19 things on Fibromyalgia

  1. They don’t really understand fibromyalgia. This illness varies so much and treatment plans are different for everyone, so there’s just so much they don’t know yet!

2. You will more than likely lose friends because you can’t go to everywhere and do everything that you used to!

3. They don’t fully understand how to treat fibromyalgia, they think that what will work for one person will truly work for everyone!

4. There will be people who don’t believe you about your pain, they may think that you are making it all up, because you don’t look sick!

5. They will more than likely say your other issues are a symptom of fibromyalgia!

6. That this illness effects every part of you and your life, not just your body! It will effect you work, social, love life and your friendships!

7. They won’t tell you that the medications won’t always work! That you will more than likely gain a lot of weight because of those medications!

8. They don’t tell you about the sensory overload, the sensitivity to light, sounds, smells!

 9. It’s hard for people to understand how much energy and effort it takes to do the most simple tasks! That getting out of bed and showering and getting dressed can completely wipe you out!

10. They don’t tell you all the other connected issues like depression, anxiety, ibs and more!

11. That you will never get good quality sleep, even with the sleeping pills. Even if you stick to a sleep schedule of going to bed at the same time every night!

12. They won’t tell you that sometimes natural supplements and remedies are the better than the medications the doctor gives you! They for sure won’t cure you, but they can help relieve some of the symptoms!

13. How what you can do one day, you might not be able to do the next day!

14. They don’t realize how hard it is to have this illness and how disabling it can be, because you don’t look sick!

15. How the depression can be awful. Grieving the life you used to have, and the things you aren’t able to do anymore.

16. They don’t tell you the range of emotions you will face, the grief, the anger, the guilt of feeling like you let everyone down, and fear of not knowing what your future will be like!

17. They don’t tell you that going out and socializing will use up so much energy, even just the car ride there and back is very hard on you!

18. The you will mix up and forget words and they don’t know it because of fibromyalgia!

19. That it takes days to recover from holidays, the cooking, cleaning, socializing, ect!

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.

Letter to my body

Dear body,

 I’ve known you my whole life and we have been through so much together!

I have always tried to be kind to you, I thought I was doing a good job!

I’m so sorry if I did something to hurt you!

I am so sorry if I neglected you sometimes!

I am sorry that I made you work so hard, but I just couldn’t just sit around!

I guess you might be able to tell that I am writing to you about some of our painful adventures together! I mean, come on they are our most memorable moments together, probably because the pain won’t ever let us forget! How rude!

You’ve given me a few hiccups growing up, but nothing too bad! I thought we were getting along well! The first 20 years of our lives we had so much fun doing so many jobs working through a temp agency, sometimes a new job every week, oh that was exciting!

The first 20 years together were good, but then it started to slowly go downhill! We already were suffering with migraines, not fun at all! Then I found out we had asthma, not too bad, but still a bit of a struggle as we worked with a lot of sprays and dust that you didn’t like! Oh the racing heart and pain that sent me to the hospital so many times with out any answers wasn’t any fun, but we made it through and now with the help of our meds, our heart doesn’t race as often anymore!

We got a break for a few years where nothing health wise happened and we were enjoying friends and family! Then the major fun started, and by fun I mean painful craziness!

I am sorry that I almost broke our tailbone when we fell down the stairs and boy does it flare up in pain still, ouch!

 Among other painful adventures I am so very sorry that I forced you to stay at a job that was slowly killing us, I mean for reals! There was so much hate there that you threw a fit every day driving there, but I was too scared to start all over at a new place, but we did it anyway after they hurt us and with that came all these new health issues! Then they kicked us out because they didn’t want to deal with it anymore!

But we were free from that hell and finally found a job that we loved and they loved us so much! I thought you were finally happy, but we slipped and fell so hard on the ice and more challenges continued to develop!

It finally got to be too much to handle and you forced me to stop working in 2017, I didn’t like that and I still wish, even with all the new crap going on in the world, that I could go to work! I’m also sorry that I didn’t stand up for us and demand better care with our doctors! I’m sorry that I didn’t watch our medical files closer to see all the lies they wrote about us, making it so we can’t get disability!

I hope that you can forgive me for falling so many times and causing so much pain! Believe me that our time isn’t over yet and I promise I’m going to do the best that can to get you help and relief from all this bullshirt we have to deal with now!

Have you ever written a letter to yourself or your body? Maybe a letter to your future or past self? I think It is a fun and thing to do, although this is the first letter I have ever written to myself! I’m not sure why I haven’t because I do like talking to myself! That’s not weird is it?  Ahhh, it doesn’t matter, weird is more fun!

