"The Different Stages of Fibromyalgia"

On one of the pages I visit frequently to get support for my chronic pain and Fibromyalgia there was a post written today about the different stages of Fibromyalgia. I wanted to share it with you all. I think it is very important to remember than WE ARE ALL extremely different in how our illnesses affect us and we all go through different stages and we even go between stages, But one of the most important thing we need to remember to continue to be there for each other. This post can be found on the Facebook page Dear Fibromyalgia  and this post was by Written by Angela Wise

A lot of us have come together on this site and others.. because we all have one thing in common…FIBROMYALGIA.. FIBRO-MY-ALGIA, sometime in our past, recent or further …we have been told we have fibromyalgia. Fibromyalgia is a syndrome in which a person has long-term, body-wide pain and tenderness in the joints, muscles, tendons, and other soft tissues and BLAH BLAH BLAH you know the rest.. for GODS sake we live it everyday…we are more than a diagnosis, and we should not all be lumped together as a whole, there should be stages, and this is why.

Stage 1 Fibromyalgia should be for those that have recently been finding out that they are experiencing more pain and fatigue than before, you’re not sure what is going on but you hurt and your tired.. you can still go to work, you can still make it through your day, but you know something isn’t right..so it’s something you’re going to bring up at your next routine doctor's visit.

Stage 2 You are in pain a lot , sometimes taking an Advil or ibuprofen or what have you .. you get a little relief, you have already been diagnosed with fibromyalgia, and you have accepted the fact this is something you are going to have to live with, you feel a lot of pain and you are exhausted almost every day…but for the most part you keep going and hold down a job, can still go to events, spend time with your friends and loved ones..and have somewhat of a good time…

Stage 3 You are in constant pain, you are constantly tired, more often than not.. you question yourself whether you will be able to function normally anymore.. you are thinking about maybe not working because you no longer have the energy you once had..you get home from work and all you can do is rest..friends call and you have to turn down the invites..you have no energy left and you have to rest up just to go back tomorrow…in this stage you start to feel more alone..and more and more people are beginning to think you whine an awful lot. And this stage can last a long time, years even…

Stage 4 You are in pain all the time, good days are few and far between…your calling into work sick more than you even make it in…you’re in bed a good portion of your day.. when you do have a good day you take advantage of it, and do as much as you can, all the things you have left in the past weeks you cram into your day… knowing tomorrow you will be paying for it..possibly even up to a month..but you do it anyway.. because you finally feel good enough to do SOMETHING! By this time your friends make plans without you, they already know your excuses and are 99% positive you will say no.. so they don’t even bother to ask anymore..your family begins to think you are using fibromyalgia as an excuse to not do things.. because stages 1-3 you were able to do some of those things even with fibromyalgia, now you can’t..so OBVIOUSLY you are using your diagnosis to get out of everything..you feel alone, isolated, worried..emotional, sad, and well..did I mention you feel alone? This stage can last years as well.

Stage 5 You have already been let go or have quit your job, you are asking questions about permanent disability and how long it takes.. hoping a majority of people will say 3-6 months tops…but instead your fearful of the horror stories about everyone being denied and it taking years for most..you are struggling to make ends meet.. maybe you moved someone in to help or moved in with someone to save…you spend a lot of your day in bed.. although you still take advantage of that one good day once in awhile..you are sore, very sore.. you cry a lot… you feel like a prisoner in your own skin..by this time you have already explained to your friends that it still feels good to be invited even if you don’t go..they invite you to a few things the next week and then things go right back to the usual..laying in bed crying.. feeling alone.. feeling abandoned..misunderstood..and you have found that the only people that you can relate to are other people whom have been diagnosed with fibromyalgia..what a good feeling..not so alone anymore.. and you wish that your friends and family could see what its really about… this stage can also last for years...

