What do you do when you’re divided into two again? When the part that wants to wait and fight is barely heard, and the other part wakes? When you can’t understand the words coming from your mouth… when everything is a blur of colours, noise, confusion and pain, and you stop believing you have the ability to make it end. Do you keep fighting for a forgotten world? Should you be afraid that you’re glimpsing into a past world where control belonged to something else in your mind? Do you listen? It’s like something sharing your mind, some dark, twisted thing, is alive again. It’s the closest to life, the closest to excitement or relief that you can find.
This morning I hurried to a coach, always running late… too fast. Once I was there I could breathe fairly normally, but it was exhausting. My chest ached. Soon my muscles began to seize up and the pain ran through my arms and legs. An hour later, I came out and leant against a wall, feeling dazed and pained, while everyone got ready. Then we walked again, then stood for a while… when the pain got to a certain point I sat on the curb and looked around me. Everything was sunny. People were happy. There was noise, laughter, chanting, songs. A yellow leaf fell onto my lap and reminded me of catching wishes when I was a child. I didn’t feel particularly depressed or panicky like I normally would in such a busy place. I liked having so many people around. I could look at them and watch everything around us and it didn’t feel real, but it felt less far. It was still painful to see the world, but it didn’t hurt like it used to.
The rest of the day was hell. Hours of standing, yet I insisted that I wanted to stay with the crowd as long as possible and carry on to the end. Feeling like I was going to scream from the pain burning through my hips, back, shoulder, stomach, toes. Feeling like the music that I adore and would love to dance to was destroying me while I tried to stay standing, until I grew worse and had to leave the music behind almost as soon as I’d found it. Waiting until my eyes filled with tears from the pain and my mum forced them to give me a seat on the coach. All I wanted was to scream, to see nothing, hear nothing… to lie down, never to move again. The physical pain is horrendous after pushing myself like that. It’s worse, it’s so much worse. I can’t still be getting worse. I shouldn’t be. Not a year in. I’m starting to get scared of how severe it’ll become.
The mental pain is always agony. Pure agony. I know from experience that it can get much worse. Nevertheless, I don’t understand how it can. I’m already at my breaking point.
I’ve realised recently how much writing helps me. I can only express myself through writing. Today I ended up hurting so badly and feeling so depressed that I got impatient and angry and acted like a complete [insert the worst word you can think of here] for most of the day. But even when I don’t, I’m not there. I don’t understand how I can walk around, seemingly conscious, seemingly functioning, and feel so completely detached. I’m not sure if even the most agonising pain I’ve had is as bad as that feeling of utter death, complete disassociation from the world.
Will I ever come back? Can I ever succeed?
I feel as though it’s feeding me thoughts that would never come otherwise… should I succeed, do I want to, can I ever belong here, how could I cause so much pain lately, am I worthy of feeling alive again… I know I have to look past those thoughts to get any further and to stop myself falling back. But is it possible to ever return to those feelings I used to have? They say you can transform suffering, but… how? When? What if that other part of me is stronger? All the reasons that have been driving me lately are rapidly fading. That part of me is so powerful. I’ve been changing it slowly, but realistically it could overcome me long before I manage to overcome it. Especially if my ME/CFS stays like it is now. This lifestyle is detrimental to anyone with depression, no matter how mild or severe it is. I feel like I’m losing the battle. I feel like something inside me is pleased when it happens. But I’m not. I’m scared. The depression is so painful that I can hardly think, let alone reign some control over my mind. I’m rapidly losing myself.
I lay down and for as long as I stay still my body will rest. But my mind is relentless. There’s nothing I want more right now than to stop feeling the pain.
47 comments
I would hug you. I would make a wry comment to make you laugh. I would make a funny face. If I was there.
I listen here.
It is possible to get through this. Survive a moment here, a moment there. Keep doing that and the next thing you know you’ll find yourself 34 years old and debating if the one hundred thousand pound cheque in your hand is worth enduring the leers of a room full of unmotivated corrupt Japanese businessmen. Oh the problems life has in store for you! 😉
Thanks, SeeSmith. 🙂 Just seeing you comment makes me happier. I don’t know how you did it but you made me smile.
