Invisible illness sufferer is often labeled as lazy

Unfortunately, people often judge others by what they see, concluding that they are either capable or incapable based on the way they look. It may, therefore, be difficult to understand someone who “looks” fine, but acts incapable. All too often judgments are made that the patient cannot be ill, because they do not look sick. The life of an invisible illness sufferer is riddled with what may feel like a barrage of insensitive encounters and whisperings.

Comments are often made as to why they are often absent from the job or even tardy, why they no longer call or are available for social activities with friends, why they often seems short-tempered, withdrawn or depressed, or why they lay in bed or the couch so often.

The invisible illness sufferer is often labeled as lazy while disease wreaks havoc inside their body. When trying to explain their disability, sufferers are frequently met with the response, “but you look so good.” This is, perhaps, one of the most frustrating things to hear for those who suffer with these invisible illnesses. Unsolicited advice on how to get better only adds to the exasperation.

Here is a great graphic on what not to say to someone with a chronic illness and gives insight to the ways in which they feel misjudged. Please feel free to copy this image, and share them with your social media networks also please leave a comment below if your also a ‘spoonie’ or have an invisible/chronic illness.

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#Fibromyalgia Awarness by Brown Earth

Fibromyalgia does not discriminate.

Susan Flannery, four-time Emmy Award-winning The Bold and the Beautiful actress says she takes her condition one day at a time.

Grammy-winning Irish singer song writer Sinead O’Connor retired from music in 2003 due to her condition but has since returned, striving to find enjoyment.

Michael James Hastings was forced into retirement due to his condition but he’s since become a spokesperson and is working on a PhD.

It is thought Florence Nightingale, a pioneer in health during the Victorian period, had the condition triggered by an infection.

September 2017 Lady Gaga had to cancelled her European tours, because of “severe physical pain that has impacted her ability to perform”

I was diagnosed with fibromyalgia last year although I’ve probably had it for many years.

It is very common for the diagnosis to take a few (sometimes many) years as the symptoms can be vague and similar to other conditions. Fibromyalgia is a chronic (long term) condition characterised by widespread body pain and extreme fatigue. Each sufferer of fibromyalgia experiences the condition differently.

What are the symptoms of fibromyalgia?

  • Pain – usually constant and widespread but may be worse in certain places such as the back and neck. The pain can be sharp, stabbing or dull in nature. Sometimes there are ‘trigger’ points from which pain radiates.
  • Fatigue – a feeling of over whelming tiredness, not relieved by sleep.
  • Sleep problems – some people will suffer from insomnia (problems falling asleep or broken sleep), other people will sleep for a good length of time but due to a lack of restorative sleep (deep, stage 4 sleep) will awake unrefreshed.
  • Hypersensitivity – including hyperalgesia (extreme sensitivity to pain), allodynia (experiencing pain from light touch) and sensitivity to smells, tastes and brights lights etc
  • Other symptoms include muscle stiffness and spasms, headaches, constipation, diarrhoea, feeling too hot or too cold, dizziness, clumsiness, paraesthesia (pins and needles or numbness), mental health symptoms and an inability to think clearly (also known as ‘fibro fog’).

More research is always being done into understanding the condition better so that it can be managed more effectively in the future or maybe even cured one day.

For more information see NHS Choices and Fibromyalgia Action UK.

 

New research shows how alcohol damages DNA and increases cancer risk

Scientists have shown how alcohol damages DNA in stem cells, helping to explain why drinking increases your risk of cancer, according to research part-funded by Cancer Research UK and published in Nature today.

“While some damage occurs by chance, our findings suggest that drinking alcohol can increase the risk of this damage.” – Professor Ketan Patel

Much previous research looking at the precise ways in which alcohol causes cancer has been done in cell cultures. But in this study, researchers have used mice to show how alcohol exposure leads to permanent genetic damage.

