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!