#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

Untitled

A Voice for Fibromyalgia?

Leah Tyler

This has been re-blogged from Leah Tyler at the Chronicles of Fibromyalgia:

Dear Pfizer,

Last night one of your commercials for Lyrica came on TV. In this ad a woman claimed her overactive nerves, caused by Fibromyalgia, gave her pain and kept her from doing the things she wanted to do in life. Obviously she went on to tout the praises of your drug, but I wasn’t listening. Instead, I was hung-up, obsessing, and ranting and raving over the use of one word, wanted. Fibromyalgia kept her from doing the things she wanted to do in life? Like rock climbing or going to an Eminem concert? Because this Fibromyalgia patient over here experienced a completely different reality. Not only did Fibromyalgia keep me from doing the things Iwanted to do, it also kept me from doing the things I had to do, like washing my hair and going to work. And I know a hell of a lot more patients sing my song than Miss Wanted To Do’s.

I have added this video as we don’t have ads for prescription drugs on TV (and I’m not sure about all other countries):

Needless to say, as a nine year veteran of Fibromyalgia, I found this phrasing offensive. In short, here’s my beef; You’re $opping up the dough off a disease that isn’t technically a disease, because nobody knows what causes it. So it wouldn’t hurt too much to throw us patients a bone, would it? Because we’re in a pickle and sure could use your help. Not only is Fibromyalgia the leading pain condition diagnosed in the USA, patient symptoms run the gamut, with a range of fluctuating severity. It affects everyone differently, and to make it even more convoluted, the treatments do, too. Please understand I am an educated consumer. In no way am I holding any pharmaceutical company responsible for sourcing the cause and cure of this mysterious ailment. And I’m well aware of how expensive the process of developing a drug, testing it, and bring it to market actually is. I’m even hip to the efforts your company invests in regarding Fibromyalgia awareness and cause advancement. But maybe it’s because of these reasons I’m actually pissed at you.

I know you pay a pretty premium for the advertising, but as of right now, Pfizer, you are the voice of our illness. Countless patients have lost their ability to function from Fibromyalgia, along with their jobs, families, friends and homes. Fibromyalgia is a devastating reality hotly debated in the crossroads of modern and psychiatric medicine, yet nobody can deny the number of patients is only growing larger. As the only other source of the word “Fibromyalgia” to many people in our society, other than ‘strange Aunt Sally who doesn’t like to leave her house’, you would do the aforementioned injustice a world of good if the chick on the Lyrica commercial said had. ‘Fibromyalgia kept me from doing the things I had to do in life.’ It would give millions of people some much-needed validation.

Thank you for your consideration,

Leah Tyler

I’m probably looking at this from a different point of view than most: I have been trying to encourage all of us, via this site, Facebook and Twitter, to become a voice for Fibromyalgia by sending emails, sharing posts or tweeting; and, then, on May 12th, lighting up their home with purple bulbs (this part is the only bit that may require some physical exertion). (Don’t know what I’m talking about? Check this out.) However, due to the very nature of our condition, it is so difficult to get many of us to actually do any of this…so, yes, it is sad that, despite how hard some of us try, Lyrica ads are the only voice for us!

 

Int Fibro

In Exactly 4 Hours…

In exactly 4 hours, I should get to see how/if all the hard work of the last couple of months, promoting (read ‘nagging’) the Make Fibromyalgia VISIBLE Thunderclap, has had any type of effect on Facebook and Twitter.

Hopefully, all of those supporters (as I write, at 757) and at least some of their friends and family (currently at 254,384) will upload this picture to their Facebook cover-photos for the entire month of May.

Right click this picture to save to your computer; then upload to your cover photo.

Click on this picture: Right click on the full-size header to save to your computer; then upload to your cover photo.

Visible army squareHopefully, all 953 members of the VISIBLE Army will upload their VISIBLE Army photo to their profile pictures for the entire month of May.

Hopefully, in exactly 4 hours, more people will be aware the Fibromyalgia exists.

