Sharing the Big “F’s”: Frustration & Feelings

 I started keeping a journal when I was diagnosed with FM 8 years ago. I am now using those journals to identify the issues that I faced, some of the lessons I learned, and to share my journey of coping and healing.

During that first year I felt very lonely because I didn’t know how to talk about my frustrations and feelings with family, friends, and the people I worked with. Maybe I was afraid to talk about them. Almost everyone I knew was aware that I was diagnosed with fibromyalgia because they had been very worried when I got so sick so quickly. Our local newspaper also ran a feature article on someone with FM right after I returned from Mayo with a diagnosis. Because the people around me cared and were informed, they would ask me how I was doing and usually I would say fine and changed the subject. It just didn’t seem appropriate to say things like: I’m angry because I don’t have the energy to get my work done; I’m scared that I won’t get my life back; or, I’m so frigging tired of being tired (or hurting, or crying).

Sometimes I would talk to people about how I felt when it seemed appropriate and I thought I could trust them. Sometimes these people had their own health problems and frustrations. Sometimes my experience became a shared experience that brought us closer together and we ended up having a really good laugh about our situations. But sometimes I was afraid to talk about it and I wanted to avoid people – I just went home and hid. I was looking for a way to let people know how hard life was so I didn’t feel so lonely but I didn’t always know how to do it. If I said too much, I was afraid that I would be seen as a whiner and complainer and it would make people want to avoid me. Deep down I felt weak and defective and didn’t want people to see that part of me. What I learned: If I don’t share my frustrations and feelings, I will be lonely. I will become even lonelier if I talk about my frustrations and feelings with the wrong people, at the wrong time, and too much.

I discovered through the grapevine at work that there were other employees who were diagnosed with FM. At first I thought that we could support each other but I soon discovered that they didn’t seem to want to talk about it either. Maybe they felt like me; living with chronic pain and fatigue while trying to get my work done took more endurance than I had. The few times we did talk about it, it felt like they also needed to pretend that everything was “normal” so they could make it through the day. I suppose we could have shared ideas for what helped with symptoms, but this made for a very short conversation because there didn’t seem to be many options and what worked for one didn’t seem to help the other. I wanted to know what others were experiencing but talking about how miserable we were got boring really fast. Besides, I preferred to do my crying in private.

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. Excerpts and links may be used, provided that full and clear credit is given to Patricia A. Bailey and I Miss Me, Too with appropriate and specific direction to the original content at: http://imissmetoo.me 

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

Losing Control of My Life

When we get sick we need to shift our attention, and our energy, from our normal activities to getting well. I will be sharing information and my thoughts on the sick role in future posts under the category In Sickness and In Health.

In that first year I had a really hard time getting my mind around the fact that chronic meant forever, maybe because I was so afraid of what forever in pain meant for my work and play. I began to understand, but really didn’t want to know, that it meant I was never going to get well, that I would have some level pain and would need to work to maintain my energy – and I probably would never get back the life I had known. Although I had a strong desire to continue working full-time and to have a life outside of work, being sick seemed to become who I was and what I did. I had lost control of my life to sickness.

My life became weekly doctor appointments to adjust medication dosages, discuss ways to treat new symptoms, or for acupuncture for pain. Life was also consumed between appointments by doing things to get the most from my time with my doctor, like creating charts of sleep quality, or pain levels, or amount of fatigue. I was thinking about symptoms all the time which meant that pain and fatigue were controlling my life. Don’t misread me – I’m not criticizing what I was doing. This is what I needed to do and because of it I was slowly getting better. I wasn’t getting the life I had known back – but I was getting control of symptoms and I was hanging onto a sort-of life.

For a long time I fought hard to get my old life back by doing everything right but the progress was usually so slow that I wasn’t able to see it. Maybe I couldn’t see it because I was looking for evidence of my old life and wasn’t willing to recognize anything different. Sometimes I just got tired of fighting and then I would rebel. You have heard of the fight or flight response when we are in danger? Well I saw losing my life and my sense of self as a huge danger and it didn’t seem like fighting for health was working. My rebellion would involve something like a “flight away” from it.

In my anger, I backed off from what I had been doing. I tried to pretend that I wasn’t experiencing pain and fatigue. I tried to pretend that pain wasn’t controlling my life. I tried to tell myself that most of the time the pain wasn’t strong enough to make a difference in my life, but it was always there. I tried to convince myself that the pain didn’t keep me from doing the things I wanted to do, but the pain did interfere because it tired me quickly. And I discovered that pain was controlling my life, even if I didn’t want it to or told myself that it wasn’t. The pain was an ever present part of my life, even if it wasn’t intense or always in the same place. And the pain was so unpredictable. I continued to live with the frustration that there didn’t seem to be much I could do to make it better or know what made it worse.

These funks when I would try to flee from having FM didn’t last long – probably because they were less productive than facing the illness head-on. After stomping my feet and having my temper tantrums I would settle down to figuring out what I needed to do to control my symptoms and continue to focus on living my life. And believe me, being sick never was at the top of my fun-in-life list – but it was there because that is what having a chronic illness means.

We can have control of our lives and maybe sometimes even control some of our symptoms of our chronic illness. I just had to figure out how.

Have you struggled with feeling you no longer have control of your life? Please comment.

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