Went to the doctor\’s yesterday. Went to the doctor\’s last week. Nothing new, right? Wrong. Got some test results back. Got some new tests ordered. Got told about something called transverse myeltisis. Got told that is probably what has been the underlying problem all this time and that it is the reason the left side of my body and my back have been steadily collapsing for fifteen months. If this is what it is and has been, I swear to fucking christ, I do not think I can get through this. Not this on top of everything else.

My doctors are looking for lesions, but even if I do not have them, I could still have TM, just like they think there is still the possibility that I could have secondary-progressive multiple sclerosis, in which you also do not have to have lesions in order to be sick with.. Both are neurological autoimmune disorder diseases. Both exhibit the symptoms of fibromyalgia, but fibromyalgia is not an illness of deterioration, whereas my left hip has clearly been deteriorating. My fibromyalgia-specific doctors have not been able to figure it out, so I have been referred around a huge chain of degree obtained specialists, most of whom assess me, say there is something physically more than what they can find, but that they do not know what it is and that it is out of their specialty. \”Go try this doctor.\”

The doctors I am seeing now asked all the right questions from the beginning. Everything has been spot on, even more so than when I was first diagnosed with FMS after ten years of living with it. Transverse myeltisis often develops as a co-morbid (secondary) disease after acute infection with another illness. My encounter with the ever present Epstein-Barr virus (FMS) in 1995 could have set it off, but I had the flu during Thanksgiving of 2001, and that was when the pain in my left side began and has not stopped since. TM can also set in after influenza has been knocking on the door.

My doctor kept asking me if I have problems having sex. Wow. No one asks me that, not even my gynocologist. As a matter of fact, I do. \”Psychological, or physical?\” Physical, hello. It hurts like hell and to come I have to gnaw the hell out of myself and my lovers can almost never make me come because they are afraid to be as rough as it takes. \”Trust me, you\’re not going to hurt me — I barely have any physical sensation there.\” \”Um, honey… that\’s not normal. How did that happen?\” \”I have no idea.\” Well, now it looks like I know. Sometimes I think ignorance really was bliss. The more I learn, the less I know, and the less I want to know, and the more angry and confused that I become.

Since it was Valentine\’s Day my doctor pointed me toward all these things… MS and Intimacy, Issues of Sexuality Surrounding TM, and Fibromyalgia and Female Sexuality, which I already knew about. I am still looking for the information about or for people with chronic and deabilitating pain syndromes, their partners, sexuality, and the desire to include BDSM in the relationship. It has not been written. There is no information out there.

Am I the only person who already hurts all the time who likes to hurt other people and who likes to be hurt even more than I already hurt? Psychologically I understand myself completely and basically everyone other than my psychologist thinks that I am a really sick fuck. But if you had walked in my stilettos and stompy boots, you would understand this the way I do: that this is the only way I have of controlling the pain that fills my body every day, and that being able to control the one thing in my life over which I have no control is the biggest turn on of all.

\""But

 

People who have “invisible” MS symptoms have a unique set of problems. Some people assume that you don’t really have a disease. This can cause frustration and anger. Learn how to cope with invisible symptoms.