Your welcome, you perpetually tired vixen! If I was there I’d also stare at you while you slept in a way that would make 3 out of 4 cannibals say, “yeah, I know what he’s thinking.”
Aww… how do you manage to be so creepy, yet so freaking loveable…
Years of practice. Very few victims. You’re 75% safe with me.
Your comfort is overwhelming.
That sounded just like: “60% of the time, it works all the time”, lol.
Let me put it this way: people who survive meeting me find me very likable.
You are worthy. We see you here, helping others, despite your own pain. You are giving. You leave thoughtful comments that encourage. You show compassion amd understanding, touched with humor. Your strength is inspiring. I hope you continue to fight. And remember we are all here for you when you need us. Hugs.
Thank you so much. It helps me so much to hear things like this. I can’t think of much to say at this minute but I appreciate it more than you could imagine.
I shed tears for you love. Your strength is mind-boggling; to be able to grit your teeth and bear the enormous load of pain, both mental and physical, that you are in only goes to show what an INCREDIBLE person you are. But you shouldn’t have to grit your teeth and bear it. You freaking deserve to stand in the light and listen to music that kick-starts your reintroduction back into the world. I can understand your physical pain to a point (my joints are horrid little buggers and like dislocating at random times), but having that on top of a crippling depression… I will tell you point blank that you deserve to feel like you used to. Don’t ever, ever question that, and if you do, I will always be there to tell you different. I know you have probably heard this before, and you have probably even thought about it, but when it gets bad, find something that inspires you. Anything at all, whether it be a quote of strength or a piece of music that breaths life back into your soul or just a simple photo of the good ole’ days. Do not dwell on how things could have been if you hadn’t gotten ME/CFS; it will eat you from the inside out until you are a husk of the beautiful person you are. And I think in your current condition you are allowed a few bitchy days now and then. As long as it doesn’t become habitual 🙂 I am so sorry love. I send you strength and courage and a passion for life and lots o’ hugs 🙂 Keep fighting- don’t let this bastard conquer you.
Thank you. I can’t believe you took the time to write all that to make me feel better. I just read it twice. I’ll make a note of that, to find something that inspires me. Music is a nice idea – I’ll go right now to find my favourite song. 🙂 Honestly though, I don’t think anything could inspire me more than you guys do. I’ve started saving the comments on my posts so I can look at them again when I’m ill.
I am trying to change my reaction to the ME/CFS symptoms. At the moment they’re a huge, huge trigger for my depression to become more severe. But I’ll keep trying. At least I’m actively trying now and not just hoping. It seems to be a slow process, but I’ve been stuck this way a long time now… so I can’t expect anything more.
Again, thank you so much. You’re amazing. <3
Your welcome! If you ever need an inspirational book I’m always here haha. I found that when I was extremely depressed, even the smallest things that had positive memories could improve my mood, even if only a wee bit. And I’m glad you are trying instead of hoping; I don’t think you should deal with your symptoms, but I also don’t think you should rail against them. Dealing is almost like yielding, but railing will only exhaust you. Maybe try living day by day. Don’t push yourself to the extreme, but don’t let it conquer you. Find those little things (I know I’ve said this a gazillion times) that make life worth living again 🙂
Yeah, I’ve been thinking about something along those lines over the past few days… I’ve been practicing meditation daily, but I’m not doing much mindfulness, or positive thinking etc, that’s integrated with my daily life. So I’m not practicing for that much of the time. I think it’s something I need to start doing.
There’s a treatment for ME/CFS that I’m interested in – but also a bit perturbed and terrified by. It involves several techniques but part of it is basically telling your symptoms to stop (yes, seriously) and doing things that you wouldn’t usually do. It’s all based on a theory of it starting in the brain (and therefore being able to ‘retrain’ the brain to stop your symptoms being set off in the first place), which could make sense for me but I don’t really understand how it applies to all the people who get it post-virus. Some people are cured or semi-cured by it, some notice no difference and some have awful relapses. So it’s a risk. One that I think I’m willing to take though… depression seems much harder to treat with ME, because you’re forced out of activity and away from sunlight and company so much. But for the time being it’s all about finding a balance, which I’ve been proven to be very, very bad it, haha. And my depression makes that worse, because I want to keep doing things to distract myself, so I’m more likely to keep pushing myself until I get ill again.
