Fibromyalgia Life Hacks and Some Other Shit...

So I noticed recently, as I am learning about fibro and what, exactly, my biggest problems are, and tackling them.  Locate weakness, destroy it with a good plan.  I have a couple life hacks I can share, if they help, awesome..  If not well I tried and I hope you can find something that works for you.  This can also go for anyone who suffers with memory and brain shit.  I can easily spend an hour pacing around, with nothing to do really, but everything to do and I can only get started if I can find the "fill in the blank"...  

AND

NOW

What the fuck am I looking for?  Why am I standing up?  I should do this, for this I need that..  you get the picture.  I joke here because I have to find this funny, if I don't then it will be sad, and fuck sad.  My kids don't think a show about scaring me and knocking me over would be funny.  I think it would be hilarious..  I suppose you have to be in the shit to understand the need for that strange, dark humor.  It's like cops joking around, except I am not a dick.  I just fall over.  Like a fainting goat.  Hilarious!  What, hurt me?  But I already hurt, all the time...  may as well have a laugh.

I digress a lot.  Life hacks..  101, and I encourage anyone who suffers from fibro and has their own hack to please chime in..  would love some more myself.

All the shit you use more than once, every day.  Keep it near your person, in the same place at all times.  See, at my house I have what my men all refer to as my "houses" this is just a name for all the shit that I need or might need for that day.  Why bother putting all the shit away and having a trophy house when every day is a battle just to survive it with a smile and stay out of your bed until it is bed time?  If you do not have the ability to nest..  then you must put your shit in a basket.  I find, if there is something that I spend time looking for, I keep it in my nest from now on.  That is the rule.  Once you get a system in place...  that is the rule, and do not deviate it makes life a lot easier when you aren't running, limping, crawling circles looking for that thing you already forgot about.

Be honest with yourself.  It is hard to really look at yourself (and I don't mean in the mirror that is a whole other beast) but really look.  Admit your shortcomings forced on you by this disease.  Or just your shortcomings for whatever reason.  Everyone has something they can work on.  It's your choice.  Stay stuck where you are, or set some goals and see what happens.  I pick setting goals because once you do that..  for example a goal for me was going to a show with my kid...  NOT something I would do now, except I did and I had ear plugs and didn't need them..  I was dressed comfortably...  and I had a blast.  Something I thought I would never enjoy again and not only did I "tolerate" it that well, I had a fucking blast.  You don't know what you are still capable of unless you put yourself out there.  Baby steps, with this process comes patience with my system for self enrichment.

In the shower...  I like to put a 5 gallon bucket to sit on, those days that I really need a shower, but I know it is going to kick my ass?  Yeah, sit on a towel draped over a tall skinny 5 gallon bucket.  If you get one just the right size you can spin around..  not fast, this is no game now...  but to get to whatever is stored behind you.  Instant sit down shower.

I hope that you don't suffer every day.  I send all the warm fuzzies I can to everyone who is fighting their battle.  Not everyone has the same battle, for those that share mine, here are some life tips.

Oh yeah, don't touch snow or ice with your bare hands, there is something about fibro and the hands..  Can't feel mine most of the time, unless I touch something cold then FUCK EVERYTHING...  warm is good. 

If you click on this link it will take you to a wonderful treatment for your hands, I highly recommend this to all fibro patients.  Where cold is FUCK YOU...  warm is I LOVE EVERYTHING...  so there is that.

Good luck in your endeavors..  Let me know how these help you.

I think I was one of my pappaw's favorites.  He is my grandpa on my dads side.  He is one of my main spirit guides.  I talk to him more than any of the others.  "Pray" to him if you wish to call it that.  Talking to the light.  He used to rub my head and call me pappoosie and said that I was different from all the other grandkids (there were a lot) because I wasn't born like a normal baby, but that I was born in the trees with the monkeys.  He nailed it on the "not like everyone else part" and I think that is why I feel so close to him, to this day.  he passed in the late 90's.  I was stationed with my husband and couldn't attend the funeral.  I was already learning that grieving on my own without any "help" from "well-meaning" relatives was the best choice. 

