I’ve never really had a handle on how many people read this report. Perhaps more people read it when I was force-feeding their email boxes with it. I joke a lot in this column about our experiences, and it might appear, to the reader who does not really know us, that we lead a relatively active and normal life. Nothing could be further from the truth. In this report, I rarely make more than a passing reference to Shauna’s illnesses, but perhaps through this week’s entry, I can explain once and for all why Shauna and I lead a relatively cloistered life. A few weeks ago, someone we consider to be a close friend admonished Shauna because, in her opinion, we had elected to attend some event when we had so often declined her invitations. How could Shauna summon the energy to attend this or that event, but so often seemingly push her friends away? This week’s report is for anyone who knows a caregiver or a sufferer of chronic illness. It is from this caregiver’s perspective, and it may perhaps shed some light on the bizarre life we lead. Bear with me, and I promise to be characteristically inane next week.
Shauna suffers from several debilitating illnesses. She has Crohn’s Disease, Fibromyalgia, and a chronic pain condition known today as CMP (Chronic Myofacial Pain), which is sometimes associated with Fibromyalgia. Many people know someone with FMS (Fibromyalgia Syndrome), and some of those sufferers are doing better than others. That is because FMS comes in many forms, and each case is unique. Most sufferers complain of muscle pain, lack of sleep, a lack of energy, etc., but in its more severe form, FMS can be crippling. Some sufferers complain of chronic severe pain, and sometimes that pain is so acute that it makes physical activity extremely difficult.
FMS and CMP are better understood now than they were a decade ago. When Shauna was first diagnosed, almost thirteen years ago, little was known about those illnesses, and many in the medical community flatly denied that they existed. Imagine being told that the pain you feel is all in your head, and that all you need to do is “get on with your life and to quit complaining so much”. Diagnosis and treatment, including pain management, are far more effective today than they used to be, but these diseases, and they are diseases, are still enigmatic, and there is still no “magic bullet” to cure them. The only way I can explain it -- and this is a vast oversimplification -- is that it appears as if something within the sufferer’s brain chemistry goes out of whack, often the result of some physical or emotional trauma, and the “computer chip” in the brain, which regulates everything from sleep, to light and temperature sensitivity, to how much pain a person feels, goes haywire. Where the brain is concerned, there are many mysteries still to be solved. Some patients who suffer from these chronic pain conditions complain of full body migraines. For any of you who have suffered a genuine migraine headache, you will understand that this is debilitating pain. Shauna is, unfortunately, at the severe end of the FMS/CMP spectrum. She is never without pain, and when she experiences a “flare”, when her pain level spikes, it fairly well shuts down any plans we have made.
Living with chronic, sometimes debilitating pain is complicated and challenging. From the standpoint of the caregiver, it is hard because I never know from day to day what we will and won’t be able to do. As well, much of the legwork of the relationship (the errands, the shopping, the “heavy lifting”) falls upon me. As a caregiver, I constantly seek the balance between Shauna’s needs, and my needs. Am I being selfish, or am I merely protecting myself? Sometimes, it can all be quite overwhelming. From the sufferer’s point of view, the challenges are much more complicated. The illness is psychological warfare. On top of constantly feeling like she has the flu, including the attendant aches and pains which sometimes escalate to full blown excruciating pain, Shauna is often disappointed in herself, and she lives with the constant, nagging guilt that she is a burden on the ones she loves the most. Sufferers miss more important events than they attend, and they live with the constant knowledge that almost everything about the active life they once led has been stripped away from them. One psychiatrist talking about chronic illness said that one of the stages of the illness is the mourning process: the sufferer mourns the loss of his or her health. I could go on and on about the challenges we face, but I realize everyone has problems. Ours are worse than some, not as bad as others. I honestly can’t complain, because I genuinely feel that I have found my soul mate in life. Whatever adversity is attached to this relationship is, in my opinion, worth it. I also firmly believe that we were all put on this earth to learn, and there can be no more profound learning experience than chronic illness. If you haven’t already, many of you will face this lesson someday. Thankfully, for most of you, it won’t be until you are old.
In the past thirteen years, we have missed a lot of weddings, funerals, concerts, parties, flights, holidays, and sports events, etc. Often, we will be on our way out the door when we must cancel our plans. We don’t fly anymore, partly because we have missed so many flights. We rarely go to the movies, because Shauna has difficulty concentrating on a film for two hours straight, so distracting is her pain. Instead, we watch videos at home, where we can stop and rewind. Illness is by its nature isolating. We don’t like that; we both used to be very social people. These days, social events are frequently overwhelming, and we often decline parties we would like to attend. The reason we are building our new home away from the city is that Shauna does much better in a clean air environment, away from the frenetic pace of the big city. We hope that one day, we will once again be able to entertain. Shauna puts on a pretty good act, and if you spoke to her on the phone, you’d think she was fine, but almost any social activity is exhausting for her. She has a limited bank of energy, and one night out can set us back a week. Add a doctor’s appointment or two to the equation and you have the makings of a meltdown.
We are managing our life as well as we can, and our sense of humor and love of music keep us sane, most of the time. Everybody faces adversity, and we have become acutely aware of this fact, perhaps because of our circumstances. If you know a friend or family member who suffers from chronic pain or is otherwise seriously ill, try not to judge them too harshly, and do not burden them with your disapproval or disappointment. Instead, try to show that you understand. The attempt alone will be appreciated. However strange our behavior may seem, there is often a pretty good reason. We are painfully aware of everything we miss, and every one we disappoint. Believe me. Thanks for reading.
