Jane L Edwards

@janel_edwards | contributor
Author of Chronic Illness: Learning to live behind my smile. I have two types of Vasculitis, a rare autoimmune disease, Hypothyroidism, and dodgy adrenal glands so I am steroid dependant. Book available on Amazon. Visit my website www.chronicillness.co.uk
Jane L Edwards

Lessons Learned in 10 Years of Living With Chronic Illness

Ten long years. 10 years of hoping I will improve. 10 years of taking serious medications with serious side effects. 10 years and somehow, I don’t feel I have progressed physically. I haven’t gotten “better,” but I am better at managing my condition and my life. It all started with a toothache and a tiredness that sleep could not cure. The removal of all my wisdom teeth, three rounds of antibiotics, and numerous visits to the dentist later, and I heard the words that I will never forget: “Something is wrong, and you need to urgently see your doctor.” Thanks to my fab dentist (who I’m still with now), that is what I did. But getting a correct diagnosis is not always as simple as seeing your doctor for some tests. And so, several weeks of visiting my GP and having blood tests led to an emergency stay for two weeks in the hospital. Then countless doctors and endless tests later, and I received a diagnosis: microscopic polyangiitis, but I was then later diagnosed with Wegener’s vasculitis. It wasn’t the outcome I had expected, but what was happening to me was still not clear. When one doctor questioned my symptoms and another doctor proved me right, I learned valuable lessons. Ultimately, you must look out for yourself and find experts you can trust. I have learned a lot in 10 years, and maybe I have progressed more than I think. I have a team that I trust, I have some stability with my health, and I have family and friends who understand that sometimes, my illness is too much for me, and I need to hide away. But overall, I have a new life — one that wasn’t planned and one that is restricted in some ways. However, it is a life filled with love and respect. The new version of my life is quite lovely, so I think I will keep it — medications and all. It’s called “chronic illness” for a reason. After my diagnosis, I thought I could battle through. I thought I would win. I thought I was invincible. Unfortunately, I couldn’t win, and I was so far from invincible. 10 years on, I am still battling and visiting hospitals monthly, but I am also still hopeful. I did not understand the words “chronic illness.” When a colleague asked me how I was managing, and I said my illness was still dragging on, his response floored me. He simply said, “Well, it is chronic.” It was such a straightforward comment, but it really hit home. Did I think my illness would just go away? Had I not believed that it would stay with me for the rest of my life? Had I just ignored reality? Am I still ignoring it? I try to forget that I have a severe illness. I try to “prove it wrong,” almost as though if I keep going, somebody will soon tell me it was all a joke and that I am OK. The COVID-19 pandemic changed my life. The last few years have been tough for us all. The COVID-19 pandemic changed many things. For me, it felt like a strange clinical trial — I got to remove all the travel and interactions with people and see what happens to an immunosuppressed person with an autoimmune disease. The lack of infections allowed me to drop my medication dose. It also allowed me to work alongside colleagues as equals and not as the only one who was not physically in the room. The pandemic meant I had the energy to be with my family. The world became as restricted as I have been, and it leveled the playing field. Not anymore, though. As the world becomes “normal” again, I become “abnormal” again, and the pressure to join in returns. I have had a number of common infections, and so my medication dose went back up. The large “clinical trial” that has been my life during COVID-19 has given me resounding answers to some of my problems. But solving these problems is not financially straightforward in the real world. Thank you for all the support. The past 10 years have been tough — full of knockouts and disappointment. But they have also been full of laughter, love, and special people. My family has been amazing. Even if we do lots of shouting some days, when it matters, we are a tight unit, and we deal with everything together. My family members are my strength, and I wish I could repay all the support, love, and kindness they have shown me. To the friends who came to the hospital with me or looked after the girls for me when they were little, thank you. To those who have listened to me cry even if it did not make much sense, thank you. My online friends deserve a “thank you” too. Since writing the book, the support from Instagram, Facebook and Twitter has been critical. Online friends, you may understand me. You are often awake at the same time as I am when I cannot sleep, and you may also know how scary and uncertain this disease can be. Thank you. To my boss and colleagues, thank you for all the encouragement and support, positive words, and understanding when I just couldn’t be in the room. You have been the most fantastic company for the last 10 years. George, the black Labrador and Burt, the cocker spaniel have helped me too. George and Burt, you will never know how much you have kept me moving. The movement has helped me avoid diabetes, brittle bones, weight struggles, and depression. Our walks help me both physically and mentally. This is what the future holds. Unfortunately, the medication that has given me some stability has now caused the doctors to think it has brought on ulcerative colitis, another autoimmune disease. This disease affects my bowel and brings more inflammation, more new investigations, more new medications, and yet another thing to learn to live with every day. But I will manage. The past 10 years of medications have caused osteoporosis in my back and hip, medication dependency, and weight changes. The fatigue is constant, and when I get to the end of a working day, I am lucky if I can speak to my family. I keep going, though. I am proud of how my family and I have all dealt with this life-changing diagnosis. I am proud of our resilience and ability to fight. I am also proud of how my children view this world with kindness, and I know that they will make a real difference as they turn into extraordinary young ladies. Vasculitis forced me to step back, look at my world, and focus my energy on the things that really matter. For now, I celebrate being alive, and I thank everyone who has helped me stay that way. It was not so long ago that a diagnosis of vasculitis was an immediate death sentence. I am grateful for the clinical advances and the care I have been given. Now can someone please invent a cure?

