Tuesday, June 25, 2013

Wrong Words

The funny thing about Fibro (if you can find humor in it, I try to) is that your memory causes you to put the wrong words in places, and you truly do not realize it.

I was just reading an older post and read that I was taking Celexa at the time. No, in fact I was not taking Celexa. Thanks fibro fog! I was taking Cymbalta, not Celexa. I can laugh at this right now because I have read that entry more than once and just now caught that. At least it was an actual medication name, and I didn't write something like Cat or Cheerios.

In a flare, such is life. Have developed a new symptom that I plan to discuss with my doctor. Thankfully it is intermittent. What seemed like kaleidoscope vision, but probably more accurately would be dubbed double vision happened to me about a week and a half ago. Not sure if it is the medication or something else. Was quite scary and happened during a very intense flare.  Then I was fine for a few days, flared again and haven't stopped. No more vision issues but now I have feet tingles, which is new.

Gotta love fibro.

Tuesday, May 28, 2013

Thankful For the Good Days

So many days we focus on the pain. Don't get me wrong, flare days (or weeks, or months) are no fun. Some days I drag my butt to the computer and try to stay awake and spend my days making phone calls that I need to make, and that's the extent of the work I get done. 

But some days are perfect. Yesterday was one of those perfect days. It was also my daughters fifteenth birthday and I was so thankful  I woke up feeling physically well! We had made big plans to go to the local theme park/water park. 

Now when we go to this place it involves a lot of "stuff". Two backpacks full of large beach towels, refillable cups with straws, bathing suits, suntan lotion, snacks and other odds and ends. It is about an hour drive each way and the day involves lots of walking, swimming and it can get really hot. All of this carrying, driving, heat and walking can start or exacerbate a flare of fibromyalgia. I was pretty aware that I would wake up today at least a little sore, or at worst in a full blown flare. I tried not to focus on that during our day though, even though it's hard to push that kind of anxiety to the back of your head. 

We had so much fun! I swear these kind of days are my favorite. My son has become such a great swimmer and he was so proud to be able to go in the wave pool without a vest. Mind you, he had me, both of his sisters (my daughter and my step daughter) and me surrounding him. The girls are best buddies and shopped, giggled and cat called to the dancers while we ate snacks by the water falls. Only two minor hiccups, The boy child fell and scraped his leg up pretty good (and he takes this quite personally which means pouting commenced for about 20 minutes) and we lost one of the refillable cups (those suckers are like 13 bucks, thank you theme park for being so expensive!) but luckily we went back to the pizza shop and they had it.  All in all though it was a really great day and I think the girl child enjoyed her fantastic birthday. 

So yes, today I am in a flare. It is moderate, not the worst. But I can live with this because yesterday I felt great and I had a blast with my kiddos. This is something I, and my fellow Fibromyalgia suffering friends should keep in mind. But absolutely me because I know I tend to fall into a slump after dealing with this crap for long enough. When you have a good day you need to grab onto it and live to the fullest. Yes, let yourself take it easier during your flare times. But don't get caught in that cycle. LIVE during your good days. 

Friday, May 10, 2013

Be angry at the disease, not yourself.

I struggle with self blame. It's not because I am a masochist, mind you. The way I think is that if something negative is going on then you have a responsibility to fix it. You can't sit around and wait for someone else to do it for you. You are the master of your own destiny, and all of that stuff. Fixing it seems to be subjective, and downright stupid sometimes in the way I do so. You know, by blaming myself in a hundred different ways.

Blaming yourself for the effects of fibromyalgia is just stupid. But if you are like me, you do exactly that. You expect to be able to fix things, and when you try and it doesn't work you don't know what the hell to think. More exercise, eating right, taking your Topamax and Celexa on time every single day and sleeping enough. That should be enough, right? That's how you fix it, right?

I have mentioned pain with my disease, but that by far is NOT the worst symptom. The worst is the "fibro fog". When I am in a flare my memory is shot. I have to look in my phone for my phone number. I can't tell you my daughter's teachers names. I might have to think really hard to remember my house number, and I would be lying if I said I haven't walked outside to look.

You are so stupid. Are you sure you aren't mentally retarded? You can't let anyone know you struggle like this, they can't know how dumb you are. But you know, they probably already do know and you are too dense to see that.

Those are the thoughts that accompany a fibro fog. There is a huge amount of shame in it. HUGE. And it is anxiety provoking. I mean, what if this never gets better? It inevitably does, fibro fog doesn't last forever. But in those moments you wonder when you are going to start drooling and be placed in a home. I know this isn't a politically correct way to think, but I won't apologize for my true thoughts while dealing with this.

Last year I was in school. At the beginning of the semester I was rocking it. 100's on everything, great feedback from my professors, life was awesome. See, I was going back to school after an academic probation period where I had dropped classes during a flare but not in time to get an incomplete. So fine, I figured I had to get all A's and my GPA would turn out ok.

