Fibro – GAGA

Lady Gaga is well known for her unconventional…um…ways.

She is less known as a chronic pain sufferer.

Lady Gaga recently opened up about her chronic pain. (It’s been said that she suffers from Fibromyalgia but I have not found any confirming sources) She shared some of her methods for easing her pain in a series of posts on Instagram: some unusual and some just like ours.

Lada Gaga recently shared on Instagram details about her “frustrating” battle with chronic pain, along with two photos of herself getting treatment.

 

After an outpouring of support from her Instagram followers, Lady Gaga posted another photo of herself on Friday, showing the singer sitting in an infrared sauna wrapped in an emergency blanket. It’s a remedy she uses to relieve pain and inflammation.

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“I was so overwhelmed by the empathy, confessions & personal stories of chronic pain in response to my previous post I thought what the hell. Maybe I should just share some of my personal remedies I’ve acquired over the past five years. Everyone’s body and condition is different U should consult w ure Dr. but what the heck here we go!” she wrote.

“When my body goes into a spasm one thing I find really helps is infrared sauna. I’ve invested in one. They come in a large box form as well as a low coffin-like form and even some like electric blankets! You can also look around your community for a infrared sauna parlor or homeopathic center that has one.

“I combine this treatment with marley silver emergency blankets (seen in the photo) that trap in the heat and are very cheap, reusable and effective for detox as well as weight loss!”

Lady Gaga likes to alternate between hot and cold therapy.

“In order to not overheat my system and cause more inflammation i follow this with either a VERY cold bath, ice bath (if u can stand it, it’s worth it) or the most environmentally savvy way is to keep many reusable cold packs in the freezer (or frozen peas’ n carrots’!) and pack them around the body in all areas of pain,” she wrote.

Lada Gaga reportedly suffers from synovitis, a painful inflammation of the joints, that apparently stems from a hip injury she suffered during a concert.

After years of hiding her chronic pain from fans and even her own staff, Lady Gaga had surgery in 2013. She is now one of the few celebrities to speak openly about her experience with chronic pain.

Luckily for me, I recently found an online deal from LivingSocial.com.au that entitles me to a 90-Minute Flotation Session followed by an Infrared Therapy Session. Hopefully, I’ll be be one of these people who can share their successful methods of dealing with this pain.

“Hope this helps some of you, it helps me to keep doing my passion, job and the things I love even on days when I feel like I can’t get out of bed. Love you and thank you for all your positive messages,” wrote Lady Gaga.

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International Day of Yoga

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Yoga is a 5,000-year-old physical, mental and spiritual practice, with its origin in India, which aims to transform both body and mind.

international-yoga-day-logo-300x429On December 11 in 2014, the United Nations General Assembly declared June 21 as the International Day of Yoga. The declaration came after the call for the adoption of 21 June as International Day of Yoga by Honourable Indian Prime Minister, Mr. Narendra Modi during his address to the UN General Assembly on September 27, 2014 wherein he stated: “Yoga is an invaluable gift of India’s ancient tradition. It embodies unity of mind and body; thought and action; restraint and fulfilment; harmony between man and nature; a holistic approach to health and well-being. It is not about exercise but to discover the sense of oneness with yourself, the world and the nature.” In suggesting June 21, which is the Summer Solstice, as the International Day of Yoga, Mr. Narendra Modi had said that, “the date is the longest day of the year in the Northern Hemisphere and has special significance in many parts of the world.”

Yogi and mystic, Sadhguru notes the importance of this day in the yogic tradition: “On the day of the summer solstice, Adiyogi [the first yogi] turned south and first set his eyes on the Saptarishis or Seven Sages, who were his first disciples to carry the science of yoga to many parts of the world. It is wonderful that June 21 marks this momentous event in the history of humanity.”

FYI: 175 nations, including USA, Canada and China co-sponsored the resolution. It had the highest number of co-sponsors ever for any UNGA Resolution of such a nature.

95. yogaWhat better reason to do you need to give yoga a try? Tomorrow?

As most of us know (whether we do it or not!), exercise is an important part of managing fibromyalgia symptoms. Staying physically active can relieve pain, stress, and anxiety. The key is to start slowly. Begin with stretching and low-impact activities, such as walking, swimming or other water exercises, or bicycling. Low-impact aerobic exercises such as yoga can also be helpful. (Remember: prior to starting any exercise routine, or if you want to increase the intensity of your exercise, talk with your doctor.)

Now, yoga isn’t for everyone but exercise is! So why is exercise important for fibromyalgia?

