Chronic Inflammatory Response Syndrome

Join the Conversation on
Chronic Inflammatory Response Syndrome
814 people
0 stories
96 posts
  • About Chronic Inflammatory Response Syndrome
  • Explore Our Newsletters
  • What's New in Chronic Inflammatory Response Syndrome
    All
    Stories
    Posts
    Videos
    Latest
    Trending
    Post

    Illness and Acceptance

    I recently had an important revelation.

    In the five years since first experiencing chronic illness, I have never actually accepted its presence in my life.

    You see, as somewhat of a "spiritual" (though I hesitate to use that overused term) person I have grown to view the world in a very fate-based way. I believe that the unfolding events of our life are all deeply meaningful and I appreciate that our hardships in life all happen for a reason.

    However, I have never been able to extend this line of thinking to my health. In my mind, my illness was the golden exception to this worldview- God's terrible mistake.

    Whenever I have been in the middle of a particularly bad flare-up, I find myself fixated on one stressful line of thought. This should NOT be happening.

    When I reflect back on periods when illness brought my life to a halt, I would feel tension and stress. I would think of all the wasted time, the days spent in bed, and the unmet goals and would despair. The existence of these periods felt wrong, painfully wrong.

    Why then, has it been such a challenge to accept my path through life, warts and bumps and all?

    Why has it felt so impossible to accept this part of myself? To come to peace with the fact that I have lived an atypical path of alternating illness and wellness?

    I can think of two main reasons.

    The first has to do with identity. As someone who has always identified as a motivated high achiever, chronic illness has come into direct conflict with my self-perception.

    Stripping away my ability to meet my goals at times, (financial, career, etc) has felt like a direct challenge to my true self, my achieving self. I have perceived it as an obstacle whose purpose is sole to knock me off my correct path in life.

    But of course, whether I like it or not, my illness has been a part of my true journey on this earth. Outside of my judgments of it, it simply is part of my life, whether I like it or not. Therefore It is inherently part of my true path in life, simply because it ion my path.

    The second reason it has been so hard to accept my illness is that I have often perceived myself through the eyes of those around me.

    Very rarely in my life have people been able to validate this path for me- and who could blame them, for how could you understand such a foreign experience as chronic fatigue without firsthand experience of it?

    For a long time, have been unable to validate myself in the face of being unacknowledged or dismissed by others. This has led to a bizarre state of mind whereby others' denial of my reality has ultimately caused me to doubt and deny my reality myself.

    Due to the pain of being misunderstood or labeled a hypochondriac, my illness has become something of a hushed secret. I have avoided talking about it with those around me, I have hidden my symptoms and gone absent from my relationships during my flare-ups. In this way, by hiding and minimizing it from others, I have hidden and denied my reality to myself.

    Regardless of the reasons for resisting my illness, I finally felt a sense of peace when I actually decided to accept it as a part of my journey.

    No longer does my health history need to be a shameful secret, something I avoid speaking about for fear of making others uncomfortable.

    It is a part of my life path, and therefore a part of my purpose. And I can incorporate this purpose in all kinds of small ways, like bringing more compassion to others with health issues. Or choosing to write about my experiences openly and honestly. I could even see myself moving into a role within the health field one day, with the expertise of someone who has walked this path for many years.

    My illness does not have to be a destroyer of opportunities. It can also be the bringer of them.

    #CFS #Fatigue #CIRS #autoimmune

    11 reactions 4 comments
    Post

    Illness and Acceptance

    I recently had an important revelation.

    In the five years since first experiencing chronic illness, I have never actually accepted its presence in my life.

    You see, as somewhat of a "spiritual" (though I hesitate to use that overused term) person I have grown to view the world in a very fate-based way. I believe that the unfolding events of our life are all deeply meaningful and I appreciate that our hardships in life all happen for a reason.

    However, I have never been able to extend this line of thinking to my health. In my mind, my illness was the golden exception to this worldview- God's terrible mistake.

    Whenever I have been in the middle of a particularly bad flare-up, I find myself fixated on one stressful line of thought. This should NOT be happening.

    When I reflect back on periods when illness brought my life to a halt, I would feel tension and stress. I would think of all the wasted time, the days spent in bed, and the unmet goals and would despair. The existence of these periods felt wrong, painfully wrong.

    Why then, has it been such a challenge to accept my path through life, warts and bumps and all?

    Why has it felt so impossible to accept this part of myself? To come to peace with the fact that I have lived an atypical path of alternating illness and wellness?