Jane L Edwards

This Is My Fatigue From Chronic Illness

This is my fatigue. Fatigue is a symptom of many diseases. It significantly impacts my condition, vasculitis (granulomatosis with polyangiitis/Wegener’s and chronic periaortitis). Yet when I search for a definition, it is not easy to find a clear and straightforward medical classification for fatigue. There seems to be material on fatigue within different diseases and chronic fatigue syndrome, but not really a clear definition that fits the crushing impact fatigue has on my life. So, as I have done before, I would like to share my experience, not because I know better than others, but because I know my situation, and maybe this is repeated in the lives of others. I have found it challenging to explain my fatigue to others. Perhaps writing it down will bring me some clarity and confidence when I speak with my clinical team. Hopefully, I can improve on my usual description of “I just don’t feel right.” My fatigue is a mix of physical and mental symptoms. Sometimes it is not easy to split these two areas, but I will try. Often, I feel the physical is easier to describe, less subjective, and more “believable.” I don’t really understand why I think this way, I just know that I do. My Physical Fatigue Symptoms Physically, I feel heavy, lacking in energy, and quickly exhausted. My arms and legs feel like they have weights hanging from them. Every action seems to take double the energy it should generally take. Often, I will get cramps in my fingers and toes or restless legs. I feel tired, but extra sleep doesn’t help me feel better. I can fall asleep watching my favorite television shows; I just do not have the energy to keep my eyes open. My head just wants to flop to the side and rest peacefully. I feel like I have run a marathon 20 minutes after I have gotten out of bed, and I feel like I want to curl back up and go to sleep. A shower leaves me exhausted and sweating. My head feels too heavy to carry. My Mental Fatigue Symptoms I cry a lot; I feel hopeless and think I cannot carry on doing what I am doing. I want to give in and not keep fighting. Everything feels too much to handle; I am irritable and struggle to feel empathy for others. I don’t want to start anything, and I don’t find joy in anything that I do start. A sadness comes over me, a feeling of being useless and not wanting to carry on as I am, worrying whether I will feel like this for the rest of my life. I cannot think logically. I don’t learn; I don’t remember that the fatigue lifts a little and that I am coping with everything thrown at me. When the fatigue hits hard, I don’t remember that I have been here before, and I have fought back from it before. It’s like my memory is wiped after each episode. Thankfully, those around me are always there to remind me that this is all part of the illness. How Do I Describe My Fatigue to Clinicians? Well, I am not very good at describing it! And maybe that is why clinicians don’t take it as a severe symptom of the illness. I use words like crashed, exhausted, not quite right, and knackered. None of these really do justice to the wide range of symptoms that I experience when the fatigue hits. Because I cannot say which physical part of me hurts, I find it hard to describe all the little things that build up to me feeling horrible. I don’t want to be a hypochondriac or dramatic. So, a long list of minor issues makes me feel like I am trying to make this into something bigger than it is. But for me, it is big; it is debilitating. It pauses my life and leaves me virtually unable to leave the house at times (except for dog walks). What Helps Me with Fatigue? My family helps me. They remind me that it is part of the illness and that I will return to some normality. They help me physically, and they try to give me time to rest and recover. Cuddles from my children make me realize that I must keep positive and “get my fight back” soon. My family helps me both physically and mentally to get through the fatigue. The dogs are the reason for going outside and moving, no matter how tired I am, they need to go out. Sometimes it is a slow 20-minute wander down the street, but it does help. As predictable as it sounds, eating well helps, a nice homecooked meal does make me feel brighter, and once I eat it, I am less likely to eat the lazy stuff that is not so healthy. My husband will make a superb Sunday lunch or a summer BBQ to try and take the pressure off. He loves volunteering to do the weekend cooking, mainly with a beer in hand. Please don’t get me wrong, I am not saying food is medicine, but having a nutritious meal leaves me in a more positive mood. Social media helps me sometimes, and sometimes it doesn’t. This seems strange to write when all we hear is that social media damages our mental health, but when you feel low and alone, somebody with the same illness on the end of your computer can make a difference. They can offer support as they understand how you feel and have been in your situation. I am very grateful to the special people I have met on social media platforms; they help me realize that I will be OK, and I hope that I help them in return. An Unexpected Positive From Long COVID-19 I hate to write about positives and COVID-19 as it has been the cruelest impact on our world and meant we have lost some very special people. But the medical research that will focus on long COVID-19 and how the immune system works could lead to positive developments in auto-immune diseases and the treatment and management of fatigue across all disorders. I dream that the thousands of scientists examining the effects of this pandemic will lead to some tangible breakthroughs for those of us with long-term conditions that present with fatigue in similar ways to COVID-19.