A few things happened that semester. I was laid off from my job. Without going into too much detail, this was an incredibly crushing, emotional thing to me. I took it very personal. I also developed another flare and had the worst fibro fog I have ever had. I know stress can cause a flare, but I can't blame the job. I believe a flare was starting right before I was unceremoniously dropped on my newly unemployed kiester.  

When it comes to studying I love it. Writing papers, I love it! History as a subject? Heck yes, I love history! So you would think that an exam in history with mostly short essay questions would be easy-peasy, correct? Wrong.

I studied for this exam like there was no tomorrow. Reading the text book, I could see the battles in my mind, imagined the treaties and peace talks like I was actually there. I daydreamed about the industrial revolution, politics of the 50's and 60's, I loved it all. So exam day came and I was set to take my exam at 11 am. I dropped my son off at school and was at my school by 9 am. I spent two hours going over notes in the library (and I may have jumped on Facebook once or twice for a few minutes) and it didn't feel right. I had flashcards from the study guide, and I realized I was stumped more often than not. Now, I knew this stuff! It was in the back of my head, kind of like when you see someone but can't quite recall their name. As soon as they say their name (or you flip over the flashcard, in my case) you thought "Oh how silly. How could I not remember that?"

I chalked all this up to nerves. I knew I would be ok, I knew this stuff. I grabbed a coffee, thinking the caffeine would help (maybe I am just tired, and yes I was exhausted even though I slept the night before very well). Walked into the testing center, registered and grabbed my exam from the proctor and sat down.

I couldn't remember a single thing. At first I panicked. I started going through the pages, thinking if I could remember some of it then the rest would come back to me. Nothing, omg nothing. So I closed the pages, turned it over and closed my eyes for a minute. I needed to relax, I knew this stuff but my brain was on overload. Breathe in, breathe out. You are ok. Getting as calm as I was going to get, I turned the test back over and nothing came to me. My mind was blank. There wasn't even a hint of a place to start to jog my memory.

I turned in the exam with my name on it and nothing answered. Then I went to my car to cry. Actually, I hate crying in front of anyone, so I drove to the Target parking lot, parked way away from the store and then I cried.

There is something wrong with you. You are not smart enough for these classes. Just face it, you will never graduate. You are too old to be in school anyways. Get your head out of the clouds and go work a job you hate, at least it's an income. I mean really, just stop trying. You aren't smart enough. 

Ok, I am trying not to cry as I write those thoughts out in italics. Because it's still very raw for me. I still have a hard time not believing those things. Please don't feel sorry for me though, I am learning something.

What I am learning is not to hate myself for these perceived deficiencies. Hate the disease. The disease that made me eventually get on academic suspension. The disease that made me unable to work as fast as the other people at my job (because I couldn't control my hands as well as they could). The disease that made me forget my phone number while calling to leave a message with my doctor to see if I needed to be seen in the office or just go up a dose in meds. This is what my doctor told me, after reaming me out for not coming in sooner. Be mad at the disease, not myself.  If I can be mad at myself for anything, it would be that. Not taking care of myself and just letting fibromyalgia impact me to the point where I could only write my name on a test.

Fibromayalgia is frightening, painful and yes I am mad as hell at it. But I have to adopt a different attitude. I don't want to be that person hopped up on drugs, sitting at home all day unable to function. That sounds like a nightmare to me, so no thank you. I need to work, I need to be out in the world, I need to be coherent and functional. I will never get that way if I don't let fibromyalgia teach me how to take care of myself. And that is what it boils down to, for all of us with this. You have to accept the limitations, but you are responsible for leading the best life you can with the least amount of limitations. And you will never, let me repeat never, lead that life by being angry at yourself. 

Here is what I believe. Even though I have been trying for over a decade to finish my degree (and I have not been nearly as successful as I would like to be) I will finish it one day. I will never finish it by punishing myself. I realize that now, it is so self defeating. I am far from a stupid person, in fact I would even say I am pretty intelligent. But I have to be smart enough to manage this disease if I want to be productive. So, time to be angry at the problem. Not the person.

Thursday, May 9, 2013

Fibro... what?

So. Normally I am a pretty good writer. Some of you may have read other things by me in the past. I thank you for all of the love and support with those projects. I can't even begin to explain how awesome that has been. 

I have taken a long time off from writing. So as I explain this it might be rambly (is that a word?) but hopefully it explains some things. 

I am hard on myself. Very hard. Like too damn hard. I need to say that so that maybe you understand where my head has been through out this whole process. And I am not saying this has been a good thing. It's really been quite devastating to me, in many ways.

This all started with my hands hurting and having no energy. Let me describe the hand pain. Imagine wearing gloves that are way too big, and way too tight. And inside of the gloves your hands ache like someone has beat you repeatedly across the hands with a hammer. Nothing helps this pain, but way too much (not overdose size, but not healthy either) ibuprofen does dull it. Then you get the tingles, all up and down your arms and in your hands. And then they get numb, you could stick a pin in them and probably not feel it. On top of that you feel exhausted, like you have the flu but no other symptoms besides the hand pain.

