Viewing blog entries in category: Daily
Feeling lost when you're not really lost is a very confusing period of time in life. You're lost inside, but everything outside is poised to show you ways to go. Though. I think maybe it is possible to be lost without being lost. It's like that iconic image of standing infront of a crossroads, watching the roads go in different directions. With the wooden pole in the middle with the tired wooden pointers with somewhat still readable place names. But, if you take one of the roads presented. How do you know it's the right one? What would be the downsides? Would you miss out on something good down another road? Is the road you're about to take going to be good for you? Or is it gonna be bad for you. You've been hurt in the past so it's not like you're eager to take another road just to end up with the same result. That's the same concept as banging your head against a brick wall and expecting a different result. Only shorter, as you don't have to move much. And we all know what a very smart man once said about actions such like these. So if you take that, along with choosing roads, actually the action of choosing at all and put it together. The only conclusion could be that we are all insane. So, to sum up so far, we're not lost, we're stalled. But if we do move, we're insane. I could be happy with being insane and moving, as opposed to stalled and ... bored.
So. Today was a strange day. I got up early because I absolutely loathe to be late and it makes me extremely anxious, naturally I was late anyway because I got to the tram just as it had left. So that added nine minutes to my time. I got on the tram, almost missed my stop because I'm tired. Then I have to wait another five minutes for the tram that will take me to where I have to walk the rest of the way.
Finally I'm standing at the bottom of what seems to be an endless road upwards, looking at my phone I have five minutes to get there. I start to panic because I know there is no way I'm making that walk in five minutes. Thank goodness for my boyfriend that manages to encourage me to get up the damn hill. So by the time I walk into the doctors office I'm three minutes late and loosing my mind. of course it turns out like it always does. My being three minutes late doesn't matter even in the slightest.
My doctor is kind enough to turn off the lights in his office for the sake of my eyes and immediatly picks up on the fact that I'm not having a "good" day. He asks me if it's a bad day to which I answer that it's a bad day, but not the worst. He nods in understanding and sits me down. He tells me that after reviewing my tests and the previous session there is no doubt of the diagnosis of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. My doctor defines it as level three. Severe.
My world goes blank for what is probably a shorter time than I think it is. I find myself nodding, I knew this was the likely result, but somehow, hearing it from the doctors mouth makes me feel relief on a level I haven't been relieved since I was a child, I'm not insane, it's not all in my head. On the other hand I find my world falling, there is no "cure" for this. All I can do is keep living and try to find ways to save my strenght and keep taking pills to reduce my pain, that won't work properly because it's on a neural level so unless it's heavy opiates it won't do much.
My doctor tells me there's light in the end of the tunnel. A new drug is being developed and might be on the market for ME/CFS patients next year. I nod. He tells me that I have to register for the national Myalgic Encephalomyelitis association. I nod. He tells me that he will sort the paperwork so I will receive 100% disability. I nod.
I put on my sunglasses, there's no sun, and walk out of the doctors office after thanking him profusely. A doctor that truly cares, who would have thought. My boyfriend is immediatly angry at the system for wasting nine years of my life. Two meetings with this doctor and it was obvious to him what's wrong with me. I agree of course. But there's very little I can do about that fact.
The relief is still strong in my mind, I finally know. I feel an unfamiliar feeling of being vindictive, everyone doubting me, telling me to "walk it off" so to speak. I want to call them immediatly and say a big fat "HAH!" into their ears. That is so unlike me. And then there's the fear, the fear that I will never get better. My boyfriend talks to me as if it's a battle. A fight. "We will beat this." As he says it I feel myself getting exhausted by the mere thought of having to fight something I've already been fighting for the better part of fifteen years. That has no "cure".
We go home. And as I get inside the door, the exhaustion that's threatened to overwhelm me since I walked out of the same door finally sets in and I have to lie down. I fall asleep. When I wake up the world has changed. There is good in this. I just have to take my time. Respect my own limitations. Knowing that it's not in my head.
The day the world got better and everything fell at the same time.
So, I haven't written here for a long time now. I sunk so low into my hole of depression that I wasn't able to focus on anything, much less write it down. I have decided however, after a successful visit to a CFS specialist to try and introduce some structure to my life. It's felt like there's no point at all in even trying, but after this meeting with the specialist I feel a small glimmer of - as clishe as it sounds - hope. Here was someone that talked to me as one who genuinly tries to understand and help instead of pushing pills and saying "Have patience, just pull it together."
So, in an attempt to introduce some structure I will again try to write here once a day. At one point I will gather the courage to actually post from my book, but I don't feel like it's the right time now. I've got an ongoing writers block so I'm still stuck in the same spot I was when I wrote here last.
It's another bad day or well... I should say week. It started yesterday evening when I woke up. I got four hours sleep before I woke up again exhausted, my entire body seems to be working against me at the moment. I'm so tired I can barely make it out of bed. My place is trashed, I don't have the energy to clean or do the dishes. It will get better at some point, I know that. But right when you're in the moment it's really hard to see. I keep flashing back to horrible times in my life, and I beat myself up for letting myself go there. But there's nothing I can do to stop it.
I realised something odd the other day. My mother came to visit me a couple of days ago. We talked a bit about things I've not been able to talk to her about before and it was sort of a relief, but also disturbing. But I realised I couldn't look her in the eyes. And when I thought about it, the day before when I met my father for our weekly conversation. I hadn't been able to look him in the eyes either. I've always been able to look people in the eyes when I talk to them. I've even gotten complaints about it because apparently it's too intense. I've always preferred eye-contact. Much because you can actually see people then. But now. I'm not able to.
Victim. That word is so negativly loaded.
So, I wanted to write here everyday. And then I missed one! So I'm gonna write two pieces today. I already wrote the short story, and here is the daily rant. Missing days isn't forreign to me. Last month I managed to loose two whole days. I was wholly convinced it was Monday, while it was Sunday. And the a Wednesday just up and left...I had no idea where it went. And I still don't.
I gave up on the "Crossing Lines" series. I mean, it's a good series but it didn't engage me that much. So now I've moved on to "Criminal Minds". Ive seen it before, well some of it. But I love it. As I've harped on about before, I love how the minds works and why we think like we do. Of course none of these shows are likely to be 100% accurate, but it's still interesting to watch. The characters are engaging!
My situation seems to slowly start to solve itself, well... not by itself. It has help from me and some of the people who care a lot about me. Now will follow a waterfall of doctors appointments and a stream of people who seem to have gotten their diplomas at the back of a milk carton that want to tell me what's wrong with me. I have high hopes that this time will be better though. So here's to hoping.
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