I have spent the very worst moments of my entire life in the dark over the last month. Barely able to eat or even drink, I dropped 12 pounds in mere weeks. I eat now when the dizziness gets so bad I have to, but I regret it more times than not.
I am bed bound in the dark. My eyes make it unbearable to have any light on for long, so I lay with a tv on, a screen on front of the dimmed screen, and a few curtain draped lights scattered out of the room.
My back and ribs. Oh my God, please do something. I had only a light "fit" today, lasting perhaps a couple of hours. I call them that...when this horrendous, crushing, squeezing, stabbing, throbbing, heavy, wrenching, twisting sensation comes over me. My ribs won't really move, but even if they could I can't let them. I hold my breath, pulling a little in and out with my shoulders, as the lower ribs will be massively spasming or something. I clutch my chest with my arms, trying to push my body back together, feeling as though my lungs and heart will explode through my throat, while my ribs feel as though they are splaying out more and more. My neck spasms, adding more twisting, wrenching agony to the lot, finishing with abdominal spasms, which if any thing is in my stomach makes me feel terribly ill. My back, at the worst, feels as though I have balls pushing out of me, and thaat broken ribs or slats of wood are digging in or out of me. My family can feel and see this last one.
I do this every day. Sometimes it is off and on all day, but most likely it will be the worst starting at 2 pm, and then, depending on the individual fit, lasting anywhere from 2 hours to 16. Imagine not breathing normally for 16 hours, no position helps, no touch or aid helps. And no medication helps. My BP is Running 166/100 at times like this, and pulse is 133 often. I am a low pulse and BP patient, normally.
Sent to er one day because the rheumatologist nurse was so upset over the phone. While I have never been hovered over by doctors and nurses at a hospital before, they had no hope or help for me. Very very sorry I was in such pain, but there was no hope there either. It is terrible to know, when you have a chronic illness that the er is actually no help for you. There is nothing they can do, short of the code blue situations, so it is a waste of time on everyone's part to go. Except for the risk I am under for embolisms with my bp and pulse...
Went to my rheumatologist following the er visit, since it was scheduled. He told me there was nothing he could do. I am supposed to go see a physiatrist, a cardiologist, GI and neurologist (gottta check for MS or other brain lesions), have an MRI on my spine, etc. My regular doctors tell me there is nothing they can do to help me.
So I spend all day in the dark. I can't talk much because it triggers the pain. I can't read, reach, hold, type or whatever. I can't look downward, or any turn of neck that may "pull" at my chest. Even people talking to me, if loudly, triggers the pain from the sound vibrations off of my chest. I have to be careful how I move my legs that they don't "pull" wrong. Handwriting has to be limited. Oh, and biting anything "hard" will hurt me and possibly lead to a fit.
Be very lucky if this post doesn't get me.
I don't sleep either, since every time I sleep I either wake up nearly screaming from the dream in which I was dreaming I was in pain or from the pain I accidentally fell asleep in. Sitting, laying, walking, standing are all bad, but laying is the safest. If I am not in pain I am clinging to a soft blanket, shivering, waiting for the doom to settle on me as it has every day for 3.5 months.
I hate hearing doctors tell me it sounds like its becoming chronic. Because I know it is. After 3 months, a problem switches from acute to chronic. And for me, chronic means new you, and it won't go away. I can't even manage my own care now, I can't keep track of what doctor I am supposed to see and why, with the pain and sickness being what it is. So I am struggling to write down who I am supposed to call, but with the talking and phone holding business and needing to think clearly, it is not going well. Especially with the insurance being so weird.
I am alone in the dark. God stays with me, yet I am so miserable I don't notice exactly. But otherwise I am alone, writhing for hours and hours a day. I don't like my poor family to sit with me during the worst pain, because while I hardly know they are there, I know my writhing, sobbless crying, and groans eat at them....and I can't stop doing those things now.
I ask them to check in an hour. Two hours. Four hours. Bring Sprite or 7up, the only thing I've liked short of chocolates.
It may sound dramatic, attention seeking, since that is often what we are blamed for, that we want to be watched over, patted, oooh and ahhhed over. That we looooooove spending hours in doctors offices and having tubes stuffed everywhere. I hate it. I hate it. I hate the tests that are coming up, and I hate the idea of confirming more diseases that have no treatment, and that apparently I will spend the rest of my life in 2-16 hours of unbearable pain. And I mean unbearable...I won't even know how many hours I have been suffering when my family asks
But this is how I am living. And there is no hope thus far for any change for the better unless God intervenes, returns, or something.
