I don't know what you would call this, intermittant senseless muttering, or ragged thoughts of one who often feels that the thread of sanity is about to break. Call it what you will. I don't care.
I think that's going to be my new motto..."It
hurts to be hugged." It's certainly appropriate. I like hugs. I like to
be hugged by my husband when he comes home from work. He's so good to
me. But, sometimes as much as my heart loves the hugs, an inner voice
says stop,... it hurts.
I'd like to romp and roll with my
granddaughter, but my body doesn't appreciate it. I putter at the
computer a lot. It gives me an outlet. Sometimes she wants to come
crawl up in my lap, and that's ok as long as she doesn't get too
feisty. But if she does, I end up making her get down because it hurts.
How is she supposed to understand why I've made her get down?
She and her mom live here with us. I enjoy our time together, and I watch her while my daughter works. Trying to lift her can be excruciating at times, but sometimes it's got to be done regardless. And by the time her mom gets home from work, I'm done in. She brightens my days though, and gives me a reason to keep going.
What's life like with fibro? My mind doesn't always work so good. I never know what to expect. One time you may ask me a question and I can tell you the anwer. The next minute, I can't. Trying to remember things is hard. Trying to focus isn't any easier. That kills me, I was an honor student in college, my mind used to soak up information like a sponge. Why did this happen?
I just love it when you get the "test" with names or words, then have to repeat them back. Yeah, I can do that, sometimes. But why is it that the so called professionals giving the test, don't want to hear about the times I can't remember, or don't want to talk about times like when I couldn't think of my own daughter's name?
Once at a doctor's office, I was asked what I was allergic to. No problem, I told them. I went from the doctor's office to the hospital for an outpatient test. Again, I was asked what I was allergic to. I couldn't tell them. It wasn't there in my head anymore, it was just blank. Do you have any idea how humiliating that is?
If you can stay here with me on this, more power to you. I have no idea what direction any of this will take. It just occured to me to try to start writing, or typing, some things and thoughts down. Half the time if somebody asks me about something, I never think to tell them what I should have. So here it is, bits and pieces, random thoughts, some days writing something, and other days not.
It irritates the heck out of me when somebody asks if I can drive. Yes, I can. There are times I don't have much of a choice. Here again, they don't ask or want to know about the days I don't drive because I'm not up to it, and the mere thought is more than I care to handle. I don't know how many times I've put off doing something that needed to be done, or cancelled and rescheduled doctor's appointments because I simply did not have enough oomph to go.
While ago my granddaughter wanted a cracker. I worked on getting the package open, and that's what got me thinking maybe I should start trying to express myself in writing. You know it hurts my hands and fingers trying to open things? Simple things like trying to tear open a package of saltine crackers. I keep a pair of scissors in the kitchen, they get a lot of use. Sometimes my grip ain't so great, and I have a time holding on to things.
I despise it when people ask what I do, instead of what I feel like doing. There is a difference you know. Did I do a load of wash? Yes. Did I feel like doing it? Ok, totally different answer. No, I did not feel like doing it. You know there's a big difference between doing something because you want or feel like doing it, and doing something because you HAVE to. Sometimes things have to be done, somebody has to do it. Force, sheer force, the ongoing battle of mind and body. Body says stop, mind says you have to do this, and no I won't let you drop where you stand. There have been times though, when my body won out, and I sat myself down, right on the floor.
I hate shopping. I go along like every thing is hunky dory, while inside my body is screaming to stop it. And inside my head I'm screaming, I want to go home! Countless times I've stood in line to check out, my body feeling like it's literally going to collapse right there on the spot, and part of me wanting to let it go. While the other part forces myself to keep standing, and smiling to the world like everything is just peachy keen. Forcing my feet to keep going, one at a time, while the pain screeches and riccochets throughout my body. Yeah, I'm having a real good time.
How about this one. Trying to say something, and a word comes out that makes no sense, and has nothing whatsoever to do with the conversation that you're attempting to have. Where did it come from? Why? What little gremlin substituted it when I wasn't looking? I have to admit though, there are times that it's funny.
Staring at meat, have done it many times at the grocery store. Trying to get groceries, I'm so tired, so ready to go home, and suddenly realize that I'm doing nothing except standing at the meat counter, blankly staring at packages of meat, and unable to think intelligently enough to know which package I should pick up.
I have my moments, this might be one of them. Sometimes I get on a roll and words and thoughts come tumbling out. Sometimes they might even make sense and sound reasonably intelligent. Hooray for me! I'll try to hold on to the glory of those moments when I'm on the other side of the coin and can't think of the doggone simplest word that I want to say. Or like when I can't drag up the name of something, and end up doing the descriptive thing, followed by, ..oh you know, that thing there.
I used to love to bowl. Did the league thing, the tournaments thing, had a wonderful time. I gave that up some time ago. Throwing the ball got to be way too uncomfortable. I don't even go into bowling alleys any more to watch. I can't stand the noise, it makes me want to scream. I don't like noise, I like quiet. Don't throw too many things at me at once, I can't juggle them all in my brain and sort them out, especially when it's the TV going, and two people talking at me at once. If the dogs start barking, forget it. It's time to throw my hands up to my ears and scream, stop!