  • Studies show that exercise helps restore the body’s neuro-chemical balance and triggers a positive emotional state. Not only does regular exercise slow down the heart-racing adrenaline associated with stress, but it also boosts levels of natural endorphins. Endorphins help to reduce anxiety, stress, and depression.
  • Exercise acts as nature’s tranquilizer by helping to boost serotonin in the brain. Serotonin is a neurotransmitter in the brain that scientists have found to be related to fibromyalgia. While only a small percentage of all serotonin is located in the brain, this neurotransmitter is believed to play a vital role in mediating moods. For those who feel stressed out frequently, exercise will help to desensitize your body to stress, as an increased level of serotonin in the brain is associated with a calming, anxiety-reducing effect. In some cases it’s also associated with drowsiness. A stable serotonin level in the brain is associated with a positive mood state or feeling good over a period of time. Lack of exercise and inactivity can aggravate low serotonin levels.
  • A study, at the Georgetown University Medical Centre in Washington, D.C., suggests that exercise may improve memory in women with FM. Decreased brain activity, due to aerobic exercise, suggests that the brain is working more efficiently. The researchers suggest that one of the benefits of exercise for fibromyalgia patients is that it may streamline brain functioning. It may help free up brain resources involved in perceiving pain and improve its ability to hold on to new information. The findings may help explain why regular exercise decreases pain and tenderness and improves brain function in people with fibromyalgia. (These findings were presented at a medical conference. They should be considered preliminary as they have not yet undergone the “peer review” process, in which outside experts scrutinize the data prior to publication in a medical journal.)

What Are Other Benefits of Exercise for Those With Fibromyalgia?

chronic comic 163Regular exercise benefits people with fibromyalgia by doing the following:

  • burning calories and making weight control easier
  • giving range-of-motion to painful muscles and joints
  • improving a person’s outlook on life
  • improving quality of sleep
  • improving one’s sense of well-being
  • increasing aerobic capacity
  • improving cardiovascular health
  • increasing energy
  • placing the responsibility of healing in the hands of the patient
  • reducing anxiety levels and depression
  • relieving stress associated with a chronic disease
  • stimulating growth hormone secretion
  • stimulating the secretion of endorphins or “happy hormones”
  • strengthening bones
  • strengthening muscles
  • relieving pain

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Lifestyle Management With a Chronic Illness

by Harper Spero for HEALTH PERCH (with parenthesis by me!)

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During the first ten years of my life, my mom was on a mission to figure out why I had chronic ear infections, eczema, abscesses, and ongoing dental issues. Finally, when I was 11, I was diagnosed with Hyper-IgE, a chronic illness.

The National Institute of Health defines a chronic illness as a long-term health condition that does not have a cure. Some examples of chronic illnesses are epilepsy, heart disease, diabetes, asthma, cancer, HIV, Alzheimer’s disease and dementia, multiple sclerosis, Parkinson’s disease, cystic fibrosis, Crohn’s disease, and arthritis (and Fibromyalgia, Myalgic Encephalomyelitis, Chronic Fatigue Syndrome and other related illnesses).

While most of these chronic diseases are familiar, there are hundreds of lesser-known diseases, including Hyper-IgE (and Fibromyalgia, Myalgic Encephalomyelitis, Chronic Fatigue Syndrome and other related illnesses).

Hyper-IgE syndromes (HIES) are rare, primary immune deficiencies characterized by elevated serum IgE, dermatitis, and recurrent skin and lung infections. When I received the diagnosis, I had no idea what that meant or what to make of it. (Sound familiar?) I now had something to hang my hat on—but what exactly was it?

I was on medications here and there, dealt with many bumps along the way, and changed my diet numerous times, but never actually took complete control of my health. I chose to treat the symptoms as they arose instead of treating the illness as a whole. When I was 27, a cyst the size of a golf ball was discovered in my right lung. Shortly after having surgery to remove a quarter of my lung, I realized I needed to take complete control of my health. I didn’t want to be defined by my illness, but I also knew I couldn’t hide anymore. I knew I needed to evaluate my health and wellbeing and figure out what lifestyle changes I could make.

So I took a time out. I evaluated all facets of my life including environment, work, social life, diet, exercise, and even the way I processed information. This evaluation brought me to these 10 steps that can apply to managing most chronic illnesses. All of these points have helped to vastly improve my outlook and to move me in the right direction towards a healthier, well-balanced, satisfying life.

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  1. Find a team of experts

When you receive a diagnosis from a test result, a medical exam or a conversation with a doctor, it’s important to determine the best people to add to your health and wellness team. A key person should be one doctor that specializes in your specific chronic illness and with whom you feel comfortable, confident, and safe.

Another key component is finding specialists who may be able to support you with the different aspects of managing life with the chronic illness. This can be a team including (but not limited to) a nutritionist, acupuncturist, massage therapist, health coach, or physical therapist.

  1. Empower yourself

Your doctor can provide a ton of information that will allow you to educate yourself. This is the time to take ownership of this newfound challenge you’re facing. It’s not always easy, but you have control over the way you manage your life and can educate yourself with the resources available.

Be wary when reading articles about your chronic illness. It’s easy to assume one bad thing that happened to a single person could happen to you. Living your life in a constant state of fear won’t allow you to enjoy the life you were given.

