Fibromyalgia Awearness

All posts in the Fibromyalgia Awearness category

The Snow Globe Effect

Published April 13, 2017 by aspooniesmakeupbag

The next few post will be hard for me to speak about… I only just started to acknowledge the fact that I have mental issues … now I am wanting to add a public acknowledgement of this.

So lets talk about what it’s like to be a clinical depression suffer.

Clinical Depression? What is that? It’s when you suffer something so horrible, or maybe even just to difficult for you to deal with, and you get stuck in a deep depression … so deep that you can’t come out of it…. at least that’s how I would describe it.

My therapist would describe it with a ton of Ivy League words that I just can’t be bothered to try to spell today.

For the most part, when someone looks at me, it seems like everything is ok,  that’s just it , I’m not. I had something so profoundly horrible happen to me that I just don’t think I will ever recover from it. I was gang raped at in my early teens and that is all I will say about it … I can’t bring myself back to that day … and don’t know that even having therapy will help.

I pushed it deep inside but it was always just under the surface festering.

As the pressures of day-to-day life happened and  more bad things happened that festering turned into rot worse than death. I had a few suicide attempts, some time in a mental hospital, tons of drinking and getting high and finally 1 night as I was trying to end my life I met my husband. He has become that 1 constant in my life that makes things easier to deal with, and he is so patient with my messed up brain.

It wasn’t until my best friend took her own life that I #1 snapped completely and #2 understood finally the deep pain ending your life  causes those who love you most.

My brain finally had enough,  everything rushed to the surface all at once and I just couldn’t deal. I began sleeping as much as possible , could barely eat, cried almost all the time and nothing seemed to bring me joy.

I developed Fibromyalgia and that cause my depression to deepen even more. I started to detach from life and everyone around me.  It started to feel like everything I did , everything I experienced , everything that happened around me … was being done , experienced, happened to someone else… that I was just a passenger on someone else’s journey. ( My therapist has since explained that this is called dissociation and that this is something she can help me work on…. my though – ya right.)

As we work on me getting my mental health in order I began to call this dissociation the “Snow globe effect” . For me it feels like my whole life and everything (and everyone) in the world is in a giant snow globe and I am on the outside …. I can observe the world around me but I’m not able to feel the world around me.

As I push through this clinical depression I have good and bad days. I can be unhappy for no reason at all, I grow angry and seemingly innocent issues, and I just can’t deal with things the way I once have.

I still have hope that one day I can hold my head high and say this horrible thing happened but I am healed and my life is ok,  the truth is, I don’t know that I ever will be. I don’t wake up in the morning with the intent to be a Debbie Downer , or the intent to be stuck in a world of panic and anxiety …. it just is the way of my life …. my mind isn’t healthy and I keep working toward getting better … I don’t know I guess what I mean to say is …. I still have hope that one day I can find the opening to the snow globe and jump right inside with the rest of world, happy, healthy, and with no fear.

 

Well that’s it for now dolls… thanks for taking a peek inside this spoonie’s makeup bag …. until next time save a spoon for a bit of lip gloss.

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Finally I See the Darn Bread Crumbs

Published February 24, 2016 by aspooniesmakeupbag

 

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It’s been so long since my last blog post … do I even remember how to blog anymore?

There was so much I wanted to accomplish with this blog and yet I seemed to have just drifted away from it.

In the time I was away I lost my medical insurance, chopped my hair off, gained a God baby, lost 50 pounds, moved to Orlando permanently, found a church I adore, was enrolled in new medical insurance (where I was able to get better coverage with less out of pocket costs), found out my depression was worse than I thought it was, and quit smoking.

I have since been diagnosed with Clinical Depression. The doctor put me on new medication, Paxil to be exact.

The first few weeks of being on Paxil were terrible. All I did the whole time was sleep. I truly did not think I would ever get any of my life back. One day, seemingly out of no where, I wasn’t effected as bad anymore. The medication still makes me sleepy, and more often than not I end up needing a nap to help, but I am at least able to try a cope with the day. I still feel depressed and I still have panic attacks; I just don’t have as many attacks and I am able to talk again.