The difference between trying and hoping is really subtle, except for the differences you see when you’re activity trying to make changes. Don’t worry about saying it a gazillion times – I need to get that advice lodged firmly in my head so I don’t forget. 🙂
The treatment does sound a little scary, but I think its worth the risk. I mean, it can’t really get any worse than it is now, can it? And I think if you never try it, then you will always wonder about what would’ve happened if you did. I will say the whole “retrain your brain thing” is strange to say the least, but hey, who knows!!
Thanks for the encouragement. 🙂 I don’t know when I’ll be able to do it, but I should make it a definite plan. You’re right, it can’t get much worse (and now it’s jinxed, haha).
“I can only express myself through writing. Today I ended up hurting so badly and feeling so depressed that I got impatient and angry and acted like a complete HIPSTER for most of the day”.
That said… i’m sorry that you’re going through that. Constant physical pain that forces you out of a regular life is really hard to deal with (i know about that and i don’t wish it on anybody), but is it worth the shot like you say? only you can answer that. If you ask me you have more than it takes to make it if you want to (standing that pain for as long as you could is most than a lot of people would do), but yeah, the mind is pretty [insert worst word you can think off here] when it comes to fighting it out/giving up debates. Eventually it becomes exhausting and it’s an endless circle, but hopefully you’ll find a way to break out of it.
The only thing i can advice regarding the overactive mind (other than lobotomy, lol j/k) is finding something to do that keeps your mind occupied and doesn’t stress your body (but that’s pretty obvious so i guess you already knew that).
I have to say that you do write in a way that the reader can picture the situation in their head (at least that happened to me while reading your topic), so maybe writing a book is something you should consider (i’d read it/buy it, and i’m guessing most here could). Hopefully things will get better for you at some point soon.
Oh God, that made me laugh (out loud, hysterically, four times).
Part of the reason I’m trying to learn to calm my mind is so I can do more with my physical limitations. One issue with focusing my mind on something while my body rests is that usually when any of my symptoms come on, one of them is ‘brain fog’/cognitive dysfunction/plain stupidity. I can hardly figure out what people are saying or where I am. Writing is quite a good option though, as I can take it slow and do it lying down with my head resting which always helps the brain fog. Years ago I wrote stories every day. I don’t have as much inspiration now and most of my writing is quite confused and disjointed. Sometimes the things I write are really dark as well, which puts me off a little because I’m unhappy with the final effect. But I think that’s something I should give another go, so thank you for the idea.
Ok, so you are asleep, which blows, because in part, I wanted to get a response back tonight, but it’s fine. I will be patient.
That being said, my gosh.. Just, damn.
You told me about the event you went to, but holy crap, all of this happened at the same time… No matter how many times you tell me about your “symptoms”, I am never able to comprehend any of them in a reasonable matter…
I sat there. I read this over, twice, twice mind you, and then read the comments.
I’m thinking: What the hell do I say? How do I find the most thought provoking, and timely thing to say during this situation?
I thought about Peyton. How this would feel to him.. How this would affect him.
I started to see everything blur together, into unrecognizable color, a cacophony of sounds hit me, my body literally seized up, it felt like I was reaching my breaking point. I wanted to scream, to find the nearest thing and destroy it. I covered my ears, I fell on my knees to the ground. It just made me so sad, and angry, and confused, and-
Wait. It’s a lot like that, isn’t it? And then, if this happened uncontrollably, on a day to day, everytime I did something mundane like walk outside on a busy day, or sit down in a crowded area..
Yeah.
I must say though, the fact that you are so willing to help others on here, when you have all the right to be as bitchy as you want to be (and practically everyone would understand) says something about how sweet and wonderful and inspirational and point blank amazing you are as a person….
