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

 

Feeling (VERY) Fibro (Fotos Competition)

So, today I am emotionally (you’d notice from the last couple of posts) and physically spent, so I won’t be offering anything deep and meaningful.

There are 5 days left for you to enter the

Feeling Fibro Fotos competition

What you need to do

  • Take a photo that represents how you feel about Fibro, or how Fibro makes you feel and upload it in digital form HERE
  • There are 5 days left to upload your photo (you can upload 3 photos).
  • The winner will be decided by a public vote (voting is open from November 23rd to December 12th), so spread the link to the competition (and your photo) to your family and friends.

The winning photo will be featured on the cover for the March issue (the International Fibromyalgia Awareness Day issue) of LIVING WELL with FIBROMYALGIA

All photos must fit within the theme of ‘What Fibromyalgia means to me’ or ‘How Fibromyalgia makes me feel’ to be considered in this competition.

  1. Participants are permitted three (3) entries per person
  2. Entries must be submitted between November 12 and 11.59pm November 22, 2012.
  3. All entries must be original (with copyright ownership) digital images.
  4. Entry is open to anyone (not just Fibromyalgia sufferers!)
  5. Voting begins on November 23, 2012 and continues until December 12, 2012
  6. All dates and times are EST.
  7. The winner will be decided by a public vote.
  8. One vote per person per day is permitted.
  9. Participants are encouraged to share the link to the competition and to their entries with family and friends.
  10. The winner will be announced on December 13, 2012

Here are the entries so far:

Do you think you can do better? Got a different idea/view of fibromyalgia? Why not spend some time being creative?

10 Reasons To Increase Fibromyalgia Awareness

Today I have run out of things to say so, yes! this is a repeat post – but it is still vitally important!

    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.

After All…Tomorrow is Another Day.

 

So, it’s finally hit me…I’m home from Bali. Duh! you say, but I was able to stay in my little fantasy land for a whole week.

Despite coming home to: two telephone bills (home and mobile), a car registration notice, an invoice for three quarters of body corporate fees, an impending hospitalisation to withdraw from codeine, the spectre of a gallbladder operation (then disappearance of aforementioned operation), the new threat of a lesion on my liver, and an unexpectedly high bill from my handy-man; I was somehow able to hold onto my dream of returning to Bali for a year. Forget Eat, Pray, Love – it was just going to be Love, Love, Love!

WHO AM I KIDDING? For some unknown reason, today it hit me full force that I’m home and, most probably, staying here. I don’t know why it was today – nothing huge happened; but it slammed into me (kind of like those trucks that hit us during the night so we wake up in so much pain) – I’m on a disability pension. Yes, it is cheaper to live in Bali. Yes, I could rent out my unit. But I would still need to return every 3 months to continue receiving my pension, and airfares are not cheap.

This ‘little’ dose of reality brought back all the other stuff (above) that comes with being at home and, all of a sudden, I am overwhelmed. Too much, too quickly!

My reaction is a quick visit to the darkness of depression…

STOP! Wipe those idiot tears. You need some control!

I can’t control any of the bills or medical hassles so my antidote is to get some control over my surroundings – 8 shelves of books going to friends or the Op shop, 2 suitcases of clothes I don’t wear (but I might one day) going to be stored in Mommy’s garage and 4 bags of trash. There is stuff everywhere (I can’t do it all in one hit – I have Fibro, remember?) and I’m unhappy about going to bed, knowing that all this stuff will be waiting for me in the morning; but my exhaustion (and gravity) is dragging me down. So, now, not only is my head a mess but, so is the house (more so than before!)

But, as Scarlett said: I can’t think about that right now. If I do, I’ll go crazy. I’ll think about that tomorrow.

 

P.S. The clean basket of laundry is still sitting on the floor of my bedroom.

P.P.S. And, maybe, I can still work out a way to Bali…

 

GRIPE SESSION

 

Yesterday, after reading some posts on other Facebook sites, I thought about how positive we all have to be – ALL of the time! But, sometimes we need to let it all out, right?

So, instead of all the ‘I’m grateful for…’ or ‘I’m looking forward to…’ type discussions, I decided to encourage a GRIPE SESSION about Fibro! And WOW! What a response – it appears that we (as a group) really NEED to vent every now and then…and there is nowhere to do it.

Each post was to begin with ‘I hate’. The first one is mine. The remainder are the unedited comments from the post. Feel free to add yours in the comments area.

I HATE that I had to phone my Mommy at 10pm last night, for help, because I was in so much pain that I couldn’t lift my head, let alone get myself into bed! I HATE that I have a giant pile of clean laundry sitting in my bedroom that I haven’t got the energy to put away properly! I HATE that there is stuff all over my house because I need to say that I’ll put it away later! I HATE that I was unable to go more than 2 days without codeine!