However, in exactly 4 hours, I will be sitting in my dentist’s chair, getting prepped for a crown (Not happy, Jan!)

lrg_Ornamental_Divider__Englische_Linie

niagaraBut one thing I definitely won’t be missing is when Niagara Falls goes PURPLE for Fibromyalgia Awareness. Niagara Falls will be PURPLE from 10:15 to 10:30pm EST on May 12th. No, I won’t be going to Canada! I’ll be watching it live from my lounge room in Melbourne, Australia on http://www.niagarafallslive.com/

If you want to see it, too, and you’re somewhere else in the world, check out the countdown to Live Webcast: Niagara Falls & Fibromyalgia Awareness.

Can you tell? I’m a bit excited by all the happenings for Fibromyalgia Awareness.

My Final Fibro-my-Appeal

It’s the last day before the Make Fibromyalgia VISIBLE Thunderclap goes off!

For those who have no idea what I’m talking about: this is NOT a Facebook page or website specific project – so I have been hoping that this will be supported by ALL of us!

I started a(nother) Fibromyalgia Awareness initiative in which I would be honoured if EVERYONE would get involved: it’s called a Thunder Clap.

What is Thunderclap?

Thunderclap is a tool that lets a message be heard by saying it together. When we reach our goal number (which we have!), 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:

Clap 1

 

As of when I wrote this, we have 704 supporters with a potential social reach of 228,394 people.

What is THIS Thunderclap?

clap 2

I don’t know how to turn Facebook purple (like the breast cancer awareness people do with pink), so this Thunderclap is me asking EVERYONE to upload the following cover photo to their own profiles for the entire month of May.

header

The message will be published on every supporters’ Facebook page and/or Twitter feed on May 1st at at 12:00 AM EDT. Here’s the world-wide times (yes, I know it’s a small picture — just click on it to enlarge):

time

What Can YOU do to Help?

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

  • add more social reach with Twitter or Facebook; and/or
  • promote the THUNDERCLAP by sharing or tweeting.

2. You can promote it on your Facebook page

clap 3

3. You can write a blog post to let all your followers know about the project.

clap 4

4. On May 1st, upload the cover photo to your Facebook page (AND upload your VISIBLE Army picture to your profile photo)

Our goal: to no longer be ignored! 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!.

And REMEMBER please:

It’s Like Thunder(Clap)!

If you follow my Twitter or Facebook page, you will know that I have been nagging everybody to support and promote our ‘Make Fibromyalgia VISIBLE’ Thunderclap; and with 14 days to go, it’s time I started nagging you!

I REALLY want to hit 200,000! Please help.

I REALLY want to hit 200,000! Please help.

What is Thunderclap?

Thunderclap is a tool that lets a message be heard by saying it together. When we reach our goal number (which we have blitzed!), 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:

Clap 1

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!

clap 2

Click on this picture to support and promote the Thunderclap.

I don’t know how to turn Facebook purple (like the breast cancer awareness people do with pink), so this Thunderclap is me asking EVERYONE to upload the following cover photo to their own profiles for the entire month of May.

header

Click on this picture to get full-size header to save and upload to your cover photo.

The message will be published on every supporters’ Facebook page and/or Twitter feed (because we have reached the goal number) on May 01 at 12:00 AM EDT. Here’s the world-wide times (yes, I know it’s a small picture — just click on it to enlarge):

time

What Can YOU do to Help?

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

  • add more social reach with Twitter or Facebook; and/or
  • promote the THUNDERCLAP by sharing or tweeting.

2. You can promote it on your Facebook page

clap 3

3. You can write a blog post to let all your followers know about the project.

clap 4

4. On May 1st, upload the cover photo to your Facebook page (AND upload your VISIBLE Army picture to your profile photo)

Our goal: to no longer be ignored! 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!

Where, oh Where…?

So, I’ve spent most of the day looking at current research and trying to find something to write about; BUT it’s all so BLAH!

203. acupunctureYes, acupuncture has been found to help those suffering from FM – where’s the new information in that?

Yes, marijuana has been shown to help those suffering from FM – where’s the new information in that?

Yes, dysmenorrhea is especially common in FM – where’s the new information in that?