Jane L Edwards

This Is My Fatigue From Chronic Illness

This is my fatigue. Fatigue is a symptom of many diseases. It significantly impacts my condition, vasculitis (granulomatosis with polyangiitis/Wegener’s and chronic periaortitis). Yet when I search for a definition, it is not easy to find a clear and straightforward medical classification for fatigue. There seems to be material on fatigue within different diseases and chronic fatigue syndrome, but not really a clear definition that fits the crushing impact fatigue has on my life. So, as I have done before, I would like to share my experience, not because I know better than others, but because I know my situation, and maybe this is repeated in the lives of others. I have found it challenging to explain my fatigue to others. Perhaps writing it down will bring me some clarity and confidence when I speak with my clinical team. Hopefully, I can improve on my usual description of “I just don’t feel right.” My fatigue is a mix of physical and mental symptoms. Sometimes it is not easy to split these two areas, but I will try. Often, I feel the physical is easier to describe, less subjective, and more “believable.” I don’t really understand why I think this way, I just know that I do. My Physical Fatigue Symptoms Physically, I feel heavy, lacking in energy, and quickly exhausted. My arms and legs feel like they have weights hanging from them. Every action seems to take double the energy it should generally take. Often, I will get cramps in my fingers and toes or restless legs. I feel tired, but extra sleep doesn’t help me feel better. I can fall asleep watching my favorite television shows; I just do not have the energy to keep my eyes open. My head just wants to flop to the side and rest peacefully. I feel like I have run a marathon 20 minutes after I have gotten out of bed, and I feel like I want to curl back up and go to sleep. A shower leaves me exhausted and sweating. My head feels too heavy to carry. My Mental Fatigue Symptoms I cry a lot; I feel hopeless and think I cannot carry on doing what I am doing. I want to give in and not keep fighting. Everything feels too much to handle; I am irritable and struggle to feel empathy for others. I don’t want to start anything, and I don’t find joy in anything that I do start. A sadness comes over me, a feeling of being useless and not wanting to carry on as I am, worrying whether I will feel like this for the rest of my life. I cannot think logically. I don’t learn; I don’t remember that the fatigue lifts a little and that I am coping with everything thrown at me. When the fatigue hits hard, I don’t remember that I have been here before, and I have fought back from it before. It’s like my memory is wiped after each episode. Thankfully, those around me are always there to remind me that this is all part of the illness. How Do I Describe My Fatigue to Clinicians? Well, I am not very good at describing it! And maybe that is why clinicians don’t take it as a severe symptom of the illness. I use words like crashed, exhausted, not quite right, and knackered. None of these really do justice to the wide range of symptoms that I experience when the fatigue hits. Because I cannot say which physical part of me hurts, I find it hard to describe all the little things that build up to me feeling horrible. I don’t want to be a hypochondriac or dramatic. So, a long list of minor issues makes me feel like I am trying to make this into something bigger than it is. But for me, it is big; it is debilitating. It pauses my life and leaves me virtually unable to leave the house at times (except for dog walks). What Helps Me with Fatigue? My family helps me. They remind me that it is part of the illness and that I will return to some normality. They help me physically, and they try to give me time to rest and recover. Cuddles from my children make me realize that I must keep positive and “get my fight back” soon. My family helps me both physically and mentally to get through the fatigue. The dogs are the reason for going outside and moving, no matter how tired I am, they need to go out. Sometimes it is a slow 20-minute wander down the street, but it does help. As predictable as it sounds, eating well helps, a nice homecooked meal does make me feel brighter, and once I eat it, I am less likely to eat the lazy stuff that is not so healthy. My husband will make a superb Sunday lunch or a summer BBQ to try and take the pressure off. He loves volunteering to do the weekend cooking, mainly with a beer in hand. Please don’t get me wrong, I am not saying food is medicine, but having a nutritious meal leaves me in a more positive mood. Social media helps me sometimes, and sometimes it doesn’t. This seems strange to write when all we hear is that social media damages our mental health, but when you feel low and alone, somebody with the same illness on the end of your computer can make a difference. They can offer support as they understand how you feel and have been in your situation. I am very grateful to the special people I have met on social media platforms; they help me realize that I will be OK, and I hope that I help them in return. An Unexpected Positive From Long COVID-19 I hate to write about positives and COVID-19 as it has been the cruelest impact on our world and meant we have lost some very special people. But the medical research that will focus on long COVID-19 and how the immune system works could lead to positive developments in auto-immune diseases and the treatment and management of fatigue across all disorders. I dream that the thousands of scientists examining the effects of this pandemic will lead to some tangible breakthroughs for those of us with long-term conditions that present with fatigue in similar ways to COVID-19.

