Gentle Day Roses

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I’m in a gentle frame of mind – not wanting to think too much and not wanting to do too much. It is a beautiful day with clear blue sky, warm sun, low temperature, low humidity. Perfect for getting lots of things done but I need to be still and quiet.

I am loosing weight which isn’t easy for me because exercise is very difficult. It doesn’t take much exertion to create pain in my muscles for a couple of days but I also need to exercise to help my central nervous system respond appropriately to pain signals and keep my muscles conditioned. In those first few years it felt like I was damned if I did and damned if I didn’t. I’ve learned to live with it, most of the time, and am continually looking for the “sweet spot of perfect exertion.” Is that a song title that would sell?

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One of the characteristics of fibromyalgia is pain amplification – they have done some really interesting studies measuring how much pressure on the thumb nail it takes to create pain in “normal” people and people with FM. Pain is subjective but they made it objective by watching the pain centers of the brain flash on. It helped me to know that my brain really does get very active with just a small amount of stimulus – and when people without this CNS disorder are given thumb pressure to make their brains light up as much, they said ouch! I no longer feel like a wimp after reading this research report.

So, what does that have to do with my gentle day roses? Yesterday I got really discouraged; I’m-going-to-eat-worms-and-die-then-you-will-be-sorry discouraged. I beat myself up pretty badly because I couldn’t do my weight loss program the way it should be done. I didn’t lose 3 jean sizes in a month type of discouraged. I can’t do this discouraged.

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I don’t stay in these moods long because they aren’t fun. I move pretty quickly into problem-solving mode so after I shed a few tears I thought about why it wasn’t working and how I could make it work. I worked out a new plan and today I met with my coach and she thinks I have a good plan – at least for this week. That’s all I need is a plan for this week – then I can evaluate and create a new plan for the next week if I need to.

I needed to post these roses as a gift to me. They are for my courage when I know what I am trying to do is going to make me hurt but I do it anyway because it is good for me. They are for my eagerness to see beyond my stuckness to find ways to make my life better and help me meet my goals. They are for my tenacity to stick with a decision even when I get tired and discouraged and question whether I can really do it. They are for my willingness to see the funny side of life that helps me connect with others and draw others into wanting to help me when I need them.

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These are the perfect kind of roses to meet my gentle day needs. They hold the memory of the joy of photographing them at the garden center, I had the fun of processing them to learn how beautifully my 50mm lens does depth of field, and best of all I can share them with you if you are needing a gentle kind of day when some roses would sooth your spirit and reward your inner strength.

Please enjoy and consider them my blessing sent to you.

 

Talking About Pain

During the first year I found that being sick brought up a lot of old, unresolved issues. It makes sense that having a chronic illness that decreases our functioning and increases our need for help from others would bring up issues around dependency, asking for help, and self-esteem. It can also bring up idiosyncratic personal issues, and a huge one for me was understanding, communicating and coping with pain. This was my favorite journal topic during that first year. I struggled to know how and when to communicate pain to others, especially those who were helping me most often – my husband and doctor.

I made the decision as a 4 year old that I wasn’t going to tell anyone about my pain, ever, and I would take care of myself. I had been badly hurt by a family member and I learned that if I told anyone about my physical pain they would create even more pain and I couldn’t handle any more. This was reinforced throughout my childhood by being told, “Stop your crying or I’ll give you something to cry about.” As a child I couldn’t understand the logic of that statement and I still don’t.

As an adult, I remained true to this decision and even when I experienced very intense pain, I didn’t tell anyone until I would end up in the emergency room. I don’t think I developed a voice for pain or learned the social “rules” for pain. Psychotherapy taught me how to talk about my emotional pain but I still hadn’t learned how or when to communicate physical pain.

I had an excellent comprehension of emotional pain, but felt like physical pain was an incomprehensible language. I wrote in my journal:

If someone tells me they are hurting emotionally, I know exactly what they mean. When I think of physical pain, my own or others, I don’t seem to know what it means. When someone tells me they are hurting emotionally, I don’t need to know “how much” or “how intense” to feel drawn to them and want to help them. When I feel physical pain, I get caught up in needing to judge whether it is severe or mild and believe that no one could possibly be drawn to me and want to comfort me. In fact, I am still very hesitant to talk about my physical pain. And fibromyalgia pain makes it even more difficult because there is no open wound or broken bone. It doesn’t seem real, even though my experience is very real. The pricking in my legs and hands right now feels no different than if there were sharp little pins in my clothes. My body responds to the pain with nausea and high blood pressure. The pain wakes me up at night and causes me to jerk. 

It seems like pain is such an overwhelming part of my life but a part that isolates me from people instead of bringing connections. I don’t want my relational connections to be because of pain. I know how human connection can heal emotional pain, but I don’t know how human connection can heal my physical pain. I know that I am the one who makes my pain isolating. I am the one who lies and changes the subject when people sincerely ask me how I am feeling. I only take my pain seriously when it causes me to cry or creates symptoms that are real for me, like mental fog and breathlessness. (Personal Journal, 05/04)

When pain became a part of every day, when would I say to those who care about me that I am hurting? When my pain isn’t life-threatening, in fact isn’t even a symptom of a fixable problem, why would I say anything to anyone? My husband asks me how I feel and I don’t know what to say. If I say great, I feel like I’m not being true to myself and should be able to be as active as I was before I got sick – and as involved in his life as he was used to. On the other hand, it would be a real bore for him to hear every single day that I hurt. In the early years, even if I had said “better than normal” or “hurting more than normal” I don’t think he would have known what to do with it. What I felt I needed was for him to understand that I might not feel good enough to do something one day, but not assume that I would feel the same the next day and most importantly not to tell me when I shouldn’t do something.

