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!

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!