Last time I tried to explain what changes to my nerves are caused by ALS. The bottom line is that I can hardly move anything any more - keyword tetraparesis - but I can feel and sense everything as I always have. And also want to feel.
My girlfriend gave me a „scratcher“ for my birthday, a telescopic stick fork scratcher for skin and hair. You have no idea how incredibly good it feels to be scratched in my situation. It's one of those little things that you don't even realise. A quick rub in the eye, a hair fished out of the mouth or a quick scratch on the head. It's madness, I tell you. I advise you to learn to appreciate that you can do all this. Enjoy it.
This inconspicuous masterpiece brings me to my topic today. I always talk about the fact that the sensation of pain does not change in ALS. But what does that mean? What was it like for me before? Where I am said to be into pain anyway.
Let's put it this way. I like it a bit harder. Some people don't scratch me any more, because I say, it's really not meant maliciously, but like right now, it tickles and doesn't make everything better. So
please tighter or not at all.
The cover picture shows my beard after one of the best scratching sessions ever. The friend who managed it was a bit shocked when she took the photo. When she was scratching me, she was lying behind me. She couldn't see the beard from there and was following my constant „Fester...“. I wonder how you document scratches like that in the day's graph. LOL.
Anyway, the example shows quite well how I feel about pain. My illness has by no means made me as frail as my appearance would suggest. Whether it's with positioning, grooming or scratching anyway... Because there's no other way, my girlfriend sits on me during sex. Apart from the fact that I have a bladder catheter in my cock, which makes fucking a bit difficult. But you can leave your worries about hurting me at home. The only thing that hurts in this matter is being treated like a raw egg.
Just for fun, I wrote down where on a scale of one to ten I would place which pain. Maybe that will give you a good idea. By the way, the normal storing and scratching is deliberately not even mentioned. That didn't make it into the ranking. Wink smiley.
| 1 | - scratch bloody with scratches and scratch the same spot for a very long time - turn me onto my own hand while lying down and nearly break my arm in the process - not lying down at night, so that I lie on the same part of my body and on the same ear for several hours at a time |
| 2 | - Lumbar puncture without anaesthesia (draining the marrow fluid with a syringe for the laboratory)Pulling on the PEG until it bleeds from the puncture site - Mobilisation of an ingrown PEG -Laying a bladder catheter |
| 3 | - 90 minutes full-body EMG (electromyography, inserting needles into muscles and shooting current through them to assess the electrical activity of the muscles) - cystitis lasting for four days - sit up in bed despite ulcer-infected PEG |
| 4 | - Unsuccessful attempt to pee with germ-induced urinary retention |
| 5 | reserved for what is to come... |
| 6 | reserved for what is to come... |
| 7 | reserved for what is to come... |
| 8 | reserved for what is to come... |
| 9 | reserved for what is to come... |
| 10 | reserved for what is to come... |