I totally hate that I get about a chore and a half done and I feel like I could sleep for a week. I hate that I have to take naps throughout the day. I hate the my guy doesn’t understand what I go through and looks at me as lazy. I hate that I don’t have the ambition I used to and that the depression makes me wonder why I even try to fight each day. I hate that almost nobody I know understands my medical issues and looks at me like I’m worthless and less of a person.

I hate that I can’t play the sports that I used to love playing!

i hate that everyone thinks they “know” how i feel! really, you dont! i hate that im constantly ruining plans with my kids and friends. and lastly i hate how im not the person i want to be or used to be

I HATE always having to say I hurt and having people look at me like I grew 2 extra heads. I HATE not being able to go hiking, bike rides, a walk on the beach or even cleaning my house like I used to!

I HATE that I have to LIVE taking a handful of pills to feel somewhat normal! I HATE that I can’t just get up & enjoy the day, playing, going out around town with my kids! I HATE not being able to do any physical exercises to help strengthen me! I HATE not being able to clean my house daily, fold & put away clothes!! I HATE that I can never sleep without taking tranquilizers!!! I HATE FIBRO!!!!!

I hate that people think I’m fat and lazy. I hate that others just look at me and automatically assume i can do anything they ask me to do and if i have to say no, they get upset. I hate that i feel i sleep most of my life away. I hate that i can’t clean my house by myself. Ugh!

I HATE FIBROMYALGIA AND ALL IT HAS CHANGED ABOUT ME! PERIOD…

I hate that some people think I’m stupid because the fibro fog makes me stumble over my words. (I’m not stupid…I’m a PhD student!) I also hate that I can’t enjoy day-long activities that involve plenty of walking (like going to a Renaissance fair or state fair) without getting completely exhausted. And I hate having allodynia, especially when my husband is trying to be affectionate.

I hate that my muscles have been in spasm since Tuesday. I hate that I had to take Roxicet and a muscle relaxer, which made me sleep instead of live. I hate that I have a bunch of clean laundry that I can’t even fold, much less put away. I hate when I’m so tired I just want to sleep for a week. I hate that, although I’m excited about my upcoming vacation, I’m scared that I will be too sick to enjoy it or do the things we have planned and paid for. I hate that I have this stupid fucking disease!

Theres a List, but I cant say………… what I really want to!

I hate’ that I have to take breaks everytime I do things!!!. My energy is never high!!. Thanks Fibro

I HATE THAT I HAVE NOT BEEN ABLE IN 10 YRS DO CLEAN MY HOME OR WLAK MY DOG OR WALK FOR ME!!!!!

It is a new day everyday . The sin gets worse with age!

I HATE Being in pain and crying myself to sleep. I HATE that my ankles swell up so bad. I HATE the days that my feet hurt to touch the ground and my hands hurt to hold my phone and it hurts to talk. I HATE that I don’t want to go out anymore because once the pain hits I just want to go home. I HATE that no matter how many hours of sleep I get I am still tired. I HATE that people don’t understand what I go thru. I HATE that My meds don’t help me. I HATE that I always sound like I am complaining when I say I am in pain.

I hate that I had to have a neighbor come over today and clean my house so that the chimney and furnace guys could get to what they need to get to tomorrow. I hate feeling useless. I hate the fact that even with all the pills I take I still don’t feel able to do the things I need and want to do.

I think I just agree w all of the above I HATE this illness!!!

Agree!

I hate that I can’t work anymore! I hate the way people look at me thinking I’m overweight and lazy! I hate that I can’t go out with friends! I hate that my memory keeps going! I hate I can’t remember what else I hate!

I hate that I can’t work. I hate being broke. And broken. I hate not being able to be active with my daughter. I hate that I lost everything from getting sick. I hate that people don’t understand! I hate being seen as lazy! I hate being forced onto state insurance, being seen as welfare. I hate having lost interest in fun activities (too physically demanding), I hate having my dreams and desires on hold, I hate doubting they’ll ever come true now! I hate that fibro ruined my relationship with my boyfriend. I hate hurting, everyday, all day long. I hate battling with disability companies. I hate hate hate being fluorescent light intolerant!!!!!

I hate that I cant play in the park with my kids for than a min before i need a break I hate not enjoying rain I hate being so tired I dont even get dressed n stay in bed!!!!!!! FU FYBRO!!!!!

I hate that I have to agree with each and everyone hates! I hate crying myself to sleep, I hate taking all the meds, I hate that everyone thinks they know how I feel.

i hate that i go to bed hurting and then wake up hurting, i hate that i have to take narcotics every day to get such a little bit of relief, i hate that i don’t ever feel like doing anything, i have that i always feel so bad that i don’t get to go to any of the activity’s my daughter does i hate that when i do get up and go to the grocery store that by the time i am half way thru the store i hurt so bad i can hardly walk and i could go on and on and on

I feel the VERY SAME WAY on a daily basis!

