Tag: chronic illness

New words needed….

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How are you??

Tired……

That’s always the answer! Tired! Not a good answer, because I’m so much more than tired, but it is the standard answer! Some people don’t really want to know, it’s just a thing you ask! Some people want to know, but they don’t want to know everything, just a simple answer.

It is a simple answer but it does not fully describe how I feel! There should be a better word to truly describe how I feel sometimes, but I can never think of one! I was at my checkup with my pcp and I used that word “tired” when she asked how I was really feeling when she said your depression score is higher than it has been, do we need to adjust your meds. I said I have been more tired that usually!

A few days later of course and I’m thinking that I hate the word tired. My brain wasn’t working correctly that day and all I could say was tired, it nobody will ever fully understand it all if I keep using that word! I should have said that I am emotionally, physically, and mentally drained! My body is weak and exhausted, my muscles are weak and sluggish, but when I get that drained, I can’t fully explain how I truly feel!

This is in no way a new feeling for me, just a flare up and it is never fun! It truly is awful to get up and need to rest after changing clothes and making a meal! It is awful how much energy you lose during these flares. Sadly I try to ignore it all because I won’t let myself actually take a day to rest!
I’ve been living with this crap for so many years and still have not gotten used to it or truly let myself take a break, not that I am pushing myself and doing a lot, but still.

It is just so much more than anything I can explain! I don’t think that I will ever fully understand any of this or why it is happening! Can’t get lost thinking of that though, that is a awful hole you don’t want to go down! Cover that hole up, do t want any part of it!

He worst part of all of this is that any test they run shows nothing! Nothing! And most doctors don’t truly believe me when I explain everything that happens, I just have to deal with it all and that exhausts me beyond belief!

So, yeah, a new word is needed to explain it all without explaining it all! That’s all I have, I’m drained!

P.S. Time spent with cats is never wasted!

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Be proud…

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I am proud of myself because I’ve survived the days I thought I couldn’t!

If all you did was survive today, be proud, that’s good!

It takes a lot of energy to survive!

It takes a lot of energy to get through a day with a chronic illness!

It takes a lot of energy to fight everyday, just remember that each day you are here, you are winning!

It’s okay to be tired!

It’s okay to be tired of living this life, just don’t give up on yourself M

You are going to make it through this!

STAY ALIVE!

YOU’VE GO THIS!

Be proud of yourself for surviving each day!

Shouldn’t be this way….

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Nobody should have to love like this!

Nobody should have to be in so much pain!

Nobody should have to live with this much anxiety!

Nobody should have to live with this much fear!

Nobody should have to live with this much sickness!

Nobody should have to live with this much depression!

Nobody should have to live with mush hate!

Nobody should have to live with this much dizziness!

Nobody and I mean NOBODY should have to love like this!

Where did all of this come from?

Why does breathing have to hurt so much?

Why does it feel like you’ve been hit by a train when waking up?

Why does someone who is able to do anything one day and then the next day a small injury takes it all away?!

Why does this happen?

Why can’t doctors figure out a way to help?

Why can’t people recognize how much you suffer and get some assistance?

Why do some doctors lie in your medical charts just because they don’t understand or believe what is happening to you?

Why do some people who abuse the system get disability, but the ones who desperately need the help and are suffering not get it?

Why do people have to suffer?

Why do people get told that they are too disabled to work, but can’t get disability?

Why does life have to be this way?

Why does the medication that is supposed to help cause bad side effects that prevents you from being able to take it?

What does life have to be so difficult?

Why can’t people be able to be healthy and happy?

Why can medication help some people but not all people?

Why? Why? Why?

Nobody should have to!

What is one thing that all chronic illness sufferers want?  Answers to health issues and understanding!

Stop me if you’ve heard this before! I love stuffed animals!

They don’t understand….

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What is one thing that people really don’t understand about fibromyalgia???

The severity of the pain!! They don’t understand and sometimes don’t believe ot can actually hurt that much!

