HEALTH COACH - What is myalgic encephalomyelitis (ME)? - Ellie Rw - Medium

HEALTH COACH -

 What is myalgic encephalomyelitis (ME)? - Ellie Rw - Medium  
 
 This is a question that I have often answered during the 3 and a half years that I have lived with this disease; Asked by friends, family, teachers, peers, neighbors and even strangers on the Internet. You would think that now I would have a concise but informative answer to the question, but the truth is that I never know how to explain the reality of this disease, I can not find a way to convey what it is What is living with it  Really  like. There are facts, statistics, information items that you can find from a quick Google search; There is the controversy surrounding the disease, the selective coverage of the media, the condemnation of false studies by some scientists and the passivity of others. Then there is a more personal level of explanation: the actual stories of patients; Individual struggles; The reminder that all the people who make up this large number that we see in the statistics are someone who has a life, a life with loved ones and hopes and dreams, with cut careers and ambitions set in waiting; Someone whose life was reversed by this disease. 
 
 
  
 
 "This is real. This is physical. That 's me. 
 
 
 I never know what is the right approach. I try to think about what words could have the biggest impact in helping people understand how horrible this disease can be, weighing the benefits of relying more on facts or on the " # 39; emotionality. I do not know the best way to make you understand, but I can try. 
 
 I can move a list of symptoms: constant fatigue; Chronic pain; nausea; Migraines and headaches; Cognitive impairment - causing short-term memory problems, speech problems, difficulty in following conversations or instructions and difficulty reading; dizziness; weakness; Orthostatic intolerance - the inability to be, or intolerance to be, vertically; Insomnia and / or hypersomania, inability to regulate body temperature; Muscle spasms - just some of the more than 60 recognized symptoms that ME patients experience, all aggravated after activity. 
 
 I can share the statistics: about 250,000 people in the UK have ME, with some estimates of up to 20 million people worldwide; And 25% of these people are classified as severely affected, meaning they experience a level of disability so deep that they are mostly related to home or bed. I could tell you that a small number of patients are so seriously ill that they can not eat or breathe by themselves, so they rely on feeding tubes and oxygen masks, Unable to communicate or engage in an activity. 
 
 I can inform you that there is no effective treatment for this disease and that psychologists continue to put pressure on the subject to dominate this condition, although hundreds of # 39 studies have shown marked physiological abnormalities in patients with ME. Health service providers are desperately attacking the notion that EM can be treated by behavioral therapy and a graduated exercise, although the only study they use to safeguard these claims - called the 39 PACE trial - shows that this approach has aggravated more patients than it has helped, and these foreign targets, such as researchers, publicly condemned this study for its bias. I could tell you that the rare occasions when ME actually does the news is usually prompted by someone who rejects this defective study to inform us that ME has a cure that the NHS offers. The NHS is painted as a hero and the public can get back to the sick sick forgetting because they believe we are receiving treatment and that we do not need their help despite the Fact that we are doing desperately. 
 
 You I often feel that I have suffered more from health professionals than I have been helped, and that I have panic attacks before appointments Because I am so afraid of the dismissal that I often face. I could tell you about the ten different medications that I take every day, in an attempt to feel some relief from the most manageable symptoms. I could talk about how at the age of nineteen I depend on opiates because they are the only ones who can start touching my pain and how I am also a dependent drug to be able to Sleeping and on another to eat. I could try to explain how these drugs are the only things that keep my quality of life a little bearable, and that with them I do not know how long I can continue but again, This probably seems a little too melodramatic for general consumption. 
 
 I often wonder if trying to convey the impact of this disease on my life is the right approach, as I am careful to feel as if I was looking for mercy, which is the last thing that I want. However, if I do not talk about my reality, I am just another number, a person in a sea of ​​millions covered by statistics. So, maybe, I should tell you how, in my sickest, I had to be spoon-fed, and someone had to brush my teeth and I need to be able to " 39, help to wash or change, or even if I sat for a second to move around the bed, and how listening to an audiobook was often the extent of 39 Activity that I could tolerate. You should probably also know that while I have made small regular improvements over the past year, and I can now do a lot of these things, my life is still almost entirely busy within two meters of the squired area Of my bed, where I spent the last two and a half years. I am still too sick to leave my home, something that I have only done once since November 2014, who was to be admitted to the hospital in June 2015, for which I had Need a bed in an ambulance to get there, and even with special requirements, admission was responsible for a terrifying decline in my health. These days I find that I barely remember to walk barefoot in the grass, feel the breeze against bare skin, or enjoy the warmth of the sun, and I desire a future where these Things are still possible. 
 
 Maybe I should tell you what this disease has taken away, in addition to being able to walk or leave my house. He took me my chance to attend my A levels, and more painfully, it took the option to start university last September, a dream that I Had since the age of 6 years; A dream that was on its way to becoming reality, with 4 A * s predicted at A level, and the belief by many that I was on track to achieve the most ambitious dream of attending Oxbridge. It took me the chance to finish the school alongside the people I knew for 11 years, my chance to say goodbye to my peers and teachers, and travel with my friends once I was there. School completed. I missed visiting the new farewells to my family and the opportunities to visit some of my older parents, letting me fear the possibility that they will pass before they can see them again. 
 
 While my peers have spent the past few years studying, applying for jobs, going to dates, visiting different countries, meeting new people, falling (And to do it again), attending weddings (and funerals), dancing on Saturday nights, kissing strangers and doing many different memories, I dressed up here - Living my life in my bed. I missed three years of being a typical teenager and having all sorts of experiences that would have had the potential to shape the person I became. Instead, I was forced into a situation that I have little control over and I am faced with the undeniable challenge of ensuring that this situation only has positive effects on what I become. 
 
 
 ] 
 
 
 I do not say that my life is bad. In fact, I do a very good job to get the most out of what I have, if I can say it myself, but I deserve a chance to live outside these four walls. I, and the 20 million other people suffering from ME around the world, deserve some form of treatment; We deserve the hope of regaining functionality and living the kind of life we ​​wish to live. We deserve our suffering to be taken seriously, have support within the health profession and ultimately feel that we are not alone in our struggle for better treatment. 
 
 In the first place, we deserve access to appropriate health care In the results, comprehensive biomedical studies that would allow us to access treatment that attacks the Cause of this awful illness, rather than just being left to do our best for symptom management alone. It is certainly possible, we just need more people to  want  to make it possible. 
 
  We deserve the help. We deserve treatment. We deserve the hope. Please consider ME Awareness Day   by making a donation to invest in ME   
 - a charity dedicated to conducting biomedical research on the cause of ME with the hope of finding a cure or effective treatment.