When words fail, music speaks!

Sometimes no matter how good you feel a song comes on and speaks to you! Songs say a lot! Sometimes you like songs that people may think have some meaning in your life, but they don’t, you just really like the song!  

There are so many times when the song speak more than you ever could! Whether it is something from the past or present, it doesn’t matter, it just speaks to you! I used to have a friend that we used to send songs to each other to let them know what we were thinking, it was a fun thing we did! At times your mood and thoughts dictate what music you listen to! 

I sometimes get lost watching videos on social media, it happens! I found Conor Maynard by seeing his music mashups with various people! I took that time to check out his music and really liked it!  

Felt like sharing with you a song of his that I really like!! 


Maybe you don’t like talking too much about yourself 
But you shoulda told me that you were thinking ’bout someone else 
You’re drunk at a party or maybe it’s just that your car broke down 
Your phone’s been off for a couple of months, so you’re calling me now 

I know you, you’re like this 
When shit don’t go your way, you needed me to fix it 
And like me, I did 
But I ran out of every reason 

Now suddenly, you’re asking for it back 
And could you tell me, where’d you get the nerve? 
Yeah, you could say you miss all that we had 
But I don’t really care how bad it hurts 
When you broke me first 
You broke me first 

Took awhile, was in denial when I first heard 
That you moved on quicker than I could’ve ever, you know that hurt 
Swear for a while I would stare at my phone just to see your name 
But now that it’s there, I don’t really know what to say 

I know you, you’re like this 
When shit don’t go your way, you needed me to fix it 
And like me, I did 
But I ran out of every reason 

Now suddenly, you’re asking for it back 
And could you tell me, where’d you get the nerve? 
Yeah, you could say you miss all that we had 
But I don’t really care how bad it hurts 
When you broke me first 
You broke me first 

You broke me first
You broke me first

Do you have certain songs you always listen to during different thoughts??

What is your favorite type of music??

Can’t be that bad…

One of my  favorite quotes from someone is always “it can’t really be that bad if you are still able to do this or that.”  I told them I didn’t know I had a choice.

Years in pain, tired and the many changes in me for no apparent reason … Hiding everything from everyone, pretending to be doing better than you are, just so I don’t have to hear them complain and put me down because of it all! You just do what you can so you don’t feel worse from the comments and suggestions from others!

Then the moment comes when they tell you what you have … You have mixed feelings: you finally know what you have, but how do you deal with it? The relief in finally having something to call these health challenges, but still not knowing how to help it. Sadly there is no real fix or cure, just goin through life trying numerous things to get a even the smallest amount of relief!

Lack of support and motivation, wanting to lie down, taking medication frequently; having a whole pharmacy on top of the nightstand.

Then, the daily responses, “Why did you get so fat?” “I have this great diet, if you just go out and exercised. If you just keep going and moving, it will be better for you! If you just have a positive mindset it will change everything and you will feel better!

This is all somewhat true in a way, as for some these things do help. Sadly for others no matter how much you try , they don’t help, and that is one the hardest parts of this all!

Silent and invisible diseases do exist …When you have an invisible disease it is difficult to argue from your perspective with ignorant people. They will never understand! Just best to save your energy for getting through the day and trying to find some relief!

Sick of always being told:

❌Did you go to the doctor?

❌ Have you tried this?

❌ Have you tried that?

❌You just need to exercise more!

❌ I don’t know what else we can do for you…

❌ I know someone who has that, and they do this, why can’t you?

Yes! I have and still do try everything !!!

Doctor’s say I just have to learn to deal with and there isn’t anything else they can do! I will never give up and I really want to make others know…

❌ A nap will not make it better! !

❌Exercise will not help me!

❌I am not lazy, this illness drains my energy and I never get good sleep!

❌I am not angry but sometimes it all gets to be too much!

❌I struggle daily with pain, mobility problems, fatigue and cognitive issues!

❌Just because I have the energy in this moment, doesn’t mean that I will always have it! It disappears instantly whenever it wants to!

Most frustratingly, people look at me and say, “It can’t be that bad; you look good “

“You must be better, because you’re smiling!”

Despite the fact that my body is experiencing excruciating pain everywhere, of course I look good, I always try to look good and it is an “invisible” disease. You can’t see it, but I for sure can feel it! You can’t fix it and you probably will never understand, but the truth is, I don’t fully understand it either!

Just have patience with me and all the others that suffer with these health challenges, we are simply doing the best that we can with everything!

Things I’ve learned from this illness!

Having a chronic illness is life changing! All you can think about it getting a diagnosis and relief!

