Will Chronically Ill Ever Be Safe?

It feels like I am on week 782 of the lockdown. I know I am not alone in feeling like there is no end to this. With so much misinformation out about COVID-19, I am left to feel like the only safe option is to stay home. Wear face masks, wait – no, they won’t help. Wait – yes they will, but not the ones we said to begin with. Wait – no they won’t, cloth won’t help, neither will this or that, but wear it anyway. Yes, they should work so we are going to enforce you all to wear one.

Is there a single thing anyone can all agree on with COVID-19? We went from our president addressing his nation every single day type of scary to no big deal within weeks. Now some say it is all hype and a plot to divide us even more. Listen, people who deal with chronic disease on a daily basis already, don’t need one single other thing to threaten our health. We already don’t trust our physicians, for the most part, because we are still reeling from the “opioid epidemic” which I am assuming isn’t an epidemic right now since COVID-19 is front and center. One thing I think we can all agree on, we surely don’t trust them now.

If we can’t trust our doctors, our government, our media, or even our peers any longer to tell the truth about a truly big problem, how can we trust anyone about anything anymore? Am I the only one who feels like I have been further pushed back into my shell about anything and everything at this point?

The bottom line is this: we MUST trust our gut. We have to know our bodies. We have to know what is right and what is wrong at all times. Not only on a health level but on a decent human level. If I think there is even a small chance that I could be spreading a disease that may only be a cold to one person but has the potential to kill another person, I should have the decency to stay home. If I don’t stay home, wear a mask. I think we need to shift our thoughts from being that wearing a mask stops me from becoming sick to that wearing a mask stops me from infecting other people. Go one step further and add in the fact that everyone else is wearing a mask and you now have two masks between one person and the disease. It really isn’t that hard of a concept to get behind.

Is it really too hard for people, and I mean EVERYONE, to add one item to their daily attire? If it was cold and you needed to wear a coat you surely would do so, right? So why is this one little face-covering item causing so much drama?

Everyone is screaming about Black Lives Matter, yes they matter. I’m in no way trying to belittle that cause. But, I’m over here wondering why nobody is calling out the petty people who are basically screaming – only my life matters – by their refusal to take the teeny tiny small step to wear a mask. These people are literally scattering conspiracy theory after conspiracy theory all throughout the internet in a time where there is already so much confusion going on, it doesn’t make any sense.

Step back, analyze, tell me you can’t see how petty it is, and then come back and talk to me. I haven’t posted on my blog in a while because I feel like I am losing confidence in the human race at this point. I’m scared to say exactly how I feel because it can get so twisted in this world we live in today. But this face mask thing, shouldn’t it be a no-brainer?

I welcome your thoughts on it and if anyone can make me see what I am missing, I urge you to do so. This isn’t a republican or democrat thing to me, it is a human thing.

I leave you with one final thought on the COVID-19 and the way it has been handled: the country went on lockdown for around two months. Numbers were starting to look like they were slowing down. They were still rising, but not as fast as today. Why did we decide at that point to lift the lockdown? It felt like paying nearly an entire car loan off with only 2 or 3 payments left and then stopping and letting the car get repossessed.  

Trapped By Illness

cbcb67c91ceb2ff56bdd60601c9eaf64Have you ever been somewhere that you really really didn’t want to be?  All you can think about is the moment you get to leave. The feeling of slipping back into your pajamas when you get home and hitting the bed like a ton of bricks. The random thoughts that run through your head –  this time tomorrow, I won’t be here. In just three more hours this will be over. This is just a few hours out of my entire life, I can do this.

 

Now, imagine that feeling for the rest of your life. Only you aren’t somewhere you don’t want to be. You are just trapped inside your own body which is breaking down at every single turn you make. You can’t even find a comfortable position to lay and exist in bed. It is miserable.

