#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.

SICK

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:

lottie 2

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.

Lottie 3

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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Welcome our 1st Non-English Blog to FCK

As you may know, FCK is a directory of blogs that help spread knowledge and awareness of Fibromyalgia: blogs where you can get first-hand information from others who are going through the same experiences.

These bloggers educate, support, enlighten, inform, inspire and motivate people about and with Fibromyalgia.

It is with great pleasure that I welcome our first non-English speaking blog to the directory:

Young people with Fibromyalgia (Portugal) (Jovens Portadores de Fibromialgia (Portugal))

portugueseThis Portuguese blog has two administrators: Joana Vicente, a 24 year-old in pain since she was 11; and, Fátima Figueiredo, a 13 year veteran of the fight with Fibromyalgia – sharing information about Fibromyalgia and other co-morbidities.

Este blog Português tem duas administradoras: Joana Vicente de 24 anos, que sofre com dores desde os 11 anos e Fátima Figueiredo de 35 anos que luta contra a Fibromialgia à 13 anos. Partilham informações sobre Fibromialgia e outras comorbilidades.

And, some-one please tell me if I messed up on the Portuguese!

Make Fibromyalgia VISIBLE!

CARE & Make Fibromyalgia Visible would love to support you in creating a memorable International Fibromyalgia Awareness Day event in your community.  That’s where your efforts really make a difference.  FM events occur all through the month of May.

This year, the National Fibromyalgia and Chronic Pain Association (NFMCPA) pulled together all of the best tips and advice–plus tools, from the pros.  Putting on an event can be easier with a ready-made kit that includes a step-by-step check-off list and a Guide to Creating Local Fibromyalgia Awareness Events for more time-tested considerations.

It’s all free and ready to be sent to you!

FM Awareness Day activities (through NFMCPA) revolve around four topics have a special emphasis raising public FM awareness, not just awareness to those who have FM, their families and friends. The NFMCPA created materials for people with FM, Support Group Leaders, and other advocates to create awareness and education of FM and chronic pain illnesses.

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National Fibromyalgia & Chronic Pain Association Community Picnic, Walk to CURE FM, & Mall/Farmer’s Market Table Top* Event Kits contain:

• 11×17 Table top cardstock poster with tripod
• 11×17 Posters for community event boards
• FM Information Brochures
• Guide to Creating Local FM Awareness Events
• Event check-off list start to finish
• Buy Door Prize Tickets sign
• Door prize drawing tickets ($1/ each or 6 for $5)
• Donation sign
• Receipt book for donations
• Support Fibromyalgia Research Petition

An NFMCPA External Events Agreement is available here.  To order your free Awareness Day Event kit, please send an email to info@fmcpaware.org.

An NFMCPA External Events Fundraising form can be found here.

(Fundraising is not required to receive the free Awareness Day Event Kit.  Donations and fundraising are always appreciated – but we don’t want that aspect to hold you back from creating your great event in your community.)

*Table top kits do not contain tickets or ticket signs.

Fibromyalgia Awareness Day Community Picnic Event 

A specific Community Picnic check off list created by the NFMCPA offers instructions to volunteers about how to host a FM Awareness Day Community Picnic.  The information includes suggestions on how to garner local sponsorships such as donations of food items; paper products (plates, napkins, etc.); prizes for old-fashioned picnic appropriate games, i.e., three-legged races, balloon toss, etc.; media awareness development such as local newspaper, radio and television coverage; FM informational brochures and reusable table top posters promoting the “CARE & Make Fibromyalgia Visible” theme.  A Petition for Fibromyalgia Research to find a cure and treatments is part of a larger ongoing effort to send a united message to national legislators and policymakers.

Fibromyalgia Awareness Day – Shopping Malls, Health Fairs, Farmers Market, Table-Top Exhibits

Putting a special emphasis on reaching out beyond the FM community to educate the general public about FM, the NFMCPA is suggesting that people consider hosting an FM Awareness table at a public location frequented by crowds of people.  Most cities have shopping malls that allow community-sponsored nonprofit awareness events. The NFMCPA offers the Fibromyalgia Awareness – Shopping Malls, Health Fairs, Farmers Market and Other Public Venue Event Kit.  If your local area does not have a shopping mall or the management doesn’t allow information tables, then think about scouting out local health fairs, farmers markets, libraries, grocery stores, exercise gyms, etc, to inquire about setting up a Fibromyalgia Awareness Information table.  The Event Kit gives you everything you need to create this type of outreach, including a special check off list for this activity.  Visit here for more information.