Let me tell you that it does not get any easier after you get the diagnosis! For most it is just a name to call you health challenges! Sadly for some, like me, the meds for that diagnosed illness don’t help!

❌With a diagnosis  of fibromyalgia you get looked at like you are crazy! You get treated differently because most don’t believe that fibromyalgia is a real illness. You see to get diagnosed with fibro you have to rule everything else out. There are some things doctors look for based off the similarities in the people effected by this illness. Nobody truly understands it and that understanding may never happen!

You are definitely not crazy and fibromyalgia is 100% real and as time goes on more & more medical professionals are seeing the truth of it every day!

❌ There is a lot to learn from dealing with fibro. One thing is that you don’t truly know pain and fatigue until you deal with it on the fibro scale. Don’t get me wrong here, I am not diminishing any other kind of pain or fatigue, but it just simply off the charts with fibro and there isn’t ever one certain thing that makes it all better.

❌ Understanding, you definitely learn understanding more of what some people go through. This illness is mostly invisible and therefore people tend to think you are faking it all. With dealing with all this, you get  a better understanding of looking fine and feeling like you were hit by a train and dragged 100 miles! It really is true that you don’t know anything until you have to deal with it yourself.

❌ Not one treatment works for everyone! There are many different things that can help improve your life with fibro, but sadly not one treatment will help everyone who suffers with this illness! Unfortunately for some the medications designed to help fibro just don’t work well! More and more research is being done and I do believe that there will be more definitive help for this illness coming!

❌ Just because we suffer from the same illness doesn’t mean we understand or are compassionate towards each other! One of the first thing I did when I was diagnosed with fibro was to jump on Facebook and find a support group, because I didn’t want to go sit with actually people and I wanted access to them all the time and not just on meeting days! I have learned being in these groups there is a lot of advice out there and a lot of help figuring this all out! There also is a lot of hate. Some people get angry when they see that other people can’t do things they can do! They say “if I can do you, why can’t you? , or “You’re stupid and just being lazy by not working when I am able to!” It can get bad in those groups, actually so bad that I left all but 2, because well I don’t need a bunch of groups and hate, just 1-2 groups with really good people!

❌ Pace yourself! I have learned to pace myself, though I still have trouble with it sometimes. I will sit down each week and see what I have coming up and plan out my time, now I know that it can be messed up at any moment depending on how I feel, but then something not so important gets pushed back! We need to go slower at our tasks than normal and take more breaks than usual! Like washing windows or walls, it’s too much to do in one day, so do one room a day as that is a big task, then you do little stuff if need!

❌ Lists, lists and more lists! I have lists and notes everywhere! I actually type out daily lists of everything to do including normal tasks like brush teeth and eat and drink water, sadly sometimes I will forget to eat! I have laminated lists and blank paper to write down things I want/need to do! Laminating it just saves paper and you can write and erase it so many times! If you can’t laminate something you can write on  glass or picture frames with dry erase markers, it’s so helpful! I do have note apps on my phone & tablet for when I am not near my paper or lists! They are so helpful! I also set reminders and timers with Alexa so I don’t completely lose track of time!

❌  Compassion & understanding! One of the biggest things that I have learned is compassion & understanding! It is so very true when people say you won’t understand until you go through it or deal with it! I knew that there were people suffering out there, but I didn’t understand it fully until this all started! Some will get upset and say “you look fine, why are you parking in a handicap space!” What they don’t understand is that not every disability or illness is visible! I don’t have a handicap sticker myself, even though some days I really need one! Once you experience everything an illness like this throws at you and all the hate from those who don’t understand, you finally get what it is all like and you can fully see what is all going on around you! Not that you weren’t seeing it before, but it’s a little bit more clearer now!

There are a ton of more things that I have learned throughout my journey with these health challenges, but I can’t remember any more at this time!

What are some things that you have learned dealing with all this torture?

I’m sorry for your pain

My dear friend,

I am so sorry for your pain.

Don’t worry; no one else sees it, I promise. To the rest of the world, you’re fine. But when you’ve been there, you can’t miss it.

I see it in your eyes. That awful, combustible mixture of heart-wrenching pain and abject fear. God, I remember the fear.

I see it in the weight of that invisible cloak that you wear. I remember the coarseness of its fabric on my skin. Like raw wool in the middle of the desert. You see, it was mine for a time.

I never would have wanted to pass it on to you, my love. I remember so well suffocating under the weight of it, struggling for breath, fighting to throw it off while wrapping myself in its awful warmth, clutching its worn edges for dear life.

