Consuming.
That's the word that keeps coming to mind in the past couple of days. The pain consumes me, eats me up. Not much is left behind.
Last Wednesday was the best day, pain-wise, that I've had in months. I went to PT that day and she did "skin rolling," which she said might leave me sore. I've been in agony since Friday. I'm not sure if it was the PT or some other thing that did me in. It's followed the same general 24-hour cycle it's done in the past—mornings are tolerable and afternoons I contemplate going to the ER. It's reduced me to a monosyllabic, glazed-over zombie the past few days. Worse than usual.
Sometimes it feels like a horrible stomachache and I try to pacify it with food. It's become a rather bad habit, feeding an ache that doesn't really need food. I don't know what it needs.
Right now it feels like my entire pelvis is burning, pain level about an 8. If I zone out and kinda become one with the pain, I can feel it take over my entire abdomen, burning a line through my core, out my arms, and leaving my head foggy and achy. My legs have been spared for now.
I'm forcing myself to blog because I need to get out some of my angst. The thought of composing an email to a friend or talking to a family member is overwhelming...no ability to concentrate on conversation or care about anyone else's problems.
It feels very indulgent, this hyperfocusing on myself. I know that might sound ridiculous, yeah, I can't control much about the pain. But when it goes on for 6 solid months, it feels horribly egocentric and my world feels very small.
I want to make a quick list of things I want to do when I get better, things I'm afraid I won't appreciate or take the opportunity to do once I'm able. I want to hold myself accountable. Here goes: I want to run again. I want to go to a yoga class. I want to have my little nieces and nephews over for a slumber party. I want to walk around the neighborhood. I want the pharmacist's cashiers to forget my name (ok, not a goal but a wish nonetheless).
I'm doing everything right. I'm doing my what my PT says, taking soothing baths, meditating, doing diaphragmatic breathing. It is still hard to keep the panic at bay, and I don't see how anyone could stay calm through this. It just creeps in, little voices telling me it might not get better, maybe this is the new normal. Maybe I will always be too sick to raise a child.
I haven't responded to comments from my last post—sorry. My infertility therapist is actually required by her workplace to have a certain percentage of her patients be IF patients. I don't feel betrayed or anything; she doesn't really have a choice. I'm fine with it mostly, just a little sad.
I'm taking the amitriptyline at night. The nurse recommended experimenting with taking it at dinnertime to see if that helped with drowsiness the next day, and it hasn't. I think I'm officially done with this med. I don't think it's helping and the sleepiness is horrible. I doubt multiple cups of coffee a day is helping the pain.
When I take a pain medication, I get some relief for about an hour. Tonight I took it around dinnertime and actually talked to my husband. He's been getting a lot of "don't talk to me but find something for us to eat" the past few days.
I'm scared. When I feel the pain in new places, when the pain in my core seems to reach up through my chest and into my jaw and teeth, it's hard not to worry.
Oh !an, my heart sinks thinking of you living like this. I am so sorry you have such bad days like this that consume you. As if dealing with everything else isn't bad enough. I really hope it eases up some, so at least you can function. Thinking of you...
ReplyDeleteThanks, K. :)
DeleteOh ... I am so sorry that you are here again. I don't think it's indulgent or egocentric ... it's like Maslow's hierarchy, maybe ... how can you move on to "think of other things" when there's this gorilla in the room? In your body?
ReplyDeleteSending you love, and light, and hoping that there is relief.
Thanks, Justine! Like your new pic, by the way.
DeleteI hope there is relief from this soon. It is unbearable and that you can function to blog is amazing. There is nothing worse that this sort of chronic pain and I want very much for it to just stop so that you can enjoy every single one of those things.
ReplyDeleteIf it makes you think of going to the ER, go. There needs to be some relief and there has to be some help soon. Maybe the PT hit something. Wishing you pain free and soon.
Thanks. It's tempting to go to the ER, but we had a bad experience there earlier in this process. We waited for 5 hrs and weren't seen and are not eager to repeat that visit. But I still think about going sometimes.
DeleteWho wouldn't worry? Who could stay calm during prolonged pain? I dare you to find a person among us who is that stoic.
ReplyDeleteHugs and wishes for the pain to subside. When you start running again, I will be beside you. ; )
Thanks. :)
DeleteIt's so hard to focus on anything outside of yourself when your body is constantly, loudly, insistently calling for your attention. :( I would be panicking, too (or trying very hard to keep panic at bay). *HUGS*
ReplyDeleteThanks, Robin. :)
DeleteLady, I'm so sorry. I can feel the anxiety and worry as I read this post. Though I have no idea what you are living with regarding chronic pain, I can sympathize about feeling like it will never end and being disconnected with the world. That in and of itself is hard. Very hard.
ReplyDeleteUnfortunately, our medical system isn't good with treating chronic pain. There's too much concern about creating addicts and many patients find that their doctors 'abandon' them as time goes on, simply because their doctors are frustrated with the situation too.
I have a suggestion you might want to look into (no pushing, just an idea). Jon Kabat-Zinn is the founder of the Stress Reduction Clinic and the Center for Mindfulness in Medicine, Health Care, and Society at the University of Massachusetts Medical School. He has a series of CDs he's created to help people living with chronic pain. I've used these for treating my anxiety and depression and have found them incredibly effective (when I'm good about using them). It's not a cure, but it is an option for management. In addition, I know that he is receptive to email, so you can contact him to for tailored treatment. Again, it's not a cure, but it's another option to try with all of this.
Again, I am so sorry. You ARE doing everything in your power to get better and it's beyond unfair that you are being tortured. Please know that I think of you daily and I'm holding onto hope that one day soon you are able to do all those things on your list. All those things and so much more.
Thanks, Cristy. I'll check and see if our library has those Cabot-Zinn CDs. I know they have one of his because I've checked them out before.
DeleteYou hit the nail on the head--our medical system doesn't know what to do w/ people like me. I've already confounded a few doctors who gave up on me. They are completely freaked out about opioid addiction to the point that they don't treat my pain half the time. It's beyond frustrating.
I wish so badly that I could make it stop! It makes me so angry that you just have to live with this pain, every day, trying to find ways to cope with it while it eats away at your freedoms and basic enjoyment of life! It's not fair and I feel like screaming for you... there has GOT to be someone that can DO something to help you! There may not be much anyone can do to take away the emotional pain involved with IF (which is so difficult to live with on its own), but for pity's sake! This is physical pain! It should be curable, treatable or better managed, at the very least.
ReplyDeleteYou are not self-centered or egocentric or anything like that! You are amazingly strong to be continuing to function the way you are, despite this painful burden you carry. I'm thinking of you every day, sending love and hoping for some relief for you soon.
Thanks, Kate. I'm surprised to be in this position...they never told me I could end up with chronic pain! Ugh. Not one of the outcomes of IF treatments that you anticipate.
DeleteUnderstandable. I went off it cold turkey, I don't recommend doing that though, when it stopped working for me.
ReplyDelete