I have words with which to describe beauty. I have words with which to chronicle elation, and words that express pain. I have many words with which to describe frustration, happiness, fatigue, excitement or nervousness.
Why don’t I have words for this?
I’ve gotten better at hiding my feelings lately. If I’m fed up with myself for being in this mood for so long, other people must be fed up with it too. I don’t want anyone to get fed up with me. It’s just this combination of feeling so sick, and having already used up my store of emotional strength and inspiration. There are days when I just don’t want to get out of bed anymore. What’s the point, really? If I know that I’m going to be suffering all day? I’m just a hollow statue of a human, running on empty.
See, I have words to describe that. But it’s not this. I don’t even know what this is. I don’t even make any sense any more. Where are my words? Why are they hiding? They’re in my head, I know they are, I can feel them. I think that maybe they’re going underground because they know that if I express this out loud, I can never take it back again. If I let my soul, my heart, my mind, whatever, figure out the words and write them down, they’ll never forget them. The thing with feelings is that they change, and you forget exactly what they feel like. We remember feelings as words. We allocate this feeling to anger, that one to exhilaration and another to sorrow. The words are what we visit later on, not the feelings themselves. At least most of the time.
Now that I think about it, I understand why I can’t word this. My body is protecting itself, for once. Maybe it’s better this way. Maybe, when it passes, I’ll be able to move on and forget that I ever felt as lousy as this. Wouldn’t that be nice?
I just wish it would pass already, because I’m so tired of feeling this way. I feel like a broken record, because I keep writing again and again about being fed up with being sick. I also feel like a broken record because I just feel kind of broken. But what can I do? I can’t will myself into health, I’ve tried that before. I keep up whatever I’m told to do, as much as it sucks. Yet I still feel this way, and it’s still what comes pouring out when I sit down with a crisp white piece of paper and a black pen (hands up all of you that didn’t think about me writing on actual paper before posting).
There have been a few escapes. When I’m with my friends I’m less aware of the pain, and I was with my friends all weekend. When I’m watching TV I’m fairly distracted. When something around me is pretty. And… no, that’s about it. Often it just feels like I’m going to explode.
I’m lost for words again.
Yours truly,
Ella
Song Quote:
Life goes on the same, you bury the pain… heal the song, sing along, but what does it change? Oh this life is s confusing, feels like I am always losing… Words are found too close to the edge, that we don’t dare sing. –Somewhere Else, Travis
I pass this on my way home from school, and I get to escape for a little while
P.s. Sorry for being absent for a while. This has clearly been getting in the way. I was thinking of adding another page- any idea what it should be? Let me know in the comments or contact me.
Sick and Sick of It 
You explain “this” perfectly… I’m with you on that one. Sending you waves of love.
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I know exactly how you feel. So sorry there are so many out there suffering. I started my blog, like many, to be with others who actually understood. I pray you get through this cycle of “this” soon.
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You’re not alone. This illness is isolating, but many struggle with “this.” Whoever lives with “this” is a very strong individual. A very, very strong one. Try to remember all the little joys of life. You’re in my thoughts and I’m sending you some healing energy :)
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I think one of the hardest parts about a disease like fibro is that it’s not tattooed on your face. There’s no neon sign signalling that you are having an especially bad day or dealing with This and need to be cut some slack. It’s not like we need a short cut, but empathy is a difficult emotion to request from humanity when it requires them to be in serious pain just to begin understanding. Ella, I too am sick and tired of being sick and tired, no matter how catchy that Nappy Roots song is. And I’m sure I could say something positive about how it will get better for all of us, but the truth is, This sucks. Sure it will make us stronger, and unique, and doesn’t define us and blah blah blah…but while that may add a rose tint to the facts it does not alter them. You’re not alone, and you are an incredible writer.
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I read this post and I can relate so well. It breaks my heart to see so many suffering in silence from a disease that is not understood by most. It led me to start my blog and an online support group. Being with others who go through “this” and can relate seems much easier at times. It’s a daily struggle for me to keep my mind on a positive course and I won’t lie, there are some days, I just can’t do it. But tomorrow is always another day. I pray you can find the right words and that when you do, there will be some comfort that comes with them.