Fibromyalgia Awareness Day Walk to CURE FM

The NFMCPA has once again posted information regarding how to hold a local Walk to CURE FM Walk.  NFMCPA’s excellent Guide to Creating Local Fibromyalgia Awareness Events is now available at www.fmcpaware.org website for easy access. Walks are just one of the components listed in this guide which details several options for people who want to host a May 12 Fibromyalgia Day Awareness Event.  If you’d like to create a public FM awareness Walk to CURE FM, new materials offer ideas to involve others in promoting the walk to the general public.  The Walk to CURE FM Check-Off List includes ideas on reaching people outside of the FM Community to participate in this type of advocacy event.  The Guide to Creating Local Fibromyalgia Awareness Events is currently readable on the NFMCPA website, but hard copies of the publication are available for use by NFMCPA constituents and advocates.  A free Walk to CURE FM Event Kit is available on the website and includes a copy of the Guide.

State Legislature Visits – Proclamation and Resolution Program (USA only)

The NFMCPA Legislative Proclamation and Resolution Program is available on the website at http://www.fmcpaware.org/proclamation-and-resolution-program-a (under Community, then Awareness Day).  The information can easily be downloaded and made usable by NFMCPA constituents.  As in past years, people with fibromyalgia and their loved ones will be encouraged to approach legislators to recognize May 12 Fibromyalgia Awareness Day.  Advocates are encouraged to collect support signatures from the public that can be sent to elected officials to illustrate backing from voters.  The NFMCPA plans to build on this public awareness format through 2013 and beyond in an effort to spread CARE to Make Fibromyalgia Visible Campaign.  Click here for more information.

A-Day-Aware-for-homepage-2013

The observance of International Fibromyalgia Awareness Day, officially May 12, can take many forms.  The 2013 theme – “CARE & Make Fibromyalgia Visible” – encourages people to contribute, advocate, participate in research, and educate others about fibromyalgia.  This day brings people with FM and their communities together around the world.

C.A.R.E & Make Fibromyalgia Awareness

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The National Fibromyalgia & Chronic Pain Association encourages organizations worldwide to make fibromyalgia visible by increasing awareness and understanding during May and on May 12 Fibromyalgia Awareness Day.

To download free logo to use in signatures, on webpages, or wherever you like, Click here.

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The Walk to CURE FM national walks are spreading.  Join or start a walk in your community!  Click HERE. Questions about the Walk to CURE FM?  Experience with creating a walk?  Please share your thoughts on the community tech support forum.  Thanks!

PLEDGE TO CARE

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Family members, friends, and healthcare providers can show their support for those with FM by taking the NFMCPA’s Pledge to Care.  Those who take the pledge with have their first initial, last name, state and country listed on our “We Care” page, along with name(s) of individual(s) they are honoring.  Click Here!

Give through LIGHTS OF HEALTH

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Wherever you are let your light shine at the National Fibromyalgia Awareness Day Event.  Whether you will be there in spirit or in person, you can sponsor a candle in honor of yourself or a loved one living with FM.  Click Here!

AWARENESS EVENTS AROUND THE WORLD

globe-with-butterflies

Fibromyalgia events are held in many places.

 To join an event near you, please locate the “Awareness Day Events” button below the map.
(US – to post your event, please Click HERE!)
(International – to post your event, please Click HERE!)

Attention Single, Divorced and /or Friendless

 

Firstly, some facts (this is not me feeling sorry for myself, just facts):

  • I am single (read divorced and/or friendless depending on your situation)
  • I am sick (with no cure on the immediate horizon)
  • I have only one friend who actually visits with me
  • I have no particular interests outside my home

So, I was thinking, is this my lot in life forever? Will I ever meet a prospective partner? How will I meet a prospective partner? Does he deserve a partner who is continually unable to meet her responsibilities? Okay, forget a partner, how about some new friends?

These questions sent my mind racing – I can’t drive more than about 10 kilometres before my arms, shoulders and head start to hurt; I can’t go to parties (even if I was invited) because the noise and other distractions are too much for me to handle; there are no clubs or groups in my area that I wish to join. So, what is a FM sufferer to do?

