Surviving the Fear and Frustration

March 31st, 2011 by Jules Leave a reply »

I’m driving myself mental at the moment. I’m too ill to do anything of great significance. Even typing up this blog is going to be an all day event. There is a very heavy feeling in the air at the moment and it is rather distracting. Currently there is no distraction from that which is distracting those around me and me.

I can’t play games as that requires too much physical activity. Yes, that is how ill I am right now. Mashing buttons is just too much work. I can’t read because my brain is too busy spinning to focus, never mind too fatigued after both a physically and emotionally draining 24 hours. I want to be distracted from the fact that I was hit with a large dose of reality yesterday but that is hard to accomplish when those closest to you are all suffering from the same thing: fear, frustration, helplessness and worry. And nobody wants to admit to it for a variety of reasons.

Things that are normally okay to poke fun at or joke about are currently off the table. I can understand this phenomena when it comes to my relationship. Before going to the hospital yesterday, I made an attempt to tease about something before getting to the seriousness of “Okay, I’m off to the hospital now.” This was not met in a way that would be normal. I was basically told that it wasn’t the time for such things and all he cared to know about was how I was doing. And that is where my inner conflict comes in: on one hand, I am so very grateful that he doesn’t want to make jokes for once; on the other hand, I feel terrible that he has to go through the worry, fear, frustration, emotional garbage one goes through when they make the choice to walk this path with someone. Yes, I do it for him as well but it is really difficult for me to not feel guilty when it is returned.

My children are not good with this right now. They are putting on the best brave front that they are capable. My youngest wouldn’t go to school today. Thankfully his school understands. He keeps asking me, with such fear in his voice at what the response might be, if I’m going to be okay. I really do not like that he is adding the words “are you sure?” to his questions because he knows damn fine that we can never be sure. We can just hope for the best that we caught this latest set of infections in time. And despite the chances being overwhelmingly in favour of the best outcome, things can change in a heartbeat. The rapid way in which this infection spread and took me completely out of the game is proof of this. All I can do is give him lots of hugs, reassure him that I should be fine within the week and tell him I love him. My oldest isn’t talking about it. That is not a good thing.

My friends are sitting there not sure how to react and being very careful to not say something to create more guilt within me. They are being loving and supportive and trying to figure out ways in which they can be of physical help despite the miles that separate a lot of us.

Yet despite all the outpouring of love and support, you can hear a pin drop. The life has been sucked out of the room while every one waits for me to get better and win yet another battle with lupus. The thing I hate the most about this disease is that with this flare, there is a lot of collateral damage. More than I would like. It is taking all of my emotional energy to not erect the wall and push people away because I really hate that people are having to deal with this as well. I HATE IT! And then comes more internal struggles as I am so very appreciative of it at the same time. I really do not want people to go away. I just feel terrible that my disease is the source of a lot of pain and worry at the moment. But I am so very thankful that people are pushing for me to push through, all the while being afraid and frustrated, feeling helpless and full of worry.

All day today I’ve been fighting the urge to say “If lupus doesn’t kill me, my current boredom currently will.” We all know that I find humour in the most inappropriate of places. But even I’m not sure how I feel about that joke right now. It is a little too close to home at the moment. I don’t know why but this latest health crisis has me as worried, if not more worried, that I was after my stroke. It was a very hard reminder about how terrible and sudden lupus can strike. Unlike other onsets of infection, I had no warning. There wasn’t even a little bit of a warming up period. Yes, I’ve had a cold for what seems to be forever. Yes, I’ve been extremely fatigued and stressed lately. But I’ve been no more sick that what is considered “normal” for me. Normally when I get infection, I have a couple days where I think, “Okay… I think something is building up here… I feel just a little bit more off than normal” before the big BLAMO hit. Yesterday, I awoke to “BLAMO! Be prepared for 10 days of high dose antibiotics and at least 2 weeks on an inhaler to keep your lungs open. And if the inhaler doesn’t work, be prepared for oxygen and a nebuliser.”

I’m afraid. I hate to admit that because then other people will become more afraid than they already aware because if I’m not being my normal “I’m fine” self and reassuring every one, something big must be up. But this is what I am thinking. Maybe we are too busy trying to hide from the fact that there is a lot of fear, frustration, guilt, helplessness, anger, worry, heavy feelings going around at the moment.

So how about we make a deal. I will try my best to not want to pull away when you admit that you are afraid and stuff, in an attempt to let me know you care and in return, you try to not protect me from how you are feeling because I know damn fine. I think we are all a little bit sick with worry right now and it may help if we all just admit to it. I know I’ll feel better about things. Maybe perhaps people are watching what they say because they know that I do have a few triggers about these things and things like telling me to rest (because I’m not a child and can take care of myself [stubborn Jules is stubborn]) and people know things like “feel better soon” can cause me to not talk about what is going on because the look on people’s faces when I am unable to tell them I am better soon is heartbreaking.

All of this is just so bloody heartbreaking and terrible and emotional. Screw the physical garbage. That is a cakewalk compared to the rest. The next few days, where I have to sit idly and wait to get better, giving me plenty of time to focus on the emotional junk, is where the real surviving comes in. And just maybe if we all were to admit to the fact this is difficult on many of us emotionally, we will all survive it together and come through it stronger.

Just an idea.


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