I hate it all! I hate I have to keep a bag of meds beside me all the time everywhere I go, I hate that I get tired and have to stop less than half the way through a chore I need to do for the house. I hate that my child always feels the need to ask how I’m feeling everyday and how I have to ruin some plans if its a really bad day. I hate I am no longer a “productive” person and I am not able to do the jobs that I have the education and certification to do. I hate never having any energy. I hate that the couch is more comfortable than the bed for me and don’t get to sleep beside my husband for more than a few hours cause my hips and back hurt so bad. I hate the judgement from others at the amount and type medicine I have to take everyday. I hate when people say they have the same condition as I do and pop 2 advils or tylenol and it makes them better–they don’t hurt like I do.

I hate that I am not working, I hate that I can’t clean my home the way I want to I hate that I hurt I hate that everyday can’t be a good day. Thank you

I hate hurting everyday, I hate that I don’t feel like going to see my family more, I hate that I can not do the things I want to because of the pain.

I agree and also hate everything mentioned above. I hate that I also passed this to my oldest daughter, and she has it worse than me. I hate that my house is always a pig sty. I hate that I fight with my youngest daughter every time she wants to go shopping because I don’t have the energy to even think about walking around a store. I hate that she thinks I don’t love her because of this. I hate, hate, hate FIBROMYALGIA!

I hate that when I get out of bed in the morning every morning.I feel about 95 not 33 and my body hurts like i’ve got the flu everyday…No one understands!!!!!! That I still have to try and live a normal adult life,work,clean the house and take care of my children as if i’m not suffering ever moment….I’m an aide which I love but I want to be the person in that hospital bed most of the time>>>LOL…Besides all thatLife is wonderful!!!!! Bless everyone who has to deal with some sort of chronic pain.

I hate the fact I am always in pain and I feel like I am worthless because I have a chronic illness

This is great to hear all of this from others to know that I am not alone in my tears and frustrations. I am irritated the most by people who really never comprehend what I go through daily. I also cannot stand when that look of confusion or pity comes over their faces. I was such an active person and while I keep fighting, I feel like I am losing the battle. I cannot give up because I refuse to let this take everything from me. So I struggle through the pain and fatigue, praying for a break, in what seems to be a neverending flare! I long to be the physically and mentally strong person I used to be. Why can’t these damn docs come up with a better plan knowing how many people are pained by this? Why are we seen as jokes when we file for disability? I worry about my future…

I despise that there are so many millions of people that suffer from chronic pain, lack of sleep and not having a great support system within their own environment. After reading all these comments, I am sadden that soooo many struggle, yet I am delighted to know I am not alone!!!!

I just miss sleep. Real, deep, restful sleep!

Omg, I need to add one to my list. I HATE that my boyfriend down plays my illness and multitude of dibilitating symptoms, he gives me absolutely no empathy, sympathy, understanding, etc., he has called me worthless, he doesn’t even try to understand….. But…. When HE hurts, or is sick, or has a headache… He whines to me about me! And wants my sympathy!!! Really???? I HATE THAT!!!!

i hate that the pain never stops, hate that i can’t clean my house the way i used to, hate that i can’t go shopping without being wiped out ad hurting for days, hate that i don’t have the eergy t spend time with my kids, hate that this has robbed me from having a normal relationship with my husband, hate that fibro has destroyed my life!

I hate that I can relate to every hate above. I hate that I am a shut-in. I hate that I was awoken at 5:20 am on this Sunday because the pain was so…. intense. I hate that I don’t believe there will ever be a cure for this illness :/ XOxo… “God bless, prayers to all.”

I hate, HATE HATE all that fibro’s taken away from me ~ the ability to work, can’t walk for more than half a mile (the crippled foot adds to that), travel is so hard, hate that I can’t even clean my own home, hate that taking my dog to the park is so exhausting I’m laid up for two days afterwards, hate that even taking the top down on my car is too much, hate that I can’t remember so much of what’s been going on around me and in front of my very eyes, hate that the best thing I’m supposed to do is get some cardio, and I hate cardio because it just wipes me out, even when I start small and try to build on it. And I hate that very few people understand the insidiousness of this chronic pain disease shit. My husband tries to understand, but he still doesn’t really get it. But I WILL NOT LAY DOWN AND DIE, DAMMIT. I will ALWAYS get back up again.

I hate being this young and feeling so old. I hate being in tears after a day at the zoo with my boys. I hate the frustration of being unable to exercise and be in shape. So depressing. I hate taking so long to try to even get out of bed.

I hate not being able to have my old life!