  1. Create or join a supportive community

When facing a new diagnosis, it’s often a struggle to determine who to talk to and who to relate to. Find or create a like-minded group of people (as small or big as you’d like) that are experiencing similar circumstances. It may be beneficial to bounce ideas off of one another to avoid feeling alone. There are hundreds of Facebook pages for chronic illnesses, message boards, and online platforms for support. Additionally, there are meet-ups and other groups that get together regularly to discuss chronic illnesses. These add a personal, face-to-face element of support for those who are going through similar situations.

  1. Start a dialogue with your loved ones

Family and friends are there to support and love you unconditionally. It’s important to find the words to tell them what’s going on with you, but also to help them help you. Everyone reacts to these types of life situations differently—some take it much harder than others. Some people are quick to jump to conclusions and determine how they think you should manage your illness. One of the best resources for those with a chronic illness and for their family is a How to Be a Friend to a Friend Who’s Sick by Letty Cottin Pogrebin. While the book provides amazing tips for dealing with cancer specifically, it’s also relevant to all chronic illnesses.

Surround yourself with people who inspire, motivate, and support. You have the ability to choose who you want in the movie of your life—those who play a leading role, others who are extras, and the final group that doesn’t make the cut. Remove toxic relationships. They can serve as an added burden when managing life with a chronic illness.

  1. Don’t let your illness define you

64. More to meIt’s really easy to get consumed by doctor’s appointments and the overall maintenance of managing a chronic illness. It’s also extremely important that your illness does not define you or your life. You should always have the ability to allow fun, pleasure, and happiness into your world. In Danea Horn’s book Chronic Resilience, she states, “If you ‘own’ your illness, that probably means it has become your identity … you give a level of importance to the disease—one it does not deserve.” Remind yourself what is important to you and what you enjoy doing most. Be sure to implement those things into your daily routine.

  1. Be conscious of your diet

(Okay, this is where I really, REALLY suck!) Evaluate the foods that you eat. Do they benefit your health or do they drain you? Amie Valpone, founder of TheHealthyApple.com says, “Eating for wellness is a huge topic these days. Food sensitivities are increasing and people are understanding certain healthy foods (such as lemon, cilantro, etc.) are causing inflammation in their bodies along with the major toxic triggers such as gluten, dairy, soy, and sugar.” Valpone suggests sticking with one-ingredient organic foods such as raw nuts and seeds, beans, and organic animal products.

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  1. Keep fitness top of mind

95. yogaThis doesn’t mean you need to be at the gym every single day, but it does mean every bit of physical activity can help. Staying active helps the body function better and can quiet the mind. Fitness can include walking, running, spinning, rowing, yoga, weights, swimming, and more. Everyone has his or her preferred method of physical activity. Try out different gyms, studios, machines, classes, or teachers to determine what’s the right fit for you. Just because one person loves yoga doesn’t mean everyone else does. There are plenty of podcasts, apps, and online video platforms that provide exercises you can do in the comfort of your home or office.

  1. Give yourself a break

Managing life with a chronic illness can be exhausting. Keeping track of medications, doctor’s visits, and ongoing symptoms is nothing short of daunting. “We beat ourselves up for the way our body is letting us down,” Horn says. It’s important to cut yourself some slack and understand what you’re going through isn’t meant to be easy and there will be forks in the road. Sometimes your body isn’t going to function the way you’d ideally like it to and it’s imperative to be mindful and accepting of that. Your mind and body will benefit.

  1. Stay organized

With bills, prescriptions, doctor’s appointments, vitamins, and more to keep track of, staying organized is vital when managing your chronic illness. Find the best way to stay on top of your calendar. Google Calendar or an old-fashioned calendar/datebook can be helpful to keep track of when you start a medication, doctor’s visits, and symptoms.

  1. Give back

Sometimes it’s hard to imagine, but there are people in worse shape than you. Another person’s chronic illness may be getting the worst of them, they may be struggling financially, or they don’t have any online or offline support. These are likely the people who may not reach out for help but would appreciate any bit of support you can provide. Whether it’s virtual or in person, any way you can give back to those facing a chronic illness will not only be appreciated by the recipient but also extremely rewarding for you.

There is no question that living with a chronic illness can be challenging. Take ownership of the aspects of your life that you do have control of and you may reap the benefits of this empowerment.

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Making Awareness Day Personal

For 2012, 2013 and 2014, I went BIG for Fibromyalgia Awareness Day. This year, I’ll admit to dropping the ball. I’m tired, physically and emotionally. I’m tired of fighting the world. So this year, I’ve been fighting for me!

I’m sorry if you feel like I have let you down and not been there to support you.

I made this video (quite a while ago) because I am lucky enough to have a Mommy who loves me and tries to understand. (I’m not so sure about the rest of the family.) But, because of this, it upset me so much when I hear from so many of you that you don’t have the support and understanding you need. Friends and family are supposed to be there for whenever you need them. Most days, I get a message or comment from some-one who is lacking support from their nearest and dearest. Sometimes, it’s because you hide your pain, or you haven’t asked for help. Sometimes it’s because they just don’t get it. 

I’m hoping that presenting these people with this video might help.

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Three Times a Charm – ThunderClap!