I know that the fear feels like it’s permanent, fixed. But one day down the line you will wake up and find that you’ve left it next to the bed. Eventually, you’ll hang it in the closet. You’ll visit it now and then. You’ll try it on for size. You’ll run your fingers over the fabric and remember when you lived in it, when it was constant, when you couldn’t take it off and leave it behind. But soon days will go by before you wear it again, then weeks, then months.

I know you are staring down what looks to be an impossibly steep learning curve. I know it looks like an immovable mountain. It is not. I know you don’t believe me, but step by step you will climb until suddenly, without warning, you will look down. You will see how far you’ve come. You’ll breathe. I promise. You might even be able to take in the view.

You will doubt yourself. You won’t trust your instincts right away. You will be afraid that you don’t have the capacity to be what you want to be. Worse, you’ll think  that you don’t even know what you need be. You do. I promise. You will.

That’s how it happens. When you need capacity you find it. Your heart expands. It just does. It’s elastic. I promise.

You are so much stronger than you think you are. Trust me. I know you. Hell, I am you.

You will find people in your life who get it and some that don’t. You’ll find some that want to get it and some that never will. You’ll find a closeness with people you never thought you had anything in common with. You’ll find comfort and relief with friends who speak your new language. You’ll find your village.

You’ll change. One day you’ll notice a shift. You’ll realize that certain words have dropped out of your lexicon. The ones you hadn’t ever thought could be hurtful.  Gimp, lazy, malingerer, stupid.   Never again. You won’t laugh at vulnerability. You’ll see the world through a lens of sensitivity. The people around you will notice. You’ll change them too.

You will learn to ask for help. You’ll have to. It won’t be easy. You’ll forget sometimes. Life will remind you.

You will read more than you can process. You’ll buy books that you can’t handle reading. You’ll feel guilty that they’re sitting by the side of the bed unopened. Take small bites. The information isn’t going anywhere. Let your heart heal. It will. Breathe. You can.

You will blame yourself. You’ll think you missed signs you should have seen. You’ll be convinced that you should have known. That you should have somehow gotten help earlier. You couldn’t have known. Don’t let yourself live there for long.

You will dig deep and find reserves of energy you never would have believed you had. You will run on adrenaline and crash into dreamless sleep. But you will come through it. I swear, you will. You will find a rhythm.

You will neglect yourself. You will suddenly realize that you haven’t stopped moving. You’ve taken care of everyone but you. You will forget how important it is to take care of yourself. Listen to me. If you hear nothing else, hear this. You MUST take care of yourself. You are no use to anyone unless you take care of yourself first. I mean that holistically, my friend. Nourished, rested, soul-fed. Your children and others deserve that example.

A friend will force you outside. You will look at the sky. Follow the clouds upward. Try to find where they end. You’ll need that. You’ll need the air. You’ll need to remember how small we all really are.

You will question your faith. Or find it. Maybe both.

You will never, ever take progress for granted. Every milestone met, no matter what the timing, will be cause for celebration. Every baby step will be a quantum leap. You will find the people who understand that. You will revel in their support and love and shared excitement.

You will encounter people who care for you in ways that restore your faith in humanity. You will cherish the friends and people and doctors who see past your challenges and who truly understand your strengths. They will feel like family.

You will examine and re-examine every one of your own insecurities. You will recognize some of other’s challenges as your own. You will get to know yourself. You will look to the tools you have used to mitigate your own challenges. You will share them. You will be better for it.

You will come to understand that there are gifts in all of this. Tolerance, compassion, understanding. Precious, life altering gifts.

If you are a parent, you will worry about your children. You will feel like you’re not giving them enough time. You will find the time. Yes, you will. No, really. You will. You will discover that the time that means something to them is not big. It’s not a trip to the circus. It doesn’t involve planning. It’s free. You will forget the dog and pony shows. Instead, you will find fifteen minutes before bed. You will close the door. You will sit on the floor. You’ll play Barbies with your daughter or Legos with your son. You’ll talk. You’ll listen. You’ll listen some more. You’ll start to believe they’ll be OK. And they will. You will be a better parent for all of it.

You will find the tools that you need. You will take bits and pieces of different theories and practices. You’ll talk to peers and doctors and therapists. You’ll take something from each of them. You’ll even find value in those you don’t agree with at all. Sometimes the most. From the scraps that you gather, you will start to build your quilt. A little of this, a little of that, a lot of love.

You will speak hesitantly at first, but you’ll find your voice. You will come to see that no one knows you better than you do. You will respectfully listen to the experts in each field. You will value their experience and their knowledge. But you will ultimately remember that while they are the experts in science, you are the expert in you.

