‘Myth-conceptions’ and realities of Fibromyalgia (FM) and Chronic Fatigue Syndrome (CFS/ME).
‘Myth-conceptions’ and realities of Fibromyalgia (FM) and Chronic Fatigue Syndrome (CFS/ME).
This is Paul Harrison on living with Fibromyalgia and Chronic Fatigue Syndrome. He’s been living with these invisible diseases for 20 years. I’ve been living with them for about 12 years. I cannot believe how similar our stories are. It’s rare for men to have these illnesses; yet it’s so strange how almost perfectly his story mirrors mine. I’ve been planning to do my own video on living with CFS/Fibro for months but I haven’t had the time, energy, motivation or confidence to bare my soul to the world as Paul does so courageously. I think I will record my experiences one day soon, but in the meantime, please listen to his words until the very end. They will give you an insight into my life – and his – until I record my own experiences. Thank You Paul, so very much.
Here’s an update to his first video:
Posted from: Vale of Glamorgan CF64, UK
Yes, I have an invisible disease. Well, several actually…
Many readers of my blog may not realise that I have lived with a condition for over 10 years called Chronic Fatigue Syndrome (or CFS). It is more commonly called Myalgic Encephalopathy (or ME) in the UK. I was diagnosed with CFS in 2002 after contracting the Epstein-Barr virus (EBV) and then developing Chronic Mononucleosis that lasted for an exhausting 6 months or more.
I want to start an ‘Invisible Diseases’ Series, and would love to invite you to share your experiences here, on this very blog. If you have CFS/ME, Fibromyalgia, POTS, Lyme Disease or any other invisible disease (see Dr. Dolan’s FAQ’s below), I would love for you to be a featured contributor. You can email your article or story to email@example.com for publication to www.rycariad.co.uk
I can’t wait to hear from you. In the meantime, I’m going to be brave and share my story for the first time very soon…
Dr. Franky Dolan’s FAQ’s:
Submit your own link to:
TAKE ACTION ON 1ST DECEMBER ‘10
Over 90,000 people are living with HIV in the UK and new infections continue every year. World AIDS Day 2010 is all about raising awareness to tackle HIV prejudice and help stop the spread of HIV.
This year, (RED) launches the most important campaign to date.
For the first time since AIDS arrived on the scene, we have a chance to realize, in the next 5 years, a whole generation born AIDS free. This goal is achievable through continued funding from the global health community, including the Global Fund.As a way to educate people about the goal and create a rallying cry to help achieve it, (RED) have enlisted numerous street artists, painters, illustrators, photographers and sculptors to provide their creative interpretation of an AIDS Free Generation born in 2015. Each artist chose a headline and incorporated a unique take on “2015”. We are launching with 10 artists, but many more will follow in the months to come.
The best way to understand the reality of living with HIV in the UK today is to read true accounts written by people with HIV.People are often surprised to hear that what it is really like to live with HIV. Advances in treatment mean that many people diagnosed today can expect a near normal life expectancy if they get diagnosed early and take treatment correctly. However side effects of daily treatment can have an impact. For many people with HIV it is the social consequences that can have the biggest impact – dealing with prejudice, money worries or how to tell friends and family.
The stories below have been submitted from people living with or affected by HIV. Each person explains in their own words the impact HIV has had on their own lives.Whether you have a family member or friend that is affected by HIV, or are HIV-positive and want to tell people what it’s really like to live with HIV – we’d like you to share your story. Real stories, whether positive or negative, help build a true picture of HIV in the UK today and increase public understanding:
View real stories from people living with HIV and hear them explain in their own words the impact HIV has on their lives. These videos messages include stories from Gary, Steve and Adrienne who tell us about late diagnosis, long term medication and stigma and disclosure.
Gary – Late diagnosis
Steve – Long term medication
Adrienne – Stigma and disclosure
A special message from Annie Lennox:
Posted from: LE2 0JE, UK
It is normal to feel periods of being ‘down in the dumps’ that last for a short time. Normal life events can cause these to happen. For example, when someone dies or you lose a job.