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I wrestled with “this” for over a year and a half. I feel your frustration. Sending healing vibes, I hope you get better soon. I remember I just wanted to be better every day.
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I understand. I started my blog because I wanted to write about FM but I got tired of that. I still want to share my experience but I fear others get tired of hearing about it. I am finding I’m happier writing about other things – and taking photographs. I kept a journal for the first 10 years of having FM and what I wrote is very descriptive of the experience and I want to share it but I am afraid to, for some reason.
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I appreciate the way you describe this feeling. I think most people who have secondary ms, primary ms, and likely even relapsing remitting ms, fibromyalgia, lupus, a host of the many chronic diseases do feel this way at least at times it comes to visit.
I remember telling myself this can’t be it. My life does not go on like this- not from here on out! I won’t ask “why me?” I was a nurse. I have seen far worse than myself. I know how fortunate I have been to have lived and loved the life I have had. Yet there are those times when everything has rolled so far downhill and I just don’t feel I can get by it all one more time. That sounds more dramatic than it is. In looking at this of course I get to feeling so overwhelmed and sick of being, feeling sick. Because the only way I can get above it at that point is to look at it from realizing I will go through it, and I still do have the responsibility to make this life honorable and not to take this gift of living for granted. I still have to find a way to reach out to others , to make a difference in someone else’s life somehow. That brings me back to the reality of still being alive and realizing that if people worse off than I am can still find a way to take the focus of living off of themselves, then so can I. So must I.
Thank you so much for sharing your thoughts. and feelings.
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Keep fighting girl! I know how you feel. I am on a long road to recovery myself. There are days when I still feel like not getting out of bed, or the simplest things cause pain. I often times forget how fragile life can be. I often fear putting words to my illness. This, this thing, I often can’t offer it a name. It makes being sick too real. I long for the days when my life was simple.
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So I Thought by Flyleaf is one my favorite songs, “this” isn’t what its about, but the lyrics talk about time passing, and going through things, and not being able to talk about them. Its the closest I’ve been able to find in a song anyway.
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totally understand. I gave up trying to explain “this” to other people to. Even if someday I can figure out the words, people still won’t understand because they haven’t experienced it. they would just roll their eyes, or tell me to suck it up, or tell me to see a therapist.
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I can understand what you mean by trying to define “This.” For me it took me to the point where I irritated myself. Each day I just did the same thing and pushed through to the next. I think what eventually changed was my mind set. I knew that things were not going to get better any time soon and if this is how my life was going to be forever, or for the time being, I was going to make the most of them. Because in the end, I can’t get those days back. By making the most of it, I mean by celebrating the small victories in life, taking in everything, reading a book, or enjoying the T.V. I celebrate the days I can stay awake after a shower sucks all my energy or I ate a larger meal like everyone else. And I have dogs, so any extra time I can spend with them I love. They are a great distraction.
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I have been feeling the same way lately. I understand what you mean. I am a writer.. Or was before this illness. The words are there but, they just get lost when it’s time to write it all down. Explaining this to people is not easy, I gave up actually.
But keep fighting and I know this is temporary. We have our good days and bad days. Smile. :)
>
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Our bodies and our minds have ways of telling us to slow down. Our bodies and minds tell us everything. Maybe your imagination is telling tp you to take it out of a box and use it.
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Hi Ella,
Couple of things here. First, I’ve been in similar place, where you feel like you’re thinking and feeling and writing the same thing over and over. This will change. And then it will happen again. Over and over. So we roll with it. Second, this sentence: “The words are what we visit later on, not the feelings themselves” REALLY struck a chord with me. You are so right. Lastly, thank you for the music post, I checked them out and it was a pretty cool song.
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Yes. I totally know what “this” is. And it’s horrible. I’m sorry you’re in “this” place right now. When I’m there, I try and look for the smallest of shifts that let me know I’m moving to a different place — when I’m distracted for an extra second, when I catch myself almost enjoying my book, when I can take two steps instead of one without excruciating pain. Hang in there. Fibromyalgia is like the weather — if we wait long enough it will eventually shift. Hunker down. Spring is coming. xoxo
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