How does creativity help you?

Creativity helps keep you busy and distract you from health & life challenges!

I have always been creative! I love designing and creating things! Even when I was working I would on down time if I had access to things, I would create storage and helpful things out of cardboard to keep my work area clean!

I get bored very easily if I am not doing things that keep me thinking and busy! I hated having a job where I had to do the same thing over and over every day! The most fun I have had was working at a plastic injecting molding factory, it was different every night, so much fun! Being creative and thinking creatively is a lot of fun and helpful to forget other things, like health issues and not being able to work!

Creativity and organizing are my things I love to do!I have always loved crafting and have had a few things like a cricut and paper crafts for years but never used them to their full potential! I would always plan a craft for when my nieces & nephews came over, it was fun finding new things to make and getting everything all set up! When my health challenges made it so I couldn’t work anymore, I started to craft more! My creativity has expanded so much, I love finding inspiration and creating things. I love designing and creating everything from jewelry, storage items to cards and other paper items! I get lost in creating things that my mind isn’t so focused on what my body won’t allow me to do and all the pain!

I enjoy listening to music & audiobooks while letting my creativity fly! I always need something to do or I will get too bored and end of sleeping a lot, but then I can’t sleep much anyway! If I am not actually making or designing things, then I am finding new ways to organize everything and make it all flow better! Some days I can’t do much because of the pain and such so then I am searching for more inspiration, designing cards, calendars and anything really! I has a slight obsession with binders and am always creating them for anything as you know everything has to be organized and neat in my world!

Audiobooks are a great distraction as well as while listening you can imagine it all in your mind, kind of like watching it like a movie! But really this is about creativity! Creativity also helps make money when you share your creations with the world through an online shop!

Ahhh creativity, such a helpful & fun skill to have! The only thing wrong with getting lost in all the creative fun is forgetting to eat food to have strength & energy to continue!

Are you creative? Does it help you in anyway?

2020 reflections

If 2020 was a person, it would be Janice from Friends!

So far, 2020 is like looking both ways before you cross the street then getting hit by an airplane!

Do to quarantine, I’ll only be telling inside jokes!

‘I’m not working out with a mask on’ is my new favorite excuse for not working out!

Coronavirus has turned us all into dogs: We roam the house looking for food, we’re told ‘no’ if we get too close to strangers, and we get really excited about car rides and walks!

The world has been turned upside down! Older people are sneaking out of the house, while their kids yell at them to stay inside!
 

First time in history we can save the human race by laying in front of the TV and doing nothing. Let’s not screw this up!

2019: Stay away from negative people! 2020: Stay away from positive people!

This virus has done what no woman has been able to do and this cancel sports, shut down bars and keep men at home!

I never thought that the comment “I wouldn’t touch them with a 6 foot pole” would become a national policy, but here we are!

If they just called it the ‘stay at home challenge’ and posted it on social media, things would be completely back to normal by now!

I hope the weather is good for my trip to the back yard, I’m getting sick of my living room!

So does all the work from home jobs only have a short 30 minute lunch or is it just my job? By the time I make it to the kitchen it’s time to clock back in from lunch!

Never in a million years could I ever imagine that I would go up to a bank teller wearing a mask & ask for money!

I need to practice social distancing from the pantry!

Does anyone know if we can take showers yet or should we just keep washing our hands?

Somewhere, someone is showering with a mask on!

I survived the great toilet paper scare of 2020!

2020 is a unique Leap Year. It has 29 days in February, 300 days in March, and five years in April!

COVID spelled backward is DIVOC. What DIVOC is up with 2020?

Day 7 of social distancing: Struck up a conversation with a spider today. Seems nice. He’s a web designer!

I’m not saying I’m going to suck at homeschooling my kids but my daughter just asked, ‘Mom, what’s a synonym?’ And I replied, ‘It’s a spice’!

Can we uninstall 2020 and install it again? This version has a virus!

Look around, look around at how lucky we are to be alive right now!

I feel like a Kindergartener who keeps losing recess time because a couple of kids can’t follow simple instructions!

My husband and I switched sides of the bed this weekend and that’s what we call ‘vacation’ now!

The year 2020…Brought to you by the letters W, T and F!

Sometimes you are the monster!

I begin tucking him into bed and he tells me, “Mommy, check for monsters under my bead.” I look under his bed for his amusement and see him, another him, under the bed, staring back at me quivering and whispering, “Mommy, there’s somebody on my bed.”

