You shouldn’t ask “Why me?” Instead you should ask, “Why not me?” That sort of reasoning burns me. To suggest that I should not question why things happen to me goes against everything I’ve learned about the importance of self worth. If I consider myself worth something then naturally I’ll question the justification of events in my life. What did I do to deserve this? What great badness did I pursue that warrants tragic events in my life? For many the answer is “I didn’t do anything,” and it would be true. I think it’s true for myself as well. I also think it says a lot about self worth to challenge unjust, painful or unfair life events. I think it’s natural to scream out when in pain and unnatural as well as counter productive to always suck it up and always be strong. With that said I’d like to do drag people through the emotional toll of chronic pain concerning my Fibromyalgia and Lupus. This is also a review of my emotional cycle as discussed in therapy today.
When a flair up starts I get quiet and begin to isolate myself. I don’t want anyone to see me flinch or wrinkle my face because of shooting pains. I’m ashamed of my condition. I don’t want to see sad, sympathetic or empathetic looks. I certainly don’t invite pity. When it first starts my pride is hit and I want to stay away from everyone. As the pain increases depression sets in. I may not recognize it as depression at first but the signs are there. Every act seems like a chore. Everything from taking a shower to eating, talking to people or opening my eyes seems like it takes more effort than I’m willing to offer. The other day I told my therapist that I don’t even feel like getting up to make toast.
I begin to over think everything. Usually if I want toast, I get up and make it. Simple as that, but the other day when I thought about it it went like this – Oh, toast sounds good but wait I’d have to get up, walk across the room, get the bread, put it in the toaster, wait for it to get done, put butter on it and eat it. Once I over thought the process and complicated matters, making toast became too great for me to master. I didn’t eat for two days cause I over thought it while in my depressed state. I do this a lot, over think things while depressed. About a month ago I would have just made something to eat but in the middle of my depression I thought of each step and how I couldn’t offer that kind of energy for the task. Enter the suggestion of a TV dinner. Nope, I thought. I’d have to go buy it, unwrap it, nuke it, get silverware and eat it. I really thought this so no TV dinner for me. Two days went by because cooking seemed too big of a deal, completely overwhelming.
Once I recognized other symptoms of depression I was pissed. You mean to tell me a physical condition can alter my thinking processes, alter the way I perform simple tasks and make me feel worthless? I was pissed, but that’s nothing new. I expected it because I know my emotional cycle during flair ups. I start the emotional trip with shame, take a sharp right into depression, go straight with that for a bit then set my cruise control on the Anger Highway. Right now I’m on cruise control. My windows are fogged over with pain. The windshield wipers nor the defrost system can cut through the fog. I can’t see anything. That’s where I am, simple and true it’s where I am.
I know if I drive too fast I could wreck the car so I have to pay attention to every bump in the road for fear of losing control of this vehicle I call my body and mind. Paying extra attention to what I do and how I do it is exhausting. Why, why can’t I just get up in the morning and walk the dog? Why can’t I go to the grocery store like a normal 37 year old woman, get a few items then come home without the need for pain meds? Why do I need to sleep off a short trip anywhere? And why on God’s earth is it legal for me to be prescribed destructive opiates that don’t really work but illegal for me to use the one thing that at least gives me relief for a bit? The option seems to be this: Take our opiates and risk organ damage as well as addiction or destroy your perfect record as a citizen. Thanks for that, thanks for having me decide between rehab and a criminal record. Thanks for having me scared to death of both choices.
So here I am feeling rather sorry for myself because I know I can’t live at this level of pain. I’m scared but mostly angry that at 37 my life consists of choosing the lessor evil as well as choosing which minor task I can complete today without wrecking my already jacked up vehicle. Can I walk down 3 stairs to take the trash out, do a load of laundry and eat or should I just eat and screw the rest? Which task can I manage today? Pissed, it pisses me off. I can’t believe my hands won’t function like they use to. I can’t believe or accept that by 6 in the evening I’m done for the day. I’m angered by the realization that this disease has debilitated not just my body but my spirit and sense of self.
I.am.angry. I want my body back, the one that lived and moved with youth and vigor. I want it back. I grieve for the loss of vitality and physical strength.
Eventually my anger will run out of gas and I’ll slow my roll and get back on the road to shame. I’ll come full circle with this and begin to feel guilty about how angry I’ve become. I’ll try to make up for my increased irritability. I’ll sooth myself in various ways as I wait for the next flair up with a bitter taste in my mouth. When it starts I’ll be just as stunned at how much pain has changed me. I’ll feel powerless and like I have few choices. I’ll want to know “Why me?” but receive few satisfactory answers but plenty of judgment for having the audacity to ask…. why me?
Joan of Arc
The Emotional Toll of Chronic Pain – Wednesday, July 29th, 2009 – 5:08PM EST
I wouldn’t dare use words such as brave or strong . . . I know how when someone applies them to me they often have the effect of making me angry, because I don’t feel I’m either of those things.