I hate the fact that I am a fraction of the person I used to be. I hate the fact that I don’t want people to touch me because it hurts too much…

I rather die, that live forever kneeling…

I hate…that I could not get up to go to church! I hate that in the afternoon I went garage sale shopping (my favorite) and had to give up and go to my daughters house and lay on her couch because I was completely drained. I hate not taking any pain killers because out of my own free will decided to leave them cold turkey since last January. I will NOT go back on them. I hate the depression I have had for over 10 months, I seldom leave my house.

Even through all of this I am so thankful to God for His many blessings.

I hate that a good day is a 3 on the pain scale. I hate that everyone wants to compare my pain or muscle spasms to theirs and tell me to eat bananas! I hate that I never have enough energy to do make a shopping trip. I hate that look of disappointment on my husbands face when he asks how I feel today. I hate that no medicine helps more than it hurts. I hate that my house is dirty. I HATE FIBRO!!!

I HATE..that I am getting worse and that my brain doesnt work. I hate it when I hear people tell me to be POSITIVE as they dont know what else they can say. I HATE it when friends look at me and knowing that they are questioning my condition. I HATE it that I had to give up work..I HATE it that I cant plan anything. I HATE it that I cant go to the gym anymore and that I cant go for long walks. I HATE it when I go blank at the check out counter and feel so embarassed when I cant reply to a question…most of all I HATE not being able to jump out of bed and get dressed and enjoy the activities of the day! Saying all that…I AM GRATEFUL for the few activities I can do and also the love and understanding of my husband and girls 🙂

I hate that I can identify with what so many of you said. I hate not being able to make plans b/c I don’t know how I’ll feel from day to day. I hate going to sleep in pain, getting up throughout the night b/c of pain, and finally, waking up in pain. I hate that when I tell someone I’m not in a mood to talk, going out, etc. b/c I’ve been up all night in pain, that I’m told to “suck it up.”

I hate that my kids have turned into teenagers while I’ve sat in my recliner. I REALLY hate that. I hate that my daughter waited and waited for me to get better so I could pick her up again, and then suddenly she’s the same height as me and 13 years old. I hate that I can’t take her shopping. I hate that I can’t be there for my boys. I hate that my husband has to work his ass off all day, leave work early to pick up the kids from school (I can’t drive), comes home, cooks dinner, takes care of me, then finishes the remaining two to three hours of work that he has left. Every.Damn.Day. I hate that I can’t be intimate with him because EVERYTHING hurts. I hate that so bad. I hate the weight I’ve gained. I hate that I’m tethered to my meds. I hate that I cannot think, cannot speak, everything is either a “what’s it called” or a “thingy”. I used to be a smart person. I hate that I sleep until noon every day of my life. I slept until 2pm today even. I hate the cold sweats I get from the meds. I hate the aches, God knows I HATE THE ACHES. I hate that people think they know how I feel. I hate forgetting what I’m saying in the middle of my sentence on a regular basis. And wow, I apparently reallllly needed to vent! I do thank God every day for the blessings I do have though. Sigh.

I hate that I don’t sleep at night cause I wake up in constant pain, tired all day, and iritable from lack of sleep. I hate that the only time I feel good is when it’s a constant 100 degrees or above, we need the rain so bad. Which in turn makes me hurt like crazy. I hate not having a clean house, and constanly having to have my 16yr old son help me out cleaning and doing dishes. I hate that all the activitties I want to do I can no longer do. Like hiking, going for a just a walk in the neighborhood, and walk the dogs. I hate the pity, or the what’s that? With the look in return that I’m full of crap. I hate that I’ve gained so much weight and really have no energy to try to work it off. I hate when we actually go to do something I have to say I can’t stay out cause I hurt so bad I just want to go to bed.

(takes a deep breath- ouch) well thats the first hate, i HATE it when it hurts to breathe, i hate it that i can feel my blood pump through my body and my heart beat .i hate that each pump and beat is painful. i hate my feet being so sore it feels like i’m walking on hot glass shards.i hate the pain that moves all around my body. i hate the fact i have pulled muscles and trapped nerves 5 times in 3 weeks in my neck, back and ribs just from wiping my arse.i hate that my hands are too cramped and painful to type properly, to brush my hair, hold a phone or pen, hold a book up to read,i hate that it hurts to drive my car and that i have to take my kids shopping with me so that i dont have to push a trolley.i hate being hungry all the time but unable to eat cos my body says no. i hate it when i DO eat that i may as well chuck it straight down the loo as i cant keep it in.i hate it that i cant eat foods i used to ( like cereal/milk.cheese.bread ) i hate the way my eyes feel like they burning cold and my skin is sore to the touch yet sorta numb too .i hate feeling like a human scrunchie.i hate needing to pee 20 times an hour.i hate the migraines which last for days and seem to come in clusters.i hate the numbness, facial neuralgia,muscle/nerve twitches and poor balance.i hate the fibro fog and the way it affects my speach,i hate being fatigued but unable to sleep or rest, then falling asleep at the drop of a hat when i dont want to and having no energy.i HATE that i am having to go to a benefits tribunal because someone doesnt see that i am in pain and assumes because i struggle to do something and am not howling in pain, that it isnt painful. SORRY i have learnt that howling in pain doesnt make it better so (waste more energy doing that?)i hate the “officials” who assume we’re all fakers and that we can work/carry on and ignore the pain or be ” normal” because we’re on pain medication..i hate that i feel so issolated and alone and sad.i hate that i’ve lost people to suicide and always said i couldnt understand why they did it.. and although i wouldnt do it myself… i HATE the way i can now understand their desperation.. and finally i HATE the way i need to write this.sorry it was a long one.

