The Beginning of a Bad Situation
For nearly eighteen years of my life, I've lived with pain and fatigue. At the onset of the symptoms, I simply shrugged them off and kept pressing on. Pushing myself to tackle the endless demands of the day - working full-time, caring for a newborn and 2 year-old, maintaining a clean home, trying to keep a stressed marriage intact, and keeping in touch to some degree with extended family - was my priority. At the same time, these responsibilities also served as a good explanation for my physical distress.
After my youngest child turned one year old, I sought medical help. "Why has the pain and fatigue worsened instead of gotten better," I wondered. My primary care doctor, at that time ( I no longer go to the same doctor), ran tests and referred me to a rheumatologist.
And, the long process of finding what was going on began. Meanwhile, I was physically falling apart.
I was working in an "office" job and so many people thought, "Oh, that's an easy job." As with many things in life, the ease or difficulty of anything is determined by the specifics involved and not necessarily a general "this is hard" and "this is easy." Many things in life are just not accurately categorized that way.
The job I had was very demanding, though not the most demanding job at the agency where I worked. It involved endless networking (phones, meetings, trainings), home visits (conducting interviews, assessments, interactions, and thorough listening and communication), writing (the kind where you are wracking your brain to create a thorough, well-written, and accurate portrayal), and so much more. I knew if I stood a chance of one day being well, I needed to request a part-time position. This would help me figure out what was going on and take care of what I needed to do for my health so that I could be there for my family in the long-term.
Problem is: I was promised a part-time job share (shared caseload). What I got: A part-time position (same job) and no reduction in my caseload. I was now working part-time hours and responsible for a full-time caseload. On top of that, I was the coordinator of the entire program. My attempts to discuss this matter with my supervisor were futile. Supervisor changed - discussion still futile.
As months and then a year ticked by, my symptoms only worsened. The purpose of the change to part-time was for my health. That purpose was defeated. I was in a worse place than if I had continued working full-time. My family's finances had taken a dramatic and terrifying hit as well when I had to make the change to part-time. This was not a decision made without agony.
After all, my husband and I were working opposite shifts because we both had to work to meet our financial needs (and we were living small - in an inexpensive townhome in a rough part of town) and, yet, we could not afford child care for two small children. He was alone during the day with our children and I was alone at night with them.
At home, I was resting whenever I could. While my children played on the floor nearby, I rested on the couch interacting here and there. I was not the mom I was before. I was not the mom down on the floor interacting, encouraging with energy, and initiating lots of activities. I did do those things when I could push myself but not to the degree that I would have or could have done before. I mustered as much positive energy as I could.
I was anxious about not being the mom I wanted to be. I was depressed about not being the mom I wanted to be. I had to find a way to be the best mom I could be with the symptoms I had while continuing to seek medical help. And, each day I focused on being present in each given moment.
I did do things. I forced my body get moving to care for their needs: they were fed, bathed, clothed, read to, played with...just not in the same way or with the same energy that I once had. I could not play with them around the clock and I could not physically run but I could sit with them outside while they played.
And, I had to pace myself so that I would have energy later to make sure I could take care of them through bedtime. Even healthy parents deal with pushing through to bedtime...so, it was even more critical for me to pace or I would be completely unable to meet their needs. My perspective had to change from cannot do to focusing on what I could do (whenever possible because I still needed to recognize that there were limitations). And then, I needed to appreciate that I could still do this...still do that...on a day-to-day or a moment-to-moment basis.
Another big stressor was the expectations of extended family who did not understand that I was not lying on the couch to be lazy nor was I refusing to visit because I had an attitude. I was lacking energy, in significant pain, and fatigued beyond belief. Sure, everyone gets tired sometimes. Everyone has an ache or pain at some point in life. But does it last months or years or decades without relief? That's why it's called chronic pain. That's why it's called chronic fatigue.
These misunderstandings made me feel as though these people had no sense of who I was as a person. I felt deeply misunderstood. I was a caring, devoted, determined, ambitious person whose children and husband came first and whom I loved very much. I would do anything for them. The last thing I would is feign symptoms.
It was hurtful. Phrases like, "you have to try," "your kids need you," and "how are you going to survive financially" often in an accusatory tone (and, tone matters in most communication) was less than helpful. I needed emotional support not more distress. These comments sounded to me as follows:
* "you have to try" = "you aren't trying" when I was giving it all I had and then some
* "your kids need you" = "you're not there for your kids," and "you are putting yourself first" when I was making their "needs" a priority and their "wants" secondary to my needs
* "how are you going to survive financially" = "how can you be so irresponsible financially" when my body was giving me no choice.
It may help to know that I graduated cum laude with a Bachelor of Science degree in Mental Health, a large portion of my coursework was counseling which consists of a large amount of study and practice in interpersonal communication and psychology. It may also help to remember that my family had been filled in on my symptom journey for years and these remarks were still coming.