You will think you can’t handle it. You will be wrong.

This is not an easy road, but its “rewards” at times are tremendous. The remissions, however small, are the very sweetest of life’s nectar. You will drink them in and taste and smell and feel every last drop of them.

You will be OK.

And I will be here for you. Every step of the way.

Life Of Pain!

This life is a hard life! Not designed for the weak!

Did I always live a life of pain?? Oh no, I used to enjoy life without pain! I mean I still enjoy life, but it’s just a little harder to do these days!

What’s that? Oh, you want to know how it all started? Hmmm…

Oh ok! I’ll tell you! You don’t have to twist my arm! No, really don’t do it! I’ll cry!

My new alternate life started in 2011! Wow, can’t believe I’ve been like this for 6 years now!

Here we go……
One cold dark February morning, Sunny went to work. She thought it was just another day like every other day! Just going about her job, laughing and having fun! (Well as much fun that you can have at work!) Sunny didn’t really have a hard job. She made dry erase products! Who doesn’t love those? Sunny does! She put these dry erase sheets on magnet! I know, fun right? Just too give you a picture, Sunny is a tall woman! 5-11 actually. She had to lift rolls of 24inch wide rolls of 100ft magnet up to a table just above waist high! Did anyone help her? No, not that many helpful people there! Would you help her? I would if I could!

Sunny lifts and lifts these rolls to complete the order she had to do. Just working and working. BAM! OW! What was that? asked Sunny. Suddenly her back hurt! She couldn’t figure it out, she does this job all the time! For 7 years actually. Sunny relaxes and tells her friend that her back is hurting, but she will continue working. Oy, sunny thinks, this back pain is getting a little worse. Maybe I should tell my supervisor. She did, and finished the day.

Next day, Sunny manages to get to work, and tries to start her job. The pain in her back has other plans. Suddenly she can’t move. Sunny starts to panic, what is happening to me? She wonders. Immediately she goes to her supervisor, and he sends her to the doctor. Sunny’s doctor orders X-rays! Unfortunately, they don’t show anything! But the pain is awful, cries Sunny! Her doctor(Dr. Bev) believes her, but doesn’t know what happened.  Next came the MRI. Surprisingly that didn’t show anything either. Bev orders blood work, a lot of blood work. Sunny is afraid of needles.

Did you know that when Sunny was younger, it would take 3 people to hold her down to take blood, and they had trouble even with 3. Sunny was a strong little girl. She does better now, but still doesn’t like them! But blood work is so much better than IV’s! OY! Those are awful!

Hey Sunny, Focus! What? Oh, yeah, sorry, mind wondering!

Sunny’s blood work came back, not showing anything helpful. Meanwhile she is out of work! Sunny didn’t go back to work for three months. In that time, she had a lot of tests done! Seen some specialists that didn’t believe her. One said she was just crazy and depressed! Of course I’m depressed! Yelled Sunny! You try being in this much pain, with no answers!

Eventually Sunny did return to work, but only part time. The other part of the day was spent resting, or at therapy! Let me tell you, therapy is not fun! The only fun part is when I got to lay there with a tens unit (sticky pads hooked to wires and electronically message you) on and warm heating blanket! Best part! Well 7 months later, work insurance said I was done! That’s cool. But I don’t feel any better!

One day Sunny went to work and they had hired a new HR lady ! (The villain! 🤢) Villain asked Sunny into the office, and to meet her. The first words out of Villain’s mouth were “You either come back to work full time, or you’re fired!” Say what?? If Sunny was smart she would have left. See where I’m going with this? You guessed it, Sunny wasn’t smart. She stayed and suffered through a hellish eight hour work day. Day after day.

Meanwhile, Dr Bev diagnosed Sunny with Fibromyalgia and sent Her to Mary Free Bed. More therapy, job therapy, to learn how to work better, a new doctor, and therapist. Therapy was brutal. Sunny’s leg would go numb, and they made her walk fast on the treadmill anyway. So much hard work, with little strength. Sunny’s new doctor kept giving her sleeping pills. She didn’t want those, even though she needed sleep. They gave her nightmares.

Sunny’s therapist June was awesome. Sunny got to sit in a dark room and talk everything over. You see, Sunny didn’t have anyone to talk to. Her friends were abandoning her, because she couldn’t do everything for them, like they were used to. They didn’t understand what was happening to Sunny. Well, they didn’t try to understand either. June helped Sunny work through the pain. June taught Sunny how to focus on her breathing and hypnotize herself. That was the part of the visits Sunny loved the most. After a while June stated that the other doctors and nurses didn’t think She was doing her stretches. Even though Sunny was doing her stretches and everything she was told, things weren’t improving.

