Originally posted December 2013
It’s been a rough few days for me. On Wednesday night I had a bout of post herpatic neuralgia. I had shingles in my face back in 2008, and to this day I still get times when my left nostril and face either are sensitive to the touch or it feels like I have ants crawling under my skin and they decide to give a sting here and there. And as a result, I didn’t get much sleep.
By Thursday night the neuralgia had passed with a dose of Nerve Fix, and I got to bed late, around 2:00 am. As I settled into bed, and began to dose off the sarcoidosis pain kicked. What is sarcoidosis pain? It’s what I named the pain I get in my torso for no apparent reason. It feels as if every organ is rubbing against each other. As if every muscle is aching and no matter where you turn, it just feels as if your insides are under pressure.
Having heart failure, I am already aware of my heart beat. I feel when it slows, when it speeds up and when it skips. When I have my bouts of sarcoidosis pain, my heart feels as if it is having an argument with the rest of the organs in there. And the only way to relieve the pain and discomfort is to sit up. And then I can’t sleep. So I lie back down and toss and turn trying to get comfortable. I will eventually fall asleep, but then the pain wakes me up again and I need to reposition my body. Years ago I bought a memory foam mattress to alleviate the pressure. It does help a bit but nothing to write home about.
And so yesterday I was faced with a busy day and probably only got about three hours of sleep, and no hope of a nap being snuck in anywhere. I got up around seven, left home around nine to do some grocery shopping for a dinner party I was having last night. Came back home and unpacked.
Unpacking groceries for me is not just shoving stuff into cupboards. I am a bit of a germaphobe, and I have seen just how and where groceries are stored, and so when I bring them home I wipe each and every can and box down with Lysol sanitary wipes. Yep, sounds compulsive, but when you are on prednisone for going on [fourteen] years, you do everything to protect yourself. Being sick with heart failure, pulmonary hypertension and severely scared lungs is no picnic, believe me.
So I rushed to unpack seven bags of groceries, then I had to get dressed and rush out to a function that went from 12:30 to 3. From there I had to drive 45 mins to pick up something I ordered for last night and then drive home to start making dinner before everyone arrived at seven. I never got into the kitchen until 5:45, and worked like a crazy man to have everything ready by seven. Dinner was fun and everyone eventually left by 1:00 am
You would think I would be exhausted and head to bed. No. There was no way I was going to bed with a pile of dishes on the dining room table and the kitchen. So we stayed up cleaning up until about 2:30. Head to bed now, right? Nope. Never can go to bed without showering no matter how tired I am. So I never got into bed until around 3:00 am.
After being up for 20 hours when I only had a few hours sleep the night before would make me just pass out right? Nope. My nose decided to stuff up and I could not breathe. The oxygen pumping into my nostrils from my O2 supply had no where to go and so I could literally hear it whooshing. I eventually dosed off only to be awoken at 7am by the cat who decided his hunger was more important than my sleep.
Now I am up. It’s snowing and I have no where to go today. So I am going back to bed and hopefully actually get some sleep.
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