In this moment I feel quite normal. I kissed my hubby goodnight as he drew me close for an extra snuggle before drifting off. You would think that I would turn over and fall asleep near his warmth and care but that simply was not the case for yet another night . . . That is just not the way things go around here far too often . . .
How come the wretched hellish experiences of mine have become a normal occurrence around here? Here’s what I mean:
- Puzzling symptoms lead to medical appointments and tests, passage of time while I research answers, doctor visits for the results, the start of some new treatment, and (instead of relief) the exacerbation of the symptoms we were supposed to be curing!
- Prescriptions, supplements, special diets, manual therapies, trial-and-error yield results that wax and wane in effectiveness until they are simply useless or make me worse.
- Professional counseling determines that the origin of this serious illness is not psychological however the trauma of it brings sadness every time and sometimes even triggers memories of every and any bad situation I have ever endured.
- My beloved’s rising to the cause of caregiving, from chores to feeding or assisting me to the toilet, eventually helps me recover just before he must either leave the house for work or retire for bed with his own case of exhaustion.
- Expenses beyond belief take away tremendous resources intended for the future: a time plagued with stress and uncertainty from not knowing when or if these troubles will ever end.
- Hope can appear on the horizon as I make temporary progress or we discover new medical explanations for my suffering only to have that hope dashed, crushed, and covered with new diagnoses, new complications.
Today was not just another day. I cannot tell you the grief that I experience after losing one more to continuous convulsive episodes. This past weekend I missed the lovely snow softly falling outside our bedroom window: our first major snowfall in the Midwest. I didn’t get to delight in watching Steve cross-country skiing out our back door with the spirited Elle pup who LOVES the snow! If I did get out of bed this evening it was with dangerous fright as my body shook, anxiety raged, and my mind calculated if I could do at least one simple task for myself before racing back to bed in a pile of screaming seizure attacks. Those episodes with respective recovery periods totaled about 15 hours today alone. Lord have mercy!
This is no where near normal. Only by the prayers of fellow believers did I get through Friday with 3 different lab procedures, an IV infusion, a doctor appointment, lunch with a friend, mold avoidance procedures, and a trial of a new treatment remedy. I collapsed into bed for almost 10 hours of sleep without any episodes then BOOM, the next 2 days were largely problematic. One drop of a new remedy that may have eased my symptoms of Friday made me worse as Saturday turned into Sunday. Somehow I did get some Christmas cards ready-to-go however! Wow. That is simply amazing.
Please forgive me that my tone is angry tonight. I do not have words of encouragement, scripture to bring hope or any insight as to what the heck is going on with me. There are new problems with which to contend. Tonight I am in survival mode. It’s 3:08 in the morning and I have to get things set up for my home infusion care tomorrow morning: an expensive treatment of merit I seriously question. Chronic Lyme disease? Heavy metal toxicity? Which one is it already?! Maybe before I go to bed I will try to finish cleaning a bathroom that I started 2 hours ago? Surely I will eat some more to try to restore the calories spent screaming and writhing in bed today . . . At least my back is feeling some better though. Hooray!
So here’s to Christmas cards getting together and less back pain. I have a roof over my head and food in the frig to munch on shortly. My beloved is sleeping soundly and welcomes my chilled feet on his warmed body when I will join him in an hour or so. Well there ya go. Some sweet signs of normalcy do exist after all amidst some sweet blessings too.
I just can’t stay upset very long with you listening Gentle Reader. Thank you. Here’s a cartoon for you. You rock! JJ