Jane L Edwards

This Is My Fatigue From Chronic Illness

This is my fatigue. Fatigue is a symptom of many diseases. It significantly impacts my condition, vasculitis (granulomatosis with polyangiitis/Wegener’s and chronic periaortitis). Yet when I search for a definition, it is not easy to find a clear and straightforward medical classification for fatigue. There seems to be material on fatigue within different diseases and chronic fatigue syndrome, but not really a clear definition that fits the crushing impact fatigue has on my life. So, as I have done before, I would like to share my experience, not because I know better than others, but because I know my situation, and maybe this is repeated in the lives of others. I have found it challenging to explain my fatigue to others. Perhaps writing it down will bring me some clarity and confidence when I speak with my clinical team. Hopefully, I can improve on my usual description of “I just don’t feel right.” My fatigue is a mix of physical and mental symptoms. Sometimes it is not easy to split these two areas, but I will try. Often, I feel the physical is easier to describe, less subjective, and more “believable.” I don’t really understand why I think this way, I just know that I do. My Physical Fatigue Symptoms Physically, I feel heavy, lacking in energy, and quickly exhausted. My arms and legs feel like they have weights hanging from them. Every action seems to take double the energy it should generally take. Often, I will get cramps in my fingers and toes or restless legs. I feel tired, but extra sleep doesn’t help me feel better. I can fall asleep watching my favorite television shows; I just do not have the energy to keep my eyes open. My head just wants to flop to the side and rest peacefully. I feel like I have run a marathon 20 minutes after I have gotten out of bed, and I feel like I want to curl back up and go to sleep. A shower leaves me exhausted and sweating. My head feels too heavy to carry. My Mental Fatigue Symptoms I cry a lot; I feel hopeless and think I cannot carry on doing what I am doing. I want to give in and not keep fighting. Everything feels too much to handle; I am irritable and struggle to feel empathy for others. I don’t want to start anything, and I don’t find joy in anything that I do start. A sadness comes over me, a feeling of being useless and not wanting to carry on as I am, worrying whether I will feel like this for the rest of my life. I cannot think logically. I don’t learn; I don’t remember that the fatigue lifts a little and that I am coping with everything thrown at me. When the fatigue hits hard, I don’t remember that I have been here before, and I have fought back from it before. It’s like my memory is wiped after each episode. Thankfully, those around me are always there to remind me that this is all part of the illness. How Do I Describe My Fatigue to Clinicians? Well, I am not very good at describing it! And maybe that is why clinicians don’t take it as a severe symptom of the illness. I use words like crashed, exhausted, not quite right, and knackered. None of these really do justice to the wide range of symptoms that I experience when the fatigue hits. Because I cannot say which physical part of me hurts, I find it hard to describe all the little things that build up to me feeling horrible. I don’t want to be a hypochondriac or dramatic. So, a long list of minor issues makes me feel like I am trying to make this into something bigger than it is. But for me, it is big; it is debilitating. It pauses my life and leaves me virtually unable to leave the house at times (except for dog walks). What Helps Me with Fatigue? My family helps me. They remind me that it is part of the illness and that I will return to some normality. They help me physically, and they try to give me time to rest and recover. Cuddles from my children make me realize that I must keep positive and “get my fight back” soon. My family helps me both physically and mentally to get through the fatigue. The dogs are the reason for going outside and moving, no matter how tired I am, they need to go out. Sometimes it is a slow 20-minute wander down the street, but it does help. As predictable as it sounds, eating well helps, a nice homecooked meal does make me feel brighter, and once I eat it, I am less likely to eat the lazy stuff that is not so healthy. My husband will make a superb Sunday lunch or a summer BBQ to try and take the pressure off. He loves volunteering to do the weekend cooking, mainly with a beer in hand. Please don’t get me wrong, I am not saying food is medicine, but having a nutritious meal leaves me in a more positive mood. Social media helps me sometimes, and sometimes it doesn’t. This seems strange to write when all we hear is that social media damages our mental health, but when you feel low and alone, somebody with the same illness on the end of your computer can make a difference. They can offer support as they understand how you feel and have been in your situation. I am very grateful to the special people I have met on social media platforms; they help me realize that I will be OK, and I hope that I help them in return. An Unexpected Positive From Long COVID-19 I hate to write about positives and COVID-19 as it has been the cruelest impact on our world and meant we have lost some very special people. But the medical research that will focus on long COVID-19 and how the immune system works could lead to positive developments in auto-immune diseases and the treatment and management of fatigue across all disorders. I dream that the thousands of scientists examining the effects of this pandemic will lead to some tangible breakthroughs for those of us with long-term conditions that present with fatigue in similar ways to COVID-19.

Jane L Edwards

This Is My Fatigue From Chronic Illness

This is my fatigue. Fatigue is a symptom of many diseases. It significantly impacts my condition, vasculitis (granulomatosis with polyangiitis/Wegener’s and chronic periaortitis). Yet when I search for a definition, it is not easy to find a clear and straightforward medical classification for fatigue. There seems to be material on fatigue within different diseases and chronic fatigue syndrome, but not really a clear definition that fits the crushing impact fatigue has on my life. So, as I have done before, I would like to share my experience, not because I know better than others, but because I know my situation, and maybe this is repeated in the lives of others. I have found it challenging to explain my fatigue to others. Perhaps writing it down will bring me some clarity and confidence when I speak with my clinical team. Hopefully, I can improve on my usual description of “I just don’t feel right.” My fatigue is a mix of physical and mental symptoms. Sometimes it is not easy to split these two areas, but I will try. Often, I feel the physical is easier to describe, less subjective, and more “believable.” I don’t really understand why I think this way, I just know that I do. My Physical Fatigue Symptoms Physically, I feel heavy, lacking in energy, and quickly exhausted. My arms and legs feel like they have weights hanging from them. Every action seems to take double the energy it should generally take. Often, I will get cramps in my fingers and toes or restless legs. I feel tired, but extra sleep doesn’t help me feel better. I can fall asleep watching my favorite television shows; I just do not have the energy to keep my eyes open. My head just wants to flop to the side and rest peacefully. I feel like I have run a marathon 20 minutes after I have gotten out of bed, and I feel like I want to curl back up and go to sleep. A shower leaves me exhausted and sweating. My head feels too heavy to carry. My Mental Fatigue Symptoms I cry a lot; I feel hopeless and think I cannot carry on doing what I am doing. I want to give in and not keep fighting. Everything feels too much to handle; I am irritable and struggle to feel empathy for others. I don’t want to start anything, and I don’t find joy in anything that I do start. A sadness comes over me, a feeling of being useless and not wanting to carry on as I am, worrying whether I will feel like this for the rest of my life. I cannot think logically. I don’t learn; I don’t remember that the fatigue lifts a little and that I am coping with everything thrown at me. When the fatigue hits hard, I don’t remember that I have been here before, and I have fought back from it before. It’s like my memory is wiped after each episode. Thankfully, those around me are always there to remind me that this is all part of the illness. How Do I Describe My Fatigue to Clinicians? Well, I am not very good at describing it! And maybe that is why clinicians don’t take it as a severe symptom of the illness. I use words like crashed, exhausted, not quite right, and knackered. None of these really do justice to the wide range of symptoms that I experience when the fatigue hits. Because I cannot say which physical part of me hurts, I find it hard to describe all the little things that build up to me feeling horrible. I don’t want to be a hypochondriac or dramatic. So, a long list of minor issues makes me feel like I am trying to make this into something bigger than it is. But for me, it is big; it is debilitating. It pauses my life and leaves me virtually unable to leave the house at times (except for dog walks). What Helps Me with Fatigue? My family helps me. They remind me that it is part of the illness and that I will return to some normality. They help me physically, and they try to give me time to rest and recover. Cuddles from my children make me realize that I must keep positive and “get my fight back” soon. My family helps me both physically and mentally to get through the fatigue. The dogs are the reason for going outside and moving, no matter how tired I am, they need to go out. Sometimes it is a slow 20-minute wander down the street, but it does help. As predictable as it sounds, eating well helps, a nice homecooked meal does make me feel brighter, and once I eat it, I am less likely to eat the lazy stuff that is not so healthy. My husband will make a superb Sunday lunch or a summer BBQ to try and take the pressure off. He loves volunteering to do the weekend cooking, mainly with a beer in hand. Please don’t get me wrong, I am not saying food is medicine, but having a nutritious meal leaves me in a more positive mood. Social media helps me sometimes, and sometimes it doesn’t. This seems strange to write when all we hear is that social media damages our mental health, but when you feel low and alone, somebody with the same illness on the end of your computer can make a difference. They can offer support as they understand how you feel and have been in your situation. I am very grateful to the special people I have met on social media platforms; they help me realize that I will be OK, and I hope that I help them in return. An Unexpected Positive From Long COVID-19 I hate to write about positives and COVID-19 as it has been the cruelest impact on our world and meant we have lost some very special people. But the medical research that will focus on long COVID-19 and how the immune system works could lead to positive developments in auto-immune diseases and the treatment and management of fatigue across all disorders. I dream that the thousands of scientists examining the effects of this pandemic will lead to some tangible breakthroughs for those of us with long-term conditions that present with fatigue in similar ways to COVID-19.