Stage 6 (The final Stage)- You may or may not still be waiting on disability, Fibromyalgia is now a way of living, most of your friends are those living with fibromyalgia themselves, everything you do takes your precious energy..simple daily tasks you took for granted in earlier stages, going to the bathroom, washing your hair, taking a shower, getting dressed, tying your shoes..even your everyday jewelry irritates the shit out of your skin..no energy or desire to put on “your face” before going out..no energy to curl or straighten your hair..with all the medication you are on or have tried, you are dealing with those side effects as well as living with fibromyalgia..you now have Netflix or Hulu because going to the movies happens very rarely..very very rarely..and you are human and still enjoy some normal things..like watching tv… you try to stay current on any news regarding fibromyalgia, in hopes they are closer to finding a cure… most of your friends are not around anymore.. they have things to do.. and you? Well.. you need to rest, because you just vacuumed! It’s easy to feel overwhelmed in this stage, because things are piling up around you… bills, laundry, dishes etc… you do a little everyday…you push yourself so you don’t feel like your day was wasted in bed..you feel guilty.. very guilty..you know longer pull your own weight in the house..your kids, spouse or family member get things for you more than ever.. tissues, something cold to drink, meals, blankets etc..they try to do it in a nice manner but you still feel like a burden…you can’t remember anything.. even important dates.. birthdays, anniversaries, school events etc…not only can you no longer remember shit.. when you start to say something mid-sentence you’ve forgotten what planet you even live on..let alone what it was you were going to say…(thank God for the few people that do pay attention and can tell us what we were talking about to begin with).. Also you know more about fibromyalgia in this stage then your own doctor and basically laugh when trying a new medication…same drill as before.. and same results.. nothing helps 100%...your not even sure it’s working at all…but you keep going…at this point you know who really understands and who can care less.. even your so called close family members that claim to care.. you know the truth..and you show extra love to those that get it..because after all, other than your fibro friends they are all you have left...

You may see a stage here you are currently in..some things may not be exact give or take…but I know one thing for sure.. fibromyalgia isn’t the same for all of us..just because you can work and I can’t doesn’t mean I wouldn’t love too, or I am lazy.. it could simply mean I am in a different stage than you are..which is most likely the case..It’s not fair to assume you are better or can handle more pain because you still have a social life.. our hearts ache with pain that fibromyalgia has stolen that from us.. we want it back so bad.. we live for our good days, and we support each other through the bad..please do not judge others before knowing their journey…it’s not your responsibility to decide what stage someone else is in..we are fighting the same battle.. we all want the same cure..we need to try to stay positive to help others through the bad days, so they will return the favor when we have our bad days..love goes a long way.. don’t be afraid to love someone with fibromyalgia..we have some of the biggest hearts.. because we of all people know exactly what it’s like to be misunderstood… thank you for reading- Feel free to share.

I would be curious to hear your thoughts on this, What stages are you in? Me personally I tend to go between stages 4-6. I thought this post was fantastic and wanted to share this with you all. 

I have been working on a very important post in regards to the outrageous untruths and hurtful things that are being passed around in regards to the new CDC guidelines and the "opiate epidemic". I have an excellent personal story to share, and of course the US Pain Foundation has been on the frontlines in fighting to get OUR voices out there. WE DESERVE a voice and to let the world know that there is an ENTIRE community of us that suffer from Chronic pain that ARE NOT ADDICTS! So please stay tuned. I am sorry it has taken me some time to get this up, Between my own illnesses, writing to CNN, my Representatives, and all the shows I have seen that Dr's are going on and talking about this I want to collect as much information as possible so that I can be factual in my post. Education is the most important factor in our fight! 

Pain Warriors Keep on Fighting! Remember ONE DAY AT A TIME!!! Here are some helpful links if you would like to get involved or would like more information (or you are just looking for some extra support, resources and answers!) You may not think that your voice counts, but one voice speaks VOLUMES and the more voices we have united in our community can make a difference. 