It took approximately five years, two or three attempts at physical therapy, and various x-rays and bloodwork to be diagnosed with fibromyalgia. In this process, I had tried everything - exercise (and I was active up until the time symptoms started so people who are overweight or obese and have fibromyalgia may not have been that way prior to developing it....for me, I became overweight after); natural health physician (elimination diet, stool sample, vitamins), high protein diet, etc. Although these suggestions may be helpful to some people, these tactics did not relieve the pain nor reduce the fatigue for me. So, the word "help" is riddled with varying definitions for those of us with chronic pain. When many people hear "help," they think that the problem is reduced to the point that sufferers can engage in active living or resume all of the day-to-day activities that make up their own days. "Help" to me means it may ease symptoms to some degree. I long for the day that "help" means elimination or dramatic reduction of symptoms.
For me, the reality is that the chronic pain and the fatigue is always a problem...it's just that some parts of the day may be more challenging than others; more seasons (weather and life) may be more challenging than others; and the symptoms may be worsened if I am pushing myself to rise to some difficulty in life. If I use the allotted amount of energy I have for a particular situation, I am depleted.
I also learned at some point that my thyroid was slow and that my original family dr had not advised me of this result. I'm not sure what effect, if any, early treatment for hypothyroidism would have had on my situation. I do wonder. I still struggle with maintaining a normal thyroid level.
If you are dealing with chronic pain, please know that you are not alone. While it is difficult to explain your health situation to many people, there are people out there who understand. Seek them out (maybe over the internet or by phone, depending on your level of pain). While you may be have days, weeks, or months where hope seems to be out of reach, please know that a positive change in your symptoms may be around the corner. And, while you may not be able to do all of the things you used to do, focus on what you can do in the moment. Maybe you cannot go grocery shopping today but maybe you can slowly get out of bed and get into the shower. Once showered, maybe you can get dressed. Once dressed, maybe you can do something else. If not, you can lay down. It is up to you to figure out for yourself what your body may or may not be able to do...you may be having a day where you really cannot get out of the bed.
As I'm wrapping this up, I have Dr. Phil on. He has a woman on the show who is on a lot of medications for various conditions which have not been explained, none of which are chronic pain at this point in the episode. Something was said about her possibly being addicted to being a sick person (maybe she is, I'm not sure). The episode is still on so I'm not sure what Dr. Phil's determination will be. For many of us, the suspicions of others may have been that we want to be sick. I do not want to be sick. I am quite sure that most people do not want to be sick.
It is important that each of us does our very best for those around us, particularly our families. And, let's hope our families understand when we are not doing, it is because we really cannot. For families of those with fibromyalgia, please do not assume that your loved one is like the person on Dr. Phil. Fibromyalgia is a very real condition with varying levels of pain and fatigue. One person with fibromyalgia may be able to continue working. Another may not be able to continue working. Like any condition, there are varying degrees.
After my youngest child turned one year old, I sought medical help. "Why has the pain and fatigue worsened instead of gotten better," I wondered. My primary care doctor, at that time ( I no longer go to the same doctor), ran tests and referred me to a rheumatologist.
And, the long process of finding what was going on began. Meanwhile, I was physically falling apart.
I was working in an "office" job and so many people thought, "Oh, that's an easy job." As with many things in life, the ease or difficulty of anything is determined by the specifics involved and not necessarily a general "this is hard" and "this is easy." Many things in life are just not accurately categorized that way.
The job I had was very demanding, though not the most demanding job at the agency where I worked. It involved endless networking (phones, meetings, trainings), home visits (conducting interviews, assessments, interactions, and thorough listening and communication), writing (the kind where you are wracking your brain to create a thorough, well-written, and accurate portrayal), and so much more. I knew if I stood a chance of one day being well, I needed to request a part-time position. This would help me figure out what was going on and take care of what I needed to do for my health so that I could be there for my family in the long-term.
Problem is: I was promised a part-time job share (shared caseload). What I got: A part-time position (same job) and no reduction in my caseload. I was now working part-time hours and responsible for a full-time caseload. On top of that, I was the coordinator of the entire program. My attempts to discuss this matter with my supervisor were futile. Supervisor changed - discussion still futile.
As months and then a year ticked by, my symptoms only worsened. The purpose of the change to part-time was for my health. That purpose was defeated. I was in a worse place than if I had continued working full-time. My family's finances had taken a dramatic and terrifying hit as well when I had to make the change to part-time. This was not a decision made without agony.
After all, my husband and I were working opposite shifts because we both had to work to meet our financial needs (and we were living small - in an inexpensive townhome in a rough part of town) and, yet, we could not afford child care for two small children. He was alone during the day with our children and I was alone at night with them.
At home, I was resting whenever I could. While my children played on the floor nearby, I rested on the couch interacting here and there. I was not the mom I was before. I was not the mom down on the floor interacting, encouraging with energy, and initiating lots of activities. I did do those things when I could push myself but not to the degree that I would have or could have done before. I mustered as much positive energy as I could.
I was anxious about not being the mom I wanted to be. I was depressed about not being the mom I wanted to be. I had to find a way to be the best mom I could be with the symptoms I had while continuing to seek medical help. And, each day I focused on being present in each given moment.
