I have a syndrome. I don’t know which one. I just know that I have a collection of really difficult symptoms that strongly affect my life negatively and have put my whole life on hold.
I don’t have a pretty little box to put my symptoms in because I have not been diagnosed yet. Why? Because I am afraid. I know that my symptoms are real and how they feel inside to me. I know generally what I need to do when my symptoms come on, but the remedies make me look lazy and irresponsible and the people in my life challenge me and ask me to do things other than what I know I need to do in order to be more healthy. I feel lazy, shameful and irresponsible when I feel like “rest” is a need and not something I want. I typically succumb to what other people need me to do even if all they see is me lying around and finally getting up and doing something.
I know when I need to leave someplace.. when I can feel my resources waning. When my internal “gas gauge” has hit ‘E’ and I typically end up needing to stay well past that point. It causes me to feel panic about going anywhere or doing anything because I don’t feel like I have any control over the cut-off point.
I am so frustrated that I am bordering on the level of futility. I don’t know if I have chronic fatigue syndrome, fibromyalgia or some precursor to some awful disease.. low thyroid, anemia, or some gawdawful fatal thing I haven’t discovered yet, but what I have is real and I can’t make anybody I know (except those that also have a chronic syndrome) understand.
I have had blood panels ran already. I have an appointment for a sleep study and a huge packet of information to fill out for a pain management center.
I feel utterly and inexplicably alone and fatalistic.
People continue to (inadvertently) guilt and shame me for my inactivity and lack of desire to get up and join the party.. do more.. be more.. and do more for them. Constantly. People don’t understand my utter debilitating exhaustion even when I get a ‘full night sleep’. I realize I stand on the precipice of losing every single person in my life because of this collection of annoying symptoms that now run my life. I stand to lose my family, my career and all of my friends. And I struggle with guilt and shame over that too.
It is hard to be a (formerly??) enthusiastic, energetic, capable, go getter type of person who makes things happen and says ‘yes’ to everything who, for the last almost year or so, cannot seem to do anything at all. And when I push myself and do it anyhow.. I suffer for weeks following it.
If I had some horrible disease with a label or a visible disability would people understand better? Probably not. I suspect that those people struggle with guilt and shame too as they look back on what they used to be able to do and be.
I wouldn’t want to be in my life right now. I don’t want to be in my life right now. I wish I knew what I needed to do to make this all go away. What am I not doing.. what am I not eating, talking as a supplement.. what what what should I be doing differently do make this go away? People who have a syndrome tell me it never goes away and that makes me more depressed and fills me with more guilt and shame and dread over the inevitable loss of everyone and everything in my life.
I have nothing to say to make this sound hopeful or have any sort of point right now. I am just feeling fatalistic and filled with utter dread. And I am bone weary exhausted after 10 hours of sleep.
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I totally get it; have something of the same; struggle with the guilties of taking what I need. But if you don't...you'll really go away (or crazy). I know it's not easy to not let what other's think affect things, but they're not living in your shoes. And I'd submit that if anybody faulted you, guilted you, shamed you for getting the rest and down time that you need...perhaps there's a toxicity there that could be rid of. Your friends and loved ones will/should allow you grace. Allow yourself some, also. And...you shouldn't need a syndrome or ailment in order to take what it is that you need or get rid of all that you don't. Listen to your body/heart/mind/soul. Hugs and prayers...and rest. No more guilt or shame.
ReplyDeleteWow, I'm right there with you on this one. I feel really ashamed, though. Most of my friends see me as capable of so much more... and it's really hard to tell them that I'm at a very weak state. They seem to think I should be recovering faster. And then there are those who think that I have no right to be "unhappy" and sick, because my life is wonderful in there eyes. No one truly knows, not matter how close you are to them, they won't even understand that invisible illness. It's just like how when you tell someone that you're depressed, they ask you why you are sad? They don't understand that depression isn't an extreme sadness. I'm like you, now. Whenever I just force myself to do things, my mind is happy, but my body acts like it's going to crumble to dust. I have angry, screaming, crying fits out of frustration about once a month, and you can probably guess at which time. I don't know what else to say other than the fact that I understand.
ReplyDeleteOK now that my pity party is all over, let me clarify. Josh has been extremely supportive and I really don't have any toxic people left in my life. The people who ask me to do things are well-meaning and it isn't their job to be concerned with my health. We have five kids between the two of us. It is a busy house when everyone is there and there are littles and teens.. both need a lot from both of us. I really appreciate all the support. I hate when i vomit self pity and negativity all over the internet.. but I don't want to pull it either as someone might relate or have something to add.
ReplyDeleteI can relate. So many people feel this way, but they hold it in and keep trudging on, and then they get cancer or they have a heart attack. The way I look at it is not that there is something wrong with me but that it is TOO MUCH. Modern life is crazy with its constant demands. Sure, we could do it when we were twenty-five. But even though I was working and going to school full time I had SO many fewer actual responsibilities. Having kids in itself is huge. I don't care that other people can just go go go all the time. Either they have a completely different type of genetic personality and chemical makeup, or they are faking it and killing themselves.
ReplyDeleteCheck out my best friend's blog. She has had chronic fatigue syndrome, and was unable to work for the past 20 plus years, but has found another part of herself, the artist. It has not been easy for her, and she still has to be careful not to over do, but so much good has ultimately come of it. Her blog is called 'Happy Tiler' (she is also a Scrabble jumkie). I hope you get the answers and the help that you need, and hopefully the healing.
ReplyDeleteWow, can I relate to this post. For 10 years I was very very sick, like I had an energy leak, and it so deeply affected my personality, I didn't know who I was anymore. I hope that the DRs find out what is going on with you.
ReplyDeleteIllness and dis-ease really are a crucible, where all the illusionary stuff falls away, sometimes alarming quick. It reveals what's really going on inside, and gives our hearts a unique opportunity to touch into our inner selves very deeply. Pain is a holy refiner (not ever saying you should like it, cuz it also sucks donkey balls). I hope you are able to find your way into your true core (where you are awesome), and past the outer things that really are temporal but we like to use to measure our worth (especially to others). It would be unfortunate to find yourself hating yourself or adopting shame for an outward thing that has nothing to do with who YOU are.
America is VERY uncomfortable with pain, and cultural has no place for the "useless" until they (by the millions) become one themselves and it creates this shadow in their spirit. If there is one prayer in my heart, it is that that shadow be exorcized and set back to whatever unholy place it came from.