Clinical depression, on the other hand, is another event, in itself. It does not only last a week or two but is a deep dark hole, a lonely abyss, a black dog (as Churchill once said) that seems impossible to escape from. It is a dangerous medical condition that is caused by an imbalance in the chemicals of your brain. If it is not treated properly it can completely disrupt a persons life and sometimes leads to suicide.
Warning signs that depression has taken hold include being unmotivated, tired all the time and a flat feeling. As the depression becomes worse a person might not even want to be part of social activities that they once enjoyed. Sometimes they feel very lonely and alone, and often become reclusive. When depression becomes really deep a person might completely lose the will to work and have trouble with relationships. They tend to curl up in a safe house and want to not be bothered by anyone. The desire to live a happy and productive life can disappear, altogether.
There are ways to treat depression even when there seems to be no hope left. The first thing that needs to be done is to set up an appointment with the your GP, Nurse, private doctor or psychologist. They will ask you about your symptoms and how they are affecting your everyday life. Depression carries symptoms that are common in other medical conditions such as Cushing’s disease and hypothyroidism. This is a big reason why you need to see your doctor regardless of whether you think it is depression or not. If the doctor thinks you are dealing with depression then you might be referred to a specialist for more precise care.
Never get scared about starting medication such as antidepressants, anti-anxiety drugs or even anti-psychotics – they can turn out to be that one little thing that brings you life again. Also, don’t give up if your medication doesn’t seem to be helping. It might just mean you’re on the wrong dose or a less-suited drug. See your doctor as soon as you can and discuss your thoughts with him.
Depression is most often caused by poor genes. If you know someone in your family that has suffered with it then the chances of you becoming depressed are greatly multiplied. Brain chemistry is also a big cause of depression.
Major stressful events in life can lead to depression, as well. Trauma to a child and poor parenting techniques or traumatic experiences at school (for example) can also make depression more likely to popup in adulthood.
Some natural remedies can work really well for treating depression without the side effects of conventional medicines. With caution, St. John’s Wort can be a really effective natural method of treating depression; but be careful with this – if you are on any medication, such as antidepressants, talk to your Doctor or Pharmacist first. Passiflora Incarnata has properties that are similar to a tranquilizer and can also be used to combat depression with anxiety. Relaxation techniques can be useful in fighting off depression especially when the cause is anxiety.
Talk with your doctor about some of the many options you have.
Just do not sit idly by and let your life melt away. How do I know? Because I’m a living and unashamed testament of depression survival. Contact me if you want to find out more, or if you would just like a chat, leave a comment below…
Posted from: LE2 0JH, UK
The Twitter Microfiction ‘Wrong Rooms’ is set to reach it’s ultimate finale this weekend, with new updates already being published on twitter. The secret-author hinted on his personal feed that the ending would come ‘sometime’ this weekend.
This signals that the story will finally be wrapped up after several months of silence – the unknown author published a tweet from his personal account saying ‘time to lay this ghost to rest.’ Could this indicate the story is based on real events?
Shortly afterwards, the latest updates to Wrong Rooms were all published live on twitter within seconds of each other, indicating the ending has already been written. The question remains… why wait five months before picking up the story again? More intriguingly, there are strong rumours that a major publisher is attempting to secure a contract with the author.
Do you have any insight? Please leave your comment below. In the meantime, catch up with the story at www.twitter.com/wrongrooms
The story so far can be found at http://www.uselessdesires.co.uk/wrong-rooms
Posted from: LE2 0JE, UK
It’s Stress Awareness Day. There’s only an hour or so left but I wanted to mention it because Stress is misunderstood. The term ‘stressed out’ is over-used and people need to know more about what it really means so they can help themselves, friends, family and colleagues. I’ve been there and know how hard it was to manage.