I love my doctor. She is the sweetest, nicest lady with a Romanian accent and she treats you like a mom would. I tell her about my pain, and this crushing exhaustion. She sends me for nerve conduction studies which show no definitive damage, therefore not carpal tunnel. She diagnosis peripheral neuropathy and gives me Topamax.

Topamax was AWESOME. Not only did it help with the pain, but it stopped my migraines cold. Now, I had no idea that I was having migraines. The best way I can describe my migraines is that light (even dim light) made me want to tear my eyeballs out, and made me feel like a giant was sitting on my head. And I got moody, oh man was I grouchy, when I got my migraines.

Fast forward about a year. The pain in the hands is back, but no numbness or tingling. Just that tight, horrid pain. I am also exhausted, more so then I have ever been. And now a new symptom, for me anyways. I hurt all over. You could not touch me on the shoulders or collar bones, although I never liked having my collar bones touched. It always felt icky and repulsive. But now, it hurt like hell. My arms hurt, my shoulders hurt, my back hurt, my butt hurt, my legs hurt... everything hurt.

How do I describe this pain? Well, it's like an all over toothache. It hurts in a way that makes you feel a little crazy. And like a cavity, if you touch it the pain intensifies.

Now, this is where I started to try to handle things myself. I was so stupid.

The self depreciation started. "You work at a desk all day long. You don't move around enough. No wonder you hurt! Get out there, exercise. Don't just sit at your desk, move around! You hurt because you have a lazy lifestyle! Fat ass!"

And so I took up jogging. I loved jogging. And I am not going to say it didn't help. Mentally I did feel better! But I couldn't breathe outside during my jogs. So, back to the doctor I went. Wheezing is not fun.

So I explain to my momma doctor that I was feeling a lot of pain and thought exercise would help. She starts to examine me and in certain places I am incredibly tender. I didn't think much of it, who knew about pressure points for fibro? Not me. I also am a person that doesn't show it when I get hurt, so I didn't say "When you palpated there it really hurt." and I walked off with my brand new inhaler, a prescription for a mild muscle relaxer, steroid script and thought life was grand. Asthma, eh ok.

And for a little while it was. I decided to stop trying to exercise outdoors (didn't want to cause an asthma attack) so I got yoga DVD's. I love those, I still use them. The stretching and crazy contortions while you fall over and laugh at yourself is the best exercise, ever. Downward dog? Hell yeah, baby.

It took a few months, but I flared again. The exhaustion was agonizing, overwhelming and depressing. I didn't have the energy to wash dishes or go to the store. The pain was insane at this point. Try going to a store and flipping through the clothing racks being agony. Having a bra on killed my shoulders, I would try not to wear one whenever I could get away with it. That wasn't often, considering I am large chested and going out in public with no bra would be highly embarrassing. And now another, new symptom. One that still carries on to this day. I was typing words but my hands weren't cooperating. I can spell like a champ, but I couldn't remember how to spell lots of words, and forget typing them out. In fact, my brain seemed to be in rebellion. "I know I remember this, come on brain!" and it would reply "No. Just, no. And don't even try to type it, I will mess you up."

Me: major sad face.

So, back to my doctor again. And I am not going to lie, I was embarrassed at this point. I thought "She is going to think I am nuts, or a drug seeker, or a hypochondriac... or..."

Now, before I went I talked to my mom about my symptoms. She mentioned fibromyalgia to me, said she Googled it and I fit all of the symptoms. I was like "Fibro what? Eh, maybe." but didn't think much of it. I happen to think Dr. Google is a mad scientist, or just a bad man.

So, again I am sitting in the doctors office. We talk about my symptoms and she says she wants to do an exam. Ok, fine. I remove my shirt and she is rubbing with a little bit of pressure collar bones. She finds a sore spot and I yelp, then feel embarrassed, sure I sounded like a big sissy. Again on the upper chest "Ow!" Behind my elbow, on my upper back, by my hips, and now I was beginning to get a little mad because it all hurt very much and I didn't understand what the hell she was doing.

Diagnosis, Fibromyalgia. Fibro what? She explained it to me, and I understood what she was saying. It just seemed so... no not me. I am not sick. I am healthy! Maybe a bit fat, I could use some exercise, you know when I got my energy back. She then explained the pressure points and that I had a response on every single one. I felt like a big baby, I don't show pain. I am not sick. This can't be right. A pinched nerve maybe? And you want to give me an anti-depressant? What the heck? I am not sad! I don't care if this is used to treat fibromyalgia, are people with fibro chronically sad and that's why they hurt? This makes no sense.

This blog will demonstrate my journey with fibromyalgia. My hands may not work as well as they used to and spell check may not help the stupid fibro fog I get pretty often. I will try my best to share it with you though, this disease I share with millions of others. More to come, hands are tired. :)

Take care everyone.