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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What They Don’t Tell You

As a person who suffers from chronic illness, I am finding I miss things I swore I hated.214460-I-Miss-You-Pig-Time

I swore I hated cooking.  Sure, it is nice to have a home-cooked meal and it is an amazing feeling when you are the genius who concocted a delicious masterpiece the times you got it more than right.  But let’s face it, there are times we all bomb out and knowing you just poured your blood, sweat, and tears into the yucky meal you are all but forcing yourself and your family to eat is a miserable, embarrassing feat. Not only did you work your butt off for it, you now have to eat it and clean up the mess. There are times there are so many leftovers but you know there is no sense in putting off disposing of it by putting them in the refrigerator.

I thought I hated it, but I would soon come to realize I didn’t. I still don’t like cooking because of the reasons mentioned above. However, I wouldn’t have quit trying if I had the choice.  I still cook but it is a rare occurrence.  I don’t have it in me to churn out a meat and three 5 to 6 days a week. Now, I’m lucky if I do this one day a week. ff5ad80873f9181d287eaebbd4b7d9b6

I still eat and my weight is the most obvious verification of this. But I don’t eat as healthy and I don’t enjoy it the way I used to. My grandmother was the best cook to ever walk the face of this planet. I do believe that in some of my dishes her talent was obviously passed down. However, unlike me, I can’t recall her ever producing a bad meal.

 

I hated cleaning. I still hate cleaning. But what I hate even worse is not being able to keep my house as tidy as I should be able to. Even asking the kids to pitch in doesn’t suffice in this area. Kids cut corners. I know this to be true because I once was a kid, even though that seems like a gazillion years ago.  My house is a perfect example of it not being done the right way, also know as my way. I-Miss-Myself-simple-title-graphic

 

Your house is supposed to be an example of you. If my house is an example of me, well, I am very unorganized. It isn’t at all nasty or anything. I don’t have a bug problem or things growing from uncleaned spills or dishes. I have a home that looks “lived in”. And there is a whole lot of living going on in my house. However, silently, I am not living the way I want to or how I envisioned. Nobody wants to hurt. Nobody wants to be sick. Nobody.

 

I have always thoroughly enjoyed a good shopping trip. Now, I dread a simple trip to the grocery store. I despise going Christmas shopping. I despise going shopping for anything. Even if I have plenty of money to spend, the drain it puts on my body is something with no monetary value.

Speaking of Christmas or any other holiday, this too is an area I don’t particularly enjoy any longer. This is probably the hardest thing to have to admit. Christmas had always been my favorite time of year. It is supposed to be a cheerful occasion. Now it means several shopping trips are needed. Decorating the house is needed which also means taking the decorations down is in the near future. Cooking is needed as well as the trip to the store to get the correct goods followed by another trip to get the things you forgot. youdontkno_ivpyrEDR

I used to put up so many decorations it looked like Santa threw up all over my house. I have Santa figurines I have collected since I was a kid and they are usually spread throughout the house. I even had a tree in the kid’s bedrooms and plenty of decorations to decorate them all. This year instead of dragging all of my prized decorations out, I went to Walmart and bought a few jumbo packs of decorations and put them on the tree. Not a single Santa was displayed from my collection.

 

viciouscycleAnd here is the thing that sucks the most about what they don’t tell you you’re going to miss: The knowledge that you have of things not being the way you want them or think they should be. The house isn’t cleaned the way I should be able to do it. The dinner isn’t healthy and doesn’t taste as good as it would if I had cooked it. The holiday wasn’t as exciting as it could’ve been if I had been able to accomplish what I once could. It is all MY FAULT. I can’t blame it on a single other person and there is nothing I can do to fix it either. It is a vicious cycle.  A cycle that doesn’t seem to be breakable. And one that makes you look like a lazy person who doesn’t care enough about these things. And to keep from looking even worse or like you are blaming your disease on every missing aspect of your life, you just accept fault. You are defeated.

Bitter Cold Break

I have been on a small hiatus from writing on the blog lately.  I have fussed about this before, but maybe it bears mentioning again.

 

My insurance policy I had last year decided they no longer would cover my Methotrexate in November. I was also still dealing with the broken foot which is, quite possibly, the most painful injury I have endured in my life. youknow19

 

I have also complained a great deal about the side effects of Methotrexate and I promise you now, I will NEVER do that again. You see, you don’t realize the extent that a medication is helping until you abruptly quit taking it and your disease kicks into high-gear. No, Methotrexate is certainly not a walk in the park, but MCTD and RA mixed with mending bones and the wonderful winter we’re having this year are far worse than a Methotrexate hang-over (for lack of a better word).

alabamasnow

In Alabama, where I live, it is extremely rare to see snow. We have no idea how to handle snow here and our entire state shuts down at the mention of it. So for it to have snowed twice in one year is kind of a big deal. Years ago, I would’ve loved it. It’s exciting to experience snow when you aren’t accustomed to it. But when your bones ache all over on good days and alarmingly alert you of unstable air outside on not-so-good days, they darn near give up on snow days.

 

Another problem which I still haven’t found a resolution to is cold feet. I have written about this before. I am so determined to find a good solution to this problem but I am starting to feel deFEETed. I know that isn’t how you spell that.

 

My feet will be cold for so long that they pure hurt. And then when I have finally found the perfect combination of cover, sock, heating pad, and position to warm them they quickly go from Jack Frost to Satan’s den. There is no in between.

weather-and-athritis

The morning of the last snow day we had I awoke thinking I may be running a fever. I thought this because I couldn’t get warm. I couldn’t get warm because our heater decided to take the day off. Not only was it not heating, it was blowing cold air. I think it took the better part of the week for my body to warm up from that problem. Luckily, my husband is friends with the local AC/Heater repair guy.

 

I couldn’t tell you the technical name for the thing-a-ma-do-hicky that is broken on our heater, but I can tell you that it works intermittently now and that if I want to fix this it’ll cost around $500.00. Considering the fact that in Alabama we typically need heat at night and air conditioning during the day and that it still works some of the time, I can not justify that expense right now. If it ain’t broke (completely), it doesn’t need fixin’ right?

coldarthritis

With all of this being said, I have had a lot more going on this winter which I will save for another post since they have been few and far between.

 

My son has the flu so I am off to spray some more Lysol. Ya’ll pray that we keep it from spreading to the rest of the family and pray that he gets well soon.  He says he’s never been this sick in his life and coming from him, that speaks volumes!