I could write pages about this (and one day I will) but here are just a few points: Stress is not the same as pressure (a dangerous misconception, especially in a work environment); Stress can be terribly debilitating – physically and emotionally; it can stop you in your tracks and make everyday tasks difficult; a lack of awareness and understanding (within you/folk around you) makes the problem so much worse. Recognising it is half the battle. That sounds like a cliché but when I picked up a leaflet from the Glasgow Steps team everything made sense. Knowing what Stress does and learning the science behind it is fascinating and liberating. Getting through it and finding your way out the other side feels amazing. And if I hadn’t had so many problems with it I wouldn’t have even considered the path I’ve chosen now. The bad stuff makes the good stuff even better. I talked about this a little on Twitter today and got great feedback – tweets from people who have experienced similar problems, who are still living with Stress, and a ‘thank you’ or two for talking about it publicly. Is mentioning a weakness a good thing? I don’t know but I’m going with my gut instinct on this. I feel it’s an important issue and I wanted to mention it in case it helps someone realise what’s going on in their life. If you want more information, there was an excellent webcast this afternoon which is now archived to watch again, there are some helpful downloads on the NSAD website, and loads of useful stuff on the Glasgow Steps website. Anyway, that’s today’s Public Health Announcement over. If anyone wants to know more or just have a chat about it then please do get in touch.
Article Courtesy of Julie Broadfoot © 2010
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Cigarette smoking causes 87 percent of lung cancer deaths . Lung cancer is the leading cause of cancer death in both men and women . Smoking is also responsible for most cancers of the larynx, oral cavity and pharynx, esophagus, and bladder. In addition, it is a cause of kidney, pancreatic, cervical, and stomach cancers, as well as acute myeloid leukemia.
The health risks caused by cigarette smoking are not limited to smokers. Exposure to secondhand smoke, or environmental tobacco smoke (ETS), significantly increases the risk of lung cancer and heart disease in nonsmokers, as well as several respiratory illnesses in young children. (Secondhand smoke is a combination of the smoke that is released from the end of a burning cigarette and the smoke exhaled from the lungs of smokers.) The U.S. Environmental Protection Agency (EPA), the National Institute of Environmental Health Science’s National Toxicology Program, and the World Health Organization’s International Agency for Research on Cancer (IARC) have all classified secondhand smoke as a known human carcinogen—a category reserved for agents for which there is sufficient scientific evidence that they cause cancer. The U.S. EPA has estimated that exposure to secondhand smoke causes about 3,000 lung cancer deaths among nonsmokers and is responsible for up to 300,000 cases of lower respiratory tract infections in children up to 18 months of age in the United States each year.
Cigarette smoke contains about 4,000 chemical agents, including over 60 carcinogens. In addition, many of these substances, such as carbon monoxide, tar, arsenic, and lead, are poisonous and toxic to the human body. Nicotine is a drug that is naturally present in the tobacco plant and is primarily responsible for a person’s addiction to tobacco products, including cigarettes. During smoking, nicotine is absorbed quickly into the bloodstream and travels to the brain in a matter of seconds. Nicotine causes addiction to cigarettes and other tobacco products that is similar to the addiction produced by using heroin and cocaine.
Smoking harms nearly every major organ of the body. The risk of developing smoking-related diseases, such as lung and other cancers, heart disease, stroke, and respiratory illnesses, increases with total lifetime exposure to cigarette smoke. This includes the number of cigarettes a person smokes each day, the intensity of smoking (i.e., the size and frequency of puffs), the age at which smoking began, the number of years a person has smoked, and a smoker’s secondhand smoke exposure.
Smoking cessation has major and immediate health benefits for men and women of all ages. Quitting smoking decreases the risk of lung and other cancers, heart attack, stroke, and chronic lung disease. The earlier a person quits, the greater the health benefit. For example, research has shown that people who quit before age 50 reduce their risk of dying in the next 15 years by half compared with those who continue to smoke. Smoking low-yield cigarettes, as compared to cigarettes with higher tar and nicotine, provides no clear benefit to health.
For additional information on quitting smoking, why not check out the We Quit Website? Or for great support or information, and to get a free Quit-Kit, visit the NHS Smoke-Free website: http://smokefree.nhs.uk/