I always loved hanging clothes out on the line. Not only is it a chance to get outside, but it's a good ringside seat for watching chickens scratch in the sun, and cats play with invisible mice. My arms get so tired though, and ache.
I'm tired of being tired, and I'm tired of hurting. Sometimes it can be scary. Like when I turn or move and a numb, yet painful feeling goes from my neck into my shoulders and arms. Sometimes the pain going down in my arms is enough that I rock and cry.
I don't like writing, not with a pen. My hands get tired so quick, and they cramp up. My penmanship stinks anymore, lucky you if you can read it. It's a lot easier to say what I got to say, if I can type it. Same with crocheting. Used to could whip right along on a project. Now when I try to crochet, I got to stop every little bit to rest my hands. My fingers don't hold the yarn as good as they used to, and I've about given up on trying to crochet with thread. It's too hard to hang on to now. Klutz fingers I am.
It hurts to bend over. I'm not sure what hurts more, my lower back, or up higher. And sometimes if I cough or sneeze, I get an excruciating pain in my back up below shoulder blade level.
Ok, let's talk about my bowels, such a pleasant thought. I never know what to expect, can I, or can't I? Will they, or won't they? And those times when I feel lightheaded, my gut cramps up, I break out in a sweat, get nauseated, maybe throw up, then begin shivering with chills, and wish I could die it hurts so bad. IBS, Irritable Bowel Syndrome, attacks are unpredictable, and not selective about just happening at home. Hello? I'm not 80 years old for cryin out loud. Why do I feel like I am?
Sometimes I wake up feeling like my back is broke. It takes me a while after I've sit or layed a while to get moving. Sometimes my legs just seem to have a mind of their own. Sometimes my feet do. My feet also take notions to pop and crack sometimes when I take steps. And between them and my legs, on occasion I'm not sure but what I'm not going to go down. It doesn't help when I have those episodes of difficulty with motor control, and my hands and legs take notions that they're going on strike and refuse to cooperate.
As much as I hate the idea, there are times when I go outside, that I grab an old cane. It just seems to help a little, maybe it's a security thing.
Don't interrupt me when I'm trying to focus or hold a train of thought. It totally screws me up. I forget where I'm at, what I was trying to do, what I was thinking.
I get headaches a lot. Most of the time I can deal with them. There's been a few times they were too much. Of course then again, I also live with Pseudotumor Cerebri, or Intracranial Hypertension. When the pressure builds up around my brain, I have to have a spinal tap to relieve it.
Temperatures, don't tolerate heat at all, it wipes me out. My hands don't tolerate cold any more. They burn and hurt when they get cold.
My life isn't totally worthless, although I have my moments that I feel that way. I do still know how to laugh, and I sure know how to cry. Had a lot of practice at that one. Sometimes I just feel so very tired, in more ways than one. Then I wonder why is God making me stay here? When do I get to go home?
It seems as though it's all or none. If I can do anything at all, then I'm supposed to be ok? Apparently I'm supposed to be dead or a vegetable to feel like this, or be like this, or whatever. Can't people understand that if I'm having a better moment, I want to try to do what I can? I want to try to savor those moments and grab at a chance to pretend I'm still normal, before I'm reminded that my life is not what it used to be. I was always on the go, doing something, working at something, ....working. Do you think this is fun, life like this? This is not how I wanted my life to be. You want to live it for me?
I know I'm getting older, you don't have to tell me that. And actually it really irritates me when you do. All you're doing is minimizing what I'm trying to tell you. No, I don't expect my body to perform like it used to as I get older. But hear this, it's not age that's doing all these things to my body. Pay attention please.
I don't like getting out. I sure don't like crowds. I have friends and family that I care about, but I still like to set the boundaries of how close, and how much I interact.
Don't corner me, I feel panic coming on, literally. Even sometimes in the store, someone is talking, sometimes that's ok, and sometimes I start feeling a panic growing in my gut, and it's all I can do to keep from running. I find myself backing up away from them.
Done been down the road with umpteen tries at different medications. Mostly I haven't had too good of luck with them. I've about given up on anti-inflammatories. What helps more than anything is sleep, and rest. Which makes it interesting since half the time I can't sleep. Can't get comfortable, don't sleep a good sound, restful sleep. Try to sleep but my legs are hurting so bad I can't find peace. Finally going to sleep and waking myself up jerking. I am so very lucky to at least once in a while sleep a good night's sleep. Thank the Lord!
My life is so erratic, I never know what to expect from one day to the next, and certainly not from one hour to the next. You know I do actually have moments that I feel almost human again, then some invisible force body slams me into the floor. Leastways, that's what it feels like.
I resent people treating me like I'm stupid, I'm not. My brain may not work like it used to, but I do still have one.
I resent doctors who treat people with fibro like they're stupid, they're not. They're also not crazy. Although, I guess if I'm crazy, I can thank my mother for that, it has nothing to do with the fibro.