We all love you here. Keep being you, and surely this community will always improve…
The song you were listening to… “just happy to be here, I’m happy to know you…”
Well, I’m happy to be here. And I am beyond happy to continue to get to get to know the beautiful soul that you are (oh and btw, now everytime I think of crumpets, I think about you. Good advice :P)
I love you so much…. xoxoxo
Thanks for writing all that. I got so pleased when I saw how much you wrote. 🙂
Yes, it is a lot like that. That described it really well. I’m not used to being affected quite so badly as I am now. My mum told me I should borrow my dad’s wheelchair yesterday, which he never uses, but I didn’t want to use a wheelchair for the first time in a huge crowd. I seemed to be able to walk around without much trouble in the morning so I expected it to be easier, and I didn’t want to take my stick in case I’d be walking fast at any point or just feel like I didn’t need it. I should have brought the wheelchair. By the end of the day I was hanging onto my mum’s arm and my legs kept almost giving way and I started to feel like I might pass out. I’ve fallen over when my legs are particularly weak but I’ve never fainted, and I really wish I would when it becomes like that. All I want is to get away from it.
At least the worst of the ME ends though, whereas depression just doesn’t. The most stubborn symptoms of ME are the exhaustion in my muscles and the brain fog, which never seems to end. Most of the time I feel like a large part of my brain has just rotted away. You’d be amazed how many times I stop writing to spend a minute remembering or Googling words. The people who do end up finding something that will cure them stop experiencing the cognitive dysfunction along with everything else. I can’t imagine anything greater in the world than being able to feel and experience the world like a normal person. I used to want to be more than normal, until I learnt that the world isn’t divided in the way I saw it in my eyes. I used to want to achieve things that only a small part of me cares about now, because they’re selfish and not as great as I once thought they were. Depression, anxiety and now ME (but most of all, depression) have taken everything I held dear from me. And that could be a great thing if I was able to recover. I could be a much better person than the one I might have been, with a much clearer and happier view of the world and myself. But at the moment I’m broken, and I can’t do much at all. I hope I’ll be able to keep changing the way I respond to it, because right now I feel bitter and sad and frustrated and angry with it all. It’s hard to think of anything except how much I want it all to end.
Thanks for everything you said. I want a crumpet now.
I love you too.
Awww, i haven’t seen so much love in this site before!!! Love makes life better for sure. And yes, i’ll tease you two for the rest of your life. Hahahaha *laughing maniacally
Thanks for that, Darvin… 😉
How long have you been on SP?
2 months 😛
I feel like I’ve known you for months and months, but I haven’t even been here that long (although I first came here three years ago).
I feel like i have been here for a long time, and i’ll be here for a looooong time.
Me too, I hope.
Are you planning on keeping up the teasing for all that time…
Ouuuu yeah T<3T hahaha
Please excuse my kid brother. He’s being annoying as hell today. (Punches Darvin). 😛
I will not give him any more ammunition to tease us about our love…
Be nice or i’ll tell my owl to bite you!!!
Is your owl as cannibalistic as you?
Pets are similar with their human friend.
‘our love’ – and there’s the ammunition…
Why hiding it? 😉 btw if this really bothers you i’ll stop.
No, it doesn’t bother me! But you are destroying my dating opportunities here.
Good to know, you’ll be T+T=2T forever!!! ^_^
No…
damn it. I fxcked up.
Why? 😛
damnnnn youuuuuuuuuuuuuuuu
Hahahaha
Lemme stop this shit, before it gets out of hand.
You mean… before I throw Darvin’s owl at him?
Yes. Exactly.
The owl is nothing compared to the dog, i’ll tell my lovely Iva to attack you!!! So be nice. 🙂 hahahaha ahhh i’m having such a good time, thank you!
Is that a threat, Darvin?!
I came into the game a bit late it seems but ha you guys are cute..
Trix I forever remain in Awe of you. You are [insert every positive adjective]. You inspire me. I really hope you find a treatment that makes things the way they should be, with you able to do everything you so deserve to do.
Thanks, freeroma. 🙂 That’s so kind of you to say. You’re the best. 🙂