Friday, December 21, 2012

Friday morning haze.


I felt like writing right now as I am trying my best to stay awake by forcing myself to do something and gulping down a whole lot of coffee.

Yesterday it had been exactly one week since I got home from a long stay at hospital. Went there paralysed from the waist down and came back walking better than in, say, a couple of years. What a learning experience it was, lying helpless in a hospital bed unable to go to the loo. Shitting into a potty, sweating from all the agony and pain and embarrassment, having nurses a decade younger than me wiping my arse.

I'm really glad they kept me well medicated because of mysterious, strong pain in my spine (that started back in January 2011 when I broke my right ankle in three places and was attached to an epidural painkiller pump for a while due to my abnormally strong pain - and as they kept the epidural IV in my spine for some days something happened in my spine and it's been at times unbearable, the pain, ever since then), because being high from the strong meds was actually a good thing for it helped a little with coping with all the humiliating yet perfectly human details of being paralyzed.

Yesterday, what a day it was. I had a meeting with my psychiatrist and therapist and we discussed about how being back home had made me feel heaps better in every way. But as I am sure you can imagine, all this has left me mentally quite beaten to put it nicely and I am lucky enough to get extra help going through everything that's happened during this month of unbelievable things.

I'm on a new kind of medication for both my depression/general confusion/anxiety/whatever and this chronic pain in my bones in my limbs (that I now know to be there because of the Ehlers-Danlos syndrome). The med in question is called Triptyl and since last night my dose is 20 mg / day. It has yet to have any sort of effect on the pain issue, but as it is with most meds, it'll take time to start working. There's just this one problem with this particular drug and it is that at the beginning of the treatment it makes one really fucking tired. At least for me it does that. I'm having trouble keeping my eyes open as I write this. This morn's fourth mug of coffee is coming up. Ugh.

Speaking about medication stuffs, I have a lot to tell about a (neural) painkiller called Lyrica. I don't feel coherent enough to go into all the details about my experiences with said crap of a thing of a pill, but I'll just say this: Lyrica was one of the causing factors on my paraplegia. It caused me symptoms that matched with the symptoms of MS disease. Terrible ataxia and so on. For some people Lyrica is helpful a thing, but for a lot of users it doesn't even work. Fuck you Pfizer and your over-marketing of a drug that is often times not only useless, but a real problem.

More on that later. Onto cheerier subject now.

Yesterday I got to run around the city taking care of things! Going grocery shopping for the first time in over a month was incredible an experience. Holy shit. I felt like a real human being again, with all my kitchy get-up, looking like myself. And what's best is that I walked. A lot. On my own two feet. With the help of my dear husband. It was amazing. Spending a month (or even a week or two) in a hospital, wearing depressing hospital pajamas etc is quite sure to dampen the feeling of being an individual, believe me. And I am a person who loves to wear outrageous things, put on tranny make-up and generally just be... my own weird self of a creature. Therefore being able to be myself again felt incredible and healing and empowering. And those feelings, I find, are greatly important for a sufferer of a chronic physical condition (of any sort). 

I am me, I am not my disease. I have a disease but I have my personality as well. Damnit.

Okay, got to start caking on make-up again, for I have businesses to take care of today, too. Like a mantra, I keep telling myself in the midst of all this ache that I am me. I am me. I am not my disease, I am me.

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