You’ve every right to question the why of what you’re dealing with, and to feel angry. You are honest about your anger; I would hate to think how much worse your pain would be if you tried to lie to yourself and pretend you weren’t angry.
I’ve nothing helpful here, but I sense you’re not looking for spiffy little platitudes. I hear everything you’re saying. I’m there quite often myself, so I wouldn’t disrespect you by trying to humor you out of your depression/anger.
I do hope your latest flare up ends sooner rather than later. I hope I’m allowed to wish you that much!
Hi. I am a sexual abuse survivor and I have been reading your blog for a while now. I just wanted to mention this blog to you because it has helped me quite a bit:
http://healmyptsd.com/ptsd-blog
Beauty,
Well wishing is fine. No problems at all with that.
Jenny,
I appreciate that.
Oh WOW Jenny. I was really intrigued by and impressed with your art therapy. Thanks to the PTSD blog as well as to your own.
Austin
Just wanted to let you know that I love your windshield wiper analogy. And that I do get that sometimes even making a piece of toast can seem like climbing Mt Everest.
Isn’t it crazy when you think about making toast then go, nah, that’s okay. I’m good. Get up to make it? I don’t think so.
Even as angry as I am I still laugh at myself for not making toast.
I’m at least back to eating. I had that two days where Mt. Everest was too high for me but I’m at least back to eating. I didn’t do anything else today but I did at least put real food in my mouth
Austin
Hi,
I tell myself that wherever I am at is where I am at and whatever I am feeling and thinking is normal and okay.
I think that other people don’t want to cope with what other people are going through, and since they aren’t going through those things, they want to be in denial and that is why they try to shut us up. They suck.
Good and healing thoughts to you.
Kate
The record-breaking heat over here also makes my Myasthenia flare, and I hear ya. Walk down (and then back up!) thirteen stairs so I can X? The HELL with that. I’m good right here, lying very still.
I spilled milk all over the rug in the kitchen the other day and had to put the rug in the fridge so the milk wouldn’t sour… no way in Hades was I going to make it through washing the stupid thing.
I hear ya. My psychiatrist says, ” ‘Why’ is a victim question.” Oh yeah? Eff you pal.
Brave and strong…don’t fit…I mean I don’t really think I have much of a choice. Either keep trooping or drop dead.
I think maybe I’m odd, a few of the opiates seem to be worth the gamble. I just can’t get them from any doc though. Just want to strangle my primary care doc right now. She’ll give my mom pretty much anything and try to push it on her. Me, nothing. So, layin here in a big ol’ trigger point flare borrowing my moms RX just so I can try to work out the knot…not helpin much (T3 rarely does though, crap med). Wishing I could get my doc to trust me that I really don’t need it that often. Wish she’d just write me an RX for three pills.
Bleh, sorry ranting lol. Bout to head into 48hrs straight with this and getting more PO’ed by the minute.
I hate when the simple things become these monsterous tasks! It never seemed to fail when I would flare really bad that I’d finish the horrendous task of cooking for myself only to have an attack of the dreaded Fibro Butter Fingers and end up with hard earned dinner on the floor! Yeah, not sure how many times I cried over those.
“Yeah, not sure how many times I cried over those.”
My tears would be too many to count. I drop stuff because my hand simply gives out or freezes up. Argh!
Cooking seems as impossible as running a marathon. Simple tasks are exhausting and you’re right, the longer the pain lasts the stronger the anger grows. The dog is breathing too hard, there’s a knock at the door, a fly is in the room, the TV is either too loud or too low. Everything hurts and nothing is right. Every tiny little thing becomes a huge ordeal until I want to just sit in one spot and fade off.
This is one of those illnesses that eats not just at my body but at my pride. It shakes to the core my gentle side and leaves my eyes squinting, unable to see anything good in life. Fibro and Lupus are kicking my ass royally.
There were times I was ready to give up because nothing at all was helping with the pain. I was ready to die, simple and true, ready to die. Living in that kind of pain 24 hours a day is only for the worst criminal types out there. I just needed it to stop, even for a little bit. I at least have a measure of relief now so my desperate need to exit is far from me but I was at my threshold a long time ago. Something big had to change and I knew it. I scared myself with how often I thought death was better than living like that.
I’d see a train ready to cross my path and would contemplate ending it. I’d think the same with an 18 wheeler. It got really bad. Finally I told my doctor just how diseased my thought process had become due to the pain. We discussed in detail my alternatives (as much as the law will allow) then some months later I took that leap. Even still there are days where I can’t stand the pain but I have days when I can and that hasn’t been so in a very long time. I never asked for this to be taken away, I just wanted relief…. just some relief.
My doctors began to really understand when I went into detail about how desperate I was for things to change. I did not mince words.
I’m sorry you know this pain all too well…I really am.
Austin