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!

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?

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!

If you don’t live it, you don’t fully understand!

Ahhh, it’s always such a joy to sit there and listen to medical professionals go on a preach what they think is best for you when they don’t know you or your history, limitations, or what your body and illness is like!

There isn’t one thing that works for all of those that suffer with a chronic illness like fibromyalgia. There are many different medications out there to “try” and treat it, emphasis on “try”.  Some of these medications do help some people, but they don’t help everyone. I, for example have tried so many of them with no relief, not even a little, or they had too many bad side effects. 

Now I have a whole list of things that happen to me with this illness, but I’m not totally convinced it is just from one illness. Getting doctors to actually listen and do something is beyond difficult. They all have a few certain things they will do, and won’t do anything else. They are all set in their ways, and don’t try telling them to do something different. Yes, I know that I am not a doctor, but I do know my body best. They don’t fully know what this crap feels like, or what it does to our bodies outside of what we tell them.

One of the set in ways of the doctors is exercise. Now I’m on board that everyone needs some sort of exercise, we need to move, but that’s not always possible for those with a chronic illness. Me, for example am one that exercise makes things so much worse, and I’m not talking about being tired or a little sore because you are using muscles that haven’t been used. I am talking about literally needing to be carried around, and not being able to move because of the pain. Laying in bed for two days because you are tried to exercise for 30 minutes. I am in no way a lazy person and I don’t want to lay or sit around all day, and most days I don’t. I’m not up running or walking a marathon, but I’m moving the best that I can or working at my desk. 

Now my experiences may not be the same as a lot of peoples experiences. I can not walk or stand for long, long being 10-15 minutes, before my legs get very weak and I get lightheaded and feel like I will pass out. On top off that my ankle, which is permanently swollen, becomes so painful and spreads up to my knee. So walking, running, standing isn’t always a good option for me. 

What are the suggestions or recommendations from the medical professionals? Exercise! The same old preaching. Inactivity is your enemy, you need to exercise even if it just walking on the treadmill 10 minutes a day. The problem with that is the treadmill is very different than plain walking, I walk like a limping penguin. Treadmills force you to walk and in a certain pace and style of walking, where plain normal walking you can pick your pace and style to walk.

They don’t accept that as a reason not to do it, they look at you as if you are making excuses not to do this. With the chronically ill these aren’t excuses, they are limitations in our lives. 

Here is an example of a conversation I had with a medical professional:

MP: inactivity is your enemy, you need to exercise. I want you to try to walk on the treadmill at least 5-10 minutes a day.

Me: That’s nice and for a lot of people that would be easy, but for me and a lot of others, that’s not possible as exercise makes are condition so much worse.

MP: you have to do something, you can’t be inactive and sit all day.

ME: I don’t sit all day, I walk around the house when I can, and work at my desk when I can. I’m not lazy, I do have days where I can’t do anything, but I do move around.

MP: well do you ever go to the store? Get out anywhere?

ME: Yes

MP: Then you have to walk, how long does this shopping trip last?

ME: It varies. Sometimes 30 minutes, sometimes a little more.

MP: So then you can walk! You shouldn’t have any issues.

ME: Yes, I can walk, but then again you are assuming that these trips to the store are easy. Sometimes just walking from the car to the store and my legs are done. I have to be holding on to the cart at all times in order to walk. Sometimes I’m leaning on the cart and resting. Sometimes I have to sit for a bit. And practically every time I am almost falling down, so weak and nauseous, and crying because my legs can’t handle the shopping trip. But yes I make it through because I have no choice but to do it. 

MP: uhhh.

They don’t like it when I prove that their methods are always the best. Most think that with a 2-5 minutes rest that you will be able to go for hours again! Sadly that is not how it works, especially for me! Resting makes it possible to keep going, but the amount of time you go keeps getting shorter and the more you push yourself the worse it gets! Sooner than later my body will refuse to go anymore and you don’t want to encounter that away from home! Now a car ride around does help you rest but not all the time, because you aren’t fully able to relax as it not extremely comfortable in the car! Once my body has enough and it gets weak enough it will literally shut down as in I will not be able to move my legs as if they are paralyzed, it happens way too often! That’s all a different story in another post!

