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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