Obesity, tai-chi, hydrotherapy,  shiatsu, reflexology, yoga – it’s all the same…there is nothing new!

I’ve kept reading, checking Facebook, watching tweets and I can’t find anything! And, obviously, I have done nothing else to tell you about. So, I’m setting you a mission: can you find (somewhere, anywhere) something new about FM?

images

Related Articles:

THUNDERSTRUCK!

In my eternal search for ways to make Fibromyalgia stand out and get noticed, I have just started a(nother) new Fibromyalgia Awareness initiative in which I would be honoured if you would get involved: it’s called a Thunder Clap.

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

What is Thunderclap?

Thunderclap is a tool that lets a message be heard by saying it together. When we reach our goal number (and I have made it quite low so the message will get out there whatever happens!), 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:

Clap 1

What is THIS Thunderclap?

clap 2

I don’t know how to turn Facebook purple (like the breast cancer awareness people do with pink), so this Thunderclap is me asking EVERYONE to upload the following cover photo to their own profiles for the entire month of May.

header

The message will be published on every supporters’ Facebook page and/or Twitter feed WHEN we reach the goal number.

What Can I do to Help?

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

  • add more social reach with Twitter or Facebook; and/or
  • promote the THUNDERCLAP by sharing or tweeting.

2. You can promote it on your Facebook page

clap 3

3. You can write a blog post to let all your followers know about the project.

clap 4

Our goal: to no longer be ignored! 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!

FibroDaily…starring ME!!!

Recently, I was interviewed for FibroDaily’s Fibro Warrior of the Week. The post came out today and WOW! I sound great (even if I do say so myself!) You can see the interview HERE; or just read my copy and paste…

FWOTW

Our fourth FWOTW is nothing short of a triple fibro threat! Simone (aka FibroModem) does more to give back to the fibro community than just about anyone. Between blogging, creating her cartoon, running her online fibro awareness store, and promoting her Visible Army campaign, she hardly has time for flare ups! Most of all, we love her ability to find humor in fibro, make us laugh, so maybe we can even forget about it for a minute. -FD


FD: Tell us a bit about yourself – Where were you born, where do you live now, family, interests, etc.

Simone: I was born and bred in Melbourne, Victoria in Australia. I am single, live alone and I have Fibromyalgia. I was 40 before I had even heard about Fibromyalgia.

I used to work in hotels, on cruise ships and in casinos. Then I decided (at the age of 34) that this kind of work was not challenging enough so I spent 6 years working (in the ‘real’ world – Crown Casino) and studying (in ‘academia’) to get my law degree. About halfway through my studies, I had (what I call) a major breakdown.

I stopped working – I was broken. No getting out of bed. No getting in the shower. No getting dressed. I was depressed. I had depression. It took about 3 years to swim out of those murky waters (with lots of drugs acting as my life-preserver!)

For some reason the only thing that kept me going was my studies. Maybe it was the opportunity to start a new life, to get away from shift-work, or to live within the mainstream – but whatever it was, my studies saved me (I was never suicidal. I always thought that it had to get better than THIS otherwise how did other people survive. My psychologist said I was a very positive depressed person!) and I made it through.

Finally, with the help of my family, drugs and counseling – graduation!

I was able to ‘practice’ law for one whole month before the debilitating purple wave took over my life – FIBROMYALGIA!

fibro modem butterfly

Unlike many, I have NOT learned to manage this condition (don’t talk to me about pacing! I have too much to do!) so I am not working and I spend a lot of time on my couch sharing my thoughts and attempts at a life with my new friends on Facebook, Twitter and my blog: fibromodem.com.

I love trying and learning new things – I really believe that I can do anything! So I try everything (and there’s the reason we won’t talk about pacing!) I love my nieces and nephews (and their parents) beyond anything I could ever imagine. I love my Mommy – who is the best and most supportive mother (and person) in the entire world. And I love being able to link up with people all over the world to support each other.

FD: When did you first suspect that something wasn’t right? What happened?

Simone: In about 2007, about halfway through my (mature-age) studies, I had (what I call) a major breakdown.

