Numb.

Thursday already? Yesterday I came home from a week-long stay at the hospital. Again. Sigh.

On January 2nd my back pain was so severe even my strong painkillers didn't help and I had to drag my weary, achy arse to the first aid. I couldn't walk much at all, my right leg was partially paralyzed. What a joyous feeling that was, I'm sure you can imagine...

Anyway, they took me into the neurological ward and there I spent a hellishly long week, mostly bed-bound with a bad flu and high fever. Something good did, though, come out of the ordeal, but it wasn't exactly my doctor who came up with a solution to the hurt-y situation but me, mom and my husband. An injection of strong muscle relaxant to my butt had helped ease the pain when I was still in the first aid unit and we asked the nurses if they could give the injection again and they did and it helped, again.

Turned out that that particular med was also available in a pill form and those I continued to take when the pain got real bad and it was such a relief mentally as well, finding another way of easing my anguish, other than the bloody opiates I've been taking for a while now since nothing else helps. 

There's a problem with having terribly strong pain and being a young person with tattoos.

I'm sure you can see where I'm going with this. I'm scared stiff of getting labeled as a pill junkie who just wants stuff to get high on. That couldn't be further away from the truth. I don't even drink alcohol, forfucksakes. I've only ever tried cannabis when it comes to illegal substances and that was eons ago, too. It's only been with these awful aches and pains that I've unfortunately grown to know opiate painkillers, for example. The first time I was introduced to them was back in January 2011 when I broke my ankle badly, got a nerve damaged during a surgery and was in helluva pain because of said damage. I spent couple of weeks in hospital then and was given strong chemicals for my pain. 

One moment in particular I doubt I'll ever forget is the first time I knew no-one believed me and the heaviness of the situation with my pain. A nurse came to the room after I'd called for her, to ask for more painkillers because the last one hadn't helped one bit. She told me that she wouldn't bring me the pill, because "I don't believe you are in pain, you can't be because you just got a painkiller. You can not be in that bad of a pain". Gee, thanks dude, that's just what I needed.

The same went on and on and I felt so happy when they finally examined my neural system and found a fucked up part in a nerve in my leg. Then and there I had it in black and white, that I was indeed in very much of pain and that it was all real.

Well, back to this day, I don't have turquoise hair and a ring dangling from my septum anymore, but I do have even more tattoos now. So I must be an idiot, just complaining to get shit and get high.

Fuck you, all of you who don't believe me.

See, now there's a new thing in black and white and that's a diagnosis of Ehlers-Danlos syndrome in my mom's medical records. Q79.6 and that means that I, too, really truly have this condition and that means that I am indeed in real pain. In my records my diagnosis is still Hypermobility syndrome, but it'll change as soon as I can drag myself to see an EDS expert, the one mom saw this Monday. It's all becoming clear and official and it's both such a relief and scary a thing, because now all these different symptoms are real to the world around me, too. And this is a condition that there's no cure for and it's reality.

Anyway. What a rambling of a post this one became. Oh well. I'm back home and hopefully am able to stay out of hospitals for a good while now (I do have lots of examinations coming up, but for them to be done I don't have to stay overnight in there).

I hope I never ever have to cry and beg for something other than paracetamol for my pain, because paracetamol doesn't work for me. At all. Neither does ibuprofen. They don't cure headaches, they are of no help for my menstrual pain. And they certainly are of no use when faced with the aches having to do with EDS.

Hell, for the horrifying pain in my bones, the ones I've had for ten or so years, the ones I live with every single day,

NOTHING helps. Nothing, not even the fucking opiates.

I just might be a bit pissed off with medical staff right now. Well, with a "doctor" whose hands I was in for the last week. Merja, I hope you never ever treat another patient with such a lack of belief or respect.

Merja, you might as well sod off.

Ok, I'll stop before my head explodes.

Friday morning haze.

Hi.

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.