Cry or break something or just collapse into a heap in a dark corner and give up. I’m so bloody frustrated at the moment. I’m also very angry with myself for allowing my current physical state to affect me in such a manner. But the moment by moment is incredibly difficult at the moment and for the first time in a few years, I may actually be afraid. And I have to admit, I hate myself for possibly being afraid.
My Lupus auto-destruct sequence as been activated again. But for the first time in years, it is affecting more than one of my systems simultaneously. It is much easier to distract myself from the added pain levels when it just one part of my body but when it is more than one, I just want to say “FUCK THIS! I am so done with all of it! Time for me to give up the fight and go on the narcotics and prednisone .” And then I feel like a bloody coward. I start to cry and I loathe myself for it. I start to feel even more alone because most people just don’t get it and they give me those looks and words of pity. And it sucks big blue hairy monkey balls.
The auto-destruct sequence started with a sore throat and pounding sinuses. And now my left TM joint is so incredibly swollen that I can barely open my mouth to speak. Eating and drinking is impossible without yelping and tears streaming down my face. I can’t yawn. Last night, I awoke multiple times to the most excruciating pain. When the boys ask me a question or want a conversation, it is all I can do to not say, “Please, just go away” and then I feel like such a terrible parent. And I loathe myself even more.
I’m afraid that will I have to start getting weekly cortisone shots in my jaw again (a 2 inch needle jammed in between joints if FUCKING PAINFUL). I haven’t had to have those done in at least 6 years. I was doing so good despite the fact I haven’t been really well in years and the constant infections. But the cortisone and gold injections were stopped because the NSAIDs, muscle relaxants, methotrexate and other meds were finally doing their job.
How do I talk to anybody about this in any real way? I can’t even admit to myself right now that I may be afraid and accept it. If I can’t accept my own fear without beating myself up over it, I can’t expect others to accept it and not feel let down. I’m getting to the point once again where I just want to tell every one to go away because I have a strong feeling things are going to get worse before they get better.
I should have seen this coming. The last few weeks, my sleep has been terrible. I had chalked it up to my OCD being in overdrive because I am stressed out with other things as well and it not liking the change in routine. Ever since the boys got out of school 2 weeks ago, each morning I’ve been waking up in a panic thinking I’ve overslept. I had assumed that because I am such a creature of routine and structure and a lot of my life has been disrupted lately, it was my brains way of trying to cope with too many changes at once by not allowing itself to give up yet another routine and constant. Or maybe all these stressful things are what has contributed to my body experiencing thermal nuclear war.
I have been trying to hard to remain optimistic, cheerful, to keep my sense of humour and keep joking around with people but it is getting increasingly difficult. I just want to rage right now. I need it to be okay with people. Correction, I think I need it to be okay with me. I need to give myself permission to be something else other than brave. But I am afraid.
I really want to just scream and rage but I can’t even open my mouth to do that. So maybe I’ll cry instead and find it within me somewhere to forgive myself for this moment of fear and weakness. A moment that if it were anybody else, I would tell them it is okay and understandable and they are entitled to feel that way. I need to give myself the same permissions and messages I give others. I just don’t know if I can face what it would mean to fully surrender and admit the fact that I may be afraid.
(Please, if I come at any of this from an unintentionally insensitive angle because I don’t understand the full situation, just toss out the specifics and simply hear, “I’m here, I’m listening.”)
It may just be they are on my mind since I’m having them for a house concert on Tuesday, but this song seemed to maybe relate a wee bit somehow?
http://vimeo.com/13182859
If you want an “other” to give you permission to feel the scary stuff, I hereby give it! It’s ok to cry, it’s ok to be afraid and frustrated and pissed. I’d say those are pretty normal responses to the circumstances. I mean, WTF? Your body is attacking itself, right? That sucks!
I haven’t had much experience dealing with the physical stuff you’re going through, but I have had quite a bit of experience with emotional stuff. Sometimes (not all times) too, it’s surprising, but allowing yourself to just be with the feelings, whatever they are, allows the feelings to process through and be done (for the moment at least). Sometimes an emotion that seems scary and insurmountable actually only lasts for 10 or 15 minutes.
One of my favorite analogies for dealing with emotional stuff is the prairie fire. They burn and travel FAST across the prairie. Most people, when they see a fire coming at them, would turn and run away from it. That would be the logical thing to do in most cases of fire!
But with a prairie fire, actually the thing to do is to turn around and JUMP THROUGH IT. In a few seconds you’re to the other side, that part is already done burning, and the fire continues to move away from you.
The other amazing thing about the fires is some of the plant seeds actually require fire for germination! So this hugely destructive force is actually part of the life cycle!
Again, I’m only talking about dealing with emotions. I hope this makes some sort of sense. If not, or if it’s not helpful, I just simply say again – I hear you. I am listening. http://www.youtube.com/watch?v=nSS0wtjrm1U
Thanks, Heather. The first video was very relevant to my current thoughts. I don’t do well with strong emotions. I am quite a logic driven person and well… I’m just afraid right now. Last time my body was attacked in the pattern that is occurring right now, well… it was not good at all. And I’m breaking my number 1 rule of not worrying until there are answers and I need people around me to be strong and calm but how can I ask that of others when I can’t do it myself? That would make me quite the hypocrite, now wouldn’t it.