Why, take to the internet, of course! ‘How to meet new people’ was my search term:

Succeed Socially.com offered a list of places to meet people

  • Through your friends, significant other, and other people you already know

This point obviously will not work for one in my situation

  • Work

I am still unable to work

  • Volunteering

As I am unable to be reliable in a work situation, I am unable to commit to volunteering. I used to volunteer regularly at a local legal centre – it was incredibly satisfying and I miss being able to help others.

  • Classes

I go to my self-help hydro groups, where the closest person in age to myself is about 25 years older than me. They are a lovely group at Hydro but I doubt greatly that we have very much in common outside being ill and/or disabled.

  • A club or organization

The appeal here is obvious. You join up and you instantly know a group of people who share a similar interest to yours. But what happens if you no longer have any interests? Other than researching fibromyalgia, spreading awareness about fibromyalgia and raising funds for fibromyalgia research. Kind of sounds like I should join or start my own fibromyalgia support group, right?  But, with this type of group, it would probably take all our efforts just to turn up to meetings, let alone maintain friendships outside the group.

  • A sports team or league

Are you kidding?

  • Through your religion

I am not religious. I believe in a higher being but I do not know of a public denomination which shares these same values.

  • Through your kids

Another moot point for me

  • Your living situation

Living in a large building with lots of other people your age around is better than being in a small place with no one who’s similar to you. Guess what my situation is? I live in a block of units (alone) where, currently, there is no-one with any similarities to me at all. How can this happen? (rhetorical question!)

  • Your family

No real help there, although my grandfather (before he died) tried to set me up with a 71-year-old ex-doctor.

  • At a party

Too much noise, too many people, just TOO!

  • An individual sport

How many FM sufferers do you know who do a sport? And I’m not one of them.

  • Online

Hmm…what would my ad look like:

SWF in chronic pain, with control freak tendencies, seeking understanding, compassionate friends with low expectations.

Would any of you answer that one?

 

There were a number of other suggestions but you get the idea…so, tell me, fibroMAGICians, what do you do?

 

The Chosen People

When I made my video ‘Why Me?’, it was supposed to be a tongue-in-cheek title.

Basically, as many people pointed out, FM can happen to anyone – so why not me?

At the age of 34, I embarked on a six-year adventure to study law – my friends wondered why I would do it.

At 40, I graduated, was admitted; but was only able to practice for one month – why me? I asked.

In February of this year, I discovered Facebook pages (rather than personal sites) and I quickly became addicted – my friends wonder why I would do it.

At about the same time, I discovered the wonderful world of blogging; and in March, I wrote my first blog post. Whoa! Have I come a long way since then. But my friends wonder why I do it.

I cannot even work part-time; I cannot drive more than 10 kilometres; I cannot participate in my favourite activity – retail therapy; I am lucky if I can read one chapter in a book; but, worse than all of that, I experience excruciating pain, forget things most of the time and almost always have a headache. Some of my ‘friends’ think that it is all in my head, others think that I am just being lazy… yes, I am misunderstood. I wonder why my friends do that!

LIGHT BULB MOMENT – I have the answers:

I can research most topics as I studied so much. I can ask questions (no matter how silly) as I learnt that there are NO silly questions – just silly people who don’t ask questions. I can create visual material to raise awareness about FM as I like to think that I am a creative person. I can reach out to millions suffering from FM, force their families and friends to accept and understand them as I have already established a blog, a Facebook page, a Twitter personality and a Pinterest persona. I have a background in hospitality so I will get my International Fibromyalgia Awareness Day Symposium/Luncheon off the ground – even if I have to raise the money myself (one bracelet at a time!)

I am one of the chosen ones – I can combine all my experience to raise awareness of our condition; and touch the lives of many.

If I did not have FM, would I have ever thought of doing so? Would I have even heard of the condition?

So, I know why I have FM. As one of the chosen, why do YOU have FM?

I Have a Dream…

 

You might have noticed a new widget on the right hand side of this blog site:

I desperately want to establish a charity that will identify individuals, suffering with FM, in need of financial assistance for the cost of treatment and alternate therapies.

In the process, I aim to educate and increase community (and health practitioner) support and awareness of Fibromyalgia.

