Helping women with chronic illnesses

Sore But Almost Rosey

I should have posted about Tori sooner. Longtime readers know it is very overdue. Today is the day. Let the healing begin.

Video clip – a song that helps me when I’m hurting:

The last few weeks have been challenging. My body is smart enough to know this. My body remembers things and sometimes seems to “store them up” and then spring them on me. Today was one of those days when it was truly a struggle to get out of bed. I am not talking about not feeling like getting out of bed or being too tired to do so. No, I am talking about waking up and wondering to myself, “HOW am I going to get out of bed?” My husband left for work before I got up because he knew I needed the sleep and that I didn’t have any doctor’s appointments today. So there wasn’t anyone home to physically get me out of bed and I started the day wondering how I was going to do it without help.

My muscles hurt. My skin hurts. I hurt everywhere from head to toe. My teeth hurt (some of which is cavity-related – but not all – because this still happens when I’m cavity-free). My hair even hurts. I feel like I got hit by a truck, then a train, and then a bus. Every molecule of my body hurts. Every cell. I am sore. None of this is new to me. I’ve hurt this much before. I am just incredibly frustrated because I have so much I want to do and have to do but I am so sore that I am barely functional right now.

Rather than focus on the pain (a trap into which I could easily fall on a day like today), I am going to practice what I preach and fall back on self-care and coping mechanisms.

I have decided to have an Almost Rosey day.


One coping mechanism is gratitude. I am thankful that the acupuncture I had the other day has definitely lessened the nerve pain in my “surgery that didn’t go as expected back in January 2008” leg. The pain was out of control because I had missed two acupuncture appointments… resulting in the longest gap between appointments that I’ve ever had. I am thankful that the bladder instillation has calmed down my interstitial cystitis, which really got flaring badly a few days ago. I am thankful to have a roof over my head and that it is nice and warm in here.

Next, I am going to find some Tori Amos music. As longtime readers will recall, Tori’s music helps me at the toughest times, helps me cope with pain, and calms me down when I’m agitated. Her seasonal album was released recently and it’s just beautiful. So, I’ll be putting that on in just a minute.

As far as self-care, I got enough sleep last night (despite horrible insomnia that kept me up too late). My next focus is on making myself eat whether I feel like it or not. Who knows? I might even fit in some meditation time.

All I know is the pain I’m in right now is the kind that makes it hard to think straight, makes everything a massive effort, and makes me appreciate the times when simple functioning isn’t such a struggle.

I posted the preceding video (which I have posted previously) because I needed some “Almost Rosey” today. Now, I’m off to pop in my new Tori CD (Midwinter Graces, a beautiful seasonal album I highly recommend) to try to chill out and relax my muscles in the hope of getting the edge off of some of this pain because it has reached the overwhelming stage. I’m right on that edge right now of wondering whether to try my hardest to stay calm and relax myself before the tears start to spill… or purposely having a good cry to get the release that may come from that. I’m not sure which will happen yet. Maybe both. Maybe a good cry will enable me to lie down and really appreciate my Tori Amos music so I can try to relax my muscles. Time will tell. I am just going to try my best to listen to my body’s signals and do what my body wants and needs.

Finally, I will close with some links to previous Tori Amos posts… because her music is honestly one of my biggest coping mechanisms.

See previous posts HERE, HERE, and HERE.

This post was written by Jeanne at Copyright © Jeanne — All rights reserved.

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Reading: Sore But Almost Rosey


1 YayaNo Gravatar { 12.01.09 at 9:27 pm }

I’m sorry you were in so much pain this morning.
Every time I hear a Tori song I smile and think of you!
.-= Yaya´s last blog ..My Dog Sheyla =-.

2 AllisonNo Gravatar { 12.02.09 at 1:19 am }

So sorry about your pain! Hope it is indeed rosier!

I do like Tori. I may have to check out this seasonal album!
.-= Allison´s last blog ..D&C =-.

3 endochickNo Gravatar { 12.02.09 at 1:23 am }

All my hugs to you, Jeanne. You know you can call me or e-mail when you need to talk through the pain. Hang in there, hopefully tomorrow will be a better day.
.-= endochick´s last blog ..Paper Review – ‘A call for more transparency of registered clinical trials on endometriosis’ PART ONE =-.

4 JeanneNo Gravatar { 12.02.09 at 2:31 am }


After 27 years of living with various degrees/types of chronic pain, I think the scariest times for me are when I feel somehow physically stranded. For example, the times I can’t stand up or walk tend to really get my attention. Today was one of those kind of days… where I truly wasn’t sure I was going to be able to get out of bed. When I get afraid I wouldn’t get to the phone for help if I needed to is when it really hits me just how sick I am. I say this not in an, “I’m feeling sorry for myself” kind of way. No, that’s not my point at all. I just think it’s important for people to understand just how profoundly various illnesses affect patients.