    I can think of two main reasons.

    The first has to do with identity. As someone who has always identified as a motivated high achiever, chronic illness has come into direct conflict with my self-perception.

    Stripping away my ability to meet my goals at times, (financial, career, etc) has felt like a direct challenge to my true self, my achieving self. I have perceived it as an obstacle whose purpose is sole to knock me off my correct path in life.

    But of course, whether I like it or not, my illness has been a part of my true journey on this earth. Outside of my judgments of it, it simply is part of my life, whether I like it or not. Therefore It is inherently part of my true path in life, simply because it ion my path.

    The second reason it has been so hard to accept my illness is that I have often perceived myself through the eyes of those around me.

    Very rarely in my life have people been able to validate this path for me- and who could blame them, for how could you understand such a foreign experience as chronic fatigue without firsthand experience of it?

    For a long time, have been unable to validate myself in the face of being unacknowledged or dismissed by others. This has led to a bizarre state of mind whereby others' denial of my reality has ultimately caused me to doubt and deny my reality myself.

    Due to the pain of being misunderstood or labeled a hypochondriac, my illness has become something of a hushed secret. I have avoided talking about it with those around me, I have hidden my symptoms and gone absent from my relationships during my flare-ups. In this way, by hiding and minimizing it from others, I have hidden and denied my reality to myself.

    Regardless of the reasons for resisting my illness, I finally felt a sense of peace when I actually decided to accept it as a part of my journey.

    No longer does my health history need to be a shameful secret, something I avoid speaking about for fear of making others uncomfortable.

    It is a part of my life path, and therefore a part of my purpose. And I can incorporate this purpose in all kinds of small ways, like bringing more compassion to others with health issues. Or choosing to write about my experiences openly and honestly. I could even see myself moving into a role within the health field one day, with the expertise of someone who has walked this path for many years.

    My illness does not have to be a destroyer of opportunities. It can also be the bringer of them.

    #CFS #Fatigue #CIRS #autoimmune

    11 reactions 4 comments
    Post

    I Am Allergic to Buildings

    The first time I became overwhelmingly sick from a building, I was 20 years old. I had just moved into my own little house with a friend, and I was excited to clean the place up. It was a cute house but had not been taken care of properly. A rather musty smell prompted me to get to work and clean, so each day I set myself to work scrubbing off all the black patches which covered the entire walls of the bathroom, laundry and toilet.

    Little did I know, I was about to experience a massive collapse in my health and my first experience with Chronic Inflammatory Response Syndrome, a serious illness that makes sufferers' bodies react severely to microscopic particles in their own homes.

    CIRS, or Chronic Inflammatory Response Syndrome, is a condition in which the body becomes hyper-vulnerable to mould spores. In small quantities, mould spores are everywhere and are relatively harmless. However, they can build up in indoor environments which become very damp, due to structural issues such as water leaks. This is when people begin to notice the usual black spots on the ceiling or a musty odour in a particular room.

    For the average person, patches of mould are unlikely to cause any noticeable problems. Their bodies are able to recognise and remove the inhaled toxins from the mould spores, and they can live and work in spaces with mould and remain unaffected.

    However, for people with CIRS, the story is very different. Their bodies launch an all-around inflammatory attack when they are in the presence of mould spores and do not properly remove them. This can lead to debilitating physical and mental illness. Because mould-related symptomology is only just beginning to make its way into the mainstream, many people suffer for months to years before they figure out the root cause between their health collapse and their physical environment.

    For myself, the indicators that I was experiencing this mould-related illness were a slow descent into deep fatigue and depression. Over a period of a few weeks since moving into my new house, I went from a happy, energetic and exercising 20-year-old to someone who was constantly tired, and too asthmatic to exercise. I felt pervasive emotional dread and I started to have strange conditions break out such as an itchy, painful rash all over my body and a strange metallic taste in the back of my mouth. My cognition became poor and I struggled to find joy in the activities that used to do.

    Thankfully, I moved out and was able to recover with the help of a functional doctor who understands the condition well. However my extreme sensitivity to mould has remained, and if anything, increased over the years.

    These days, I can tell immediately when I am entering a house with a mould problem. I feel foggy in the head, my breathing starts to seize up and become tight, and I notice an overwhelming lack of any energy. However, outside the physical effects, by far the worst impacts are the mental distress I experience as a result of my body’s reaction to mould. I experience severe depressive thoughts and become convinced that my life is on the verge of catastrophe. My mind becomes too foggy to draw or write. If I spend a considerable amount of time in the affected buildings, it can take me days to recover and feel human again.

