Ending my Christmas on a low.

So Christmas is effectively over, all my relatives left this morning, it was nice to see them but I am very glad to have my room back and not have to sleep on the floor. The days over Christmas were mostly not so bad, the pain wasn’t too horrendous and having everyone around provided a temporary distraction from my looming pain anniversary.

This morning after my relatives all left and because the pain wasn’t too bad my sister and I decided we would go and do some quick sales shopping with our Christmas money. We weren’t out long and managed to get some good buys, but as I was driving home I hit an 8 on the pain scale, and then a little after we got home I hit a 9. By this point I was already in bed, the pain hasn’t eased any and I’m typing this in agony, but there is nothing I can do. It doesn’t matter if I’m led in bed on my laptop in agony or just led in bed, it doesn’t effect the pain and I’m still going to be in agony either way. But I can’t really do anything but lie in bed because it hurts too much to move, sit up or get up.

So I’m ending my Christmas on a low, obviously my head decided that it needed to give me an unwelcome late Christmas present of severe pain, so thanks for that head! I will just continue to lie here miserable and in agony until I manage to drift off to sleep (with great difficulty may I add).

All I want for Christmas.

All I want for Christmas is a pain free life. Is that too much to ask for? The answer to that question is yes, because there is no magical cure no matter how much I or anyone else wishes for one. My wish will never be granted and all hope that I will ever be pain free again has gone. My life is just completely and utterly helpless and hopeless and I don’t want it.

I am and always will be, the never ending headache and that will probably never change, as much as I wish it would.

That being said I hope everyone manages to have a good Christmas despite pain and misery.
My Dad arrived yesterday and all my grandparents arrive today to stay over Christmas. Which will hopefully provide a much needed distraction for me. I actually quite like Christmas despite the fact that every year that goes by I’m still in pain, but I’m looking forward to Christmas day with my family. I just hope my pain behaves itself and lets me enjoy the day as much as possible, and I hope that for all of you as well.

Merry Christmas,
Sian AKA The never ending headache.

My brain feels like mush.

My brain literally feels like mush, I can’t think, I can’t concentrate and I feel really dumb. Thankfully college has just finished for Christmas so I have two weeks off where I don’t have to attempt to concentrate in class and feel really stupid. The frustrating thing is that I’m not actually dumb, well maybe I am now but I didn’t use to be, you should see my GCSE grades I got 4 A’s 5 B’s and a C, I wasn’t stupid at all and that is very frustrating. Now I just feel like my brain doesn’t work properly, it feels like mush and I can’t get it back in gear because it just doesn’t work properly cause of the pain and I can’t concentrate, and of course that makes the pain worse.

I’ve lost direction, I don’t know where I’m going or what I’m doing with my life, it all seems pointless when I know I’m probably going to be in pain for the rest of my life. I can barely cope with part time college so how the hell am I going to cope with university and I’m anxious and scared about that. I feel like I will never be good at anything because of my pain, because of my depression. Everything seems so pointless when you’re in pain and know it’s probably never going to get any better. I feel lost and I don’t know what to do. My psychologist tried to talk to me about it today but I kind of clammed up and wouldn’t talk which sometimes happens when I’m feeling really bad and something is really getting to me, it’s like I want to talk but the words just don’t come out.

Anyway it’s a week till Christmas, my sister is already here, my Dad arrives on Monday and my grandparents all arrive on Tuesday to spend Christmas with us, so we have a house full. I actually quite like Christmas to be honest, so it should be quite nice. I’m hoping that the pain won’t be too horrific for me, but knowing my pain that’s probably too much to ask!

Severe pain, as per usual.

I’m at a 9/10 on the pain scale, all I can do is lie here in agony feeling like there are a hundred knives stabbed into my head and my head is about to implode/explode (I’m never really sure which). It hurts so much I just want to die/cry. There is nothing I can do to ease the pain, no meds to take, no alternative treatments to help, literally nothing. I just have to suffer through it which is pretty much the story of my life and it makes me so angry and miserable. All I want is something to ease my pain, is that too much to ask for? Obviously the answer is yes. I’m so done with this pain, it hurts so much, I can’t cope and it’s too much to endure, no one should have to experience this much pain in their life, so why should I?! No one lets a dog suffer this much for years on end, so why should a human?!

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.

Busy week.

So I’ve had a bit of a busy week. My mum went to Dubai to surprise my sister last Tuesday, so I was home alone, which is fine because I can drive to college and stuff now! So it was me and my dog, Bailey home alone for the week.┬áBecause my mum was away I was in charge of looking after Bailey, so it was up early every morning to feed her and let her out and then walk her at some point during the day, we had some nice walks and lots of cuddles on the couch.

College was crazy busy and I had to crack out my psychology research plan a few hours before the deadline to had in the draft for feedback last Tuesday. Which isn’t ideal for someone with chronic pain to have to sit for ages concentrating, but I had been putting off the assignment for a while because the pain has been so awful and I’ve been feeling really bad. However I managed to do it and get it handed in on time!

I also went back to Tae Kwon-Do after quite a while off, I literally forced myself to go back, there was a seminar with a world master being held at our club on Friday night so I went to that and it was really good. Then there was coloured belt grading that as a black belt I help examine at so I spent all of Saturday morning doing that.

My mum and sister got back yesterday however today they drove up to Cambridge for my sisters university interview. Words can’t really explain how proud of my sister’s achievements I am, she has three out of five university offers already and an interview at Cambridge.

Today I had college and got feedback on the plan I cracked out last Tuesday, luckily there weren’t many changes that needed to be made, so I just have to make a few changes and it will be done. However the whole research project draft is due next week Tuesday and I am yet to even carry out the experiment for it, so I have a lot to do for next Tuesday. My first law assignment is also due in tomorrow, before today I only had 200 words, but I have spent the 5 hours since I got home from college this afternoon doing it and managed to finish it. I will be heartbroken if I don’t pass because I’ve put a lot of effort into it today and the pain is really bad now. I am quite pleased with myself that I managed to complete it though.

The pain has been pretty awful, but hey that’s no change. Though other than the pain I feel a bit numb, I think I’ve just been overwhelmed with all these horrible emotions because I’ve been feeling god awful that I have shut everything off for a bit. It’s happened before.