If you follow my Twitter or Facebook page, you will know that I am supporting and promoting May Twelfth‘s Thunderclap ‘Tell the World!

What is Thunderclap?

Thunderclap is a tool that lets a message be heard by saying it together. When we reach our goal number, Thunderclap will share the same message on EVERY supporters’ Twitter and/or Facebook page at the same time! You and others will share the same message together, spreading an idea through Facebook and Twitter that cannot be ignored!

For example:

Click on this picture to support and promote the Thunderclap.

Click on this picture to support and promote the Thunderclap.

What is THIS Thunderclap?

Firstly, this is NOT a Facebook page or website specific project – so I am hoping that this will be supported by ALL of us!

Click on this picture to support and promote the Thunderclap.

Click on this picture to support and promote the Thunderclap.

The message will be published on every supporters’ Facebook page and/or Twitter feed (if (WHEN) we have reached the goal number) on May 12, 12:00 PM EDT. Here’s the world-wide times (yes, I know it’s a small picture — just click on it to enlarge):

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What Can YOU do to Help?

To support the THUNDERCLAP personally, click the link then you can:

  • add more social reach by supporting with Twitter or Facebook; and/or
  • promote by inviting friends by sharing or tweeting.

Our goal: to no longer be ignored! Last year, we reached 768 supporters – let’s double that!) Just think…we could be trending in May!

I really hope you jump on board…and I hope this campaign can bring some major awareness!

Many people (and doctors) do not know what it is (or doubt its existence) – it is time to make people aware!

Help take the mystery out of Fibromyalgia, and help spread something more powerful: HOPE!

Please share, tweet, re-blog, etc. Let’s get as much coverage as possible!

What’s Happening for International Awareness Day 2015

I’ve dropped the ball this year when it comes to International Fibromyalgia Awareness Day (it’s been hard enough keeping my own s#!t together…know what I mean?) but that doesn’t mean others haven’t been picking up the slack.

CN Tower, Toronto, Ontario, CanadaHere is some of the stuff going on near you:

The CN Tower in Toronto, Ontario, Canada will light up blue, purple and green as part of International May 12th Light Up the Night. Each light show will run for 8 minutes at the top of every hour. You can watch via Toronto’s skyline webcam located at http://toronto.webcampak.com

Toronto City Hall CanadaCity Hall in Toronto, Ontario, Canada will be lighting up blue and purple.

The City Halls of Brampton, Mississauga and Ottawa will all light up AND the day will be proclaimed in each city.

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Halifax City Hall in Nova Scotia, Canada and BC Place Stadium in Vancouver BC…

City Hall, Halifax, Nova Scotia, Canada

BC Place Staium, Vancouver

Canada Place – Sails of Light, Convention Centre West, Jack Poole Plaza and Science World in British Columbia; Banbridge, Armagh Gaol, Craigavon Civic Centre in Northern Ireland; Charlottetown PEI City Hall and the Peace Bridge between the Canada and US border will be lit with all three colours.

Brighton Sea Life CentreThe Sealife Centre in Brighton UK will be lit up during the day.

ASpam Building, Aomori, Japan (1)In Japan, Aomori Prefecture Tourist Center, Aspam, will be blue on May 12th, again. In addition, in Akita Prefecture, there will also be blue light up event happening for the first time at the CFS/ME doctor, Dr. Miura`s satellite clinic in Sotoasahikawa on May 12-13th.

swedenBorås City, Sweden has a huge accumulator tank for warm district heating water. It will be lit up blue with 5 000 led lights.

perthTo my own country, Council House in Perth, WA, Australia will light up.

And AAMI Park in Melbourne…

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You can see a growing list of events HERE.

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Chronically Quiet

70. never aloneMany of us are lonely and alone…and it’s sad.

But let’s look at some of the great revelations and benefits found in silence and solitude that other people (smartphone users check their device every 6.5 minutes, which works out to mean around 150 times a day) miss out on. Silence has been replaced with a cacophony of communication, and solitude with social media.

Here are ten (as described by Thai Nguyen):

1.       Bypassing Burnout:

Too often our culture parallels self-worth with productivity levels. Whether it’s asking what our country can do for us, or what we can do for our country, the question remains—what is left to be done? It’s a one-way ticket to burnout.

Solitude allows for a break from the tyrant of productivity. What’s more is that doing nothing helps with doing much rather than being in opposition. Promega is a company with on-the-job “third spaces” where employees are able to take solitude breaks and meditate in natural light. This has resulted in numerous health benefits as well as improved productivity levels for the company.

2.       Heightened Sensitivity (ok, maybe we don’t want this one):

For many, attempting ten days of silence would be akin to walking on water. Vipassana silent retreats are exactly that; participants are instructed to refrain from reading, writing, or eye contact.

One hundred scientists went on a retreat for research and noted that shutting off the faculty of speech heightens awareness in other areas. Beginning with breathing, that focus and sensitivity is then transferred to sights, sounds, sensations, thoughts, intentions and emotions.