Shauna suffers from several debilitating illnesses. She has Crohn’s Disease, Fibromyalgia, and a chronic pain condition known today as CMP (Chronic Myofacial Pain), which is sometimes associated with Fibromyalgia. Many people know someone with FMS (Fibromyalgia Syndrome), and some of those sufferers are doing better than others. That is because FMS comes in many forms, and each case is unique. Most sufferers complain of muscle pain, lack of sleep, a lack of energy, etc., but in its more severe form, FMS can be crippling. Some sufferers complain of chronic severe pain, and sometimes that pain is so acute that it makes physical activity extremely difficult.
FMS and CMP are better understood now than they were a decade ago. When Shauna was first diagnosed, almost thirteen years ago, little was known about those illnesses, and many in the medical community flatly denied that they existed. Imagine being told that the pain you feel is all in your head, and that all you need to do is “get on with your life and to quit complaining so much”. Diagnosis and treatment, including pain management, are far more effective today than they used to be, but these diseases, and they are diseases, are still enigmatic, and there is still no “magic bullet” to cure them. The only way I can explain it -- and this is a vast oversimplification -- is that it appears as if something within the sufferer’s brain chemistry goes out of whack, often the result of some physical or emotional trauma, and the “computer chip” in the brain, which regulates everything from sleep, to light and temperature sensitivity, to how much pain a person feels, goes haywire. Where the brain is concerned, there are many mysteries still to be solved. Some patients who suffer from these chronic pain conditions complain of full body migraines. For any of you who have suffered a genuine migraine headache, you will understand that this is debilitating pain. Shauna is, unfortunately, at the severe end of the FMS/CMP spectrum. She is never without pain, and when she experiences a “flare”, when her pain level spikes, it fairly well shuts down any plans we have made.
Living with chronic, sometimes debilitating pain is complicated and challenging. From the standpoint of the caregiver, it is hard because I never know from day to day what we will and won’t be able to do. As well, much of the legwork of the relationship (the errands, the shopping, the “heavy lifting”) falls upon me. As a caregiver, I constantly seek the balance between Shauna’s needs, and my needs. Am I being selfish, or am I merely protecting myself? Sometimes, it can all be quite overwhelming. From the sufferer’s point of view, the challenges are much more complicated. The illness is psychological warfare. On top of constantly feeling like she has the flu, including the attendant aches and pains which sometimes escalate to full blown excruciating pain, Shauna is often disappointed in herself, and she lives with the constant, nagging guilt that she is a burden on the ones she loves the most. Sufferers miss more important events than they attend, and they live with the constant knowledge that almost everything about the active life they once led has been stripped away from them. One psychiatrist talking about chronic illness said that one of the stages of the illness is the mourning process: the sufferer mourns the loss of his or her health. I could go on and on about the challenges we face, but I realize everyone has problems. Ours are worse than some, not as bad as others. I honestly can’t complain, because I genuinely feel that I have found my soul mate in life. Whatever adversity is attached to this relationship is, in my opinion, worth it. I also firmly believe that we were all put on this earth to learn, and there can be no more profound learning experience than chronic illness. If you haven’t already, many of you will face this lesson someday. Thankfully, for most of you, it won’t be until you are old.
In the past thirteen years, we have missed a lot of weddings, funerals, concerts, parties, flights, holidays, and sports events, etc. Often, we will be on our way out the door when we must cancel our plans. We don’t fly anymore, partly because we have missed so many flights. We rarely go to the movies, because Shauna has difficulty concentrating on a film for two hours straight, so distracting is her pain. Instead, we watch videos at home, where we can stop and rewind. Illness is by its nature isolating. We don’t like that; we both used to be very social people. These days, social events are frequently overwhelming, and we often decline parties we would like to attend. The reason we are building our new home away from the city is that Shauna does much better in a clean air environment, away from the frenetic pace of the big city. We hope that one day, we will once again be able to entertain. Shauna puts on a pretty good act, and if you spoke to her on the phone, you’d think she was fine, but almost any social activity is exhausting for her. She has a limited bank of energy, and one night out can set us back a week. Add a doctor’s appointment or two to the equation and you have the makings of a meltdown.
We are managing our life as well as we can, and our sense of humor and love of music keep us sane, most of the time. Everybody faces adversity, and we have become acutely aware of this fact, perhaps because of our circumstances. If you know a friend or family member who suffers from chronic pain or is otherwise seriously ill, try not to judge them too harshly, and do not burden them with your disapproval or disappointment. Instead, try to show that you understand. The attempt alone will be appreciated. However strange our behavior may seem, there is often a pretty good reason. We are painfully aware of everything we miss, and every one we disappoint. Believe me. Thanks for reading.
-Written by Jamie Oppenheimer c2007 ALL RIGHTS RESERVED
2 comments:
Described well, Jamie.
Your cyber friend in the same mess.
Ron P
I've been diagnosed with FMS and RA since 98, and have the underlying CMP syndrome as well. My husband and I know exactly what you are going through. FMS is so unpredictable and each case is individual that meds that works for one person dosen't even touch it for another. I was very fortunate and find a pain doctor after a move in 2002 who believed in me, my pain and my life.
The two major things for us was an entourage who were willing to work with us (yes not just me, but the both of us) and for me to obtain delta sleep. I could then get off the pain meds and go back to a 20 h/week job, and not miss _everything_ on my path.
I wish you the best, as many of your notes have matched my life as well. don't forget to allow yourself - either of you - to be human, it's ok not to be able to do everything everyone thinks you should.
A chronic illness is a huge toll on any relationsship; your posting put words on many things my husband and I have tried to explain. Just don't give up and let a doctor tell you there's nothing more to do and nowhere else to go. No-one has the right to put a lesser value on your life and your life quality.
Sincerely,
Lilly
Post a Comment