I HATE that I can’t run like I could. I hate that a 2 mile run makes me feel exhausted like a 10-miler used to. I HATE the side effects of my celexa.

I hate everything about it. I lost my old life. I have no energy to do anything. Sleep doesn’t even help anymore! I just HATE it!!!

i hate that I am so tired, and lately so depressed. I hate the fact that I start something and have to stop because I hurt so much. I hate that just because I try to keep positive, people think there’s nothing wrong. I hate that people don’t realize how badly I feel sometimes. I hate that I forget what I am about to say at mid-sentence. I hate that I can’t lay still for more than a few seconds so I’ve taken to sleeping by myself, and not with my husband I hate that my skin feels like it’s on fire. I hate that I feel as if I am losing my mind. I hate that I am sick.

I hate that I missed my 30 year class reunion. Tiredness, achy joints n muscles wouldn’t let me leave the house. I hate I’m always drained, n when I do feel like doing something, it’s what I want to do and I don’t have the energy for others, n they think I’m being selfish. I hate that feelin, when my daughter calls n says let go out of town n I’m too tired/fatigued.

No, sleep is not refreshing…. Always tired.

I hate more than anything that the other day my 12yr old asked “mom, can I get Fibro” God I hope not.. and the days I have to say, not right now, I need to rest and dnt feel like it. I hate that I love my kids and husband so much but they feel like I never have time and energy for them…mom needs a nap is said way to much in our house… I hate that I’m so SAD…

I HATE when all of a sudden you can’t move your neck and it freezes up into the back of your head ! It’s very aggravating!!!

I HATE not having energy to do anything! i hate that my feet hurt and feel as if i have cinder blocks hanging from my abkles! i hate that people dont understand my pain! i

All I can say is you took the words right out of my mouth! I hate it, hate my body. Try to remember that God does not letting anything happen without a reason, and that Glory to Him will be given and that maybe I can help someone else. Or, at the least, understand. We are starting a support group on Thurs…

I hate hurting all the time to I hate not having any energy to.

The comment about not being able to eat caught my attenction. Have you tried gluten free? It has helped me. As a matter of fact, I went rebel and ate anything and everything I wanted last week, it sent me into an awful flare, worst than a long time. A few days of not eating it, and I am feeling a little better. I threw up everyday before stopping eating it

I hate that all but three of my friends have disappeared, even some that I thought would support me. I hate when people ask “how are you feeling today?” and I can’t think of anything to say that’s hones, because they want to hear “I’m OK”. As if I’m suddenly going to wake up and be cured… I hate that I got nothing done all weekend due to a pain flare, but I needed to do so much. I hate that I’m single and have no choice but to continue working, even with intense pain every day. I hate that my employer has threatened to fire me for being a few minutes late, when most days it’s all I can do to even get our of be. I hate sleeping with a CPAP, choking in my sleep and waking up feeling even worse.

I HATE that I don’t feel like “me” any more. Instead, I feel like a person that is 30 years older than “me” and those 30 years have not been good to “me”. I feel old and broken. I HATE that I can’t think like “me”, I can’t talk like “me”, and I can’t move like “me”. I HATE that I may never be “me” again. I REALLY HATE that I understand exactly how all of you feel! . . . And lastly, I HATE that we all have to put our thoughts into facebook because we are all the only ones that really understand each other. (((Gentle Hugs to All)))

I hate that I can not do things normal 32 year old people can! I hate have no energy to clean, exercise, play with my son, enjoy alone time with my sig other! That I had to call in this weekend because I was in pain, or at work that I can be out run by elderly people in wheel chairs! I hate that I am in constant pain, depressed and take more meds then anyone my age should! I hate that I have to spend a lot of $ on meds and doc appointments! I hate that I have to give up things I enjoy gardening, having an occasional drink, etc!! I hate it when you have to explain yourself over and over about why you never feel good or can’t do things you use to or why you move so slow! I hate that my son does not have a healthy MOM!! I hate when I can’t sleep or when you do sleep the pain wakes you up! I hate feeling isolated and alone! I hate that this disease controls every aspect of MY LIFE! I hate that people have to worry about me or constantly pick up my slack! I hate when people ask how you are?! I hate that sometimes doing the normal everyday things make me tired like taking a shower or walking up steps! I HATE THAT THERE IS NO CURE OR HOPE FOR A CURE FOR ALL OF US!!!!!