3.       Dissolving Tomorrow’s Troubles:

Alan Watts argues that our frustration and anxiety is rooted in feeling and being disconnected—living in the future or the past is nothing but an illusion.

Silence brings our awareness back to the present. This is where concrete happiness is experienced. Watts makes the distinction between our basic and ingenious consciousness; the latter makes predictions based on our memories, which seem so real to the mind that we’re caught in a hypothetical abstraction. It plans out our lives with an abstract happiness, but an abstract happiness can also be a very real disappointment.

The future falls short of what the present can deliver. Silence and solitude can help immerses us back in the present moment.

2014 1. nature4.      Improves Memory (fibro what?):

Combining solitude with a walk in nature causes brain growth in the hippocampus region, resulting in better memory.

Evolutionists explain that being in nature sparks our spatial memory as it did when our ancestors went hunting—remembering where the food and predators were was essential for survival. Taking a walk alone gives the brain uninterrupted focus and helps with memory consolidation.

5.       Strengthens Intention and Action:

Psychologist Kelly McGonigal says during silence, the mind is best able to cultivate a form of mindful intention that later motivates us to take action.

Intentional silence puts us in a state of mental reflection and disengages our intellectual mind. At that point McGonigal says to ask yourself three questions:

“If anything were possible, what would I welcome or create in my life?”

“When I’m feeling most courageous and inspired, what do I want to offer the world?”

“When I’m honest about how I suffer, what do I want to make peace with?”

Removing our critical minds allows the imagination and positive emotions to build a subconscious intention and add fuel to our goals.

McGonigal explains, “When you approach the practice of figuring this stuff out in that way, you start to get images and memories and ideas that are different than if you tried to answer those questions intellectually.”

6.       Increases Self-Awareness:

In silence, we make room for the self-awareness that allows us to be in control of our actions, rather than under their control. The break from external voices puts us in tune to our inner voices—and it’s those inner voices that drive our actions. Awareness leads to control.

We must practice becoming an observer of our thoughts. The human will is strengthened whenever we choose not to respond to every actionable thought.

7.       Grow Your Brain (oh, another one that really couldn’t hurt any of us!):

The brain is the most complex and powerful organ, and like muscles, benefits from rest. UCLA research showed that regular times set aside to disengage, sit in silence, and mentally rest, improves the “folding” of the cortex and boosts our ability to process information.

Carving out as little as 10 minutes to sit in our car and visualize peaceful scenery (rainforest, snow-falling, beach) will thicken grey matter in our brains.

8.       “A-Ha” Moments:

The creative process includes a crucial stage called incubation, where all the ideas we’ve been exposed to get to meet, mingle, marinate – then produce an “A-ha” moment. The secret to incubation? Nothing. Literally. Disengage from the work at hand, and take a rest. It’s also the elixir for mental blocks. What’s typically seen as useless daydreaming is now being seen as an essential experience.

9.       Mastering Discomfort:

Just when we’ve found a quiet place to sit alone and reflect, an itch will beckon to be scratched. But many meditation teachers will encourage us to refrain and breathe into the experience until it passes (Remember Eat, Pray, Love?).

Along with bringing our minds back from distracting thoughts and to our breathing, these practices work to build greater self-discipline.

10.     Emotional Cleansing

Our fight/flight mechanism causes us to flee not only from physical difficulties, but also emotional difficulties. Ignoring and burying negative emotions, however, only causes them to manifest in the form of stress, anxiety, anger and insomnia.

Strategies to release emotional turbulence include sitting in silence and thinking in detail about what triggered the negative emotion. The key is to do so as an observer—stepping outside of ourselves as if we’re reporting for a newspaper. It’s a visualization technique used by psychotherapists to detach a person from their emotions, which allows them to process an experience objectively and rationally.

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#SICK Looks Like Me

Lottie 1I was pointed to this blog post from a Facebook group I belong to: it’s by Lottie Ryan of Who’s That Lady For Women With Chronic Illness.

I wonder how many people will try to do this? Or how many will give up (before beginning) and say ‘too hard’? I wonder if it will make me feel better? Or if feeling better will make me want to try it out?

Have a read and let me know what you think…

One thing that Lottie is definitely correct about is that #sicklookslikeme.

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The Revolution

I incite a revolution at the end of this post but you’re going to have to read it to understand the point, so grab a cuppa and dive in…

HAVE YOU STOPPED MAKING AN EFFORT WITH YOUR APPEARANCE?

IS MAKEUP FESTERING IN A DRAWER SOMEWHERE HAVING NOT SEEN THE LIGHT OF DAY FOR YEARS?

HAS ‘MAKING AN EFFORT’ BECOME SOMETHING OTHER WOMEN DO, WOMEN WHO AREN’T LIVING WITH CHRONIC ILLNESS?

If so, then you’re going to get something valuable from this post, but if makeup, nice clothes, looking good and all that jazz aren’t your thing, and are never likely to be your thing, then you might just want to skip to the action in the last paragraphs.

At some point during my late twenties, early thirties, I stopped wearing makeup.