Jane L Edwards

This Is My Fatigue From Chronic Illness

This is my fatigue. Fatigue is a symptom of many diseases. It significantly impacts my condition, vasculitis (granulomatosis with polyangiitis/Wegener’s and chronic periaortitis). Yet when I search for a definition, it is not easy to find a clear and straightforward medical classification for fatigue. There seems to be material on fatigue within different diseases and chronic fatigue syndrome, but not really a clear definition that fits the crushing impact fatigue has on my life. So, as I have done before, I would like to share my experience, not because I know better than others, but because I know my situation, and maybe this is repeated in the lives of others. I have found it challenging to explain my fatigue to others. Perhaps writing it down will bring me some clarity and confidence when I speak with my clinical team. Hopefully, I can improve on my usual description of “I just don’t feel right.” My fatigue is a mix of physical and mental symptoms. Sometimes it is not easy to split these two areas, but I will try. Often, I feel the physical is easier to describe, less subjective, and more “believable.” I don’t really understand why I think this way, I just know that I do. My Physical Fatigue Symptoms Physically, I feel heavy, lacking in energy, and quickly exhausted. My arms and legs feel like they have weights hanging from them. Every action seems to take double the energy it should generally take. Often, I will get cramps in my fingers and toes or restless legs. I feel tired, but extra sleep doesn’t help me feel better. I can fall asleep watching my favorite television shows; I just do not have the energy to keep my eyes open. My head just wants to flop to the side and rest peacefully. I feel like I have run a marathon 20 minutes after I have gotten out of bed, and I feel like I want to curl back up and go to sleep. A shower leaves me exhausted and sweating. My head feels too heavy to carry. My Mental Fatigue Symptoms I cry a lot; I feel hopeless and think I cannot carry on doing what I am doing. I want to give in and not keep fighting. Everything feels too much to handle; I am irritable and struggle to feel empathy for others. I don’t want to start anything, and I don’t find joy in anything that I do start. A sadness comes over me, a feeling of being useless and not wanting to carry on as I am, worrying whether I will feel like this for the rest of my life. I cannot think logically. I don’t learn; I don’t remember that the fatigue lifts a little and that I am coping with everything thrown at me. When the fatigue hits hard, I don’t remember that I have been here before, and I have fought back from it before. It’s like my memory is wiped after each episode. Thankfully, those around me are always there to remind me that this is all part of the illness. How Do I Describe My Fatigue to Clinicians? Well, I am not very good at describing it! And maybe that is why clinicians don’t take it as a severe symptom of the illness. I use words like crashed, exhausted, not quite right, and knackered. None of these really do justice to the wide range of symptoms that I experience when the fatigue hits. Because I cannot say which physical part of me hurts, I find it hard to describe all the little things that build up to me feeling horrible. I don’t want to be a hypochondriac or dramatic. So, a long list of minor issues makes me feel like I am trying to make this into something bigger than it is. But for me, it is big; it is debilitating. It pauses my life and leaves me virtually unable to leave the house at times (except for dog walks). What Helps Me with Fatigue? My family helps me. They remind me that it is part of the illness and that I will return to some normality. They help me physically, and they try to give me time to rest and recover. Cuddles from my children make me realize that I must keep positive and “get my fight back” soon. My family helps me both physically and mentally to get through the fatigue. The dogs are the reason for going outside and moving, no matter how tired I am, they need to go out. Sometimes it is a slow 20-minute wander down the street, but it does help. As predictable as it sounds, eating well helps, a nice homecooked meal does make me feel brighter, and once I eat it, I am less likely to eat the lazy stuff that is not so healthy. My husband will make a superb Sunday lunch or a summer BBQ to try and take the pressure off. He loves volunteering to do the weekend cooking, mainly with a beer in hand. Please don’t get me wrong, I am not saying food is medicine, but having a nutritious meal leaves me in a more positive mood. Social media helps me sometimes, and sometimes it doesn’t. This seems strange to write when all we hear is that social media damages our mental health, but when you feel low and alone, somebody with the same illness on the end of your computer can make a difference. They can offer support as they understand how you feel and have been in your situation. I am very grateful to the special people I have met on social media platforms; they help me realize that I will be OK, and I hope that I help them in return. An Unexpected Positive From Long COVID-19 I hate to write about positives and COVID-19 as it has been the cruelest impact on our world and meant we have lost some very special people. But the medical research that will focus on long COVID-19 and how the immune system works could lead to positive developments in auto-immune diseases and the treatment and management of fatigue across all disorders. I dream that the thousands of scientists examining the effects of this pandemic will lead to some tangible breakthroughs for those of us with long-term conditions that present with fatigue in similar ways to COVID-19.