There are MANY ways to get involved, just remember YOU ARE NOT ALONE! 

US Pain Foundation

Power of Pain

Fibro Talk

Patients Not Addicts

There ARE MANY, MANY more sites as well but these are GREAT starts Especially the US Pain Foundation! I can not say enough great things about them! Please stay tuned for my post on the new CDC guidelines and the medication access that is being denied to patients with Chronic Pain. THIS IS SO IMPORTANT!! 

And A BIG THANK YOU to Angela Wise for this amazing post on the stages of Fibromyalgia! Thank you!!! 

Gentle Hugs and Butterfly Kisses! 

KatesMarie

You Learn to Live With the Unexpected

 
 One of the hardest adjustments I have had to learn to live with is learning to "pace" myself, accepting that I can no longer do the things I once could. Believe me on those BEAUTIFUL DAYS all you want to do is get outside and take advantage of EVERY SINGLE SECOND OF THE DAY. For the most part during the "warmer months" I tend to feel better, but not always. I still have to remember that my body just can't go on a mile long hike, or go out every day and do things, simple things even things that may not require that much energy to others.
You may have (or not) heard about the "spoon theory" or heard people who suffer from invisible or auto-immune, chronic pain disabilities referred to as "spoonies", yes it is a funny term . . . I even kind of laughed when I first heard the term, but now it's the best way I know of how to explain to others how I have to ration my energy to people. You see most people have an unlimited number of spoons; those of us who suffer from a chronic illness do not. So for example we have 12 spoons each day, that's it, no more.

Once they are gone they are gone. Now we can always borrow from the next day, but then that's one less we will have from that next day and so on. Then eventually (usually sooner than later, or for no reason at all) I wake up with no spoons or just crash and watch my remaining spoons shatter at my feet . . .  and  just like that I am bed ridden for days. By the time this is posted my Birthday will be over, because I spent my birthday and the days before in bed not able to get out of bed. Just like that my plans canceled for the rest of the beautiful week. I was to weak to get up, even check my phone to call or text anyone back. My pain so bad I could not even take a shower. This is what it's like to live with a chronic illness, You learn to Live with the Unexpected and there isn't a DAMN THING YOU CAN DO ABOUT IT. When you run out of spoons and you are hit with an overpowering exhaustion and pain. When I say exhaustion I am talking about an exhaustion that weighs your whole body down, and just because you can't get out of bed doesn't mean you're sleeping, because the pain is so bad just when you get comfortable you accidentally move sending a jolt of pain up your back or down your leg.

Or your head is pounding; your legs feel like they have pins and needles, your neck and back are aching. Just when you fall asleep the faintest of noises wakes you and the hell begins all over again. You are thirsty but too weak to get up or move, this can go on for days, and my longest "flare" I was in bed for 10 days. This is why I don't call, text, get on social media; this is why you don't hear from me. This is how I spent my Birthday. You learn to Live with the Unexpected, and you learn to Accept it. You can read how the spoon theory was born here on But You Don't Look Sick which was written by Christine Miserandino. 

Do I get angry? Sure, who wouldn't, but I don't have a choice, this is my life. The worst part is the guilt I feel for the burden I feel I am on my family, the ignorance from the people who refuse to "understand" my illnesses and the loneliness and isolation I endure from the friends I have lost. I meet people all the time, and I hear constantly "How Strong I am" or "I Promise your Health won't be a Factor in our relationship" or "I would never leave because of your health", but it only takes ONE time, ONE time for someone to actually see my narcolepsy kick in, or me to have a flare, or to get sick and end up in the hospital.

Next thing I know they are headed straight for the door. At first I thought it was because they just didn’t like me anymore, but I learned that for some it just too much, they could not handle seeing someone they cared about going through something they did not understand and not knowing how to handle it . Right now there is no cure for my disabilities; even though I am not dying today I have come close more than once.