This happened at exactly the same time as I stopped being the real me and stopped valuing myself as worthy.

I’d stopped wearing makeup and fallen into the “I haven’t got the time or energy for that” thing or “No one needs makeup, I’m happy au natural”, which was really code for “I’ve stopped caring about myself, because I’ve forgotten my true value, and I don’t think I’m worth the time or energy”.

I also thought I had to look sick to be sick.

On top of the usual mommy guilt from which we all suffer, I had the added guilt of having birthed my children into a seriously ill situation knowing I couldn’t care for them as I wanted, and as they needed. I turned to my amazing husband (who never fails me, or them) and our parents to help, but with that felt a compelling need to ‘prove’ I really was as sick as I felt.

In addition I noted that doctors take a lot of interest in your appearance and on the odd occasion I’d turned up to clinic looking better presented their exclaims of ‘Oh, you look much better, I’m so glad to see things are improving’, despite my protestations that they weren’t, made things harder, giving me more reason to look sick to prove I was sick.

Then one day I realized I was deeply, heart achingly miserable and I’d started avoiding mirrors or any reflective surface as the sight that greeted me was just too depressing.

I’d become something I just wasn’t inside and if my chronic illness was indeed chronic and therefore for life I just couldn’t continue the rest of my life as the miserable, depressed, pale and wretched thing I’d become.

My marriage and relationships couldn’t survive me being this wretched person either. It was too depressing and awful. Oh, don’t get me wrong, my husband loves me with or without makeup, but there’s no doubt he finds me much more attractive when I’ve made an effort with myself, and why shouldn’t he? I certainly always wore makeup during the time we dated and was not pale and wretched-looking, so that’s not who he fell in love with. Nor did I walk down the aisle without makeup on, so that’s not who he married either.

I Can Change

I recognized that I couldn’t quickly, if ever, change what was going on inside of me but I could change how I presented myself on the outside and thus how I felt about myself.

Though weak, in pain, and truly exhausted there was definitely still a sparkly heart thumping in my chest, intrigued by all things bright, excited by small adventures and so very open to living a beautiful life despite it all. I needed others to see this person and recognize me for who I was despite my illness, and in turn that recognition might just bring me back to life.

The only person who could change this situation was me. I decided to stop worrying about others’ judgements and assumptions and go out shining as I truly am inside; to be authentic and acknowledge that how I look has no true bearing on how I feel.  Doctors and others soon got used to seeing me looking amazing but showing up in all of their tests as the sick person I undoubtedly am.

I went on a mission to redefine what sick Lottie looks like.

To start this, I started wearing makeup.

It was that simple.

There’s a lot of cynicism around make-up and modern beauty standards, but I’m of the opinion that we have this amazing tool at our disposal, to help us feel better about ourselves, so why not use it?

Women fought to wear makeup (seriously…read on)

It’s a fact that women fought hard for the right to buy and wear makeup without shame. It’s a right we sought alongside our right to vote.

Prior to around 1910 makeup was an ‘under the counter’ business, deemed fit only for ‘Ladies of the Night’. In the 1920s women demanded the right to dress and make themselves up as they see fit; relinquishing their corsets, showing their legs and wearing bold makeup with red lips and smokey eyes.

Makeup became widely sold over the counter and worn by the average woman. It has been a tool women have used to express their femininity and create the best version of themselves ever since. It’s an important part of our history and modern being, and I’m a big fan.

Wearing makeup again was just the beginning of my long journey, so if you recognize yourself as similar to the way I was at the top of this story, take hope in the fact that YOU CAN change back, or into the person you really are, with small simple steps that won’t overwhelm you.

Hopefully you’ve read my ‘5 Simple Steps to Better Mornings’ and started doing them. I know they seem ridiculous in their simplicity, but this is where I started and if my personal journey is anything to go by these simple things might just lead you to various adventures of a lifetime.

From Pilled Up to Pinup

If someone had told me 6 years ago when I started this journey that wearing mascara would be the start of my journey towards becoming a published vintage pinup model I would have laughed in their face and told them they were being ridiculous. I, a woman in her early thirties, mom of two toddlers, with BOWEL disease, fluctuating weight due to steroids, and a future filled with abdominal surgeries could not possibly be a vintage pinup.

Yet here I am:

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Let’s Start A Revolution

Start small. Start today and then start dreaming about what you really want in your life, as these small steps WILL lead you somewhere great if you take action.

You can read my stories, my suggestions and my ideas all day, every day, but nothing is going to change unless YOU TAKE ACTION.

So, I want your help to start a revolution.

I want to change the way sick is viewed by people. In the 21st century people can live with a chronic illness and look fine. I could be in hospital almost dying and still look pretty good with my makeup on and my hair done (in fact I have been, much to my nurses’ amusement). Judgements based on looks are outdated, unhelpful and need to change, and I need your help to change them!

Go and ‘put your face on’, that beautiful face that mirrors your heart not your illness, and head out to shine despite it all, but first take a selfie – yep, I’m for real.