I stopped working – I was broken. No getting out of bed. No getting in the shower. No getting dressed. I was depressed. I had depression. It took about 3 years to swim out of those murky waters (with lots of drugs acting as my life-preserver).

For some reason the only thing that kept me going was my studies. Maybe it was the opportunity to start a new life, to get away from shift-work, or to live within the mainstream – but whatever it was, my studies saved me (I was never suicidal. I always thought that it had to get better than THIS otherwise how did other people survive. My psychologist said I was a very positive depressed person!) and I made it through.

With the help of my family, drugs and counseling – graduation! But I never got back to full throttle.

I was only able to ‘practice’ law for one whole month before the debilitating purple wave took over my life – FIBROMYALGIA! I believe that the depressive episode was the beginning of my fibro onset.

FD: When were you diagnosed with Fibromyalgia?

Simone: November 2011.

FD: When you received your diagnosis, how did it affect you?

Simone: At the time, I let out a big sigh of relief – I finally had a diagnosis: I wasn’t crazy; but, little did I know that a diagnosis wasn’t going to lead to an immediate, successful treatment.

FD: Since then, how has your outlook on life changed?

Simone: I still believe that ‘it has to get better than this’ so I have not returned to my depression at all (knock on wood!). There just MUST be something out there in the whole wide world that can help – we just have to find it.

The part of fibro that I have appreciated is the time it has forced upon me: time to walk up the street and meet all the local shopkeepers, time to spend time with my nieces and nephews, time to try lots of new things.

FD: How does Fibro affect your day-to-day life?

Simone: I wake up – it feels like my body has melted into my mattress, so it is with great difficulty that I drag myself up and out of bed. Sometime during the night, the bones in my feet broke while I was sleeping (yes! that’s the only description I have for how my feet feel while I try to get them moving in the morning). And up. Head spinning. Need to wrench open door with two hands as power has not been fully restored to my wrists. Guess what? The bones in my hands (what’s the area between your wrists and your fingers called?) were in the same tragic accident as my feet.

fibro modem butterfly

Slowly, I move towards the kitchen for my medication, then to the couch – for about 2 hours – until my body catches up to the waking up process.

I no longer work as I cannot offer any reliability to an employer or clients but I have kept myself busy with my Facebook pageblogFibromyalgia Awareness Shop and Twitter. I have a continuing awareness project called the VISIBLE Army for all sufferers and supporters.

FD: What can’t you do anymore because of Fibro?

Simone: No more playing squash with my father; no more working; no more all day shopping trips; and, limited driving.

FD: Name something you do now that you never would have imagined happening before your diagnosis.

Simone: Lots and lots of things: many of us think we’re stuck – nothing is going to change, this is it, this is my life! But why? There are still so many things we can do – and, for those of us stuck at home, perhaps an opportunity to try something new.

Since being diagnosed, I have:

  • Attended my first burlesque performance
  • Attended my first hydrotherapy class
  • Started my first Facebook page
  • Attended my first Bowen therapy treatment
  • Went to the Doggy beach for the first time
  • Wrote my first Blog post
  • Made my first video
  • Opened my first Fibro awareness store
  • Attended my first Pilates session
  • Attended my first Yoga session
  • Attended my first Tai Chi class
  • Had my 2 year old nephew sleep over for the first time
  • Produced my first cartoon character (FibroModem Girl)
  • Published my first E-mag – LIVING WELL with FIBROMYALGIA
  • Attended my first Shiatsu treatment
  • Attended my first reflexology session

FD: What has been your experience with seeking medical treatment for Fibro?

Simone: The medical professionals, who I have seen, have been very helpful for diagnosis but are too ready to give up – the number of times I have heard ‘that’s all I can do for you’ can lead to depression! We NEED a young, motivated doctor – some-one who is still positive and wants to be the best! some-one who wants to discover new things, who wants to be published, who is willing to experiment with new things! It seems that the older the doctor, the more jaded he has become! We need a few “CHANGE THE WORLD” kind of doctors!

FD: How has Fibro affected your relationships, friends, family, partners?

