A day in the life of me.

Pain dominates my life, it controls every action and thought I have, and I can’t help it because the pain is so severe all the god damn time. Every day I wake up in pain, sometimes it’s at the lower end of my pain scale, which is still a 6/10 but that’s the best I get. Sometimes I wake up and I’m already at an 8/10. Throughout the day it continues to climb no matter how bad it is when I wake up, by afternoon/evening it’s even worse. Getting out of bed is hard, because well who really wants to get out of bed when they’re in severe pain and know it’s only going to get worse throughout the day. Sometimes I think that maybe if I stay in bed and don’t get out to face the day that maybe my pain won’t increase, however that is never the case, so I force myself out of bed even though all I really want to do is sleep forever. Sleep is my friend, actually sleep is my best friend, when I sleep there is no pain, so ideally if I could sleep forever that would fix all my problems, I wouldn’t have to feel the pain and I wouldn’t be subjected to all the horrible emotions the pain brings me, which I can never seem to escape.

There’s something different about having a constant severe headache than having pain anywhere else in your body. (Not that I’m minimising other types of pain because I’m not!) But because a headache is in the place where you think it’s so dreadfully hard to think about anything other than the pain that is dominating your mind and every thought and feeling you have. I get joint pain because of my EDS, it’s not severe on the scale of EDS pain, but for me it’s much easier to deal with than the pain in my head, I can almost compartmentalise the joint pain but my headache, well that’s a different story. I can’t forget about it for a minute, because it’s in my head.

I go into college for lessons on two half days a week. I have one lesson on each day but they are three hours long with only a 20 minute break halfway through. I sit there and I attempt to concentrate but it’s so hard because the pain is dominating my mind and is usually really bad and concentrating only heightens the pain. It makes me angry because I want to be able to learn, to concentrate, to not have the pain dominate my life, but the pain always wins and makes me feel weak and like a failure because I can’t do anything. So mostly I just sit there trying dreadfully hard to concentrate but the pain won’t let me so I sit there feeling miserable and not really taking anything in. I spend a lot of time outside of my 2 half days of college a week in bed, lying there in pain and miserable because I’m in so much pain.

By evening I feel like there are a hundred knives stabbed into my head and my head is about to implode/explode, it’s hard to do anything other than lie there and even that hurts far too much. And thus the cycle repeats.

The majority of time I feel desperately depressed because of the pain I’m in, the majority of time I don’t even want to be here. I know I’m weak because of the pain, because I let it control every thought and feeling I have, but I just can’t help it. I’m so desperately helpless because no one knows how to help me, and the truth is I don’t think anyone can help me anymore. Everyone has done everything they can, doctors have tried and failed, therapy only does so much, there isn’t anything more anyone can do and I feel so lost and stuck, I really don’t know what to do anymore and where to go from here.

The only fix there is is to not be in pain anymore, but I’m going to be in pain for the rest of my life. My neurologist said it’s highly likely I will be, and don’t know how to explain it but in my heart I feel like I know the pain is never going to get any better. I know my body and I know my headache, resistant to anything and everything, it’s stubborn and I know it’s probably never going to leave. I don’t know how to cope with that, I don’t think I can.

On the 14th of January 2015 my headache reaches the 5 year anniversary. That’s 1,825 days of constant pain. There’s something different about the 5 year mark than say the 4 year mark this past year, something worse. 1 year was pretty bad, actually they were all bad, but 5 years, half a decade is even worse. The anniversary just sends me spiraling downhill even worse every year, it reminds me of everything I’ve lost, everything bad that has happened. It reminds me that because I’ve reached 5 years, there is nothing stopping this going on for the next 5,10,15,20 years/the rest of my life, and that scares me to death. I worry about it all the time, how am I ever going to get through it all, how am I going to live with this pain for the rest of my life, how the hell am I going to cope. No one wants a life in constant severe pain, but that is what I’ve got and that is what I’m probably going to have for the rest of my life, and I don’t want that future, I don’t want it at all. All I see is more pain and misery in my future and it’s not very inviting.

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2 thoughts on “A day in the life of me.

  1. Sweetheart, you are NOT weak, not even a little bit. Anything telling you that you are not strong enough is wrong, its just the stigma against pain-induced depression/anxiety/ptsd/etc talking. In reality, you are writing this, you are promoting awareness, you are a student, and you are successful for those reasons and so many more. You’re allowed to be angry and depressed and scared, it’s human. Head pain is so miserable, as is the EDS pain, but you are turning your pain into words, words which educate and enlighten others and words which will help turn back the stigmas against chronic pain. You’re a warrior, darling. Keep fighting. I have so much respect for your hard work and perseverance through five years. November was my three year pain anniversary and in a few days it will be my one year since diagnosis. Not happy markers in our lives, but measure and testament to our endurance. Think of it as five years of being a complete badass, of surviving with everything you’ve got, and of never giving up.

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