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We’re going to document this, and start a revolution at the same time. There’s power in a hashtag don’t you know?

When you’ve taken your selfie post it on Twitter/Instagram/Facebook with the hashtag #sicklookslikeme, then post it here in the comments too or, if you’re shy, come into our Facebook group and post it there, until you build your confidence to perhaps post elsewhere.

Are you in? I hope so as I can’t bring about this change on my own. This is all about team work and I want YOU on my team.

You’re never alone.

Lottie -x-

PS This is not a one-off, thing. I’m going to use this hashtag and work on this revolution for the foreseeable future. There’s work to be done! #sicklookslikeme

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At Least, it isn’t Cancer.

The following post appeared at reachwhite.com; however (and it’s a BIG however) I have taken some liberties. It was originally about Lyme disease but I empathised completely with the author, from my fibromyalgia-racked perspective. So I am sure that some of you feel the same way (not all of you, I know that!). Basically, this is a re-blog but I have replaced Lyme Disease with Fibromyalgia and ME/CFS.

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Here goes:

I probably won’t make a lot of friends with this post — but I hope I don’t make any enemies either. I hope that what I’m not saying is as clear as what I am saying.

I’m not saying that Fibromyalgia and/or ME/CFS is worse than Cancer. I’m not trying to make any comparison between the two diseases…as diseases. Both Cancer and Fibromyalgia and/or ME/CFS are devastating. Both wreck families. Both make patients unable: unable to stay awake, unable to sleep, unable to work. Both impact on functional status and well-being and reduce quality of life.

But there are some notable differences — and those differences are all in how other people respond to the illness. How other people perceive the sick person, and the sick person’s family.

If you have Cancer, or another sickness from the established disease Canon: the register of approved diseases (Diabetes or AIDS or Parkinson’s or Multiple Sclerosis or Cancer), people will listen.

If you have Cancer, your health insurance will probably cover your treatment, at least partially…whatever you want that treatment to be.

If you have Fibromyalgia and/or ME/CFS, you will get letters from your health insurance company saying that they can’t cover any of your treatment because their guidelines don’t recognize chronic Fibromyalgia and/or ME/CFS.

If you have Cancer, people will establish foundations, and run 5k’s, and pass acts in Congress and wear ribbons and buy bracelets and pink things to raise funds for research — to the tune of billions a year.

If you have Fibromyalgia and/or ME/CFS, no one will raise funds for research, or even believe that you have a disease. But you’ll look around one Saturday and realize your 5-year-old daughter is missing…and you’ll find her down the street, peddling her artwork and her trinkets door-to-door: to raise money for the family.

If you have Fibromyalgia and/or ME/CFS, you will go broke…while you’re going for broke.

If you have Cancer, and you’re a kid, the Make-A-Wish Foundation will arrange for you to meet your favorite celebrity or go to Disney World.  And Hollywood will make movie, after movie, after movie about your story.

If you have Fibromyalgia and/or ME/CFS, and you’re a kid, your gym teacher will tell you that you have to run the mile unless you can get a note from your doctor. Your teachers will fail you for missing too many days of school. And people will tell your parents that you’re just going through a phase.

If your dad or your mom has Cancer, people will organize workshops and therapy groups for you. People will tell you that it’s OK to express your feelings.

If your dad has Fibromyalgia and/or ME/CFS, people will tell you that he doesn’t love you. Let me repeat that and assure you that I do not exaggerate. If you’re a kid, and your dad has Fibromyalgia and/or ME/CFS, well-meaning people will tell you that, if your daddy loved you more, he would try to get better.

If your husband has Cancer, ladies from your church will show up at your door with casseroles.

If your husband has Fibromyalgia and/or ME/CFS, ladies from your church, even people in your own family, will tell you to leave him; or call you an enabler. But you’ll be too busy helping him crawl from his bed to the couch, or steadying him as he stands so that he can use the bathroom, or helping him finish his work so that your kids can eat to wonder what, exactly, you’re enabling him to do.

If people ask you: “Is your dad sick?” And you say: “He has Cancer.” Their eyes will well up. They’ll squeeze your hand and offer to bring you dinner, put you on their prayer list. They’ll say: “If there’s anything we can do…” And they’ll mean it.

If people ask you: “Is your dad sick?” And you say: “He has chronic Fibromyalgia and/or ME/CFS.” They will look confused for a moment. They’ll say: “What?” And then they’ll shake their heads, smile, and say:

“Well…at least it isn’t Cancer.”

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HAPPY FIBRO-MAGIC AWARENESS DAY

Today is International Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Fibromyalgia Awareness Day.

The idea originated with Tom Hennessy, the founder of RESCIND, Inc. (Repeal Existing Stereotypes about Chronic
Immunological and Neurological Diseases). Mr Hennessy was based in the US but understood that it needed to be
an International event.

May 12th was chosen as it coincided with the birthday of Florence Nightingale. She was believed to have suffered from Fibromyalgia.