I know I am lucky to here, you could say I am on borrowed time. Almost a year ago my Dr. and I had a conversation and I remember this conversation more clearly than I remember most. He had been over my medical file many times (believe me that’s an accomplishment) and told me he was going to speak about me at a medical conference coming up, and he asked me an odd question. He asked me if I thought humans had 9 lives like cats. I sat there for a minute and he went on and said if any human did, I did. It was a miracle I was still alive. Against all medical odds I should not be here . . . We both sat there for a moment in silence, and I realized how incredibly lucky I was to be alive. 

I had never thought of it like that before, but he was right, and it was at that moment I realized that I had not died for a reason, that there was a purpose for me being here. What, I had no idea. My Dr. and I talked about this that day in great detail and it was one of the scariest and enlightening conversations of my life and maybe that is why it sticks out more than most. Which brings me to about a week and a half ago, I struggle with whether or not to share this but I feel that I have to as it is almost insanity that this happened.

I was at the store, getting ready to leave and I wasn’t having a good day. As I was sitting in my car a gentleman approached my car, yes it startled me, I was parked in the handicapped spot, under the light, and there was a police car, and the officer was in car less than 50 feet. So I was fairly certain this gentleman was not going to harm me. He was also neatly dressed (which I know doesn’t make a difference), but it put my mind at ease. My window was already down because the night was a little warmer; the gentleman was younger and asked me if I was ok? I admit I was a bit standoffish, I had the beginning of a migraine and was feeling nauseous. I just wanted to get home and I told him so. He then asked me if he could pray for me, I was taken aback, I thought sure what harm could it do. 

He asked if he could take me hand, and when he did he jumped and he looked and me and asked if I was taking care of myself? I looked at him, and said nothing; he asked me if I was doing what I needed to do to stay healthy with my illnesses? He then told me he had a strong vision. And he prayed that I would stay healthy long enough to complete my purpose here on this Earth. I didn’t freeze, like most people would I long ago made peace with the fact that I will probably die at a younger age. When he opened his eyes he looked at me expecting me to be freaking out, I just wanted to know what the vision was, and he said he saw light and beautiful colors. I knew exactly what that meant, for I had seen that once before. This I will explain in a later post. I told him I had made peace, and he told me I had a very special purpose, and then I would be called home and he walked away.   I know this sounds insane, and maybe it is. But I have never met or seen this person in my life, how could he have known about my struggles and bringing up a purpose for me being here was what really sent a shiver down my spine for a split second. My Dr. and I had this conversation almost a year ago and here was a random guy telling me something similar, it was to say the least peculiar. As I said you learn to Live with the Unexpected.

So as I begin this year of my life, I have no expectations, that is one thing I have learned to not expect anything, that way you don’t get hurt. But I will continue on with this part of my journey and I hope you will continue with me.
Don't forget you can always subscribe by email down below or by RSS feed. Please feel free to share all social media sharing buttons are located on the bottom. Comment and please visit my BE Brave Page to support Research for Autoimmune Disorders and ME <3 


Since this post was about Flares and pain I wanted to share something positive that makes me feel well and some ways I cope with pain. One of my favorite ways to cope with pain and stress is through Mindfulness. I also use Guided imagery, Meditation and specific exercises for pain.

Mindfulness - Mindfulness takes practice but is a great way to reduce stress and is great for pain, insomnia, stress,  just about everything and anything, please check out this website here http://www.mindfulnesscds.com/  to learn about the pioneer in Mindfulness Jon Kabat Zin. If you have any questions let me know, He is one of my favorites and there are MANY places to downlowd his Mindfulness Meditations for free!

Meditation and Guided Imagery  - Here is my Pinterest link to my board of my collections of meditations and guided imagery that I have, I am always adding to this board as well.  All are free :)

Exercise  - Another way of dealing with pain is exercising here is my Pinterest Board for exercising with Chronic pain.

Remember One Day at a time, sometimes One Hour, Moment, Breath  . . . 