    I would say around one-third to a half of the houses in the UK, where I currently live, seem to trigger this reaction, and so renting homes and visiting friends has become very complicated.

    Overall, I consider myself one of the lucky ones when it comes to this condition. Many people do not find out about the cause of their illness and become bedridden for years before the answer becomes apparent.

    I do feel positive about one day being able to cure this condition. Certain experts in the field hypothesize that early childhood stressors cause the immune system to go over-drive in CIRS, and propose that certain nervous system calming tools and meditations might be able to reverse the condition.

    I certainly hope so! If there is anything I believe in, it is that the body has the innate desire to heal itself.

    #CIRS #Mold toxicity #Depression

    9 reactions 2 comments
    Post

    I Am Allergic to Buildings

    The first time I became overwhelmingly sick from a building, I was 20 years old. I had just moved into my own little house with a friend, and I was excited to clean the place up. It was a cute house but had not been taken care of properly. A rather musty smell prompted me to get to work and clean, so each day I set myself to work scrubbing off all the black patches which covered the entire walls of the bathroom, laundry and toilet.

    Little did I know, I was about to experience a massive collapse in my health and my first experience with Chronic Inflammatory Response Syndrome, a serious illness that makes sufferers' bodies react severely to microscopic particles in their own homes.

    CIRS, or Chronic Inflammatory Response Syndrome, is a condition in which the body becomes hyper-vulnerable to mould spores. In small quantities, mould spores are everywhere and are relatively harmless. However, they can build up in indoor environments which become very damp, due to structural issues such as water leaks. This is when people begin to notice the usual black spots on the ceiling or a musty odour in a particular room.

    For the average person, patches of mould are unlikely to cause any noticeable problems. Their bodies are able to recognise and remove the inhaled toxins from the mould spores, and they can live and work in spaces with mould and remain unaffected.

    However, for people with CIRS, the story is very different. Their bodies launch an all-around inflammatory attack when they are in the presence of mould spores and do not properly remove them. This can lead to debilitating physical and mental illness. Because mould-related symptomology is only just beginning to make its way into the mainstream, many people suffer for months to years before they figure out the root cause between their health collapse and their physical environment.

    For myself, the indicators that I was experiencing this mould-related illness were a slow descent into deep fatigue and depression. Over a period of a few weeks since moving into my new house, I went from a happy, energetic and exercising 20-year-old to someone who was constantly tired, and too asthmatic to exercise. I felt pervasive emotional dread and I started to have strange conditions break out such as an itchy, painful rash all over my body and a strange metallic taste in the back of my mouth. My cognition became poor and I struggled to find joy in the activities that used to do.

    Thankfully, I moved out and was able to recover with the help of a functional doctor who understands the condition well. However my extreme sensitivity to mould has remained, and if anything, increased over the years.

    These days, I can tell immediately when I am entering a house with a mould problem. I feel foggy in the head, my breathing starts to seize up and become tight, and I notice an overwhelming lack of any energy. However, outside the physical effects, by far the worst impacts are the mental distress I experience as a result of my body’s reaction to mould. I experience severe depressive thoughts and become convinced that my life is on the verge of catastrophe. My mind becomes too foggy to draw or write. If I spend a considerable amount of time in the affected buildings, it can take me days to recover and feel human again.

    I would say around one-third to a half of the houses in the UK, where I currently live, seem to trigger this reaction, and so renting homes and visiting friends has become very complicated.

    Overall, I consider myself one of the lucky ones when it comes to this condition. Many people do not find out about the cause of their illness and become bedridden for years before the answer becomes apparent.

    I do feel positive about one day being able to cure this condition. Certain experts in the field hypothesize that early childhood stressors cause the immune system to go over-drive in CIRS, and propose that certain nervous system calming tools and meditations might be able to reverse the condition.

    I certainly hope so! If there is anything I believe in, it is that the body has the innate desire to heal itself.

    #CIRS #Mold toxicity #Depression

    9 reactions 2 comments
    Post
    See full photo

    The Comparison Trap

    It sometimes seems that God was in a macabre mood when he shuffled the card deck of our lives.

    Being both an ambitious person and a chronically ill person can be a torturous combination. When we are well, or less ill, we are freed from our physical confines. Our minds race to all of the goals and dreams that we long to finally accomplish - the life we have always wanted comes within reach as we feel called to take action toward our goals.