FN 3Florence Nightingale, an English army nurse during the Crimean War (1854-1856), was a pioneer in the International Red Cross Movement. Nightingale became ill while working on the front lines and never really recovered. She was virtually bedridden much of the rest of her life with pain and fatigue resembling fibromyalgia until her death in 1910. Even though Nightingale was suffering from a debilitating illness, she still managed to become the founder of the world’s first School of Nursing. Her previous work, and that after she became ill, led to her being the first women to get the British Order of Merit.

Although the term, FIBROMYALGIA was not coined until 1976, throughout history people have reported illnesses with strikingly similar symptoms. These reports can be found as far back as Old Testament Biblical times:

I, too, have been assigned months of futility, long and weary nights of misery. When I go to bed, I think, `When will it be morning?’ But the night drags on, and I toss till dawn…And now my heart is broken. Depression haunts my days. My weary nights are filled with pain as though something were relentlessly gnawing at my bones.

(Job 7:3-4; 30:16-17 – NLT)

This mysterious illness has been studied since the 1800’s and has been identified by a variety of names, including hysterical paroxysm, muscular rheumatism and fibrositis. The term fibromyalgia was first coined in 1976 in an effort to describe its primary symptom. The term “fibromyalgia” derives from new Latin, fibro-, meaning “fibrous tissues”, Greek myo-, “muscle”, and Greek algos-, “pain”; thus the term literally means “muscle and connective tissue pain.”

Over the years there have been a multitude of theories as to what fibromyalgia is and what causes it. As the term fibromyalgia implies, it was logically thought to be a muscle disease, since muscle pain seemed to be the primary symptom. However, research studies could find nothing wrong with the muscles. For a while, it was theorised that it might be an autoimmune disorder, but once again research revealed no disturbance of the immune system.

Sadly, as often happens when medical science cannot identify an illness using standard technology of the day, for most of the past 200 years, fibromyalgia was thought to be a psychiatric or psychosomatic disorder. 

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Even today, there are a few (many?) medical professionals who insist on hanging on to this theory.

Fortunately, this century has brought new laboratory tests and brain-imaging technology that has not only proven fibromyalgia to be a real physical disorder, but has also shown that it is caused by a malfunction of the central nervous system. As a result of these discoveries, new, more effective treatments are on the horizon (Bring it on!)

Until very recently, May 12 Awareness efforts have largely been grassroots and undertaken by individuals or individual organizations. Due to the mandates of these organisations, the awareness efforts have, for the most part, focused on only one of the illnesses. For example; this site, together with my Facebook page, Twitter and LinkedIn profile, as well as LIVING WELL with FIBROMYALGIA has been focused on Fibromyalgia (obviously!).

  • From the beginning in 1993, various ME/CFS organizations were behind the idea. They highlighted the May 12th International Awareness Day at a World Medical Conference on ME/CFS in 1995. This was instrumental in the campaign being adopted internationally for ME/CFS.
  • Efforts by Fibromyalgia organizations took a little longer. National FM efforts in the United States started in 1997 with the National Fibromyalgia Association (NFA).
  • In Canada, through the efforts of the then newly founded (June 1993) National ME/FM Action Network, May 12th has been an Awareness Day since 1994.
  • Some organizations have an International ME/CFS Awareness Day (May 12), others have a week still others, such as the newly formed European ME Alliance which includes 9 European countries, use the whole month of May.

Hopefully, one day this history of fibromyalgia will be just that – past history.

MILESTONES IN FIBROMYALGIC HISTORY

  • 1600s – Fibromyalgia-like symptoms were first given a name: muscular rheumatism.
  • balfour1816 – Doctor William Balfour, surgeon at the University of Edinburgh, gave the first full description of fibromyalgia.
  • 1824 – Doctor Balfour described tender points.
  • 1904 – Sir William Gowers (right) coined the term fibrositis (literally meaning  inflammation of fibres) to denote the tender points found in patients with muscular rheumatism.
  • 1972 – Doctor Hugh Smythe laid the foundation for the modern definition of fibromyalgia by describing widespread pain and tender points.
  • 1975 – The first sleep electroencephalogram study identifying the sleep disturbances that accompany fibromyalgia was performed.
  • 1976 – Because no evidence of inflammation could be found, physicians changed the name from fibrositis to fibromyalgia (meaning pain in muscles and tissues).
  • 1981 – The first controlled clinical study with validation of known symptoms and tender points was published.
  • 1987 – The American Medical Association recognised fibromyalgia as a real physical condition.
  • pic 21990 – The American College of Rheumatology developed diagnostic criteria for fibromyalgia to be used for research purposes.  The criteria soon began to be used by clinicians as a tool to help them diagnose patients.
  • 1990s – The concept of neuro-hormonal mechanisms with central sensitization was developed.
  • 2007 – The U.S. Food and Drug Administration approved the drug Lyrica for the treatment of fibromyalgia.  This was the first drug ever to receive FDA approval for fibromyalgia.  (Since then, two additional medications – Cymbalta and Savella – have also received FDA approval for the treatment of FM.)