I’m so frustrated with life and I need to vent.
Every once in a while I reach the point where I’m sick and tired of being sick and tired. I just reach my breaking point of illness and cannot take one more moment of it. Days spent being in bed and doing nothing productive turn into weeks and I’m reminded that my life is abnormal. The frustration of being unable to work and be what society considers an “adult” makes me feel completely inadequate. I am a total failure and it is beyond my control and ability to fix.
I’m a planner. Illness has taken away my ability to plan. I’ve canceled so many social engagements that I’ve pretty much lost all my friends over the years. People have moved on. Doctors, lawyers, marriage, children. All things I don’t expect to experience. (Deal with my pity party. I need it right now.)
My CSF pressure is high right now. Not high enough to warrant a spinal tap, but I almost want one just to get some pain relief. Even if is just for a day or two. I’ve had over 100 spinal taps at this point. I’m pretty sure I could perform one. Seriously…I have to tell the doctor where to insert the super long needle because of all the scar tissue I have. I feel like I should get a discount for doing their job for them! 😉
Lupus is also killing my body right now. As if the side effects of the disease aren’t enough, immunosuppressants are making me pick up every cold in the world. I feel like I’ve had a sore throat and a cough for months. Lupus is also attacking my lungs. (My weakest part of my body.) I’m largely trying to hide this from my family. I feel that they think I’m a burden and I complain far too much. I think they want me to “push” myself but I know it will just make me sicker.
Steroids are pretty much the most evil drugs ever. They can make you feel so much better, but the side effects suck. I’m getting the classic “moon face” that is so incredibly round. Acne is awesome. So are the mood swings and my desire to eat every single thing in sight. Mood swings are hellish when you have Bipolar Disorder and OCD. My OCD is crazy out of control right now. But at least my kitchen counters are crazy clean! Also, bruising so easily makes people in stores think I’m a battered wife. It is rough sleeping with a 100lb dog sometimes. Good thing she is so adorable! The nausea is the stupidest thing ever. I’m getting tied of ginger salad dressing and ginger ale very night. I don’t even like ginger!
I really try to put things in perspective and be thankful for the little things. Not sitting in an Emergency Room for twelve hours and rocking in pain as they put me though a bunch of tests is something to be happy about. To be completely honest, I miss the morphine. I just want one headache free day. I leave a night out with friends and usually cry in the car on the way home because I’m in so much pain.
I need friends. I need relationships. I need to be able to make plans in advance. I need to be able to hop in a car and go hang out at a moment’s notice. People are very unforgiving and don’t understand. I truly believe if they did they’d be willing to have more patience. However, I don’t blame them. I can’t. They just haven’t experienced it so they can’t understand.
So here is to hoping 2013 brings more healthy days than sick ones and that I make the most of the good days without killing myself by pushing too hard!
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