Today I wheeled my chair closer to my desk and lightly tapped my knee on the edge of my desk, you would have thought someone hit me with a hammer!  I almost cried!! No joke, and I barely touched it! The pain only lasted about a minute, but the pain was terrible!

Sadly that is a common the g with fibromyalgia! At times people can just rely their hand on my arm and my eyes will fill with tears! When they grab my arm so that I don’t fall, it sends sharp pain shooting through my body! It all hurts too much, way too much!

Not many people will understand that! They will look at you like you are crazy, saying “it can’t hurt that bad!” Oh, but it does! Everything hurts so much more when you have fibromyalgia and I  get that it is hard to believe! Iv’s are the worst, they really hurt! I’ve had nurses try to argue with me that it can’t possibly hurt, their argument is always “it’s doesn’t hurt, there is no needle left in your arm!” Sure no needle, but there is still something in my arm and it really hurts!

I have to stab myself every month with my migraine medication! It is real torture to hold that needle in my leg for 10 seconds while it injects the medication and with extreme pain in my leg! I mean the minute of bad pain is worth it as it helps me not get so many migraines , but dang it if you regret it during the injection!

Sometimes all you have to do is wake up and you feel like you were run over by a train! Yes, I know I can’t really know what that feels like but, seriously it is a major amount of serious pain here!

I hate this pain! I hate that people don’t want to or try to understand! I hate the place that caused  me to have all this pain! I hate that this pain has taken so very much from me!

I wish more people understood! I know that they don’t really have to understand, they can’t remember everything for everybody, but it would be nice if more actually did! I wish there was a way to ease the pain! I wish there was a way to get some part of my life back that it stole!

I didn’t ask for this life, but I will continue to do my best to live the life that chose me!

What do you wish more people understood??

P.S. Cats are my most favorite animals ever! They are so beyond wonderful!

Mental health….

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Talking about mental health is not attention seeking! People die in silence everyday due to this judgment and then people finally say “I wish they would have said something!”

We live in a society that stigmatizes mental health but mourns suicide!

The axe forgets, but the tree remembers!!

If I could show you how awful you made me feel, you would never look me in the eye again!

Mental health relapses happen! It doesn’t mean all your healing is thrown away! Accept what comes and remember allowing yourself to feel, even the uncomfortable things, is part of the process!

You are not required to set yourself on fire to keep other people warm!

The heart gets confused when it’s constantly told “I love you” by the same people who destroy it!

It’s not an apology:

I’m sorry, but….

I love you…..

Just forget about it…..

You’re being too sensitive…

It’s not my fault you feel that way…..

I didn’t mean it that way….

I will apologize if….

I’m sorry that you….

Let’s just move on….

I don’t  know anyone else who would get upset over this…..

I only said that because you….

If you know someone with a mental illness who has stopped showing their struggle, don’t assume it’s because they’ve gotten better!

Sometimes the moment they atop showing it is the moment they’re really getting worse!!

Are you okay??

No, I’m not okay! I am depressed, my life is falling apart, I want to tell someone! I want someone to hug me and tell me honestly that everything is going to be okay! I want to tell someone everything that is hurting and bothering and/or happening to me….

Sure, it’s okay, I’m fine, thanks!

Having anxiety and depression is like being scared and tired at the same time! It’s fear of failing but no desire to be productive! It’s wanting friends but not wanting to go out and socialize!

It’s caring about everything and nothing at the same time! It’s wanting to be alone but not wanting to be lonely!

Don’t be so hard on yourself, you are doing the best that you can!!

Mental illness is not a personal failure!!

Your feelings are valid!!

You deserve to be loved unconditionally!!

You deserve to be happy!!

If all you did was wake up and survive today, you are doing great!

You are enough!!!

What did you do today to make yourself feel good????

I didn’t sign up for this…

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Me: Have you figured out what wrong with me?

Doctor: You have fibromyalgia!

Me: What the heck is that??

Doctor: We have no freaking clue!! Mostly pain, but also kind of like the flu! Oh, and bits of you will stop working for no reason! You will also have zero energy!

Me: Um… that doesn’t sound good!