My husband had gone through the Fibromyalgia Program with me at Mayo which helped him know when to take charge and help me do the things I needed to do, like stay active and exercise. He also suggested that I slow down when I needed to hear it. I think I was really hard to live with in that first year because I didn’t want to talk about pain and was very conflicted about needing and wanting help. I wanted to be competent and independent like before.

Comment from my husband:    It was really frustrating to see the person I love being so sick and not know how to help. It was difficult and painful for me, too.

Copyright © Patricia A. Bailey and I Miss Me, Too/imissmetoo.me 2012-2013.

Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. I encourage you to use excerpts but please be sure to give full and clear credit to Patricia A. Bailey and I Miss Me, Too. Please also give specific direction to the original content by provided this Blogs url at: http://imissmetoo.me

And My World Came Tumbling Down

Welcome to my blog. In January, 2004 I was diagnosed with Fibromyalgia at Mayo Clinic and, along with a lot of other information, I learned it is important to pace my activities and control my environment to reduce stress. I’m not sure I totally comprehended what this meant because I still wanted to work full-time, be an equal partner with my husband in maintaining our home, being a parent, loving our  grandchildren, engaging in worship at our church, and having fun with our friends. Here is what I wrote in my journal:

I don’t know how to judge a good day from a bad day – I don’t know how to live my life. If I don’t do anything at all, I have relatively low amounts of pain but being on the sofa all day isn’t a good day. When I go to work, socialize, and exercise I am emotionally happier but it leads to more pain the next day. (Journal, 01/04)

 I found a good book (there weren’t many published at that time) and I believed that I would soon have my life back on track if I did everything right but this was delusional. The journey that first year was very rocky, with small steps forward and many falls backwards. I was committed to doing everything right but it wasn’t easy knowing how to apply what I learned to my everyday life. It became evident that the only way I knew how to pace myself was stopping when I couldn’t go any further but this method also meant that I did a lot of things wrong and paid a really big price with pain and fatigue.

Along with the pain and fatigue, I experienced frustration, sadness and anger. None of the books I have read talked about the emotional toll this would have on me and how I could mentally cope with having a chronic illness. Learning to cope with the physical symptoms was difficult but coping with the emotional and mental strain was very daunting. Here is a journal entry from April, 2004:

The process of learning to live with chronic pain and being, if not medically fragile, functionally fragile has been more difficult than I had anticipated. It has challenged my thinking, emotions, and beliefs about relationships, my self-esteem and self-image.

Freud summed it up well that all of life is about loving and working, and I discovered that having a chronic illness does a number on both. Developing a chronic illness also impacts on our self-image and our self-esteem – it shook my sense of self to my very core. My degrees are in mental health so I had knowledge of grief and loss, how people cope and change, and had been a mental health therapist. I know how people heal from emotional trauma but I was looking for help in dealing with the ongoing emotional turmoil of facing a condition that is chronic and invisible. I felt very alone even though I was surrounded by family, friends, and colleagues who cared about me and were eager to help. Here is another journal from April, 2004:

Now that I have learned how to deal with the major symptoms most of the time, I find that I am still searching for how to cope with something that is chronic. I read the book on coping with chronic illness that Joyce gave me – it was interesting but didn’t tell me how I can cope. I have found that being sick has touched all my emotional nerves and coping involves resolving these issues. I wonder if anyone can tell someone else how to cope? I wonder if there are similarities to the grieving process due to chronic illness that everyone needs to go through? They say that the pain of grief is lonely because no one can go through it with you. Do I have to figure this out alone?

I did two things to help myself with the emotional pain and confusion I was experiencing; I made an appointment with a therapist with expertise in grief therapy (with the extra benefit of being a nurse) plus I started keeping a journal. The therapist helped me make sense of what I was experiencing by asking the right questions and helping me understand the medical side. My journal was originally intended for my daughters if they developed Fibromyalgia, but I soon recognized that it gave me a place to record the feelings and thoughts I was afraid to express to anyone else, to clarify the issues and feelings I was experiencing, and to record my journey so I could track my healing progress. Keeping the journal became a healing experience. As I write entries on this blog I will draw heavily on my journal because I believe my experiences haven’t been much different than most people’s. I hope that you, if you have been diagnosed with fibromyalgia or another invisible chronic illness, will be able to identify with some of my experiences, will find increased understanding of the psychological problems you are facing, discover ideas for coping, and receive encouragement so emotional healing can take place.

Has a chronic illness led to your feeling like your world has fallen apart?

Did you find that getting sick impacted on your sense of self?

I hope you will share your experiences.

Copyright © Patricia A. Bailey and I Miss Me, Too/imissmetoo.me 2012-2013.

Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. I encourage you to use excerpts but please be sure to give full and clear credit to Patricia A. Bailey and I Miss Me, Too. Please also give specific direction to the original content by provided this Blogs url at: http://imissmetoo.me