    When our illness returns we crash back down to reality. What seemed so possible and so real, has now disappeared far off into the distance, barely visible. We exist in a lurch between hope and despair, not quite able to trust the trajectory of our own lives.

    Worst of all, it is perhaps the comparisons with well people that make us feel our worst. We Humans are experts in comparing ourselves, and the rise of social media serves only to exacerbate this problem. We cruelly cross-analyze every aspect of our lives with those around us- compare our financial situations, our outward appearances, and our major life milestones.

    For the healthiest of people, this kind of behavior is already unhelpful; however when someone with a chronic illness falls into this trap it is especially problematic.

    In comparing ourselves to healthy people, we end up creating an entirely unjust contest in our minds; discounting the time and energy that we have lost to our ill health. We ignore the cumulative effect of periods of severe unwellness that may have disrupted our routines for weeks or months.

    We ignore the immense advantage gifted to someone able to focus on their goals without ever having to worry whether or not their body would be up to the task.

    We ignore the financial effects of expensive treatments or long periods of non-work.

    Quite simply, the healthy person and the chronically ill one are both human, and yet they inhabit vastly different worlds. Dealing with the burdens that our illnesses give us already presents us with enough challenges without the added torment of coming up inferior to someone who has had a completely different set of life experiences.

    It is the least we can do to make a point not to compare our life trajectories with those people who have not experienced chronic illness. We have suffered enough.

    #CFS #ChronicFatigue #CIRS #autoimmune #Mold toxicity

    8 reactions
    Post
    See full photo

    The Comparison Trap

    It sometimes seems that God was in a macabre mood when he shuffled the card deck of our lives.

    Being both an ambitious person and a chronically ill person can be a torturous combination. When we are well, or less ill, we are freed from our physical confines. Our minds race to all of the goals and dreams that we long to finally accomplish - the life we have always wanted comes within reach as we feel called to take action toward our goals.

    When our illness returns we crash back down to reality. What seemed so possible and so real, has now disappeared far off into the distance, barely visible. We exist in a lurch between hope and despair, not quite able to trust the trajectory of our own lives.

    Worst of all, it is perhaps the comparisons with well people that make us feel our worst. We Humans are experts in comparing ourselves, and the rise of social media serves only to exacerbate this problem. We cruelly cross-analyze every aspect of our lives with those around us- compare our financial situations, our outward appearances, and our major life milestones.

    For the healthiest of people, this kind of behavior is already unhelpful; however when someone with a chronic illness falls into this trap it is especially problematic.

    In comparing ourselves to healthy people, we end up creating an entirely unjust contest in our minds; discounting the time and energy that we have lost to our ill health. We ignore the cumulative effect of periods of severe unwellness that may have disrupted our routines for weeks or months.

    We ignore the immense advantage gifted to someone able to focus on their goals without ever having to worry whether or not their body would be up to the task.

    We ignore the financial effects of expensive treatments or long periods of non-work.

    Quite simply, the healthy person and the chronically ill one are both human, and yet they inhabit vastly different worlds. Dealing with the burdens that our illnesses give us already presents us with enough challenges without the added torment of coming up inferior to someone who has had a completely different set of life experiences.

    It is the least we can do to make a point not to compare our life trajectories with those people who have not experienced chronic illness. We have suffered enough.

    #CFS #ChronicFatigue #CIRS #autoimmune #Mold toxicity

    8 reactions
    Post

    Pain Mangement?

    Hi! I have recently been diagnosed with EDS and am trying to learn more about management techniques so I can incorporate them into my life. I am fairly familiar with the chronically ill life. I also have Hashimoto's Thyroiditis, IBS, Chronic Inflammatory Response Syndrome (CIRS) and a prior mild TBI.
    But lately my knee and hip pain has flared significantly. My knees are visibly swollen. The pain makes me not want to move but also want to not stop moving at the same time. I've tried epsom salt baths, ice, magnesium, etc. I try to avoid taking NSAIDs but will if I have to to function. Anyone got any recommendations? I know long term things like exercise and strength training and physical therapy will help but I could use some more immediate relief.

    7 reactions 7 comments
    Post

    I'm new here!

    Hi, my name is CourtneyOh. I'm here because I live with chronic illness and fatigue and I want to learn to live better with it- I am the primary wage earner in my family and have two lovely children.

    #MightyTogether #Anxiety #ChronicInflammatoryResponseSyndrome #Asthma

    11 comments