I hate that this disease has changed me as a person and stole my youth!

I hate that I can’t function like I used to be able to. I feel like something just took over my body and I cant’ do anything about it and I hate that. I hate that people do not understand my pain, my extreme fatique. I hate that after two months of working full time, I begin to get sick all the time, I fall asleep at the wheel and I start performing poorly when I actually think I am doing a great job. I hate that I can’t find a complete fix and I hate that I can’t enjoy eating what others can enjoy.

I also hate that all my “friends” are no longer around and never even call or invite me or include me in any event or outings they may be getting together. I hate the feeling of isolation, loneliness, depression and uselessness that I feel. I hate that I feel like I don’t have a purpose anymore.

I also hate that my son has to see his mom crying and is to young to understand why his mom is sad so much!

I hate all of the above constantly every single day!

I hate that I took my last Percocet today! I hate being too nauseated to eat! I hate letting myself down on my therapy goals because I’m so tired! I hate being looked at and spoken to like I’m a fraud when I need to use my disabled tag! I hate that there are days I’m too exhausted to take my medications! I hate that my insurance company feels it has the right to take me off of a medication that has helped at least some and force me to try an outdated antidepressant! And most of all, I hate that this post ever had to exist, for any of us!

i hate not being able to recall the last time i experienced a day without pain and fatigue

I hate that I have lost who is was. I hate I can’t do the things I could do before. I hate that my kids have to see me suffer. I hate I can’t do things with my kids when I want. I hate that my fiancé has to see me breaking down. I hate I can’t be the mom or fiancé I want to be. I hate that I hate so many things because I always taught my kids not to hate. I hate trying to act like I am not angry and hating all the time. I hate having to ACT happy or ACT like I am not in pain because people think you are weak. I hate that people think we are lazy! Thank you group. Hugs.

I hate that what I used to accomplish in a day or two now takes me a week or more. I hate how it has aged me. I hate how everything has to be planned in advance and even then I may not feel well enough to go. This was vocalized when my youngest was in grade school and he said “Mom spoils everything.” I hate that I will never fall in love again because who would want to be with someone who always feels like crap? I hate how it contributed to the ending of my 30yr marriage. I hate how my kids don’t care

I hate not being able to take my 2yr old to the park on my own…i hate not being able to have long days out with my children…i hate not being the way I used to be…i hate the fact even cleaning the house makes me ache so much I can hardly move…i hate the days where I cnt even get up my stairs…i hate wen im having a bad day and dnt have the energy to move so I lie on the settee and think that people think im lazy…i hate not being able to walk far…i hate not remembering wot it feels like to be pain free…i hate the fact I was a fit healthy person until my ex threw a bottle at my head…i hate that I worry how this is gonna affect me wen im a lot older…i hate healthy people who abuse there bodies and dnt know how lucky they are…i hate that some days im in to much pain for you to cuddle to…i hate that I could write loads more things about wot I hate, wen all i wanna write is how much i love waking up fresh and healthy…and most of all, i hate fibromyalgia exists and their is nothing to really help us x

I hate everything about fibromyalgia, the pain, the extreme fatique , the list can go on & on & on. I wish that I could wake up for once and feel refrehed and energenic.I wish my depression would go away. I wish that people would stop saying, well you look fine, why can’t you work. Fibro really really sucks bigtime…

I can relate to each and every one of you… I Hate not being able to sleep through the night without getting up and taking pain meds, I Hate that I can not sleep, I go to bed tired & hurting and wake up just as exhausted or more so, I Hate that I can no longer work, I Hate not being able to make plans and stick to them, I Hate not being able to spend time with my grandbabies like I want to… I Hate the feeling of fatique & not having the energy I used to, some days simple tasks seems like climbing a mountain, I hate the feelings of disappointment, worthlessness, depression, etc…. I HATE FIBRO!!!!!!!!!!!

I hate that I am in so much agony that I couldn’t enjoy my visit with my grandkids this weekend. I hate that I too have piles of clean laundry that needs attention and there are so many unfinished chores in my house because I am in so much pain or too fatigued. I hate that I need to give up today and take the demerol. I won’t say “good night” because my body apparently has other plans.

I hate fibro and all it does to a once healthy active body

I hate fibro, because I am no longer the person I was. Hugs for all of you who are suffering to.