 

 Today, it is so bad with my family, and I know that pappaw hates it that none of them speak to me.  I may as well be Amish.  I went to Mammaws funeral last fall.  I swear, if you have seen any shows or movies where someone is Amish and they are shunned.  Like that, only they didn't turn around with their backs to me, because I didn't try to talk to them either.  

 

I don't really understand why they all hate me so much.  I love them.  I stayed away during visiting hours for mammaw, not because I didn't want to see her, but because I know how they all feel and I didn't want to upset them further with my presence.  It's okay for them to feel about me however they want.  I found new strength in fighting with fibromyalgia every day for the past six years.  It has enabled me to slowly learn what is truly important in life.  Having my extended family love me and help me would be pretty great, but since they don't, it is their loss.  Not mine.  However, I still love them always and respect their decision to hate me.

 

 

 

For the record, for the most part it is because I use cannabis as my medication for my Fibro.  I refuse to get addicted to dangerous and addictive opiates..  and they hate me for that.   So silly, it is why I let them feel however they want, because I am LIVING life.  On here is the most time I spend on them anymore, typing out loud about the giant family that hates me because I smoke an herb instead of taking dangerous meds from the Doc.  That is why it's okay.  I fight for my right to medicate safely and if they think I am a bad person because of that, well I love them anyway.

Inner strength and self awareness are not hard, but they are essential to a happy life.  I wasn't strong inside, no matter what I went through I was weak.  Now I am strong.  Some people might think that I am one of those positive people that thinks rainbows shoot out of my ass.  I assure I am not that.  I like to think positive, if I can, I like to live positive, if I can.  I like to smile at someone, or ask a crying lady randomly if she is okay.  Yeah, maybe I am one of "those people" but shit goes down.

I can't leave my house much, I have a very ugly mouth and it is embarrassing.  I had the money once to get them fixed and that was the plan, then we found "the car" and I decided that I already gave him 17 years, a year or so more, before I can go into the world again isn't so bad.  I was so wrong.

 

Mothers of the universe.  Your child should NOT have their dream car first.  Granted, my son has been working hard to pay for said car, however, he has now wrecked it already twice, no damage either time, ran off the road.  We are taking the car for a while.  You are just asking for it if you don't make your kid drive a beater as his first car.  Stupid.  I know better than to put a kid in a zippy car.  I have known better from the beginning.  No one wanted to listen.  they will now.

Which bring me to another point.  Mothers of teenage sons who give you no respect.  Don't lie down and let them run roughshod over you.  You know better.  It is a thankless fucking job to be a mother sometimes.  Other times things go down that make you want to flip a car, or burn the fucking house down...  like you are trying to reason with an angsty teenage boy and your husband walks in and says you are being too hard on the little shit?  Or when in the middle of a discussion, hubby agrees with the child, right there in front of the child..  without knowing a thing about what happened during the past two hours since they got home and since my hubby walks in.

 

 

He didn't want me to cry all the time, so I stopped.  I stopped a lot of things because it bothered everyone.  Now, I have the power to have changed.  It took a while, but none of them can deny that I am working on myself and if I am doing it, why shouldn't they?

Your own strength of purpose is the only thing that will carry you through the nightmare that is the teenage years.  I have to remind myself that I am the mother, and demand the respect that I deserve, because if you don't make them do it at home, they surely are going to be ass holes wherever they go.

 

 

As an activist, when I "came out of the grow room" so to speak, and started speaking out about the positive things about cannabis use.  I started going to rallies whenever I could, there is me, with the sign, trying not to look like a hippy at the capitol building.  Failing at that....  I was still there.  I learned important lessons that day about my condition and Senate hearings, when the "Elk Lodge anti" took the stand and literally spouted rhetoric and bullshit, while the kids that were right there, the ones that cannot stop having seizures?  Those kids, one of which had to be airlifted from the building because she couldn't breath as a side effect of the medication she needed to stop having the seizures.  I also have a disease for the rest of my life that starts with constant crippling pain and there are about a hundred other things that have gone all to shit.

