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!

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!