now).  I'm going to try to catch a few zzz's because I really need to go to town today to get the supplies I need for my youth group's Mother's Day projects we are making Sunday night.  And if I feel like I can stay awake long enough I really want to go see Water For Elephants because I recently read the book and it was AWESOME.  But my narcolepsy makes going to the movies usually end up being an expensive, uncomfortable nap.  :-P

Lupie Guilt

As my last post indicated, I had a plan to accomplish many things yesterday.  However, thanks in part to this lovely cold, wet weather we are having, I woke up with a huge, nauseating migraine and every joint on fire.  I fumbled through getting my daughter ready for school and then downed my morning meds plus a migraine pill and an anti-nausea pill and crawled back into bed.  As I layed there willing myself not to throw-up, I realized that it was going to be another entire wasted day.  Systemic Lupus sufferers out there know that plenty of days happen that way and there is really nothing we can do about it.  We know if we try to push ourselves on a day like that, it will only result in 3 more wasted days trying to recover.  So I have had to learn to scale back my to-do lists, learn my physical limits, and try very hard to let go of my OCD driven need to accomplish everything exactly according to plan and with perfection.  My perfectionist attitude is what earned me my label "Queen of Everything."  I also get referred to as "All or Nothing Annie."  When I take on a task or plan an event or even just a list of errands to run, I get very uptight about everything being "just so" and I tend to go all out to the point of totally stressing myself out and becoming overwhelmed.

Lupus is teaching me that I can't live that way and stay healthy.  Stress is the enemy of Lupus.  So I have learned that some days I need to spend the whole day cat napping and doing as little as possible so I don't bring on a flare.  The problem with that is it causes me a great amount of guilt.  I was raised by a work-a-holic mom who often worked several jobs at a time and went to college full time, in addition to having two kids to raise and a deadbeat husband who was more hindrance than help.  She instilled this perfectionist work ethic in me, "Anything worth doing is worth doing well."  "Idle hands are the Devil's workshop," was another saying which meant, you should always stay busy working.  The fact that I can't live up to those expectations really bothers me and makes me feel like a failure.

This current flare has lasted for months and during this time, I have been forced to spend much of it in bed or on the couch.  Having a hyper-active mom and sister who constantly make snide remarks about me being a hermit, anti-social, lazy, etc has really taken it's toll on my emotions and my husband's and daughter's.  My husband and daughter are becoming resentful of hearing nasty, passive-aggressive remarks about me because they know I am sick and can't help it.  I feel like I am constantly being judged.  I don't need their disapproval quite frankly, because I have enough of my own. 

Having a chronic illness that limits my activity level makes me feel like a burden to my family.  I feel like a financial burden to my husband because I have been unable to work.  When my ten year old daughter has to make soup for her mommy and herself for dinner because I'm too sick to cook and clean up, I feel like a failure as a mom.  When my house isn't spotless because I am too sick to keep up with all the housework, I feel guilty when my husband and daughter have to pick up my slack.  I feel like a bad mother when my husband is at work and I have to spend a whole day sleeping because I haven't been able to sleep for over 48 hours, and my daughter has to spend that day alone watching TV.  I feel like a terrible friend when I have to keep turning down invitations to parties, game nights, dinner dates, and visits because I'm just too exhausted to get all dressed up and put on make-up and fix my hair.  I feel guilty when I can't make it to church on Sunday mornings because I didn't get any sleep the night before and I can't get out of bed in time to get ready.  I even feel bad for not having the energy to walk the dog. 

The bottom line is that having Lupus isn't just physically painful, it's emotionally painful.  And even more so when friends and family aren't supportive and helpful.  It is disappointing to have had dreams for my life and to have to accept the fact that I may not ever get to live out those dreams because I may not be well enough to handle having a full-time career.  That thought is always in the back of my mind and it makes me feel like such a burden to my husband because I can't contribute financially to the household, even though I went to college and got a degree to be able to do just that.  I don't need people to keep pointing out the fact that I don't have a job--I already figured that out for myself.  And for the record I have been looking for jobs and have applied for over 50 jobs in the last 2 years.  It just so happened that I graduated from college the same year the bottom dropped out of our economy, and to top that off, I became increasing sick from that time to the present. 

So get off my back critical people, I have enough self criticism and guilt to shoulder without any help from you.