Jane L Edwards

How Pets Can Help Us Keep Going in Life With Chronic Illness

Dealing with long-term illness can be lonely; your energy is zapped with hospital visits, medication side effects, and disease symptoms. Just talking to people can be exhausting. Being out with people leaves me craving the comfort of darkness, dreaming of snuggling in my bed. I am not antisocial; I just do not have the strength or energy for socializing. My work leaves me tired and drained, so the thought of going out at the end of the day is not something that I relish. One night out can leave me exhausted for several days. The lack of energy makes it preferable to hide away rather than face the world and join in. What keeps me moving? Well, no matter how tired or worn out I feel, there is one thing that makes me smile — my gorgeous black Labrador, George. He has made me smile for six years, every single day. We have recently added to the family and brought in a Cocker Spaniel called Burt. He is the archetypal puppy with a constant wagging tail and big pleading eyes. Their energy and the gentle nudging with the soft nose make me go for daily walks. Even if it is a slow shuffle or a very short walk, they get me out of the house into the fresh air. They make me brush my hair and move my legs. It gets the heart pumping a little and means that I look at the sun and smile. I know that without the enthusiastic encouragement from my canine friends, I wouldn’t leave the house some days. Without them, I would happily stay hidden away, avoiding reality. Even when I am really struggling, a short escape from the confines of the home brings a lightness to me and lifts my spirit. Unconditional love It doesn’t have to be a loving Labrador or a cute Cocker. It is just the responsibility of owning a pet, a commitment, a snuggle, the absolute and unconditional love. The fact that they don’t understand how much the illness has changed me or that I am limited in my physical actions. They don’t care that I need an afternoon snooze or that I have piled on too much weight after all the treatment. They just want to be with me; any version of me will do. They have no judgment of me. Please do not get me wrong; I am not delusional, I know the dog is really driven by food, exercise, and toilet needs and is not a human. But the knowledge that they don’t care about my history and keep me moving and going outside is good enough for me. There is an understanding, I see it when I am at my most fragile, and they respond to my change. Their needs reduce, and they go at my speed, almost like they know I need to do less than usual. Dogs make great listeners There are moments when the words I want to say are not suitable for human ears and when I need to shout and get my frustration out into the air around me. The dogs do not understand my words. But they are there; they listen and look at me with an understanding that I really need them in my life at that moment in time. They have helped me to solve many a problem over the last few years. Yes, I know they cannot join in the discussion, but maybe that is the point; they are my sounding board to say exactly what is on my mind, without a filter. Chronic illness often leaves you hiding your honest thoughts because you feel guilty. You think you are boring those around you by always being ill, or you feel like you are constantly moaning. Dogs don’t care; you could say the same thing every day, and they would still wag their excitable tail. Not a human replacement When you read this, you may feel that I am a strange lady who has forgotten that dogs are animals. This is not so. I am fully aware that the dog is a dog, an animal. But there is a connection, and there are moments when just stroking their ears make me realize that life can feel positive and that there are possibilities for me in this world. Dogs give me a nudge to join the real world, a nudge to get out, a nudge to face the world. And all those nudges mean that I go out into the human world, join in with human conversations and meet people. We need human contact; we need to be part of a community, contribute, feel loved and be part of something bigger than our own life. When we feel ill and our energy is low, it is very easy to hide away and say that we are too ill to join in. Some days this is the truth, and going out would be too much, but other days we could do it, but maybe we don’t feel that we can face the real world. Go out and join the community We must force ourselves out of our hideaway and join in, otherwise, we will disappear into a miserable, lonely world. We cannot live in total isolation. We are social animals, and maybe we need an animal to show us how to be social. We could learn a lot from a loving, loyal Labrador and an over-excited Cocker spaniel with a passion for life. Go out and enjoy the world as slowly as you need, but go out, and maybe you will have a lovely conversation with a friendly animal or human along the way. Thank you, Burt and George, for always making me smile.