In today’s case, fibromyalgia has declared full warfare on my body again. The severity of the fibro symptoms is always coming and going but on days like today it’s just screaming at me.

Sometimes, with so many years of practice at managing my pain… I almost think I’ve gotten too good at it. Let me explain. Sometimes, I exert so much energy and effort at minimizing pain or distracting myself from pain or working my way through pain (while always trying to be careful not to force myself to do things that make me sicker in the long run) that I sometimes get a bit of a shock once I pass the “threshold” of not being able to ignore, minimize, distract from (etc.) the pain anymore. It’s at these times that the cumulative effect seems to catch up with me all at once – resulting in mornings like today.

I’m not complaining. It is what it is. It’s just scary to me when I lose things like independent movement. That’s when I start to freak out. No matter how bad the pain is, if I can still move around independently I can generally “deal with it” as well as anyone can deal with these kinds of things. It’s when I feel “stranded” or in need of help from others for basic functioning assistance that I get shaken up more.

As far as Tori’s concerned, she has helped me weather some major storms! Anything that makes you smile is good in my book. 🙂



I am so sorry for everything you’ve been going through! You and Weston are in my thoughts and prayers. I’m thinking about you all the time. I wish I knew how to help. You know where to find me if you ever need an ear! I just can’t imagine what you’re going through.

I adore Tori’s Midwinter Graces album. It’s just beautiful. If you like Tori, as I know you do, I’m sure you’d like this. It’s very soothing. She brings out the strings for this one. It’s really pretty.



Thank you. Today’s big obstacle was truly getting out of bed. The trick was that I didn’t have a phone within reach. So the only person I had to help me deal with it was… me. These things do happen and I got through it. I just hate those scares where you get that “I’m stranded” feeling. You know what I mean? I appreciate your support and may take you up on it soon. 🙂 Whereas my pain is better now than this morning was, that’s not saying much! So, who knows what tomorrow will bring. (OK, technically today as it’s 1:41 am). Anyway, must wrap up and get to bed but thanks for the support. All I know is just hearing Almost Rosey today helped me more than you can imagine.



5 CafNo Gravatar { 12.02.09 at 2:59 am }

I’m so sorry to hear that things have been so painful for you, Jeanne. Feeling helpless is so terrifying, I’m a bit helpless myself at the moment and reading about how you are focusing on the good and trying to cope without going insane is reminding me that I need to do the same!

Just quoting you as what you wrote here is so familiar to me! It’s like you pulled the words right out of my mouth xx

“Sometimes, with so many years of practice at managing my pain… I almost think I’ve gotten too good at it. Let me explain. Sometimes, I exert so much energy and effort at minimizing pain or distracting myself from pain or working my way through pain (while always trying to be careful not to force myself to do things that make me sicker in the long run) that I sometimes get a bit of a shock once I pass the “threshold” of not being able to ignore, minimize, distract from (etc.) the pain anymore. It’s at these times that the cumulative effect seems to catch up with me all at once – resulting in mornings like today.”
.-= Caf´s last blog ..A Month Of Marvellous Music Madness Juxtaposed With Spring Flare Sadness =-.

6 JeanneNo Gravatar { 12.02.09 at 3:10 am }


You’re so sweet. I know you’ve had a very rough time lately. When I read your post the other day about how you needed help with eating, it really hit me because I have had times like that. They have been far and few between but when they happen, they are scary!

I’m so glad you understood what I meant there! It made sense to me but I wasn’t sure how readers were going to take me talking about being “too good at managing pain”. It sounds counter-intuitive. I’m glad you understood what I meant. 🙂 To be clear, I’m not glad you’ve had to suffer the painful experiences that help you understand it… but I am glad you understood what I was trying to say (vs. wondering what in Earth I was talking about).


7 endochickNo Gravatar { 12.02.09 at 9:27 am }

I so understand what you are talking about with this “too good at managing pain.” My PT has this evaluation he does every couple months (wow, have I been in PT that long?!?!) where he asks me what percentage does my problem interfere with daily activities. Then he lists things like laundry and cooking, etc. It’s gone considerably down, but in the beginning, I told him it doesn’t interfere at all. And what I meant was, yeah, it hurts and sometimes I have a migraine but I work through it. I’ve been known to actually WORK through a full-blown basilar artery migraine because they couldn’t find a teacher replacement for me and I couldn’t leave a room full of 15 kids alone! Or, I’ve made my daughter’s lunch and cleaned up her accidents because I’m the only one home with her and don’t have a choice. The point was, as I stressed with him, I didn’t have the luxury of letting the pain get to me. I had to manage it the best I could. I had lived with the right side of my face and neck in a constant battle of tingling and pain for over a year because of an injury that occured during my daughter’s birth. This injury is what caused the migraines and the trigem (long story and one day perhaps I will blog it). But I had become so accustomed to pushing through the pain because I HAD TO, that I knew nothing else but to manage it. And we with chronic pain, endometriosis, fibro, it doesn’t matter – we do this ALL THE TIME. We manage and deal and move on because if we didn’t our lives would just crumble around us. And we do become too good at managing it to the point that we sometimes forget to stop and take care of ourselves when the pain becomes too much.
.-= endochick´s last blog ..Paper Review – ‘A call for more transparency of registered clinical trials on endometriosis’ PART ONE =-.