Monsters are everywhere and some are really bad and there are some that are very good. There are  even some monsters that are bad, but for a very good reason! How can a monster be bad for a gold reason, you ask. Well I think that there are monsters in all of us and if something awful keeps happening to us and we don’t do anything about and just push it all down, we will blow up some day and do something awful. In a way it may be good if it means our life is saved from the evil that has attacked us for so long! Sadly there are times when we blow up and it doesn’t do much good. We just scream and yell and let it all out, but the real monsters don’t actually learn anything!

These monsters act like they are being attacked and hurt. Often they get angrier and come back even worse and other times they just act hurt, and no doubt they are, but they have been hurting you for so much longer! They make it seem like you are the monster and you’ve been hurting them! These kind of monsters must be stopped!

The monsters inside of us are often screaming to get out! It’s up to you if it is good or bad! As you know, we are always our own worst enemy, we are always harder on ourselves than others! Sometimes that is more true because of how others treat us! When others put us down and such, if we hear these things enough on repeat, we start to believe that it is all true, no matter how wrong it is! We may eventually forgive those that do this, but we will never forget as it is drilled into our brains what a failure we are! These situations and words tend to create a monster in us! This monster is always there to remind us how we are not good for anything, and sometimes no matter how much work we or others do to reverse these words, it doesn’t always work as too much damage has been done!

Sadly since the damage can not be reversed it often creates monsters in those just doing everything they can do to love us! They don’t deserve the hatred that they receive, but we are so used to the hell, that it is very hard to let it go and see that these new people love us so much and would never hurt us! Sometimes we can never be with anyone else because of all this! These monsters can take over and destroy everything and everyone we love, and we just can’t control it! Sometimes these monsters win, it is up to us to do everything, within reason,  we can do to stop them!

Do you have a monster, or live with one? If so, I truly hope that you are able to tame and get control of them, or get free from them and can learn to overcome all the damage that they have done and find happiness once again!

I am too much!

I’m too much!

For reals!

I get overly excited about everything! I tend to get very emotional about even the simplest things also! My brain activity is like dumping the junk drawer onto a trampoline, bouncing like crazy!

I am very quiet and shy at first!

I also get carried away with joking and having fun once I get to know people!

I think fast!

I lose my filter sometimes!

I speak the truth, no matter what, even if you don’t want to hear it!

I love music!

I love audiobooks!

I don’t like to talk about myself!

On rare occasions, I tend to overshare on my health & life!

I’d rather listen than talk!

I love hearing everyone’s life stories!

I am always trying to make & keep everyone happy!

Other times, I am trying to hide in my closet, thinking the world is crashing down on me!

Give me music or audiobooks  to listen to or Disney + to watch and, I’ll be good in a day!

I apologize all the time, even when I shouldn’t! I also apologize for apologizing!

I love collecting small things!

Very small things!
 

And stuffed animals!

I love stuffed animals and all the accessories!

I love dollhouses and all that goes with them!


I love crafting!

I Love designing and creating things!

I love to help others!

I love to figure things out!

I love to provide the right answers and fix everything! This I feel is one of my stronger qualities, and also one of my biggest faults! Not everyone likes people to do this! Sometimes it is too much! Sometimes it causes more of a mess than good!

I cry about things I have no control over!

I cry about American patriotism!

I cry alone!
 

I cry in my sleep!

I’m too much!

I’m a handful!

When I’m chill, I’m way too chill!

But when I’m not …. Oh it gets fun!

Sometimes I feel I am too much!

I get quiet! I play dumb! I tuck myself in a corner and just watch!

I box up my excitement!

I just watch people!

I love to study people! I love to see how everyone ticks, how we all are different and why everyone does what they do!

I convinced myself I had to be less!

I had to be quiet!

I feel I can’t speak my mind!

I feel I am not allowed to feel how I feel!

 I overthink everything! Did I really say that? I should have said this! I should have done this? Why did I do that? What if? When? Why? How? What?

I am too much, but it is a lot of fun and I get carried away!

I dream big!

I give hard! I forgive hard! I work hard! I love hard! I laugh hard! I joke hard! I cry hard! I mess up hard! I fall hard, but I always get back up and keep going!

When I’m in, I am ALL in!

Once I have been pushed too far and I’m done, I am ALL done! I may still like you and/or love you, but I don’t have to deal with your crap & I’m just done! Its “whatever” now!

You want to know a secret?

It’s okay!

It’s all okay!

Whether you feel that you are “too much” like me or not, IT IS OKAY!

Never apologize for being you!

Never apologize for how you live!