Doctor: Oh, you’ll need plenty of rest, but won’t be able to sleep!

Me: Uhhhh…..

Me: Hmmm…..

Me: I didn’t sign up for this at any point in my life!!!

Writing to you…

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Writing is hard, I often thought ”could I write a book or blog”. My brain is often full of ideas as I am always trying to find things to do. I like to write things down as I can never remember anything.

I also like to write the stories I post here, it helps a lot when you need to say something about life but talking hurts why too much with a paralyzed vocal cord.

I don’t post everything I write out as sometimes it is only written to get it off my mind and I feel better. There are times where I am so annoyed with it all, that I Write it all out and then delete it in a few days.

I used to have a ton of ideas or words to write, but inspiration doesn’t hit as often anymore. Words are hard, for real! My brain is in a fog these days and I can’t remember the technical words or the right way  to word  things. I make a lot of spelling errors, and proofreading is not a strong skill with me.

I always say these days that as long as you can tell what I mean, it doesn’t matter if there are errors. Anything I write will never be great, but that is okay with me.

I have always wondered how all the writers in the world can make up everything they write and how do people not run out of ideas? But then I can create a whole alertnate world in my mind, but would never be able to put it into words. I listen to a lot of books and the authors go into so much detail, it is amazing! I get lost in my books and see them playing out in my mind. I often get sad when a book series ends as I am losing my friends that I loved to hear about. But, then I get the fun of getting to know other people and their worlds!

I do have a vivid imagination, as I writing this on my I-pad, in my mind I am in a cabin by the lake typing on a typewriter or in a tree house watching the sky and as I think or talk, the words get written down by themselves. It makes life more fun to have a great imagination, just don’t forget about the real world out there, lol!

I get confused by words sometimes. For example, the book will read “He hanged himself” and I would say “why can’t you write “He hung himself””? So many phrases and words confuse me and some people would think that I have never learned anything about the English language or writing even though I have, but brain fog and confusion has ruined all that.

A while back I had so many ideas written out and I posted them all too quickly and now the gaps in between inspiration gets longer and longer. It’s is not that I have to post often, but I don’t like huge time gaps in there for some reason. I think that is why I get burnt out and quit doing social media and things like that, because I convince myself that I have to do a certain amount of stuff with it all and it gets to be too much for me to deal with and then I just disappear for a while. Some things are gone forever at that point, and something I go back to occasionally.

I don’t really know if there was any purpose in writing this all to you, except to maybe say that I am not good at words, but It’s done and maybe you enjoyed it. In my mind I enjoyed writing to you and I slid the paper from the typewriter and threw it in the air and it soared away to you! Also the other side of my brain, I just walked this out to the mailboxes and mailed it to you! Anyway you want to look at it, it’s all good in my neighborhood!

Incase you didn’t notice a trend with these stories, I like to end with a question or two. So these are my questions, it is your turn to talk! I hope that wherever you are, that you are having a most excellent day!

Is there something like this that you enjoy? Do you tend to get too wrapped up in things that you get burnt out?

Do you ever type lol or a laughing emoji and not laugh? I do that a lot! I find whatever I see or read/hears funny, but you couldn’t tell by looking at me! Ha ha ha!

P.S. I love the chocolate!

I stabbed myself…

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I never thought that I would stab myself! I never thought even though it was so very painful to do that it would give so much needed relief!

I have had migraines since I was 15, they definitely are not any fun! I named my migraine Julie (Previous blood post) and she does not like to leave me alone! Along with the horrific pain I get extreme sound & light sensitivity and very dizzy and nauseous! I was able to somewhat control Julie but as I got older she got more aggressive!

For years I was only prescribed Imitrex, which did not help! I had like 4 different meds/OTC meds and a heated eye mask to try to help get rid of Julie as soon as possible or get some sort of relief as once she shows up she stays for at least 4 days.