But thank you. Things are just really not good right now and normally this is when people start to turn their backs on me. So I built up the mechanism of don’t let them in and they can’t abandon you.
This shall pass.
Gah, actually listening to the second video and thinking that the verse parts about putting problems in quotations is rather insensitive in this situation, sorry bout that! Was thinking of the chorus – say what you need to say!
In any case, I don’t actually think it would be hypocritical of you to ask for people around to be strong and calm when you can’t do it yourself, because you CAN do it yourself when the situation is reversed right? When someone else is in crisis, you can be the strong and calm one, and now it’s your turn to have others be that for you. I’m not sure if you have that for you locally, or if it is enough to have it online, but again, I offer my ear at any time should you need it and if it would be of service!
A moment of weakness doesn’t diminish the strength that you are. Anyone can fall off a horse. Not everyone gets back on. It seems you’ve gotten back on again and again. Kudos for that!
Of course your last line reminds me of another song! “This Too Shall Pass” by OK GO. http://www.youtube.com/watch?v=UJKythlXAIY To me, “the morning” is symbolic, not necessarily meaning that the morning is the next daybreak, but whenever you get to see the light again, be it days, weeks, months, whatever. <3
All I heard was Mayer’s chorus anyway
And you do make a good point re: strength and calm for others. And no, I have no local supports which is fine as far as the emotional support, I get that in spades from other sources. It is the physical support and having someone take the boys etc that I sorely lack and makes recovering more difficult because I don’t get the rest I need.
Thanks again, Heather. I know where to find you if I need you.
The OK Go vid was a lot of fun
Jules,
The majority of people will piss and moan because they are sunburnt, bug-bitten, bruised, or all of the above, as I have been doing for the past week. You are entirely entitled to do whatever you need to in order to make yourself feel even the slightest bit better. I’m around if you need to rant about anything.
Love,
Ali
Thanks, Ali
Good god, I know exactly how you feel, even with the difference in scale, and I always feel guilty because the scale of my problems is so much smaller than what you go through.
Nonetheless, I get the “mental”-ness of how it sounds like you’re currently feeling outside of the physical symptoms; when my endo (or cysts or whichever is causing my problems at the moment) flares up I want to do everything possible to fix it, but I’m terrified to go through more than just my pain medicines, because my only semi- and permanent fixes are as bad if not worse as the symptoms.
I’ll be honest: I still haven’t listened to your podcast-thingy about your lupus. I’m simply terrified to. I’m afraid in addition to the shock of trying to FULLY understand what you go through, I’m going to automatically try to compare that to my own experience as a way of understanding yours, and they simply don’t compare in the same way. I have preemptive guilt about the way I know I’ll associate the two conditions simply because that’s how I understand things better, but afraid it will look like it’s trivializing what you go through.
God, I’ve rambled. I guess just this: I always feel like I know what you’re going through, even though I don’t, and it amazes me that even in spite of the days or weeks or however long each flare-up takes to recover from, you always seem to come back again at least mentally, in spite of what your body puts you through. Even in the middle of periods where you post about current flare-ups and the want to rage out, you keep much of your cool, at least online, which is the one place I think it’s always “safe” to vent such things because of the constant (at least partial) anonymity.
So vent and rage as much as you need, especially online. In my experience, it’s a lot easier to type out the hurts, even if you (well, me at least) have to stop for a minute or hour or more to cry it out some more before finishing. At least then you can let out your rage and vent as precisely as possible, and when people do read/see/experience it, they actually get the opportunity to see through the rage to the real emotions underneath, even if those emotions are scarier than the rage to the one feeling them. For me, at least, having those emotions but being ashamed of them and unable to talk about them makes me angrier at myself and makes it worse; after all, how can the people trying to help really understand what we feel if we don’t tell them? But talking about the hurt causes pain itself, so I, at least, try to avoid it. Venting through writing, in any form, I think is a good way to get around that.
And there I go, rambling again. I hope to god that when I click submit in a moment I’ve at least gotten all the reconsidered and reworded sentences all changed correctly; otherwise I’m going to look and sound like a madwoman. Just hang in there. Don’t let go of your optimism, but try to avoid the face of optimism for others’ sakes. It just hurts worse, and you have enough to worry about. *hugs*
No need to feel guilty, Bren. Even so I don’t always appreciate “I know what you’re going through” because you just can’t know unless you are living it, you know this and you acknowledge the “wrongess” (for lack of better word) to it. BUT, that being said, you have to do something to try and understand and a lot of the time that means picturing yourself in the situation and comparing it to your own experiences. I know that you are not trying to diminish it, you are just trying to understand it otherwise you wouldn’t feel this guilt around it. So I say listen when you are ready and do what you need to do to be able to relate on some level.
Thanks for what you’ve said.