I hate it when I sit here at the computer, staring at the monitor, trying to remember what it was I was going to say, and nothing comes out. Fleeting thoughts, here and gone before I get them down
I went out on the riding mower. It was fun. I felt like a queen on her John Deere. I got something done. I payed the price. For three days I payed.
Don't do kids ballgames anymore. Too many people, the bleachers are too hard
So many things I want to do. I love it here on the farm.
Sat down and pulled some weeds one day. That shouldn't be too difficult. Had to stop every few minutes to rest. After a while my hands were hurting. The next day my finger joints were swollen and were so sore. Oh, yes, I have arthritis and dengenerative disc disease too.
I get up of a morning one of two ways. Thinking, I don't feel like getting up, I want to stay in bed. Or, ok, here's what I'd like to do today. I'm trying to remember when was the last time I got up thinking about what I'd like to do, and actually getting all those things done. When was that? Oh yeah, I come up with some great plans.
I love horses. Loved to ride. Haven't done that in quite a while, had to give it up.
What I used to do in an hour, takes several now. If I get done at all.
I want to go out and cut wood, build fences, work on that list of things that need to be done. Want to. Want to. Want to......How I love doing those things. I want to.
Fibro isn't all bad, there's a blessing side of it. I've had time to find God again. He hadn't gone anywhere, He was there all along, I just forgot.
Da Queen of Denial...sometimes. Especially when I have those better days, and I think I can conquer the world, and I foolishly go out there and try to do the things I used to do. I can pretend this doesn't exist. But not for long.
May I have permission please to accept what has happened? I'd like to move forward.
Back to minimizing. It may not be important to you, but it is to me. I can't make you understand or care. It's not your life.
Am I miserable all the time? No. I actually have a pretty darn good sense of humor. It comes in handy. And sometimes my body gives me a little break. Now those are the moments, when brain and body are having a good day.
I'm still a kid at heart in a lot of ways. I'm not a total frump you know.
I like to giggle. I should do it more often.
You're welcome to take a tour of the inside of my head. Some rooms however will remain locked. What's in there is between me and God.
Bitter? I try not to be, but sometimes it's really hard.
I love it when I can do something to help someone.
I would give those who are dear to me the world on a platter if I could.
You know those times you find yourself in a room and wonder why you're there? There was a reason, whatever it was, but now you can't remember why. Oh sure, that happens to everybody. There's plenty of jokes about little old ladies not remembering what it was they were going to do. I'm not a little old lady. And there is a difference, take my word for it. There's the not remembering why you walked into the room that's annoying, but oh well no big deal. Then there's the not remembering why you walked into the room, and it's frightening. I don't know how to make you understand the difference, you'd just have to experience it. Take my word for it, you won't like it.
Changing diapers can be a painful experience. I can't lean over and try to hold that position, without back pain. That's something that comes in handy to do if you have grandkids.
Nausea is not my friend. But it's there, several times a day, every day, without fail. That's how a friend should be, but no, it's not my friend
When I was a kid I used to daydream that I could fly. Now I just feel like I'm floating. Sometimes. Light, rising, spinning. Somehow it's not the same as the daydreams I had.
Leaning my head back for more than a few seconds makes me feel like everything is being shut off at the neck. I don't lay on the floor on my stomach and watch TV with my head tilted back. It worked ok when I was a kid. It worked ok not that many years ago. Not now. It's hard for me to change light bulbs. That trying to look up and hold my head back, makes the room spin. I try to get someone else to change them because I'm afraid I'll fall.
I like my hair long, and it's a bit of a cultural issue with me. My husband likes my hair long too. I've had it cut short several times. Not cause I really wanted to, but my arms get so tired trying to brush it out when it's long. After it was cut and I saw myself, I wanted to cry. Not because it was a bad cut, but because it wasn't me any more. I suppose though in some ways it was appropriate to cut it. That's done in times of mourning.
I often talk to God. I'm sure He understands why I don't get down on my knees when I pray. It hurts too much
Sometimes I get pain in my chest, and through into my back. It feels like a dagger has been shoved through me. I've never quite figured it out. There doesn't seem to be any rhyme or reason to when it does it. It is horribly excruciating when it happens.
I give up trying to figure out how to answer when someone asks me if I'm ok? Honest answer? I haven't been "ok" for a long time. Let's see, just when was it that I was "ok"? No, I'm not ok, I'll never be ok again. I'm trying to live with that. You try it for a while.
Am I depressed??? Well duh!!!! Gee what do you think? Wouldn't you have bouts of depression if your life had been turned upside down?
If I told you I had Multiple Schlerosis, do you think you might be a little more understanding? I don't have, I've been tested for it several times, because my fibro quite oftens mimics Multiple Schlerosis.
The good news is, I found an awesome rheumatologist that specializes in fibro. He works with me on the arthritis too. I'm finally on some meds that don't cause awful side effects, or are ineffective, but actually help. It makes life a little more bearable, which I'm greatly appreciative of.
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