Scientists at the MRC Laboratory of Molecular Biology (link is external), Cambridge, gave diluted alcohol, chemically known as ethanol, to mice. They then used chromosome analysis and DNA sequencing to examine the genetic damage caused by acetaldehyde, a harmful chemical produced when the body processes alcohol.

They found that acetaldehyde can break and damage DNA within blood stem cells leading to rearranged chromosomes and permanently altering the DNA sequences within these cells. It is important to understand how the DNA blueprint within stem cells is damaged because when healthy stem cells become faulty, they can give rise to cancer.

These new findings therefore help us to understand how drinking alcohol increases the risk of developing 7 types of cancer including common types like breast and bowel.

Professor Ketan Patel, lead author of the study and scientist, part funded by Cancer Research UK, at the MRC Laboratory of Molecular Biology, said:

“Some cancers develop due to DNA damage in stem cells. While some damage occurs by chance, our findings suggest that drinking alcohol can increase the risk of this damage.”

The study also examined how the body tries to protect itself against damage caused by alcohol. The first line of defence is a family of enzymes called aldehyde dehydrogenases (ALDH). These enzymes break down harmful acetaldehyde into acetate, which our cells can use as a source of energy. Worldwide, millions of people, particularly those from South East Asia, either lack these enzymes or carry faulty versions of them. So, when they drink, acetaldehyde builds up which causes a flushed complexion, and also leads to them feeling unwell.

In the study, when mice lacking the critical ALDH enzyme – ALDH2 – were given alcohol, it resulted in four times as much DNA damage in their cells compared to mice with the fully functioning ALDH2 enzyme.

The second line of defence used by cells is a variety of DNA repair systems which, most of the time, allow them to fix and reverse different types of DNA damage. But they don’t always work and some people carry mutations which mean their cells aren’t able to carry out these repairs effectively.

Professor Patel added:

“Our study highlights that not being able to process alcohol effectively can lead to an even higher risk of alcohol-related DNA damage and therefore certain cancers. But it’s important to remember that alcohol clearance and DNA repair systems are not perfect and alcohol can still cause cancer in different ways, even in people whose defence mechanisms are intact.”

This research was funded by Cancer Research UK, Wellcome and the Medical Research Council (MRC).

Professor Linda Bauld, Cancer Research UK’s expert on cancer prevention, said:

“This thought-provoking research highlights the damage alcohol can do to our cells, costing some people more than just a hangover.

“We know that alcohol contributes to over 12,000 cancer cases in the UK each year, so it’s a good idea to think about cutting down on the amount you drink.”

 

  • Alcohol isn’t thought to cause blood cancers, but these stem cells offer a valuable way for scientists to investigate what’s happening to the DNA inside.
  • Alcohol causes 7 types of cancer – mouth; upper throat; laryngeal; oesophageal; breast; liver and bowel.

Hello My Name is Fibromyalgia

Hi….My Name is Fibromyalgia, and I’m an Invisible Chronic Illness. I am now attached to you for life. Others around you can’t see me or hear me, but your body FEELS me. I can attack you anywhere, anyhow, anytime I please. I can cause severe pain or, if I’m in a good mood, I can just cause you to ache all over (like having flu!).Remember when you and Energy ran around together and had fun? I took Energy from you, and gave you Exhaustion. Try to have fun now! I also took Good Sleep from you and, in its place, gave you Brain Fog. You wake up each morning, feeling as if you’ve been run over by a truck. I can make you tremble internally, or make you feel cold or hot, when everyone else feels normal.

Fibromyalgia fav thing of all, is letting you do things (because often, you are capable) Such as, go to the gym, clean the windows, write a long report, pick something heavy up, then It loves to reward you..with lots of pain and stiffness, AND to make sure it is widespread and varied…..bone, muscles, ligaments, joints, nerves. Just for good measure, throws in some tiredness and/or exhaustion, let’s not forget the RSI’s (repetitive strain injuries) or RLS (restless leg syndrome).