 


imagesNot only are you overtaken by pain from doing merely nothing besides waking up, but you know all of the things you should be doing are going undone and it is all your fault. You know you look lazy, crazy, and useless to the people around you but you have learned to just accept this label. It’s not fair, but life isn’t fair. This is a saying I have said to my kids more times than I can count and it has come back to bite me tenfold. – “Life’s not fair.” “The only fair you are going to find in life comes to town once a year.” “You buy your tickets and you ride your rides and that’s all the fair you get.” I don’t even get that. I can’t walk around a fair. I struggle to walk around the grocery store.

 

chronic-illness-memesMy 16-year-old son does all of my grocery shopping. I haven’t been to Walmart in months. I am so grateful for him doing this task for me and he will never know just how much. I think about how quickly they go from 16-year-olds to adults living elsewhere and think that by then my house will be clean. By then I will be able to do my own shopping. And then reality hits. By then, I will probably be worse off than I am now and I won’t expect him to do my shopping anymore. By then, what the Hell will I do?

 

I think when you spend so much time accepting the things you can not do it causes you to put off even the things you can do. For instance, writing in this blog. I keep putting it off and I don’t have a reason why. If I’m being honest, writing here is comforting because I am hopeful that sharing my feelings causes someone out there who is having the same life struggles to feel less alone if they stumble across my blog. I am holding on to the fact that my inability to do what I want will somehow encourage others.

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For several months I have been trying to build a store in Shopify that piggybacks off of my blog. So far, it has only been a hobby which I am constantly trying to make profitable.  I have never sold a single thing but I am learning a great deal about what to do and what not to do as far as designing goes. If you have time, check it out HERE.

 

IMG_6395I know this has been a short post and the posts haven’t been happening a lot lately. I do hope to change that very soon. If you have time to leave me a comment, I really do enjoy hearing from others just like me. I hope you all have a Happy St. Patricks Day!

Pain Fog

Every day I think about things I should be blogging about. They are so random and come into my little bird-brain yet when I come to WordPress to share them with the world, they’re gone. Where do they go?brainfog

 

Where does my brain go when I walk somewhere as close as the other side of the bedroom? I get there, assuming I had a reason for coming, and it’s gone. I have no clue. So I do what any logical person would do, I start looking for whatever it is that got me there in the first place. And so begins a treasure hunt. I am searching through random stuff in an area of the room for, what the hell am I here for???? And I need not mention the number of times I get sidetracked in my hunt for what I am doing in the first place. How do you get side tracked from being side tracked from, again, what the hell am I here for?

 

I used to play it off and grab something and go back to my seat with whatever treasure it was I frantically found. Now, it happens so much that a continued golden globe actress performance only makes me look like a forgetful crack-head.

fibro meme

We’ve all had times like this. Not everyone can blame a disease or constant pain so at least, I do have a culprit.  But just how far will this fogginess go? What can I do about it? If I found a workaround, would I even remember what it was? Probably not.

 

 

 

itsnotjustpain

It’s an evil cycle because you are self-aware that you aren’t at the top of your game when you’re off. You are self-aware but you don’t want anyone else to notice. Trying to hide it only makes it worse and throws you further off track. See,  I have noticed that If I stay focused, at least half of the time, I can work it out in my head without being noticed. However, if I forget and then get nervous that I have done so, I seemingly throw myself into a loop.

 

Why do I care what anyone else thinks? Should it really matter? I mean, I am at home in my own house. These people should understand. Right? Wrong, I care because I don’t want anyone to know just how maddening this disease is for me at times. I don’t want to be a burden on anyone. I need to be the one that harbors all of the pain and worry, not my family.

spooniebreak

Having a disability leaves you feeling very lonely. This is why so many of us turn to blogging.  We want to be heard. We want to see if anyone else is dealing with the same struggles. We want to know these things, but we don’t want to be found out. We don’t want anyone’s pity. We want someone to hear our cry for help even though we are too proud to cry. We want spoons. Extra spoons. (Google it if you don’t know) We want to know that we aren’t the only people on this Earth who feel the need to silently cry for help, while also knowing there is nothing that can be done. We just have to be strong and carry on.  And we do. We keep on keeping on because if there is one thing we all agree on, it’s that we are strong beyond our own realization. We tread through life that would exhaust those who don’t know what true tiredness is.

 

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