You see with chronically ill people, we need to plan out everything. For example if I were to go and walk on the treadmill, I have to take in account for the flight down and back up the stairs, plus the time I spend walking. Now the flight up and down the stairs are enough torment for my legs that I won’t last hardly any time on the treadmill. We have to take into account where we are going. How long it takes to get there. The time we spend walking and standing. Add in the energy it takes to talk, lift things if needed, ect. We have a limited amount of energy for the day, so everything has to be calculated out precisely. There is always going to be someone who thinks that they know what is best for you and what you can or can not do! Sadly a lot of these people are chronically ill, I have lost count of how many times I have seen people yelling at others with the same illness that if they can do it, then you can do it! I am in no way saying that these medical professionals don’t know anything about the illnesses, they for sure study about it. What I am saying is that they really need to adjust their way thinking to match the patient! Everybody is different and not certain thing works for every person!

I’ve been told before that I am not doing things because of what I think or am afraid will happen.  Which is so far from true. I have learned a lot about my body & health challenges and know what my body can handle. It took me a very long time to accept all this and learn to pace myself and such! I have learn as we all have what our bodies can and can not do with these challenges. We all know our bodies the best as we are living with this every day!

So many people claim to know somebody that has this horrid illness and to know a lot about it and for sure some people do as there are millions of people out there suffering! Sadly some only claim to know and they don’t really care to learn anything or try to understand. I do understand that some chronic illnesses are very hard to understand, heck I don’t fully understand it all and I am living it!

What people don’t seem to understand is that even though we aren’t physically working or doing something, it’s still hard on our bodies! Social engagements, even if it only requires sitting on a chair or couch, it is a lot of work! The ride there, or if they come to our house and the time sitting and talking and focusing on everyone! It is a lot of tiring work to sit there and socialize, I’m not even sure if I could explain right how much of a toll it takes on our bodies! It physically drains our energy even if we are relaxed and comfortable!

I wish there was a better way to help everyone understand everything someone who is chronically ill goes through! It is even harder to explain when that illness is mostly invisible, so invisible that tests and such don’t show anything wrong, yet there is something very wrong!Maybe, just maybe we will someday figure out how to explain it all and even get some much need help and relief! Until then stay strong and pace yourself! Don’t let anyone make you feel bad for being chronically ill! You didn’t choose the chronic illness life, it chose you!

Happy place is still missing…

Back in November 2017 I lost my happy place! It was so peaceful there and I would instantly relax when I went there. This place was & wasn’t a real place! It was real as in it truly existed and I could see it when I looked out my window, and wasn’t real as a different version of it existed only in  my mind and when I was having a bad day, I could just teleport there and relax!

Sadly one day it went away! My first happy place (also mentioned in “My happy Place” blog from Nov 2,17) was a pond and I floated around in it dragging my hand over the water and it was just so peaceful. One day while I was floating around a huge shark flew out of the water and ate me! I couldn’t get back there. It is still a beautiful view and peaceful place in real life, but no longer in my escape world! 

I found a new place, this time by a lake. I would sit under the tree reading a book and enjoying the beautiful view. Sadly one day a bomb fell on me and bam happy place 2 was gone!

You probably think that this is just a repeat of the November 2 blog, but I assure you it is not. I found a new happy place, I was so happy and even though I have a huge fear of falling, this happy place was in a huge tree house high above everything. I could just sit there with my cats and watch the world. They didn’t know that I was up there and that was great! I’d just relax and watch all the people! Ahhh, it was fun while it lasted anyway, as I have lost that place as well, but this time I have no idea how! One day I tried to go there and I couldn’t find it, and I have no idea where it went! No note or forwarding address, just gone, it just simply vanished!