Simone: I have become even closer to my Mommy AND I have been lucky enough to re-discover a friendship that means the world to me. BUT other than those two relationships, everyone else has disappeared – sad but true.

FD: What is the biggest challenge you face living with fibro?

Simone: Loneliness.

FD: What inspires you to keep on fighting?

Simone: Actually I don’t know – perhaps it is the nagging thought that ‘it has to get better than this!’

FD: What advice do you have for other people who are living with Fibro?

Simone: Put an end to family secrets. Don’t try to protect your friends and family from bad news – communicate directly and openly with family members.

Include your children – even though their understanding of the illness may be limited, children appreciate being told what’s going on around them. Otherwise, children may believe that they are the cause of the serious illness or other events around them. Be open and honest with them, and allow them to ask questions.

fibro modem butterfly

Be selective about who you talk to about the illness. Choose carefully those with whom you’d like to share information about this illness. What matters is that sharing the information about the illness will provide a stronger sense of support and strength.

Be clear about how friends and family can help you. People love to feel useful, so don’t be afraid to ask for help.

Be your own advocate. It’s so hard to learn to speak up about your condition. It’s hard to talk about it sometimes. And it’s really hard to ask for special treatment if you’re not that kind of person. But be brave, and learn to ask for help when you need it.

Find a support group. Go to it. Take a family member or friend if you’re scared. It’s okay to be scared.

FD: Do you have a funny Fibro story you can share?

Simone: I find most things funny (mostly in a sad way) so I started a comic called FibroModem Girl – if you can’t laugh, you will only cry!

fibromodem girl - loved ones

fibromodem girl - insurance

fibromodem girl - invisible illness

fibromodem girl - yoga pain

Need to laugh? See more FibroModem Girl.


Follow Simone on Twitter: @Fibromodem
Like Simone on Facebook:  https://www.facebook.com/FMawareness2012

Check out FibroModem online:
FibroModem Blog
Fibromyalgia Awareness Shop
FibroModem Girl

 

A Search for Value

The Visible ButterflyEvery day, I wake up, turn on the computer, check my Facebook page and answer any comments. (Rest) Then I look at my email and answer all of those. (Rest) Pay whichever bills have been scheduled on my Outlook calendar. (Rest) Next is my blog and twitter account. I have to do everything straight away, otherwise I forget.

After all that, it’s probably off to a yoga, hydro or tai-chi class. (Then rest)

Back home, to see if any of you guys have written to me. I will try to work on a blog post or FibroModem Girl. This can actually take a couple of hours – research, learning new stuff and diversions to other new stuff (and, of course, rest periods!)

I explored the possibility of starting a charity, which involved more research and learning; but couldn’t find enough support. This goal is not going anywhere – it may just need to sit on a back-burner for a while.

You have to remember that prior to March, I had never blogged, had a Facebook page, made a video or promoted anything – so I am actually enjoying myself. I love learning.

I also think that what I am doing has an intrinsic value. Yes, all of this is helping me to cope but I also feel like it’s helping other people. I feel that what I am doing has value.

So, trying to forget the pain/fatigue part – am I living a life of value that satisfies me?

Although I value what I am doing, and I hope you value what I am doing; other people (ie: people in ‘real’ jobs or ‘normals’) do not think what I do with my time is worth anything – mostly because I don’t earn any money.

For example, when I have a family dinner and my lawyer/executive producer cousin asks me how I stay busy all day, I have to answer that I just play around on the computer, because he doesn’t understand anything about what I’m trying to do. When I try to explain, that blank expression with a bored nod appears across his features.

Mommy gets what I’m doing but she still stresses about the money side of everything.

I know that I have to think about the money stuff – but right now, I’m unable to work so (and maybe this is the meds talking) what is the use of worrying. I’m kinda lucky because there are no kids or partners to think about BUT I really don’t know what’s going to happen when the VISA and AMEX are full. The Disability Support Pension (and subsequent back pay) was approved but the breathing space has now disappeared.

Despite all of this: I am quite happy (how weird is that?)

So, the question is: (forgetting the pain/fatigue) are you living a life of value that satisfies you? And what are you doing?