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At the height of my walk with this new development there was a point where I didn’t talk. It’s not that I didn’t want to, I just couldn’t. My sadness was so bad, panic so strong, and thoughts so dark that I couldn’t make words form. In part this was because my mental pain and panic was too deep that there wasn’t a word for it and in part it was that my thoughts were so dark I was afraid I would be Baker Acted. I felt if I just kept it deep inside I would somehow get through this and no one needed to know, except the real live truth was….. EVERYONE knew. I would here “Hey are you ok?” at least 5 times a day, to which I would respond with my cookie cutter go to responses. … “yeah, I’m just tired” …. “yeah, I’m just in a lot of pain” …. “yeah, I just feel nauseous  “.

Most of the time that was where the conversation ended but the dialogue in my head kept on …. “why do you even care” …. “what are you blind? no I’m not” …. “what does it matter I’m a waste of space anyway?” ….. “No you dumb ass , I’m not now stop asking stupid questions” …  “No, I ‘m pissed that I woke up today, is it too much to ask to die in my sleep?” … “Hell no, but you can help me if you could end my life for me” and so on and so forth. There was also the internal battle with myself that went something like …”you are so pathetic, you should throw yourself off the bridge and end everyone else’s misery”.

I can’t say that I feel any differently most days, but I’m able to talk again. I get up and take a shower as often as my fibromyalgia will allow me to. I brush my teeth everyday again. I smile more than I did, and on most days those smiles are genuine.  I still feel like I’m an outsider in my life, and there are times I even feel like life is a dream or even that I am observing my life from the outside and that it’s not really me living it, and I can’t say why …. that’s just how it is.   I am still incredibly sad and feel so lost but at least I can see it now, and at times I can even talk it through with my husband and try to deal with it.

I still feel hopeless, but I also have hope … the hope that one day I will be able to crawl out of this dark hole and feel happy again…. hope that I may even have a day or two with no pain, more energy, less isolation.

The sad thing is many spoonies deal with depression on some level and never receive help they need to deal with it.  Sometimes just simply telling someone that has an invisible illness that you are here for them or that you want to understand how they feel is enough to give them some hope, other times it may take for you to say that there seems to be a change in their mood. Sometimes we don’t even realize we have changed, we only know that we are sad, that we feel dark and it takes for someone to tell us to even begin to understand that we are.  That’s what happened with me I guess. I went to this deep, dark, scary place and I needed someone to help me find my way back. I may not be out of the dark woods yet, but at least I can finally see the darn bread crumbs.

Well thanks for taking the time to peek in on this spoonie’s makeup bag and remember spoonie darlings …. try and Untitled

 

 

 

 

 

 

Grey Skies and Rainy Times

Published August 5, 2015 by aspooniesmakeupbag

Today I find myself feeling fustrated. It’s been a little over 2 years that I have relapsed… 2 years.

I really can’t even remember what it was like to have my own money, to be able to just hop in the car and head out for a little retail theropy.

I know that sound shallow, really I am not meaning to be. It’s just that… well I guess I just have always worked, have always had a paycheck. I never needed to depend on anyone for anything and now I can’t even buy a pack of gum on my own…. that’s true frustration.

I’ve been a fibromyalgia suffer for the better part of 6 years and in the beginning I was able to work but now there arent very many good day and I think that is where my depression starts to kick in. When you are stuck in bed for as long as I have been you loose you self worth. You forget that you are valid. When you have to depend on anyone else you start to feel useless.

My husband does a damn good job at making sure I never need for anything, it would just be nice to one day be able to say I purchased this, or hey babe let ME take you on a date.

There use to be a time when I could look into my closet and say I spent way too much on clothes and ask myself why in earth I had so many purple tops.

Now when I look into my closet all I find is a reminder that I am not a productive member of society anymore. I also am reminded that my fashion sense has gone right out the window.

You see, when you live the life of a spoonie you for go trendy for comfort. I use to own 20 pairs of jeans, Now I own nothing but sweat pants and pj bottoms. I use to own so many cute tops and sweaters but now I own tank tops and cardigans.

Someone with fibromyalgia has to be careful of what they wear. We have hyper sensitive areas on our bodies that when touched or constricted sends our bodies into blinding pain…. so those skinny jeans we use to love are now off limits. Hell, most of the time I wear just a tank top and pj shorts just to try and easy my discomfort.

