Saturday, 18 October 2014
My eyesight is still as bad as ever, and that is a complete disaster to me. I have a passion for books, both reading them and writing too. I have a back round in editing and with failing eyesight, that is completely impossible to continue.
At the moment, the sight in my left eye is all but gone, just a little pin prick of vision remains. I have had a rough week with the soul destroying pain of Trigeminal Neuralgia, and as a result my eyesight has suffered. It will improve as the pain eases slightly, but it hits me like a sledgehammer without warning. My pain is continuous, but a few times a day the pain gets so intolerable, strange thoughts float through my mind. They are there for a split second, but they are there. There is no way in hell that I will ever act on them, but when the pain gets so bad, and the darkness threatens to take over, these thoughts can act like an escape plan.
The entire left side of my body is also betraying me. There are times when the entire left side of my body goes numb, especially after a bad attack. Other times there is some pain in my hand and down my left leg.
I could be standing up and I get pins and needles in my left arm, and sometimes in my left leg. I lose the power in my arm and sometimes my leg, so standing up can be a challenge.
I had an appointment with my pain management doctor last week, and he is concerned about these new symptoms and my level of pain. It is widely known and documented that Trigeminal Neuralgia pain and the frequency of attacks increases with age. I am 28, what will this be like in 5 years, 10 years?
I am being referred to a Neurosurgeon, and that scares the shit out of me. I don't want anyone messing around in my brain, but can he help me? I have read that Atypical Trigeminal Neuralgia is so difficult to treat, and very few procedures have any effect.
So now I will have 4 specialists on my case, not including my GP. It is daunting and frightening. some element of my life back, that's all. I want to be able to work, have some kind of a social life and be "normal" again. I want to have the same problems and worries that everyone else has, instead of the constant fear of more and more pain. Maybe this surgeon will have some answers for me?
One thing that I am worried about is this;
I am terrified that there is more to my diagnosis than ATN. I keep getting the impression that the specialists aren't telling me everything, but perhaps it's simple paranoia. I have a few more symptoms that I haven't mentioned, and those are for another day and another post. I have informed my doctors, and I got a piercing look from my pain specialist. My GP is pretty much powerless now, but he is great for advice and some reassurance. I have to touch base with him regularly so he can monitor my medications.
I want my proper eyesight back, I want this numbness in my body to go away, and above all I want this monstrous pain gone forever. Those may be pipe dreams, but the little bit of hope that I still have is all I have left.