8 JeanneNo Gravatar { 12.02.09 at 10:39 am }


It’s nice to know you too know what I am talking about with being “too good at managing pain”! I too have had occasions where a health care professional asks me questions about how I am doing or how I have been doing and I answer to the best of my ability… but sometimes look back at my answer later and realize I could have been more accurate by wording it differently. In other words, I catch myself having inadvertently minimized the impact on my quality of life because I’m so used to it that I don’t always remember to “count” it when asked such questions.

You have talked before about your “triggering incident” for the trigeminal neuralgia and migraine here and there (in passing usually) but I think it would be good if you blog about it in detail. I have never heard the full story of what happened. I would not be surprised if someone out there has had a similar experience and blogging about it could help you meet other people who have had similar experiences.

There are times we HAVE TO push through the pain because the timing is such that someone’s safety depends on it, for example… such as you mentioned with caring for your daughter and being the only one there to do it. When we are responsible for caring for someone else, we find a way to make it work.

I think the trick is that we have to do everything in our power to keep these times where we HAVE TO do something, no matter how much pain we are in or what the cost to our future health, to a minimum because our bodies can only take so much.

I think we have to carefully plan things out so that the times we HAVE TO to things are spread out as much as possible. I know that when my schedule gets clustered too tightly and there are too many “HAVE TO” activities, sometimes my body rebels and shows me that I may feel like I HAVE TO but that doesn’t necessarily mean it’s going to happen!!

For years, I forced the issue. Now, if I am really sick and I see an appointment on the horizon that is not looking promising, I call and postpone it. I used to hate doing this. I used to have this idea that appointments are set in stone… period. But you know what? They’re not. Pushing back doctor’s appointments is far easier than I would have thought. They get cancellations all the time. It’s not a big deal. So, if I am sick and overwhelmed and I see a bunch of appointments looming at me (all of them 45-60 minutes each way from me)… I have learned that it’s OK to reschedule rather than forcing myself to go to an appointment because I feel I HAVE TO.

Even the really important doctor’s appointments are sometimes better off postponed… rather than me dragging myself in there in excruciating pain and paying for it for days or weeks after. Sometimes I’m better off just waiting a bit to get in at a time when my body can handle the driving, waiting room hard chairs, and appointment itself.

You’re right. We do this stuff we feel we have no choice but to do ALL THE TIME. The trick, from my perspective, is how to find a way to do this HAVE TO stuff less. How do I find a balance? How do I minimize the number of activities that fit into the HAVE TO category? Are the HAVE TO items all really HAVE TO items? Can any of them be pushed back to another time? Can any of them be skipped altogether? How do I find a balance? How do I push myself hard enough to “get things done” but not so hard as to land in the hospital or worsen my conditions?

As far as our lives “crumbling around us” if we don’t get to all the stuff in the HAVE TO pile, what is the risk of that happening because we push ourselves too hard? Like you said, we can become “too good at managing it to the point that we sometimes forget to stop and take care of ourselves when the pain becomes too much”. I think this is a key point.

When we push ourselves so hard that self-care (i.e. eating, sleeping, relaxation/coping mechanisms) goes out the window, then I think we risk “crumbling”. We may fear things will grind to a halt and “crumble” if we don’t finish the HAVE TO pile… but what if forcing our sick bodies to finish the HAVE TO pile causes the crumbling?

I think the core of this goes back to self-care and trying to find a balance between pushing hard enough to be as productive as possible (without causing self-harm) and pushing ourselves hard enough that we do begin to crumble.


9 PoobaNo Gravatar { 12.27.09 at 8:32 pm }

Okay I finally figured out how to find all your Tori posts! At first I was using your navigation and clicking on Music Art Fun and Inspiration. No wonder I couldn’t figure out how to comment!

Anyway, this song is perfect for the day you were having! I believe that music can heal, especially Tori’s music!
.-= Pooba´s last blog ..Stacy Rocks! Like A lot. No Really, Stacy Is The Shizzle. That’s Right, I Said Shizzle. =-.

10 JeanneNo Gravatar { 12.27.09 at 8:42 pm }


Yay! I’m glad you figured it out. Did you search “Tori Amos” in the search box? There are quite a few Tori posts. The “music, art, fun, inspiration” page is more of a static page (more or less).

Yes, I just love this song! I totally agree that music can heal (especially Tori’s music). 🙂


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