Now you have to suffer with side effects AND Fibromyalgia. AND it doesn’t stop there, I can’t let you have too much of an easy ride. I give you plenty of associated symptoms as well….problems with your bladder, bowel, in fact most of your internal organs. Plus sensitivity to sound, light, temperature etc., as well as MANY other health problems, that I can think of giving you! In desperation, you try a TENs unit. Spend lots of money on massages, chiropractic sessions, and other alternative treatments and medicines. The doctor says, if you just sleep and exercise properly I will go away. You’re told to think positively, poked, prodded, and experimented with. But MOST OF ALL, you’re not taken as seriously as you feel, when you cry to the doctor, about how debilitating life is every day.

Family and friend get upset, when you snub their social events. This could be for many reasons….bad health, pain, tiredness, loss of confidence, or simply that you can’t find the energy. Getting ready to go out is too much like hard work, even though part of you would love to go!

You didn’t ask for Fibromyalgia I chose you for various reasons.

After the shock of loosing my best friend who was my Daddy at the young age of 64 to Prostate Cancer in 2013 – He was Ex Army and Ex West Midlands Police – whilst I was still Nursing and studying at Uni 4 hours away – a year later my body decided to grieve.

Not the usual ‘screaming’ constant tears’ depression – but I had all that too and still do. My body slowly started acting very oddly, as i could never put it down to one thing, instead I ignored it and carried on with life.

At a random MOT check up at DRs late 2014 they were concerned I may have MS as had back then slight shakes in right hand, as usual i put it down to just carried heavy bags as not long off duty. But she was concerned enough to send me for tests. A few days before Christmas the Dr called me herself to say thankfully its not MS! But wanted me to have a few tests in case was Parkinson. Not the type of news you want to hear before Christmas.

2015 – followed lots of tests and ooodles of blood tests and finally told I had Essential Tremors ( or as i call it ET, except it doesn’t go home like the film)

Essential Tremor is a nerve disorder characterized by uncontrollable shaking, or “tremors,” in different parts and on different sides of the body. Areas affected often include the hands, arms, head, larynx (voice box), tongue, and chin. Its more common than Parkinson’s yet not many have heard about it, me included.

They also found black dots right side of my brain – brain lesions (black abnormalities)

A brain lesion is an abnormality seen on a brain-imaging test, such as magnetic resonance imaging (MRI) or computerized tomography (CT). On CT or MRI scans, brain lesions appear as dark or light spots that don’t look like normal brain tissue. The symptoms are  – Headaches. Neck pain or stiffness. Nausea, vomiting, and lack of appetite. Vision changes or eye pain. Changes in mood, personality, behavior, mental ability, and concentration. Memory loss or confusion and Seizures. And told I have Primary Raynaud’s disease

Sadly whilst under going more tests I started having seizures which occur exclusively during sleep. This is especially true for a particular type of epilepsy known as benign focal epilepsy – yet was told I don’t have epilepsy, so Ive more tests to go through in 2018.

Two days before Christmas 2017 was told I have  Fibromyalgia Disease!!! Thanks NHS great christmas gift NOT!!

Brain Lesions Prognosis. … However, with most brain lesion types, the more brain tissue that is damaged or killed by a brain lesion, the worse the prognosis is for the person – so I’m checked often to see if any changes.

For now have to cope with Fibromyalgia which is is a long-lasting or chronic disorder that causes muscle pain and fatigue (feeling tired). The symptoms of fibromyalgia are pain and tenderness throughout your body and the sad thing about it is – there is nothing you can take to help ease the pain.

The beginning of 2018 starts with an appointment at QE Hospital …..

When I lost my Daddy I never in a million years thought from stress all this would start to happen to me, but it has and I can;t prevent it. Life is a test and i guess when we think were starting to handle or cope with one lot of pain another is then sent more painful and crippling.