January through end of March are always the worst time as Julie is there with me EVERY SINGLE DAY!! I couldn’t live like this anymore and was fed up with the treatment of the migraines I was receiving. I finally convinced my pcp to try something else and actually got a medication that somewhat knocked the pain down, not to an “I can ignore it” level but it was a little better. Unfortunately we had to try this med for a bit before we could go to the insurance company to get better meds.

I wasn’t thrilled with going back to the neurologist I had dealt with before, but then thought it would be okay as we were dealing with migraines and those are more understandable. I was prescribed Emgality and it took over 2 months to get the insurance company to approve it!

I was not expecting anything miraculous and being very very scared of needles was not thrilled with the idea of stabbing myself every month, but that is how much I am over dealing with Julie.

I finally got the injection meds in the beginning of December and holy rusted metal Batman did that freaking hurt! I almost vomited it hurt that bad to inject the meds into my leg, but I insisted that I needed to do it myself. I was amazed with the results! It kick Julie in the face,, the pain was gone and I mean GONE! Oh sure the nausea, dizziness, light & sound sensitivity ramped up, but the level 12 pain disappeared. “POOF”

I was told it could take a few weeks to kick in and work but the pain was gone with in a day. The last week of December Julie showed up with the pain again, and sadly had to wait until January 7 to do another injection as they have to be 30 days apart. I got used to the very little to no pain for the month that I hated having it back and it has been very hard to wait for relief when you know how good it was!

At my most recent check up with the neurologist, she said it will only get better the more you take the medication. I am very impressed and optimistic about this medication. I have been searching for and trying so many different ways to get relief from Julie and am beyond thrilled to finally have some! After so many many years of dealing with this horrible pain it is still surprising at how you forget how bad it was when you have a couple weeks of relief.

I highly doubt that this will ever make me like needles, but I may get used to and okay with this injection!

I almost couldn’t stab myself again on January 7, the thought of all that pain and fear of needles almost got me to not do it! I made myself do it and it didn’t hurt nearly as bad as the first time, but it still hurt a lot!  I will probably encounter that every time but it is so worth it to lessen and/or end the pain.

Julie is still hanging around right now, but she is only causing and dull ache, enough to know she is there but not enough to be a huge problem. Dizziness and lightheadedness is still ramped up and I look forward to that lessening as well.

My thoughts are so far I am very impressed with Emgality and will continue to stab myself once a month.

If you suffer with migraines (which I truly hope that you don’t) how bad are they? What helps knock the pain down?

Nobody knows…

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These four walls closing more everyday and I’m dying inside and nobody knows it but me…

The pain is real even if nobody knows and I’m crying inside and nobody knows it but me…

I’m missing me and nobody knows it but me…

Nobody knows the pain that I feel!

The nights are long and the days are so sad, and nobody knows it but me…

Nobody will ever know the true feelings inside my head. They will never know the pain and torture living in my head. I wish I didn’t know about it either. Living with an invisible chronic illness doesn’t help things at all. It is a very hard life and I don’t wish it on anyone!

You try and get out of your head, but it is just so very very hard to do! Creating and craftiness helps distract me from it all. Listening to books and music is also very helpful, but at some point it all catches up with you and knocks you down.

We shouldn’t be made to feel bad about all of this. I say embrace it, let it out, scream, cry, break things if needed! Visiting these feelings and letting them out can be very good for you. It is okay to not be okay, let yourself deal with it. It is okay to visit and deal with it, just don’t unpack and live there. You need to find a way to deal with it all, find something that helps make you happy.

Never apologize for feeling hurt and sad, it is all part of being human. Never apologize for being you, for being real, it’s like apologizing for being human and that isn’t cool or necessary!

People hate for no reason and it’s becoming too easy and normal to do! I say let’s love for no reason! Less hate & more love!

You are beautiful, worth it, amazing and someone is happy just knowing that you exist! When you’re out doing life things, take the time to smile, wave or even say hi to someone, you never know it could just be the reason that they keep going in this life we live!

Nobody knows the horror that is in our heads, but maybe, just maybe it is time that people learn what is like, then possibly we could all learn to deal with it and help each other out and be a little bit happier!

Can’t be that bad…

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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!