Jane L Edwards

How Pets Can Help Us Keep Going in Life With Chronic Illness

Dealing with long-term illness can be lonely; your energy is zapped with hospital visits, medication side effects, and disease symptoms. Just talking to people can be exhausting. Being out with people leaves me craving the comfort of darkness, dreaming of snuggling in my bed. I am not antisocial; I just do not have the strength or energy for socializing. My work leaves me tired and drained, so the thought of going out at the end of the day is not something that I relish. One night out can leave me exhausted for several days. The lack of energy makes it preferable to hide away rather than face the world and join in. What keeps me moving? Well, no matter how tired or worn out I feel, there is one thing that makes me smile — my gorgeous black Labrador, George. He has made me smile for six years, every single day. We have recently added to the family and brought in a Cocker Spaniel called Burt. He is the archetypal puppy with a constant wagging tail and big pleading eyes. Their energy and the gentle nudging with the soft nose make me go for daily walks. Even if it is a slow shuffle or a very short walk, they get me out of the house into the fresh air. They make me brush my hair and move my legs. It gets the heart pumping a little and means that I look at the sun and smile. I know that without the enthusiastic encouragement from my canine friends, I wouldn’t leave the house some days. Without them, I would happily stay hidden away, avoiding reality. Even when I am really struggling, a short escape from the confines of the home brings a lightness to me and lifts my spirit. Unconditional love It doesn’t have to be a loving Labrador or a cute Cocker. It is just the responsibility of owning a pet, a commitment, a snuggle, the absolute and unconditional love. The fact that they don’t understand how much the illness has changed me or that I am limited in my physical actions. They don’t care that I need an afternoon snooze or that I have piled on too much weight after all the treatment. They just want to be with me; any version of me will do. They have no judgment of me. Please do not get me wrong; I am not delusional, I know the dog is really driven by food, exercise, and toilet needs and is not a human. But the knowledge that they don’t care about my history and keep me moving and going outside is good enough for me. There is an understanding, I see it when I am at my most fragile, and they respond to my change. Their needs reduce, and they go at my speed, almost like they know I need to do less than usual. Dogs make great listeners There are moments when the words I want to say are not suitable for human ears and when I need to shout and get my frustration out into the air around me. The dogs do not understand my words. But they are there; they listen and look at me with an understanding that I really need them in my life at that moment in time. They have helped me to solve many a problem over the last few years. Yes, I know they cannot join in the discussion, but maybe that is the point; they are my sounding board to say exactly what is on my mind, without a filter. Chronic illness often leaves you hiding your honest thoughts because you feel guilty. You think you are boring those around you by always being ill, or you feel like you are constantly moaning. Dogs don’t care; you could say the same thing every day, and they would still wag their excitable tail. Not a human replacement When you read this, you may feel that I am a strange lady who has forgotten that dogs are animals. This is not so. I am fully aware that the dog is a dog, an animal. But there is a connection, and there are moments when just stroking their ears make me realize that life can feel positive and that there are possibilities for me in this world. Dogs give me a nudge to join the real world, a nudge to get out, a nudge to face the world. And all those nudges mean that I go out into the human world, join in with human conversations and meet people. We need human contact; we need to be part of a community, contribute, feel loved and be part of something bigger than our own life. When we feel ill and our energy is low, it is very easy to hide away and say that we are too ill to join in. Some days this is the truth, and going out would be too much, but other days we could do it, but maybe we don’t feel that we can face the real world. Go out and join the community We must force ourselves out of our hideaway and join in, otherwise, we will disappear into a miserable, lonely world. We cannot live in total isolation. We are social animals, and maybe we need an animal to show us how to be social. We could learn a lot from a loving, loyal Labrador and an over-excited Cocker spaniel with a passion for life. Go out and enjoy the world as slowly as you need, but go out, and maybe you will have a lovely conversation with a friendly animal or human along the way. Thank you, Burt and George, for always making me smile.

Jane L Edwards

How Pets Can Help Us Keep Going in Life With Chronic Illness

Dealing with long-term illness can be lonely; your energy is zapped with hospital visits, medication side effects, and disease symptoms. Just talking to people can be exhausting. Being out with people leaves me craving the comfort of darkness, dreaming of snuggling in my bed. I am not antisocial; I just do not have the strength or energy for socializing. My work leaves me tired and drained, so the thought of going out at the end of the day is not something that I relish. One night out can leave me exhausted for several days. The lack of energy makes it preferable to hide away rather than face the world and join in. What keeps me moving? Well, no matter how tired or worn out I feel, there is one thing that makes me smile — my gorgeous black Labrador, George. He has made me smile for six years, every single day. We have recently added to the family and brought in a Cocker Spaniel called Burt. He is the archetypal puppy with a constant wagging tail and big pleading eyes. Their energy and the gentle nudging with the soft nose make me go for daily walks. Even if it is a slow shuffle or a very short walk, they get me out of the house into the fresh air. They make me brush my hair and move my legs. It gets the heart pumping a little and means that I look at the sun and smile. I know that without the enthusiastic encouragement from my canine friends, I wouldn’t leave the house some days. Without them, I would happily stay hidden away, avoiding reality. Even when I am really struggling, a short escape from the confines of the home brings a lightness to me and lifts my spirit. Unconditional love It doesn’t have to be a loving Labrador or a cute Cocker. It is just the responsibility of owning a pet, a commitment, a snuggle, the absolute and unconditional love. The fact that they don’t understand how much the illness has changed me or that I am limited in my physical actions. They don’t care that I need an afternoon snooze or that I have piled on too much weight after all the treatment. They just want to be with me; any version of me will do. They have no judgment of me. Please do not get me wrong; I am not delusional, I know the dog is really driven by food, exercise, and toilet needs and is not a human. But the knowledge that they don’t care about my history and keep me moving and going outside is good enough for me. There is an understanding, I see it when I am at my most fragile, and they respond to my change. Their needs reduce, and they go at my speed, almost like they know I need to do less than usual. Dogs make great listeners There are moments when the words I want to say are not suitable for human ears and when I need to shout and get my frustration out into the air around me. The dogs do not understand my words. But they are there; they listen and look at me with an understanding that I really need them in my life at that moment in time. They have helped me to solve many a problem over the last few years. Yes, I know they cannot join in the discussion, but maybe that is the point; they are my sounding board to say exactly what is on my mind, without a filter. Chronic illness often leaves you hiding your honest thoughts because you feel guilty. You think you are boring those around you by always being ill, or you feel like you are constantly moaning. Dogs don’t care; you could say the same thing every day, and they would still wag their excitable tail. Not a human replacement When you read this, you may feel that I am a strange lady who has forgotten that dogs are animals. This is not so. I am fully aware that the dog is a dog, an animal. But there is a connection, and there are moments when just stroking their ears make me realize that life can feel positive and that there are possibilities for me in this world. Dogs give me a nudge to join the real world, a nudge to get out, a nudge to face the world. And all those nudges mean that I go out into the human world, join in with human conversations and meet people. We need human contact; we need to be part of a community, contribute, feel loved and be part of something bigger than our own life. When we feel ill and our energy is low, it is very easy to hide away and say that we are too ill to join in. Some days this is the truth, and going out would be too much, but other days we could do it, but maybe we don’t feel that we can face the real world. Go out and join the community We must force ourselves out of our hideaway and join in, otherwise, we will disappear into a miserable, lonely world. We cannot live in total isolation. We are social animals, and maybe we need an animal to show us how to be social. We could learn a lot from a loving, loyal Labrador and an over-excited Cocker spaniel with a passion for life. Go out and enjoy the world as slowly as you need, but go out, and maybe you will have a lovely conversation with a friendly animal or human along the way. Thank you, Burt and George, for always making me smile.