As much as I want to sell my soul to the opiate king.  Go away like I did 14 years ago..  do the heroin (opiates from doctor) same thing...  but I refuse to do that.  I spent three years laying in a bed a huge portion of that trying to stop my heart from beating because I didn't want to suffer anymore.  We moved houses and I decided I wanted to live.  I want some semblance of a life back.  I have medicated with cannabis for pain for the entire time, but I started research, and asking around and found the best ways to medicate.  I am not a pot head.  I cannot function without it..  not unlike the lady in this video,  I can't think unless I medicate.  My pain owns me.  I walk with it now, instead of trying to push through it, I walk with it.  Because of cannabis.  Because I can stay calm and sooth my burning nerve endings with a vaporizor pen.

Now Reader, this is not intended for you.  I am not giving you the finger.  However, I know that people talk about me everywhere I go.  I know that in this rural ass back woods shit hole people think I am a total ass hole.  Now, my presentation isn't so good at the moment as I have bad teeth, braces when I was a kid + soft european teeth = me looking like a meth addict in my mouth.  It is horrifyingly embarrassing and I am at the point that I hate leaving the house.  However, I am positive, even about this, that when the time is right I will get my mouth fixed.  I almost had it, then my kid found his dream car, and he deserved something amazing, so we got the car.  I waited.  They got worse.  I mention this, Reader, because as you can see, even though I have no filter and rant incessantly I am not stupid.  I am far from stupid and I am certainly not on meth.  That shit is the devil and I want nothing to do with it.

When you find out, though, what those thundercunts are saying behind your back..  me anyway, no matter how hard I try I have this niggle for a moment where I wanna throttle their stupid asses.  But then I remind myself that they are the ones spending their time on me when they should be looking at my kid.  You know.  Ian, the one with a stack of letters of interest from nearly every college in the country, or my other kid?  The one that wants nothing more than to work hard and fix shit.  What are their kids doing?  Well...  getting kicked out of scouts for taking a literal weapon and alcohol to a campout.  Yeah, that is the truth, this piece of shit pothead has raised better kids than you..  what do you have to say to that?

Now, I still love that lady for her right to exist as a human and say whatever the hell she wants about me.  She is no longer in charge of my son at all..  Eagle Scout is strange and this panel of ladies has to say yes and I was worried that they would hold what they thought about me over my son's head..  I would not deal well with that..  like at all....  for obvious reasons.  Say what you will about me..  Say something about my child and we are going to have words.  Just words.  I am a peacemaker..  but there would be words, and some of them would be cuss words.  I am nothing if not honest about myself.

Teenagers, and not the stuff you would expect and some other things I'm sure

So, mothers say they worry about that phone call, that one that reports their child is hurt.  It happened with my 18 year old today.  He got hit in the face with a pitchfork.  A whole pitchfork to the face.  Luckily the damage isn't too bad and he is already on his way home. 

I am watching a movie called Jesus Camp.  The boys would not let me watch that because they said that I would get angry.  I want to say they were wrong.  If you are reading this and you are interested in what some of the religious right is doing to their kids, you should watch it.  That is all I will say.  I am NOT mad..  I am totally lying, this is a horrible movie and I am not mad, but my heart hurts. 

When we were leaving to get Shelby from the hostpital it hit me that he didn't need us there.  He is 18.  Responsible for signing the paperwork.  Another small tear in my chest.  I guess this feeling is getting better, but when you have been a mom it is hard to turn that off.  I guess it isn't about turning it off, but it is about finding your peace in this new place.  Turns out, everything is okay.  He handled the stuff with no need for us, except to pick him up from the hospital as he did not drive himself there.  Otherwise he is fine, got stitches all alone, oh shit that hurts.  What do I do now that he doesn't need me anymore?  He didn't need me to hold his hand.  I need to realize this is a positive thing.  I did my job.  I did not break the baby as well as giving him a shit ton of advice on how to not break himself.  Now it is time for him not to break himself.  I am here, in case he does.  Forever.

Matter of fact, if you as a human; mother or not, don't work on yourself, don't take the oppotunity to find your peace in the new places in which you find yourself you are fucked.  That is when life gets too hard.  Things easily become too much for me because of the Fibro..  But I learned that about myself and try to keep myself out of situation that I know will become unbearable to me.  It is all about weighing the good off the bad.