Further, I would like to have a seminar/symposium on International Fibromyalgia Awareness Day (May 12 2013) which would involve short, helpful lectures, interspersed with alternative treatments such as tai-chi, meditation and yoga. I want it to be a celebration, rather than a group gripe, so I have plans for a beautiful, purple luncheon in a ‘real’ hotel, with areas to rest for those who need it. I want it to be an EVENT that you really want to come to, and really want to bring a friend. This symposium would be the LAUNCH of my charity.

To do all of this, I need to be able to register my charity, get appropriate legal advice and fulfil a number of conditions – all of this costs money, so I need some help, please.

As you already know, I have been trying to raise awareness of our condition in other ways: I have a Facebook page – Fibromyalgia Awareness 2012 (I’m not permitted to change the name now, as I have over 4000 LIKES), I share, with you, my (mis)adventures with Fibromyalgia and any information that I think is important right here; and I have also made some amateur videos for Fibromyalgia Awareness and Fibromyalgia Awareness Day. I reach a minimum of 30,000 people per week.

Please help me (no matter how small) to make this dream come true.

 

Model Patient

Bianca Embley

While trying to check out famous people who have fibromyalgia, I came across a UK model and actress Bianca Embley. Who? you might ask – I know I sure did. And even looking up her biography, I still have no idea who she is. But I do know that at the age of 32, she was crippled by our best friend, Fibro.

And to get people to know about the condition, Bianca decided to get naked for a calendar. (Note: Instead of PURPLE, the UK has yellow with black spots as their colours)

“I’ve modelled since I was 14 and I’ve managed to do the odd day here and there over the last couple of years. So I had the contacts and wanted to do something that would make an impact and raise awareness of Fibromyalgia,” she was quoted as saying.

She added: “Even though I am used to having my picture taken, it was daunting. At the end of the day I am disabled now. It’s not a visual disability because if you looked at me, apart from my cane, you wouldn’t notice anything.” Stripping down and posing starkers for a charity calendar – to raise funds for Fibromyalgia – seemed the perfect way to face her fears and do some good at the same time.

Her campaign received a warm welcome from a spokesman for the Fibromyalgia Association, who said “Bianca has been determined to reach a wider audience to raise awareness of fibromyalgia and her calendar is certainly going places we have not reached before.” The former air stewardess and part-time model from Warwick, was struck down with the debilitating condition 10 years ago after an accident at work. Bianca has walked with a cane for the past six years and had previously had bouts of being wheelchair-bound when the pain got too much to handle.

Stunned that the illness was not taken seriously, Bianca decided the only way to make the nation sit up and take notice was to get naked!

“We applaud her tenacity in producing the calendar and we are sure this is going to be a successful venture. Fibromyalgia is affecting an estimated two per cent of people in the UK and as yet there are no official guidelines for treatment.”

Bianca added: “I just hope we can sell a lot of calendars and raise more awareness. Then this will all have been worthwhile.”

10 Reasons To Increase Fibromyalgia Awareness

  1. As we all know, it takes some people years and years to find out what is wrong and finally be diagnosed. If everyone knew all about fibromyalgia, then people could be diagnosed earlier. There would be  less of those depressing years of searching for answers.
  2. Sufferers will feel less alone – they will see posters and information booklets EVERYWHERE, giving them tips on how to cope.
  3. Doctors will become more interested in our condition and start investigating (and keeping up to date with) the newest medications and treatments, rather than ‘It’s Fibromyalgia – there’s nothing I can do.’
  4. Medical researchers and scientists will be more interested in finding a cure! Nobody wants to spend their time looking for a cure for something that no-one has heard of, they all want to cure the illnesses that people know about!
  5. We will no longer have to answer questions such as ‘Fibro-my-WHAT?’, ‘Fibromyalgia? What on Earth is that?’ or ‘Is that even real?’ No more long difficult explanations of the never-ending symptoms.
  6. People may even become more understanding! Relatives and friends will understand why you don’t feel up to partying. Employers understand why you have limitations and will be able to give you suitable arrangements because they will know what they are dealing with.
  7. Advertising companies will realise that there are a LOT of us and will design fibro-friendly products such as ride-on vacuum cleaners, ergonomically designed car seats, etc.
  8. More support groups will be formed as a result of more people realising that they have fibromyalgia.
  9. More people will donate money to research to find new treatments and… dare I say it… maybe even a cure!
  10. Because it makes you feel good about yourself!! You aren’t just doing this for yourself; we are doing this as a TEAM EFFORT! We need to reach as many people as possible to make this a success.