Once again I am searching for a new happy place and all I see is myself wandering around in the woods never being able to find my way out! Now I am not stressing that I can’t find a new happy place, but curious if it will ever come back! Have you seen it?  No, I’m not offering any finders rewards, just give it a note saying I miss it and send it back my way!

Hmmm, the more I think about it, it is rather peaceful walking around in these woods, maybe what I have been searching for all this time was the place that I am walking around in! It could very well be, but let’s keep that a secret between you and me as I don’t want to let the woods know and have something happen to this place!

I promise this wasn’t a trick to tell you that what you are looking for may be right in front of you this whole time, but hey if it turns out to be true, then that is wonderful!

I’m off to enjoy me walk, but don’t let the trees know!

Sometimes, I wish…

Sometimes I wish….

This is the area where I would normally write everything that goes along with I wish!

I wish I could….
I wish I could say….
I wish you’d listen…
I wish I would have said…
I wish I was heard….
I wish…..
I wish…..

I could go on and on , but let’s be a bit honest here it doesn’t matter much! It won’t change anything, ever. Nobody wants to hear it!

So instead I’ll just say I wish….

Why Susan?!?

It’s been a while since I wrote to y’all and with my 9 year chronic illness anniversary just passing (Feb 16, 2011) I want to introduce you to my friend Susan!

I have a friend named Susan and she isn’t like any normal friend because nobody can see her! No she is not my imaginary friend really, I can feel her presence more than I can see her. Actually I never actually see her, but I do know what she looks like.

Now before you write me off as some crazy loon who’s making things up, let me explain who Susan is and why she’s always hanging around.

Nine years ago I was injured at work and from that injury I was blessed and diagnosed with a chronic illness. I went downhill very fast after that injury as I was so used to being healthy and independent. I never asked for help and was always helping and doing things for others because that’s what made me happy! Feb 16, 2011 that all changed and I couldn’t handle it. I was sent to a pain program to try and help with all the excruciating pain that I was now forced to deal with everyday. Part of that program was talking to a psychiatrist and I honestly didn’t like that idea, but I had to do it. Turns out that she was very helpful and brought me back from the dark hole I was now living in.

One day she told me to imagine my pain. What did my pain look like? It only took a few seconds to imagine this and I then described it and drew it out on paper. What I saw was this little girl wearing a purple dress. Weird thing is she didn’t have any feet. No, she wasn’t a ghost, but she did just float around my body. As I described this girl I said that if I really listened I could hear her laughing. I didn’t like her laugh and I still don’t. She will just float around my body causing me pain and laughing about it. I don’t really like Susan, heck I don’t think anyone could like her.

As part of my treatment, my psychiatrist taught my some breathing techniques. What she would have me do is sit back, close my eyes, and focus only on my breathing. I would have to count to 3 as I breathe in and count to 3 as I breathe out, making my breathing even. The point to this was to be able to relax, and as I relaxed my body went more numb and I could just drift away from all the pain and trouble this horrid illness brought to me!

She next told me to imagine My pain leaving my body. The first thing that came to my mind was the ending of Beauty and the beast, where the beast turns back to a man. As I sat there, eyes closed and relaxed I pictured beams of light shining from my toes and fingers and Susan trying very hard not to leave me. But she eventually was gone, although it was only temporarily. Susan never stays gone, she always comes back and sadly I will never be able to get rid of her.

After all these years I have gotten used to Susan hanging around and that in itself is sad! I don’t wish a friend like Susan on anyone. Some days I can manage the pain and not notice too much that she is there. Although more days than not she is very noticeable and angry and causes way too much pain!

Even after 9 years I still have hope that my doctors and I will find a way to manage her more and make it so she’s not so angry and mean. I still hope for the day that I can say “Susan who?”

Have you ever pictured your pain and given it a form of some sort? Did you give you pain a name?

I do truly hope that you don’t have a monster friend like Susan! If you do, have you found a way to manage it, and keep it from acting up!