So here I am fustrated because I want to go shopping, and I am (just a little bit…if my energy allows me to) but it just isn’t the same when you have to defer the bill to someone else to pay. Don’t get me wrong, I am super excited to be getting a new eyeshadow pallet I am dying for, it’s just that when I would snag the hot new makeup item when I was making my own money there was this sense of accomplishment, now there is excitement but it’s no longer MY accomplishment.

I know that as a married couple my husband and I accomplish life together but I watch as he works so much harder than he should have to just to be able to make sure I am able to have some play money. That is so heart aching for me.

During the holidays and his birthday it’s nice that I have money to gift him things and he is truly grateful for the gifts he recieves, however isn’t it really just him buying his own present? After all it is his paycheck that affords me the ability to get him a gift in the first place.

Being a spoonie that is faced with being confined to your home, you find that you get fustrated about many thing, not just financial issues.

Take for instance not being able take a trip out for the day spontaneously. Living with fibromyalgia means having to plan outings with as much advanced notice as possible.

I have to make sure I rest so that I don’t over do myself, I have to make sure I don’t forget to take all my medication on time so as to avoid weakening myself to pain beyond what my brain has deemed will be my daily allotted amount. I have to make sure that the only pair of jeans I own (why own more than 1 pair if I am really never leaving the house anyway) isn’t going to be pressing in on any of my tender points. I have to make sure I am careful of what I eat for the week to ensure I am not nauseous when I am out of the house.

I am fustrated also because I have been so weak and in so much pain this week and it feels as if I will never have a good day again, that I will always be this weak and in this much pain but than I remmeber that only 17 months ago this was me…

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Just 17 months ago I was so weak that I couldn’t even sit up. There was so much pain that I couldn’t even breath without wanting to scream. Just a little over a year and a half ago I couldn’t take a bath on my own, I couldn’t change my clothes on my own… and fast forward to the present and here I am blogging. Here I am  upright (granted it’s not for long periods of time, but it’s a start) and able to shower on my own (normally using a shower chair). I am even able to wear makeup on more than just a few days or less.

Granted, most of the days that I am wearing makeup I am still in a tanktop and pj bottems, and instead of applying my makeup at my vanity I almost always have to apply it from bed, I am STILL able to wear makeup… an almost on the daily.

I guess what started out as a pitty party today has taught me that my life should be a celebration of those small steps I keep talking about.

To all my wonderful spoonies out there , those little steps might seem like a drop in the bucket, and we may not be able to work and make a dollar, but look at us now. Those little steps are little reminders that it wont always be grey skies and rainy times. Just because you are house bound and may be fighting the government for assistance (because hey you look healthy or your symptoms aren’t life threatening to the powers that be) it’s ok to accept help from those who love you most.

To all you beautiful dishes out there, remember even when we  forget to tell you how amazing your support has been, we always feel it. 

Well, that’s all for now… my body is screaming for me to go take a rest,

Until next time hang in there spoonie darlings, it won’t always be fustrating.

Thanks for taking the time to peek in on this spoonie’s makeup bag and don’t forget to save a spoon for a bit of lip gloss.

And the Dish Ran Away With the Spoon

Published August 3, 2015 by aspooniesmakeupbag

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* Previously published on my tumbler account. *

This disease is so heart breaking, to be ill for the rest of my life makes me so angry, so hopeless.

Try to imagine being in pain everyday… having no energy… having to choose wisely what you do, knowing that whatever you chose will define the course of the rest of  your day.

I am trapped in this body, no matter how hard I fight to remain normal, ordinary mundane tasks will always be huge feats for me.

Imagine for just one moment what it is like to wakeup, even after a full nights sleep, and not even have the energy to fix a morning meal, to have to  pray that today will be the day that you brush your teeth and still have the energy to brush your hair, shower, and paint your face.

Put yourself in my footsteps where every step taken there is pain, where you feel humiliation because there are days you can not bath yourself, where you die a little inside as your spouse baths you, where something as simple as shampooing your hair can leave you in pain and fatigued, where knowing the person you ounce use to be  is gone forever.

This is my world now. A world where a simple trip food shopping could leave you bed ridden for the week.

I havent given myself a pedicure in a month, I also have only left my bed in a socially interactive situation 1 time in the past 6 months and I have been sidelined ever since that day. It was well worth it but still crippling.

Imagine having so many people around who called and texted and hung out with you, and now when you need their support most they have turned away from you.. after all it can be annoying to hear someone say they can’t hang out because they are having a bad day.