I did do things. I forced my body get moving to care for their needs: they were fed, bathed, clothed, read to, played with...just not in the same way or with the same energy that I once had. I could not play with them around the clock and I could not physically run but I could sit with them outside while they played.
And, I had to pace myself so that I would have energy later to make sure I could take care of them through bedtime. Even healthy parents deal with pushing through to bedtime...so, it was even more critical for me to pace or I would be completely unable to meet their needs. My perspective had to change from cannot do to focusing on what I could do (whenever possible because I still needed to recognize that there were limitations). And then, I needed to appreciate that I could still do this...still do that...on a day-to-day or a moment-to-moment basis.
Another big stressor was the expectations of extended family who did not understand that I was not lying on the couch to be lazy nor was I refusing to visit because I had an attitude. I was lacking energy, in significant pain, and fatigued beyond belief. Sure, everyone gets tired sometimes. Everyone has an ache or pain at some point in life. But does it last months or years or decades without relief? That's why it's called chronic pain. That's why it's called chronic fatigue.
These misunderstandings made me feel as though these people had no sense of who I was as a person. I felt deeply misunderstood. I was a caring, devoted, determined, ambitious person whose children and husband came first and whom I loved very much. I would do anything for them. The last thing I would is feign symptoms.
It was hurtful. Phrases like, "you have to try," "your kids need you," and "how are you going to survive financially" often in an accusatory tone (and, tone matters in most communication) was less than helpful. I needed emotional support not more distress. These comments sounded to me as follows:
* "you have to try" = "you aren't trying" when I was giving it all I had and then some
* "your kids need you" = "you're not there for your kids," and "you are putting yourself first" when I was making their "needs" a priority and their "wants" secondary to my needs
* "how are you going to survive financially" = "how can you be so irresponsible financially" when my body was giving me no choice.
It may help to know that I graduated cum laude with a Bachelor of Science degree in Mental Health, a large portion of my coursework was counseling which consists of a large amount of study and practice in interpersonal communication and psychology. It may also help to remember that my family had been filled in on my symptom journey for years and these remarks were still coming.
It took approximately five years, two or three attempts at physical therapy, and various x-rays and bloodwork to be diagnosed with fibromyalgia. In this process, I had tried everything - exercise (and I was active up until the time symptoms started so people who are overweight or obese and have fibromyalgia may not have been that way prior to developing it....for me, I became overweight after); natural health physician (elimination diet, stool sample, vitamins), high protein diet, etc. Although these suggestions may be helpful to some people, these tactics did not relieve the pain nor reduce the fatigue for me. So, the word "help" is riddled with varying definitions for those of us with chronic pain. When many people hear "help," they think that the problem is reduced to the point that sufferers can engage in active living or resume all of the day-to-day activities that make up their own days. "Help" to me means it may ease symptoms to some degree. I long for the day that "help" means elimination or dramatic reduction of symptoms.
For me, the reality is that the chronic pain and the fatigue is always a problem...it's just that some parts of the day may be more challenging than others; more seasons (weather and life) may be more challenging than others; and the symptoms may be worsened if I am pushing myself to rise to some difficulty in life. If I use the allotted amount of energy I have for a particular situation, I am depleted.
I also learned at some point that my thyroid was slow and that my original family dr had not advised me of this result. I'm not sure what effect, if any, early treatment for hypothyroidism would have had on my situation. I do wonder. I still struggle with maintaining a normal thyroid level.
If you are dealing with chronic pain, please know that you are not alone. While it is difficult to explain your health situation to many people, there are people out there who understand. Seek them out (maybe over the internet or by phone, depending on your level of pain). While you may be have days, weeks, or months where hope seems to be out of reach, please know that a positive change in your symptoms may be around the corner. And, while you may not be able to do all of the things you used to do, focus on what you can do in the moment. Maybe you cannot go grocery shopping today but maybe you can slowly get out of bed and get into the shower. Once showered, maybe you can get dressed. Once dressed, maybe you can do something else. If not, you can lay down. It is up to you to figure out for yourself what your body may or may not be able to do...you may be having a day where you really cannot get out of the bed.
As I'm wrapping this up, I have Dr. Phil on. He has a woman on the show who is on a lot of medications for various conditions which have not been explained, none of which are chronic pain at this point in the episode. Something was said about her possibly being addicted to being a sick person (maybe she is, I'm not sure). The episode is still on so I'm not sure what Dr. Phil's determination will be. For many of us, the suspicions of others may have been that we want to be sick. I do not want to be sick. I am quite sure that most people do not want to be sick.
It is important that each of us does our very best for those around us, particularly our families. And, let's hope our families understand when we are not doing, it is because we really cannot. For families of those with fibromyalgia, please do not assume that your loved one is like the person on Dr. Phil. Fibromyalgia is a very real condition with varying levels of pain and fatigue. One person with fibromyalgia may be able to continue working. Another may not be able to continue working. Like any condition, there are varying degrees.
