Sense of time during autoimmune disease

sense of time Senso del tempo durante la malattia autoimmune

The sense of time during an illness can vary greatly from person to person and from illness to illness. Some people may perceive time as flowing very slowly, while others may feel it flying by.

That year was the second worst of the two worst ever in that long period that seemed to never have an end.
I have such fuzzy memories that I really have almost no accurate ones.

It was during that year that I also lost my cell phone number because I never kept it accessible, my 338 phone number -- which I was very fond of. I didn't want to communicate with anybody. I needed to be alone and I was studying day and night at times when energy allowed me and my sense of time was indefinable.

At that time unfortunately I was persuaded to take cortisone, not the common cortisone but Acth with the Synachten. A very powerful drug that they also use in the case of lymphomas and other similar monsters, as well as in the most unrestrained dooping.

An injection so powerful that it could have very significant adverse effects, and I was aware of it, not because it was written in the bugiardino, but because I was well informed.

I remember my mom knew the risks and as soon as I gave the injection then she wouldn't let go of me until she was sure that my heart was reacting the right way, yes because that drug made my blood pressure go up a lot and I remember well how my face at one point would turn red and hot, I felt flushed I was dizzy but I wasn't afraid.

I was not afraid because at that time, although I tried various therapies, deep inside me, I began to want to stop treating myself.

Because even that drug was not working and I felt it... Because that was yes a terrible year but it was also the year when in the month of May I saw a message. A message let's say "in a bottle" that was almost a year old, an interminable time if we think about how immediate and fast the means of communication are now. It was a message from the only person in the past who had managed to make my heart flutter, not out of fear, but out of total beauty of how I felt about him many, too many years back.

I was only 16 years old, the age when you only think about playing and spending fantastic memorable summers at the beach possibly. It couldn't be him!!! My mind wouldn't accept him, just now when living I couldn't anymore. Just now "no" was screaming inside me.
That was the year I tried to disappear, and now I am so ashamed just to have thought that, from sorrow, my blood freezes, although, inside I forgive myself, knowing how I had really come to the limit, because I really couldn't live under those conditions anymore.


At night the drug gave me hallucinations and severe insomnia so I spent months in total sleep deprivation. I would scream for hours from sorrow, from tension, luckily I slept in a distant room where few could hear, and, anyway, I stifled crying and screaming as best I could and didn't even care much if anyone heard me. I had made it to the maximum of 72 hours straight without closing my eyes for even five minutes.

It was a year that I wanted to totally erase from my heart and mind, it is a year that is still too close to forget but already too far away to steal any more time from the present.

It was a year I would like to cross out of every diary and calendar. I no longer had even spiritual strength to run after my dreams. Without legs I was nothing. I could still think yes, breathe, see and speak, but I wanted my legs and my belly and control of my body back.
Just them. Because I had always taken them for granted and taken for granted instead they made me realize that there is really nothing taken for granted.

There are so many years in life when everything can and nothing is accomplished, then come the years when almost mockingly everything is accomplished but nothing can be done anymore.

Life in that accursed year passed me by and I couldn't see it, it slipped, slipped right out of my sight, my sense of time was that in here you don't notice the days go by, they fly by and you don't notice anything.

In the few moments of peace, I would try to go to the center of me, close my eyes, breathe and still not know that you were the life I wanted more than any other.

"Hope is a pain that does not give up."

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