I hate what fibro does to my partner, after her first collapse in November I felt like somebody robbed me of her like just one day I woke up and there was a stranger in my bed, after a break and a lot of hard work I am slowly getting to know the woman I love again. I hate that at 5 years old our son has to get his head around a complex medical condition and worries about Mum all the time when he should be thinking about playing and the park and just being 5… But mostly… I hate that I can’t do anything about it I hate how useless I feel every day and I hate that sometimes she looks at me and I know that she thinks I don’t understand when I’m trying my hardest too.

I hate tha I have to agree with 99% of the above, and that doctors and others just say it’s only in your head. nothing wrong with you. just get up and get going.

I hate that I have no life anymore. I hate that most of the time that I don’t see my kids. I hate that my gorgeous eldest daughter has to run my house and look after my children because I can’t. It does help that she still lives at home with me though. I hate that I’ve lost every body cos they don’t understand what I’m going through I do in a way understand how boring and depressing it must of been for them though. I hate that most days I can’t even dry and straighten my unruly hair. I hate that I spend days not being able to sleep then days when I can’t stay awake. I hate having to take pills every day just to get through to the next. I hate feeling so down and depressed. I actually hate being alive and I hate that I still can’t come to terms with the fact I don’t have a life anymore

I hate that I just at a breakdown and my husband feels helpless…I hate that my hands dont work and I cant even prepare a simple meal! I hate that every part of me hurts and all I want is for the burning feeling to stop. I hate having to vent on facebook and that how only fellow sufferers know what its like to have your independence slowly crumbling away :'(

I hate that I can’t walk, and have to use a wheelchair, and most places are wheelchair inaccessible – even if they claim they are.

i hate every symptom of fibromyalgia but what i hate worse is the medical industry that exploits it….under- mediating or over-medicating as how it suits their profit!

I hate waking up still with the pain I went to bed with, I hate not being the person I was, I just hate not being able to do anything in this Fibro state. Love and hugs to all x

I hate when people say “you’re too young to know what it’s like to have your joints ache”, etc. No one understands! I want my life back! I’ve had this since my late 20’s and it’s not fair but I have to deal with it. I hate not knowing how I’m going to feel day to day. I hate when someone accidentally pushes on one of my pressure points and I want to scream because it hurts soooo much! I hate going to bed early just so I don’t have to feel the pain in my sleep.

I hate that my house is the messiest of everyone I know! I hate that my teenage girl will never have a “partner” to help her train for athletics! I hate that loving my family through hugs actually hurts me physically!! I hate that nobody ever understands. And MOST OF ALL, I hate when people say that “they hurt too”, it’s just a sign of the times with aging and “I’m lucky I don’t have…….Whatever!!!! Whew! I feel better! Thanks!

I HATE that my loving daughter has this FIBRO…

I HATE that I am crying so much that I can’t finish reading (and ‘liking’ – want to support you all) all the comments. I HATE that I understand so well what you are all saying – except for the parenting bits (and that is another HATE – I was not able to be a mum because of Fibro). I HATE that I can’t do everything that I want to do in life, that I can’t plan ahead properly, that I often need to cancel/change plans (I was meant to go to a family party this weekend, but could not cope with the 6 hour drive each way), that I rarely get a good night’s sleep, that I mostly rely on painkillers to get through the day, that I cannot join in with my friends on their long horse rides, that I had to give up running (except for an occasional short jog), that I get confused and forget stuff all the time (I used to be a Director’s PA and super-organised), that I always get travel sick now, that it affects my wonderful hubby and so much more. Gentle hugs to everyone. Ali x

I have just been to opticians who told me the issues I am having with my sight is due to my muscle spasms and that it takes me time to focus and not my actual sight. Another bloody thing to add to the list.

Also missed out on going to London yesterday with my daughter and a friend as knew it would be too much and would end up spending rest of week in bed. They ended up seeing stars from jls, diversity and pussy cat dols as well as chance of being on tv. All cause of stupid condition. Have missed out on so many things this year including my nephews 21st birthday party. I never know til last minute whether I am gonna be well enough to go anywhere.

I hate that it took my life away from me! I hate crying so much from the pain. I hate having to rely on medication. I hate EVERYTHING that has come with this demon living inside my body. I LOVE getting it out to vent. This was a great idea! Thank you!!

I hate when people think I am lazy because I always hurt and my energy drain, I hate the ideas of living of Fibromyalgia and make me wish I never wake up and go through another day of suffering, I hate when I am sad or need nap a lot. I hate when they judge me without understanding what kind of day I going through. I hate when there is no cure for Fibromyalgia. I hate when people think they can tell me how to eat or do to cure the pain when it is not working as all, I hate when all I thinking of just ending my life because I can’t deal another day of endure pain. I hate when people think I am faking it when it so real. I hate when I cried all the time knowing I break my promising when I can’t get up and do it. I hate to feel the burn and aches. I hate taking pills knowing it will destroying my livers, I hate everything about the fibromyalgia that I had to live daily. I really HATE my life the disease that I had to carry on for the rest of my life.

