Today has been painful.
Every time I came out of my darkened room the light made me ill within 5-10 minutes. Each time it happened I made my way back to bed, hardly able to walk. Talking to my mum made me ill. Every time we talked for five minutes I’d have to lie down, confused, with my body aching all over. Any sensory stimulation makes me worse. I think I could cope with all the physical effects of illness if I wasn’t already severely depressed, although the way it affects my brain feels unbearable.
All day I’ve been looking forward to the eclipse, but because of my memory problems I kept forgetting about it. My mum opened my blind and soon the moon will fall into the skylight window… so I won’t forget when it happens. She loves things like that too, so I’m waking her up to watch some with me. I’m glad to have someone with me for a while.
For me the worst part of ME/CFS is loneliness. When you get confused and vague, you can hardly see the people around you anymore. You fade away, but never completely. If I can’t speak, if people’s voices make me ill, if I can’t move from my bed… then I have to be alone. Usually when I’m with my mum it’s a bright distraction. She can make me laugh even when I’m standing in pain beside my bedroom, too weak to walk any further and trying not to fall even when I’m leaning on the wall and my stick. Or when I’m lying on my bed, hardly able to comprehend what’s happening around me. It should be comforting; it should be evidence that you can find happiness even when you’re suffering. But it isn’t happiness. I feel that it should be, but depression numbs it to such an extent that it isn’t recognisable as anything but emptiness. Anything is a distraction at best. For a moment things can become nothingness… but it’s rare and it doesn’t happen for long.
It’s so unfair, so wrong, that I have such a lovely, caring family and wonderful people around me (including online friends), but I can’t enjoy and appreciate them like I should. I can feel so much love, concern, gratitude and admiration, but depression manages to numb the positive aspects of all those feelings. It’s like a wall against almost everything. It leaves just a small shell of a person.
Despite all the pain of depression and all the hopeless thoughts, I believe in my heart that things could change. I’ve come this far and I’ve been through a hell much worse than this. But I haven’t felt happy for years. I haven’t felt entirely conscious since I was in my mid-teens, and my depression transformed into something deeper. Things used to change… things would be better, worse, better. It doesn’t feel natural to be stuck like this. If only it was a dream. My boyfriend used to talk about how much he wanted to wake up… He still had ‘alive’ moments, but he didn’t know how to make them last. He still lives his life trying to escape through distractions. I can’t distract myself anymore in the ways I once could, but I already realise that it didn’t work for either of us.
There must be something better. It must be possible. But how, where?
My pain is severe, but the worst of it is in my brain. Overall life has been good to me. I want to leave this behind and do some good in the world. I want to be part of the world. I can’t do anything while I’m like this.
It’s been so long, and I want to wake up again.
25 comments
Trix, I can’t even begin to tell you how much your post has impacted me. I’m sitting here teary eyed, typing this response, and I don’t even know what to say. I just want to be able to appreciate how hard you are trying, and how a single day for you could be 10x worse than my crappiest day and yet you still have that hope… Please keep posting..
Thank you so much. Admittedly I have much better days. Today was rough. Some days I can function almost normally, or at least in appearance. I look at people who are always physically worse than I am today, and while some of them can’t live through it, some are still happy and strong inside. It makes me feel worse for being unable to be and thus so badly affected, but depression is a strong force. I’m sure you’re going through a lot right now as well, and I just want you to know how much I hope you make it through it all.
🙂
I just want you to know that any thing I say or do that helps you, I do it because it comes out of me unbidden. You are not “using up” my compassion. It’s 100% free with no obligation to buy. 😉 I think that’s the way it is for everyone else here, your mom, and that creepy ice cream vendor on the corner.
Your pain has made me a better person. I’m not ready to talk about it right now… but you’ve taught me something.
It’s still cloudy here but the moon peeks out every once in a while. Maybe I’ll get lucky. I hope you do, too.
You always say something that makes me smile. I appreciate you so much for that. Thank you for the comment. 🙂
I can see it. It’s lovely.
I just want you to know you’re already doing some good in the world — in just a few weeks your friendship has been incredibly helpful and important to me. Your words always help people here. You make a difference, and you’ll be part of the world someday (even though you’re already part of an important world — ours). You’re a special person, Trix. xx
Thank you, Tris. I think our friendship mostly consists of me ranting at you. 😉 You have no idea how much it means to me and how much I love hearing from you. Thank you for everything. <3 Your words mean so much to me.
Trix i never got the chance to express my gratitude toward you, so here it goes: Thank you for being such a big help here, you always know what to say, when to say it. We are lucky to have you here!!! 🙂
Never give up cause happiness always goes to those who search it.
Thanks Darvin! That means so much. I’m incredibly thankful that every time I come on SP I see a positive comment or quote from you somewhere.
Your words are absolutely inspiring- thank you for your beautiful words, and your beautiful message and your beautiful fight. I hope you have a spectacular viewing of the moon tonight.
Thank you so much. 🙂
I am very sorry that you are in so much pain. I wish I knew what else to say – I am one of those people who doesn’t know how to say comforting things.
I cannot fully understand the physical pain, but I understand the emotional part. Yesterday I was walking through an area of incredible beauty. I could look around and think “oh isn’t this beautiful” but I couldn’t feel anything. I cannot feel joy, happiness, contentment, etc.
My brother’s situation was similar to yours in that he suffered severe physical pain, and as a result of what it did to his life, severe depression.
I truly hope things get better for you.
Just the fact that you took the time to read and reply means so much to me. It’s comfort enough.