The only thing that did improve was Sunny’s attitude. June helped Sunny come to terms with what was going on, and learn how to deal with it better. Soon Sunny’s time at MFB ended. Still suffering everyday, Sunny soon learned what she could and couldn’t do, and how to somewhat manage her days. Sunny was able to get FMLA (which was supposed to protect her job while sick!). Work got harder and harder. Many days she had to stay home because she couldn’t move very well. Life was just too painful.

Fast forward a tad to February 2014. Sunny was going about her day working, doing the best she can. Villain came and asked to talk to her. Ok, this is a little weird, thought Sunny. BAM!! Villain fired Sunny! No reason, no nothing. Yes, I wanted to see you, because this is your last day, you’re done Sunny. Please leave. Said Villain. I’m sorry what? Asked Sunny. Why? Is this a joke? Nope, said Villain, clean out your locker and leave before I call the police! Long story short, Villain had worked there for about two years and had been trying to fire Sunny from day one. Finally she got one of the 3 owners to agree. Villain also waited until the one owner that could have stopped it, wasn’t there.

How upsetting, this situation made Sunny so upset and stressed, she spiraled into a big flare! That is full of pain and sickness! Luckily her x-bosses didn’t fight unemployment, and Sunny got a few months rest while looking for a job. She wasn’t bored at all. She loved the break from going to work in a very hateful place. She eventually got a retail job, and stayed there for a year. Sunny’s body didn’t like that job, weird hours that were all over the place, and the work was too hard.

August 2015, Sunny got a job very close to home. Which was amazing since she couldn’t see well driving in the dark. This job was so easy and had light duty work. Just the right kind of job. Sunny thought she could do that for a long time. Her illness had different plans.

Early 2016 Sunny began to get weaker and weaker! Her legs would go paralyzed. She couldn’t move them. Her pain levels shot to an eight! Ouch, that hurts! Cried Sunny. Literally cried, and cried! These episodes came and went! Bev sent sunny to a neurologist (Tay). Tay asked sunny a bunch of questions. Sunny tried to tell him everything. He wasn’t really listening. Tay told Sunny to try some sleeping pills. Wait, what!? I told you I may not be getting enough sleep, but that is not the problem. I have already tried those! Tay didn’t care, he just said try these, and I’ll see you again soon.

Sunny had to wait six months to see Dr Tay again. Mind you this is only her second visit. Tay told Sunny, “Since those didn’t work, let’s try therapy”. Oh no, demanded Sunny, I have been to therapy four different times, I have all the exercise papers, and still do them. It does not help, not wasting my time or money, please don’t make me do that! Ok, said Tay, then, well I guess I just don’t know why this is happening , call me if it gets worse. Umm, says Sunny, I wouldn’t come to you if it wasn’t bad!

Sunny was dismissed. She thought she just had to learn to live with it. She couldn’t figure out why this was happening or how to help it not happen.

August 2016 Sunny’s friend seen her post on Facebook and asked her to try an all natural product called Plexus. Skeptical Sunny tired it and was amazed! Wow, I can’t believe how much better I feel, cried Sunny. I have to continue. So Sunny jumped on the Plexus train. Her life got a little better. Her digestive issues were clearing up, her pain levels decreased. All in all everything was going well. Expect her heartburn. December 2016, Sunny had surgery to fix her hiatal hernia. Besides not being able to eat much. Sunny was feeling better! Then late January something happened! The pain in Sunny’s back kept getting worse. One day she woke up and couldn’t move her legs again.

Why does this keep happening? Cried Sunny, I was doing so good! I have not had any major problems in a while. Sunny only made it to work one day that week. When Sunny called in on Friday, she was told she had to figure something out, that she couldn’t keep calling in! Sunny cried. She thought they were understanding. Sunny did understand that they need people to show up and do the work. But they were working with her and her issues! Sunny was stressing about losing her job. Stress is not good for Sunny’s condition!

Frantically thinking of what she needs to do and setting up doctor appointments to go over options! Thinking that she may be able to go to work on Monday. Knowing that she is still in a lot of pain, and walking ok wouldn’t last long. But Sunny fears she may lose another job, due to this illness!

What will happen to Sunny?     Will she lose her job?   Will Dr. Bev figure out how to help her more?   Time will tell!

Sunny’s story isn’t done yet! Stay tuned…To be continued…