I HATE the fact that I could have written any of the above, the fact that I cannot get a proper breath tonight has not stopped me sobbing madly with total understanding & empathy for you all, but, I solemnly swear now that my confusion & depression regarding this demon has turned to anger which has given me a quest for answers & I will not be silenced until I get them for us all. Stay strong in mind & we will beat this together! xx

 

Grow Up!

 

I found this inspiring. It is Leah Tyler‘s blogpost from Chronicles of Fibromyalgia (published Thursday August 9th):

The other day I was doing dishes and thinking about the 75 million steps in life I have taken to bring the Fibro dragon down. I remembered the scared frightened girl who got sick with something nobody knew much about. I thought about the years of misery, just plain misery, I endured as I searched for the steps to reduce the impact Fibromyalgia had on my life. And then I started laughing. Because I remembered that scared frightened girl had a lot of anger, and a fair amount was directed at my parents. They didn’t do anything wrong to deserve it per say, but I still shot blame at them. If Fibromyalgia is genetic or the result of an overdriven personality it was their fault I got sick, not mine. I mean they made me and they raise me so why wouldn’t it be? While my bank accounts fell deeper into the red I decided they should pay my medical bills because they had done something, albeit unwittingly, to cause this horrible illness to invade my life. It wasn’t my fault, it was theirs.
Flash forward five years and that thought pattern is precisely why I was standing in my kitchen laughing my head off. Boy you sure have grown up, I thought to myself. Because in the years between blaming the world and getting Fibromyalgia to a manageable place I did precisely that, grew up. It’s what allowed me to get control of my life, educate myself and figure out what was going on inside my body. Take action and seek success no matter the sacrifice. Insist on results regardless of how much hard work it took. Oh yes I wanted to give up many times. Still do, on any given day depending on how that day happens to be going. But now the thought of crediting my parents for my problems and expecting them to fix them seems simply preposterous.
Ultimately taking full responsibility for my circumstances, no matter the source or cause, is what’s allowed me to prevail and keep going. And still to this day as challenges arise it is picking up that bag of blame and hurling it as far away as possible that forces forward progress. Who on earth cares whose fault it is? What matters is what I do with the difficulties that land in my lap. I can find plenty of people to blame everything on, but what good is that? For me it only incites panic and bitterness. No, I much prefer to take control and deal with things on my terms as I see fit. Life is never short of challenges. From the perspective I have today I believe they are part of what keep us growing, improving and thriving in life. It took serious health problems of epic proportions to break me down and build me back up to this point of view, though. That and the values instilled in me by my parents.

 

11 Ways to Cope With a Lack of Fibro Support

If you are in chronic pain (and which of us fibroMAGICians isn’t?), it’s challenging for you and your friends and family. This is particularly true if you have an ‘invisible’ condition like FM, which is hard for other people to understand.

I know that it isn’t always easy to ask for help; or to find the money to do some of these things, but hopefully, you will find something here that is helpful.

Fibro Fog – Feels Like Early Dementia

Having trouble explaining Fibro Fog to some-one else – or they just don’t believe you?
Sometimes all it takes is another person to describe it:

Time to Collaborate with the FibroCollaborative Working Group

Forget GPs who don’t know anything about Fibro – we can now help them (although it is much more reassuring when they know their medical stuff)!

Four fibromyalgia specialists – Lesley M Arnold, Daniel J Clauw, L Jean Dunegan, and Dennis C Turk – have developed an educational framework that primary care doctors can use as a guide to best practices in fibromyalgia case management. Yippee!

The guide – A Framework for Fibromyalgia Management for Primary Care Providers – was published in the May 2012 issue of Mayo Clinic Proceedings.

Although aimed at GPs. the guide is written clearly and succinctly enough to help us inform ourselves as it educates and guides our doctors.

Special features include:

1. A flow chart of key FM case management tasks and objectives.

2. A table of basic pharmaceutical therapy guidance – e.g., dosing considerations and possible outcomes/implications for each FDA-approved drug option mentioned.

3. Similar information regarding non-drug therapies.

4. Links to educational resources that are helpful to inform patients;

5. And, for physicians, links to 45 footnoted sources in the medical literature that provide ‘evidence-based’ background for many aspects of fibromyalgia and FM patient care discussed in the guide.

The new Framework for Fibromyalgia Management for Primary Care Providers is part of the FibroCollaborative Working Group’s 2010 Roadmap for Change – an initiative sponsored by Pfizer and supported by representatives of more than 20 fibromyalgia medical/professional and advocacy organisations across the US.

Stand up, guys, and be your own advocate! You deserve the best treatment available!

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.”