That’s exactly how it is… you can think those things, know those things, but you can’t reach the feelings they should give you. You explained it perfectly.
So sorry to hear about your brother. I had the depression for a long time before I got ill. It really is a horrific illness. I hope things get better for you as well. I hope you feel those things again.
I really appreciate your condolences on my brother, as he passed away just a few months ago in his early fifties, and I miss him more than I can express (I can still feel pain).
In his case the depression was caused by his pain and his situation, so if he could have somehow gotten better it almost certainly would have gone away. I can imagine your frustration of knowing that the depression came first.
I’ve never lost someone close to me so I can’t even imagine how painful that must be, especially when it’s so recent.
I can definitely relate to you.My depression is so bad to the point where I can no longer smile, no longer talk to anybody, no longer do anything. Worst part is its been like this for almost 4 years now. I think anybody else as depressed as I am would kill themselves by now, not sure how I am still alive with this horrendous depression.
I don’t have depression like this. But about three years ago I was having virtually constant panic attacks, and my depression was the worst I’d ever experienced. I never knew how I survived it. I think it’s because it usually comes on gradually. I do believe that most people who are walking life happy, if they suddenly felt what I feel, would scream in pain. If it continued, I think suicide would be a lot more likely than it is for me.
It’s hard to believe you can live through some things. At the very least it’s a testament to the strength you have.
I want you to know how grateful I am to you. You are one of the people who took time to listen to my problems and guide me. I am really grateful.
You are a very strong person. And a beautiful human. I’m glad to meet you. 🙂
I dunno if my words ever help you but I hope my gratitude reach you 🙂
Thank you, mranony. That means so much to me. You’re a strong and beautiful person too.
Good to know. X))
Cheers, my friend. May our days gets a little more better. 🙂
I had to read what ME/CFS is. I am sorry to hear you have this. You bring such brightness here. Hugs.
Thank you. 🙂
You know, i forgot to thank you for your post, since i looked up ME/CFS and it kinda lines up with the majority of my problems (some have been identified, but there’s a few that docs have no clue about , and funnily enough those are the ones that damage me the most). I guess i should do more reading on it. I also wanted to say that i’m sorry you’ve had to go through this… by reading the symptoms and co-relating them to what i have… ugh, i can’t imagine how you can cope, for me it’s easier since i just isolate myself. I really hope some relief from the pain that this condition causes, and again, thanks for sharing.
Thanks so much for your comment, Mf. Sorry to hear you share a lot of the symptoms. I think even in its mild form it’s a horrific illness to live with. I’ve heard some great stories of people getting cured or semi-cured though. Good luck with it all. I hope you end up seeing the back of it or at least some relief.
At this point i’d just be happy to be properly diagnosed, lol. In that sense (and i figure you went through this at some point) the worst part is taking a gazillion exams and docs appointments only to get bad guesses of what you might have. There’s so many voids in medicine that it’s bound to happen, but it doesn’t make it any easier. But well… let’s just hope for better days.
@Mf I was actually unofficially diagnosed by GP (and myself) quite quickly, but that’s because my mum has it too. I didn’t even think of it at first… I think it was my mum who brought it up. I wasn’t sure at first if that’s what it was, but it became obvious after a couple of months. I know it takes some people years to get a correct diagnosis though. Geez, I don’t envy you for having to go through that at exam time. I was only taking one part time college course when I got ill and my marks quickly plummeted. I could hardly do the work anymore, so I haven’t been studying since then.
Usually when people get diagnosed it’s a sense of relief and dread – because there’s no official cure. The treatment I’ve been offered is focused on adapting your life to the condition while you wait for it to get better, because most people improve over time. The person I’m seeing is great but I don’t feel like she understands the condition all that well sometimes, and a lot of what they say there is based on disputed theories. I find the general treatment quite frustrating. (I’m in the UK.) A lot of other people seem to too. But like I say, there are unofficial treatments that do work for some (and always medical research taking places, though not really enough considering it’s so widespread), so it might not always be a matter of just having to live with it. So if it ever drives you insane, don’t give up hope. 🙂
Just a side note: don’t let anyone tell you your symptoms are all in the mind. The person and literature from the clinic I’m going to often imply that ME is nothing more than a reaction to stress/anxiety, which I’ve experienced a lot in the past few years, and in my case they don’t even resemble each other. Even if one caused the other, they’re not the same problem. There are several theories about ME starting in the brain and being linked to issues like anxiety – most of the cures I’ve come across so far either consist of psychological techniques to retrain that part of your brain, or dietary changes and supplements, or both. But although ME still has a bad rep and some people think it’s nothing more than laziness, there’s a lot of evidence now for the ways it affects people’s brain, muscles, immune system etc. The list is long. One positive about getting a diagnosis is that if you ever need to, you can use the evidence as a shield against people who still won’t accept that it’s a physical condition.
Having said that, most people I’ve told are really sympathetic. One nice thing about telling people is that I’ve met a couple of other people with ME who wouldn’t normally talk about it because it’s hard for people to understand… and it’s given us both a chance to talk. But the only person who’s seen me at my absolute worst is my mum (the only person I live with). My other relatives and a couple of family friend have seen me struggling to walk a couple of times. Most people see me when I’m out of the house on better days, usually looking completely healthy. I don’t blame people for finding it difficult to accept how different you can be from day to day. I still find it difficult. There are some people, though, who are just thoughtless and sometimes cruel, and don’t want to hear what you or anybody else might have to say.
I hope you get a diagnosis soon and it gives you some relief. 🙂