Jane L Edwards

How Pets Can Help Us Keep Going in Life With Chronic Illness

Dealing with long-term illness can be lonely; your energy is zapped with hospital visits, medication side effects, and disease symptoms. Just talking to people can be exhausting. Being out with people leaves me craving the comfort of darkness, dreaming of snuggling in my bed. I am not antisocial; I just do not have the strength or energy for socializing. My work leaves me tired and drained, so the thought of going out at the end of the day is not something that I relish. One night out can leave me exhausted for several days. The lack of energy makes it preferable to hide away rather than face the world and join in. What keeps me moving? Well, no matter how tired or worn out I feel, there is one thing that makes me smile — my gorgeous black Labrador, George. He has made me smile for six years, every single day. We have recently added to the family and brought in a Cocker Spaniel called Burt. He is the archetypal puppy with a constant wagging tail and big pleading eyes. Their energy and the gentle nudging with the soft nose make me go for daily walks. Even if it is a slow shuffle or a very short walk, they get me out of the house into the fresh air. They make me brush my hair and move my legs. It gets the heart pumping a little and means that I look at the sun and smile. I know that without the enthusiastic encouragement from my canine friends, I wouldn’t leave the house some days. Without them, I would happily stay hidden away, avoiding reality. Even when I am really struggling, a short escape from the confines of the home brings a lightness to me and lifts my spirit. Unconditional love It doesn’t have to be a loving Labrador or a cute Cocker. It is just the responsibility of owning a pet, a commitment, a snuggle, the absolute and unconditional love. The fact that they don’t understand how much the illness has changed me or that I am limited in my physical actions. They don’t care that I need an afternoon snooze or that I have piled on too much weight after all the treatment. They just want to be with me; any version of me will do. They have no judgment of me. Please do not get me wrong; I am not delusional, I know the dog is really driven by food, exercise, and toilet needs and is not a human. But the knowledge that they don’t care about my history and keep me moving and going outside is good enough for me. There is an understanding, I see it when I am at my most fragile, and they respond to my change. Their needs reduce, and they go at my speed, almost like they know I need to do less than usual. Dogs make great listeners There are moments when the words I want to say are not suitable for human ears and when I need to shout and get my frustration out into the air around me. The dogs do not understand my words. But they are there; they listen and look at me with an understanding that I really need them in my life at that moment in time. They have helped me to solve many a problem over the last few years. Yes, I know they cannot join in the discussion, but maybe that is the point; they are my sounding board to say exactly what is on my mind, without a filter. Chronic illness often leaves you hiding your honest thoughts because you feel guilty. You think you are boring those around you by always being ill, or you feel like you are constantly moaning. Dogs don’t care; you could say the same thing every day, and they would still wag their excitable tail. Not a human replacement When you read this, you may feel that I am a strange lady who has forgotten that dogs are animals. This is not so. I am fully aware that the dog is a dog, an animal. But there is a connection, and there are moments when just stroking their ears make me realize that life can feel positive and that there are possibilities for me in this world. Dogs give me a nudge to join the real world, a nudge to get out, a nudge to face the world. And all those nudges mean that I go out into the human world, join in with human conversations and meet people. We need human contact; we need to be part of a community, contribute, feel loved and be part of something bigger than our own life. When we feel ill and our energy is low, it is very easy to hide away and say that we are too ill to join in. Some days this is the truth, and going out would be too much, but other days we could do it, but maybe we don’t feel that we can face the real world. Go out and join the community We must force ourselves out of our hideaway and join in, otherwise, we will disappear into a miserable, lonely world. We cannot live in total isolation. We are social animals, and maybe we need an animal to show us how to be social. We could learn a lot from a loving, loyal Labrador and an over-excited Cocker spaniel with a passion for life. Go out and enjoy the world as slowly as you need, but go out, and maybe you will have a lovely conversation with a friendly animal or human along the way. Thank you, Burt and George, for always making me smile.