Apologizing for any of it, is like apologizing for being real, for being alive! Never do that! I know easier said than done!
 

Be real!

Be you!

 
Be too much! Or not, if that’s what you prefer!

Go crazy, have fun!

Dream big!

Do everything you have always wanted to do!

JUST BE YOU AND NOTHING LESS!

I couldn’t do it!

I often get told “Wow, I don’t know how you do it, I wouldn’t be able to do it!”

My reply “I don’t have a choice, and you could do it”! It’s easy to say I couldn’t be able to handle that because you aren’t going through it, but when you are, you don’t have any other choice! 

I didn’t choose the chronic illness life, the chronic illness life chose me! Why this happens, I will never know, but it happens too much to a lot of people! When you are faced with this painful new life, it is extremely hard to deal with in the beginning, actually it is always hard, but sadly you get used to living with it and you adjust accordingly to get the most out of this life!

With the help of family , friends and doctors, you learn how to manage it and live with it! Sometimes it get really bad and you just can’t handle it well and that is going to happen a lot! No matter how used to this new painful life you get, it is always going to be hard! You can’t do everything that you used to be able to do! You now have to depend on more people, even for simple tasks and that is very hard to do!

You could be part of the lucky group of people and find a way to manage all the pain and fun that comes with these chronic illnesses, to where you can live a more active and better life. There will still be times where it will knock you down for a while, but that will eventually ease up and you can get back to the fun! If you are not blessed enough to be part of that group, I truly hope that you have a good support system, especially if you can’t work and they deny you disability! Depending on the illness, that is something that is hard to get!

Having a chronic illness is not only very painful and exhausting, it is also extremely frustrating because some of them don’t show up on any test that the doctors run. You are now stuck with having to figure out how to live with it and you also have to deal with all the people that don’t believe you or understand your illness, because you don’t look sick. Although you don’t owe them any explanations, it can be hurtful and frustrating that they don’t believe you and trying to prove it all, although you seriously don’t have to prove anything! You know what is going on with your body, just getting the right help can be difficult!

I often thought , why don’t people support causes until they have to deal with what illness the cause supports! Well, the answer is pretty simple, they don’t do it because they don’t fully understand until they or a family member has to go through it! Then they will research and learn more about it in efforts to fix it and support it! If only it were simpler than that!

It is very true that you will never understand it until you have to deal with it, no matter how much you research it, you still get more and better knowledge when you have to live it! I promise you that you can and will learn to deal with it! Well, mostly, as these illnesses always have a way of surprising you! You will find something that helps you to some degree or possibly more!

You are worth it!

You are worth it!

You deserve to appreciated for who you are and for all the amazing qualities that you have!

You are an incredible human being just the way you are!

You don’t need to act like someone you are not just to please anyone or to try and fit in!

You are unique: no one is you, and you will never be anyone else but you! Stay away from people who don’t get it!

I am happy that you exist!

Be a rainbow in someone else’s cloud!

Stay classy, sassy & a bit smart assy!

It’s about America…

To me it’s not about who is the president, it’s all about who is for America!

If the president is good with taking God out of our country and taking our constitutional rights away then they should not be president!

I AM PRO AMERICA!!

I am PRO GOD

I am PRO LIFE

I am PRO GUNS

I am PRO JOBS
I am PRO LAW ENFORCEMENT

I am PRO MILITARY

I am PRO AMERICA

I am against anyone who tries to take God out of America!

Anyone who tries to take our constitutional rights away!

Anyone who wants to let people come to the US illegally and work and get benefits that are only for US residents! If they want to come here to escape their life where they were, please do so legally and for the love of everything please stop trying to change the US to be more like what you were escaping from! Even if they are not trying to escape, just do it the right way and if you want the US to be like where you came from, do us a favor and go back there!

I am so disappointed in my fellow Americans and it is very sad to see that they are good with people trying to take God out of our country. It is sad that a lot of people can not see or choose to ignore what some people are trying to do to us! Do you really want the government to lock us down and dictate what we can & can not do for the rest of our lives? We need to focus on America! America has been very good at helping other countries and sending our troops everywhere, but it is time that we focus on us for a change! There is so much that is wrong with America and we need help!

President Trump has finally, which no one else has managed to do, made good with so many other countries, we are in a good relationship with them and we need to draw back and make us good again! More and more jobs and companies are coming back to the USA where they belong and we need to continue that and we need to get more goods made in the US and not depend on China or others for most of our goods!

We need to stop fighting each other over who we support and what we believe and come together and focus on healing and getting America back to being the best!

People are good with hating for no reason, but we need to start living for no reason!