New words needed….

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…

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….

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!

Mental health….

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????

Nobody knows…

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…

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!

Trust the feeling!

You know that feeling in your gut or where ever it lives that something isn’t right, or this person isn’t that good!? Trust it!

I can tell within 20 seconds whether a doctor is going to be good to me or not! This feeling is never wrong! I actually get this feeling with anyone, but I listen to it more closely with doctors!

These medical professionals are supposed to take good care of us, in fact we trust them with our lives without even knowing anything about them because of the work they choose to do!

I listen very carefully and watch closely at how they act when they first get in the room, it all is very important in how they are going to treat you! Now I will say that some of this may have to do with how their day is going and what they read in my chart. I know for a fact that some doctors have written lies about me in my chart and I am not sure how to fix that yet, but maybe what is written makes them think that I am wasting their time, I really don’t know! Maybe I for should ask that some time!

I always assumed that doctors knew best for the most part, and that is true in some cases, but not always! Some doctors like to just go along with the basics and when I ask for more or  challenge them, they tend to get upset! I have had a doctor stop seeing me because I wouldn’t do anymore physical therapy and sleeping pills didn’t help! He didn’t want to dig deeper and try to run other tests or think and figure any of it out! Then of course if he writes something off in my chart, the next doctor will see it and not take me seriously I bet.

Doctors want us to tell them what is going on and what is wrong with us, yet they get upset when you go into too much detail because you have done your research. It is very true when I say that the people living with these health challenges know more than their doctors, because we know how our body is acting and what is working and not working! We need to do our own research and yes I know we can’t believe everything we see online and we don’t want to self diagnose, but it is better that just waiting on the doctors as they take forever sometimes!

Doctors will have more access to the medical side of all these things, but there is a world of information and support groups out there to help us! Talking with others that are going through some the same things you are is not only helpful emotionally & mentally, but also helpful with finding out what is wrong and what to do! You simply take in all the information, notes and everything and go through it and see what you want to talk to your doctor about! It has been very helpful for me! This is also a great way to find out some more natural supplements or things to help you get some relief, of course you should always talk to your doctor about it!

I feel like I have gotten off topic, but I think it all goes together! You are seeking help from these doctors and you need to make sure they are the right fit for you! One doctor doesn’t fit good with all patients! I have lost count on how many doctors have said “well this is what a lot of my patients do, so you must be the same way” or “this works for these people, so it will work for you as well”. Sorry, that is not always the case. They need to learn to think outside the box and we need to learn to stand up and fight for the right care!

If you get a feeling like your doctor isn’t listening well or they are not trying their best, speak up! If you don’t think the doctor is going to listen, then talk to the nurses, I know or a fact that they do listen. Nurses are the ones in my mind that care the most as they do most of the work! You can also ask to talk to the care manager, I have spent a lot of time talking with care managers, both in person and on the phone, as they tend to check in with me to see how my doctors are working for me and I love that! Care managers are the main go between with patients & doctors, they need to know who doctors and nurses are doing!

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Trust your gut!
 

Trust that feeling!
 

Stand up for yourself and your health care!

Talk to nurses!
 

Talk to care managers!

Talk to your support groups! If you don’t have one, get one! We may not know each other that well or at all, but we know what you are going through and are here to listen, talk to, vent to, and brainstorm!

You are never alone!