When MS steals the tingling
On May 30, we celebrate multiple sclerosis (MS) - an incurable chronic inflammatory autoimmune disease of the central nervous system. Since the definition is too demanding, I will put it differently: the immune system, year after year, day after day, attacks the nerve cells in the brain and spinal cord. She also chose me as her young victim.
It started two years ago, just sometime after the blog presentation - with shivers in my right hand and fatigue. The latter was understandable. I worked hard at the office, like crazy trying out toys and writing articles. I attributed the shivers to the wrong posture and working behind the computer. Everything had an explanation. Nevertheless, the doctor sent me to see a neurologist. Unfortunately, because of the covid situation, I had to wait for a year to my turn.
Although I got to know MS well four years ago when my mother was diagnosed, I went for an examination unconcerned. Even the neurologist initially said she didn't notice anything special. But I told her about my mother. She sent me for an MRI and confirmed the diagnosis with a lumbar puncture. At our later appointment, I observed my brain scans, and they reminded me of cheese - white dots everywhere. The final diagnosis followed: PPMS.
It completely shattered me. Not only do I have an unpredictable disease, but I also have a form for which there is no cure and which affects only ten percent of MS patients. Primary multiple sclerosis is characterized by gradual deterioration of vision, loss of sensation, fatigue, dizziness, balance problems, and ultimately paraplegia. Depends on which brain cells it destroys. I play some kind of Russian roulette.
A year after the diagnosis, my symptoms did not worsen, but I had to turn my life upside down. Since there is no medication, I am on a strict diet, resting more, and doing yoga. I would take comfort in saying that my body doesn't remind me of MS every day. Although I have partially accepted the disease, a part of me still doesn't want to hear about it. It's hard to come to terms at the age of thirty that you have to adapt your life to something you weren't even ready for in your dreams.
Among all the possible fears that have accumulated this year was also the fear of losing sexual function. Hell, could you take that from me too? I carefully opened the pages and encountered only overly optimistic and comforting words at first - "even patients with MS can live a normal life and enjoy sexual activities". Do they live like healthy people? No. We will never live like others; we will adapt to illness, even in sex. Mine is, thank God, still intact at the moment, and my libido remains as strong as before, but it can happen that I will find it harder to reach orgasms over time, that the peach will not get wet, and that my libido will eventually 'drop dead'.
MS can directly or indirectly affect our sexuality. This may be due to the collapse of the central network, or the depression as a symptom of the disease can be so severe that we no longer want to have sex or see any sense in it. It was only after receiving the diagnosis that chirping in my head after experiencing an orgasm made sense. Like someone pouring water on your computer. The sensation of electricity spreading from one side of the brain to the other was unpleasant. As if I felt cell death, even though I had just been lost in the sweetest feeling in the world.
World MS associations, unlike the Slovenian one, also deal with the sexuality of their patients and, to my great surprise, even recommend the use of vibrators because, with their help, it is easier to get aroused and reach a climax. Since as many as ninety percent of men and seventy percent of women with MS have sexual problems, it is recommended to use a lubricant, penis rings (easier erections), hollow dildos, and, as already mentioned, vibrators. Good thing I know them so well.
Although the disease is disgusting, small rays of hope remain, instilling courage in those of us who fear the most. Luckily, we have erotic toys that can brighten our days and help us have better sex.
MS changed my life, and I would be lying if I said for the better. It hurt me. I was starting to live, but I have a feeling I'm starting to live my end. Even before I open my eyes, I check to see if I can still move my legs, and when I finally lift my eyelids, I'm glad I can still see. It may be true that you eventually start to enjoy life, but I'm not there yet. I'm just pleased that MS hasn't taken my tingling yet and is perhaps even stronger than before.