When one of the boys asks me to do something, for example I went to a show the other night with my 18 year old, and another a few nights before that with both of them and before I could answer whether or not I would go I had to figure in the fibro heavily.  I have to weight the good against the bad.  It has taught me a level of control over my life that I never had, even before I was sick.  I have learned that I need to control my own conditions.  Part of living with this.  Also part of living the best life.  Those little voices are no different than me sitting down at the club because my legs were DONE.  The warning signs are there, the instructions are there, all we have to do is listen.

If you aren't happy, you can change that.  For me, it is learning how to live again as the person this disease has turned me into.  For someone else it might mean changing jobs, or whatever pattern or need you find you have in your life, you can fix it.  

From someone who has had a large portion of my life taken away from me I can say this.  Live your motherfucking best life.  Live it.  Do it.  I thought there would be time.  I thought I had plenty of time to see all the cool places my husband and I wanted to see together.  Yes, we can still go to some of them..  most of those things are forever out of my reach.  I used to be a dancer, then a spun records, then I did both of those things and made some really cool shit.

I can't do any of those things anymore.  I can't feel my hands and I can't dance, my body just flops to the ground, gives out.  Even on the "good" days.  I put that in quotes because even my hurty, shitty, skin burning, turning inside out, I can't remember why I am on the toilet...  days, I still keep a smile on my face (I try) I don't let it make me cry.  I deal with it.  It has made me a hard ass, but it has also made me a much nicer person.  Who woulda thought that?  Interesting...

Typing out Loud, Random chaos and entertainment

I have a nervous condition, which among many other things, means that I have no verbal filter.  This has been the source of much embarrassment with my husband and my teenage boys.  They constantly tell me to be quite and for a while I got sort of yelled at because I truly say whatever the hell pops into my head.

I met a very nice lady named Susan on Facebook and because I have been ranting so much on there, she encouraged me to blog.  So here it is, My 6^th attempt at maintaining and blog and keeping a couple of people interested in reading and responding to what I say.

I find myself feeling most like writing when it feels organic, like whatever strange shit flew into my head today, I am going to write about it.  Because I am alone most of the time, the dog can only take so much…  I need to type out loud and get it all out.

I have been super nuts lately because my son turned 18, got his license, and got a job within the space of a month.  I went from having my two babies still here with me to suddenly having a man, that has to sign up for “selective service” and I am supposed to be okay with that and I am not.  Yeah, I know that people don’t freak out, because they don’t think that anything will happen that would cause the President to reinstate the draft, except..  okay.. I don’t want to be negative here, just realistic; we didn’t expect planes to attack some buildings either.  

I could not be more proud of my man.  My son Shelby.  He is so independent and smart and he can accomplish anything he sets his mind to.  He is a lot like me, really random and chaotic and things like math and well math confuse us.  He is way funnier than I will ever be and he got to dress in a Yogi Bear costume today at his job, which he is working at for 12 hours, so he can get a bigger check.

I was an Army wife for a long time.  I was a million miles from anyone who even knew my name, let alone knew me enough to be my friend.  It was the hardest thing I have ever done to raise two small children while I had a husband in the army.  Mine didn’t go to war, I don’t know that panic, I don’t think I would live through it, to be honest.  I digress, (a lot) but that didn’t mean that he was home.  I spent the first years of Shelby’s and Ian’s life alone with two babies and no clue what the hell I was doing.

Shelby went through a lot with me, including a pregnancy.  To this day he is so in tune with how I am feeling that he tunes into my channel when I cry at a movie.  I did the best that I could, during that time he bonded with me in a way I wouldn’t have expected; it is almost like he can read my mind and that is because when his little brain was developing he could tell that I struggled, he could tell that I was sad and it has made him protective of me and it comes from a place of such love.  We struggled, but we made it. 

My job has been mom for a really long time.  It is also sick person now, but that is for later.  Mom.  I was happy to give myself to my kids, I even failed miserably at home schooling them..  At least I fucking tried right?

So, welcome to my brain.  It is chaos in here and it is only going to get worse.  Buckle up, dive in and welcome to Typing out loud.