I bumped into someone I used to work in Nursing with – I was having a very bad day, every part of my body was in pain, had headache and felt so depressed, was freezing outside and not long slipped on the path so leg in agony. When I told her I had depression she said ”Your not depressed you always have a smile on your face”. Crazy to think folk even now think to have a mental illness you have to be crying daily or constantly feeling suicidal. I smiled – said nothing. Was so tired only came out for milk for hot brew. She asked me what fibromyalgia was. I just covered the basic’s – constantly tired no energy, back back ect ‘00000w I have bad back and warn out after 12 hour shift’ Tried to explain I couldn’t get up, get dressed and then make a cuppa like I used to let alone walk to work, do 12 hour shift walk home …… but she was convinved she now had fibromyalgia. I just suggested she see her dr. She called few days later – guess what? She didn’t have fibromyalgia, her back was fine.

But if your nodding at the symptoms fibromyalgia kindly gives, then I suggest you visit your DR.

Comment underneath if you or someone you know has this chronic very painful fibromyalgia – keep warm, stay safe – your not alone.

 

Do you have Lady Gaga’s mysterious condition – Fibromyalgia

In September 2017 Lady Gaga has cancelled her European tour, because of “severe physical pain that has impacted her ability to perform”. She has fibromyalgia, and has made a Netflix documentary, Gaga: Five Foot Two, to raise awareness about this long-term condition.

A statement says:

“She plans to spend the next seven weeks proactively working with her doctors to heal from this and past traumas that still affect her daily life and result in severe physical pain in her body. She wants to give her fans the best version of the show she built for them when the tour resumes.”

It is a condition that is hard to diagnose, explain or treat. And many people with the condition say they struggle to get medical professionals to take their symptoms seriously. FMS is a long-term condition that causes widespread pain. Its debilitating symptoms include extreme tiredness, muscle aches, difficulty sleeping and concentrating; headaches and bloating are also common. In Lady Gaga’s case, it is easy to see how she may have initially put these problems down to touring and performing. But the fatigue and pains persist even when you rest, and can be far more draining than normal tiredness.

People with FMS often notice that a fairly innocuous injury, such as stubbing a toe, hurts more intensely and for longer than it should. And even a light touch that shouldn’t hurt at all can be experienced as an unpleasantly painful sensation. The fatigue means you need to sleep a lot but wake up feeling groggy, stiff and achy. Even mental processes feel sluggish, so it becomes a huge effort to concentrate or learn anything new, and your speech may sound slow and a bit muddled.

FMS is typically diagnosed in people just like Lady Gaga: female and aged 30-50 (she is 31).

I was diagnosed December 2017. After also being diagnosed with Brain Lesions (after finding black dots on my brain) this brought on a year of Scans, MRI and much more –  diagnosed with Essential Tremors (ET) part of the Parkinson’s family and Raynaud’s Disease. All these on there own are very unpleasant and very painful. Yet all together and now diagnosed with FMS, my body no longer feels mine with the constantly daily pain and struggles to make it through the day. Yet I’m still positive and always smile …. amazing what a fake smile hides!

Today saw someone I used to work with in Nursing who said ‘I can’t have  chronic pain with because I always have a smile on my face’. Just because you can’t see a disease doesn’t mean it’s fake

As there is no specific cure, living with FMS means being aware of triggers (stress, bereavement, other illnesses or surgery, weather changes, travel and sleep deprivation, for instance) that can cause a flare-up, and finding a way of living, working, exercising and eating that works for you. Exercise, physiotherapy, adjustments in the workplace, counselling and stress management techniques can help. Drug treatment with anti-inflammatories, antidepressants and drugs used in the treatment of epilepsy have all been tried, but there is no single easy fix. However, you cannot predict how long recovery may take, or whether symptoms will recur.

There is probably some disorder in the way pain is processed in the brain in people with the condition. And there is a cycle in which pain makes you depressed and anxious and this makes the experience of pain worse.

Do you have FMS or have know someone who does? Comment below

 

 

When you are depressed or anxious ….

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