I leave you today with this 

Butterfly Kisses

Kates Marie 

Allow me to Introduce Myself

You may have seen me around, you may have done a double take, you may even have known me long ago and now read what I write or post on my social network sites and are curious. Some of you talk behind my back, while smiling to my face, others are not so subtle and just come right out and say what they feel or think. Some of you feel sorry for me as soon as I explain why I don't work or have a permanent  handicap hanger on my rear view mirror. There are many of you who just look at me and think "you don't look sick" or "you're too young and pretty to suffer from such a chronic illnesses" or "oh it's just in your head, you just need some sun and exercise!" Just because you have seen me around, known me in the past, or are apart of my current support system it is extremely hard when you tell me "it could be worse!" Allow me to tell you what I hear from people who have "seen me around" and I can honestly say the whispers hurt just as bad.

I have dealt with discrimination most of my life, I started to suffer with depression in Jr. High and it affected me pretty bad in High School. My mood went up and down like a roller coaster and I am sure it didn't help I was in a very unhealthy relationship my Jr. and Senior year of high school, both emotionally and physically abusive. My emotions were out of control. After graduation I started my degree for medical assisting (my dream was to work in the medical field I was already working as a CNA). At 18 I was diagnosed with Bipolar disorder, I was devastated, but relieved at the same time. Finally after being on what seemed like every anti-depressant that was available at the time and it was only making me worse I finally had a diagnoses. However at this time Bipolar was still extremely stigmatized, hell it still is! People think everyone with Bipolar are going to go postal on everyone at any minute. In reality people who suffer from Bipolar, Major Depression, and other mental illnesses are a very low risk to others. They are more likely to harm themselves then to harm another person. Now there are people such as Narcissists who have no feelings or remorse towards others. This is a personality disorder where the person believes the world revolves around them. They lack empathy, are manipulative and demanding. People often confuse the mental illnesses because there is absolutely no awareness. So naturally I kept my mental illness to myself. It was hard for my parents to come to terms with. In fact until my mother moved to the Pacific Northwest and started working for a non-profit mental health organization she didn't recognize I had Bipolar. Don't get me wrong my parents have been wonderful, they have been there, supportive and have loved us unconditionally but mental health wasn't understood or talked about. But she came around, I believe everything happens for a reason and I believe she started working at the non-profit for a reason. It would prepare her for some of the biggest challenges that were coming in our near future. 

My life before December of 2012 had some difficult times which I will share here, it also had some wonderful times. Had I known that in a matter of 30 seconds on the night of December 19th 2012 that my entire life would never be the same, that I would be a completely different person, I would have never believed it. After fighting for so long, on March 10th 2016, three years 2 months and 19 days later close to 6pm my life changed again with a few sentences from a jury. Now I can honestly tell you that any piece of me that was left inside of the person I was prior to my accident died that day in the courtroom. A lot of this may not make sense right now, that's ok, as I continue on with my story it will make sense. 

I have decided to come forward with my story because it has changed me, it has robbed me of the person I once was. For a while I was not able to come forward with everything, but no longer, I am here to tell every single piece. I refuse to be silenced any longer, my story is my journey. These are the choices I had to make, the paths I had to choose and the Journey I am still on, you may not agree, but it's not your place. Never judge a situation you are not in. Please BE WARNED that there may be triggers for some people in my posts, I apologize in advance that is why I am warning you ahead of time. I also understand this may be hard for  people, especially family and friends to read, please also understand this is hard for me to write.  Please feel free to subscribe, either be email or feed. I would greatly appreciate your help in checking out The Butterfly Project (click the link at the bottom of this blog), These are Bracelets that help tell my story, they also help raise awareness and show support from others for the illnesses I suffer from. Money from the bracelets goes to research, and also will help me out with my medical bills. Thank you and Welcome to my Journey.

Butterfly Kisses, 

Kates Marie