Now imagine pain… pain on a scale where a level 5 can give you peace. Imagine working your whole life and suddenly not being able to.

Imagine  humbling yourself to the governmental system to ask for assistance… to ask for the money they took from your pay  (everyday since you first held a job) back and  having the system tell you… you are not sick enough.

Congratulations you now know what it means to be spoonie strong.

Some days it is easier to handle and some days your hope is crushed.

You are left with a choice… roll over and give up or stand your ground and fight.

I refuse to give up, will you refuse to understand?

We are not our illnesses but sometimes we need your understanding. Every spoonie needs it’s dish….. Hey diddle diddle…..

Well thats all for now. Thanks for peeking into this spoonie’s makeup bag. To all my fellow spoonie darlings stay strong and spoonie on and remember always reserve a spoon for lip gloss.

Storms and Rainbows

Published July 21, 2015 by aspooniesmakeupbag

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Today I’m not feeling very well. I have not been feeling very well for the last couple of days. Sunday was a very dear family member’s baby’s christening and even though I had pain I pushed through to go and spend time with the family.

Even though my body was screaming for me to stay in bed and my anxiety level was pleading with me not to leave the house, I still push through it and was able to stay active and alert for 8 hours. I did have a couple of panic attacks, which is to be expected since sometimes being stuck in either your bed or in your home because of the pain and the fatigue associated with illnesses like fibromyalgia can cause  a kind of Agoraphobic type anxiety.

I have to give an immense amount of credit to my husband because on the very first panic attack, which was threatening to consume all of what was left of my sanity, he was able to get me back into the present and without having him there I don’t think I would have been able to get past that initial attack. It can be so hard sometimes because I get so much anxiety for just simple things… having to leave the house to just go buy a gallon of milk….having to leave the house to just go to the gas station , these are everyday errands it should be simple, but they aren’t for me.

They are  every day battles because since I’ve been sick for as long as I have been, (going well over 6 years) what I found is when I have relapses that are as long as this past one has been… this past month marks 2 full years… I’ve not only developed social anxiety, but I’ve also developed environmental anxiety.

I spent a good maybe 45 minutes to an hour locked in the guest bathroom putting on and taking off my makeup because makeup is my safety net…. sort of like a child who has a nightmare will have a special teddy bear, makeup is my special teddy bear. Make up for me is normality, something that keeps me rooted to the person I was before I got sick, it’s also something to give me repetition that allows me to focus my mind on the task that I’m doing rather than the anxiety that’s creeping into my throat.

So here I was 45 minutes into everybody showing up at my family members house and me not wanting to leave the bathroom. My husband comes to check on me and I had a meltdown. It’s not so much that he became my comfort (even though he truly is) he just has some magical way of pulling me back from my anxiety attacks. He knows how to make jokes or comments that make me feel so much better than what that panic is. In this case, he says to me don’t cry you know what happens when you cry you’ll ruin or your mascara, and we all know you hate waterproof mascar so it will just ruin this look.

This one ridiculous little statement cause me to laugh so much that my eyes watered and the glue lifted from my lashes. So I say I’ll be out in a few minutes I slapped more glue back onto my lashes fixed my hair put away all of my makeup and joined the living. My second panic attack was a smaller one but it  was still very fear controlling, and it was over something so simple, children playing in a pool  laughing and having fun  (while very warm and amazing) and  one child let out a screech that , just for some reason, triggered my anxiety and cause me to have a panic attack.

Before I say how I got this panic attack under order let me first say I do not condone giving medication that was prescribed to you to anybody else. One of the family members, the one that I talked about in my last post, also suffers fibromyalgia on top of the other mitigating Illnesses and she suffers anxiety attacks as well, she gave me an anxiety medication to help me just calm down for the rest of our stay at the party. Again, I do stress that one should never share medication, however in this particular case since we do suffer from almost identical secondary symptoms associated with our fibromyalgia and we’re on a lot of the same medication we did know what the interaction would be with the medication that I am on, so I felt that it was safe to take this particular medication.

This allows me to be able to stay in the present and stay engaged in conversation and just simply enjoy the fact that I was away from my home and out in the sun for 8 full hours well almost a full 8 hours it was maybe more  around seven and a half hour when  my pain was a little bit more than I can take and swelling that can be associated with fibromyalgia in and around certain trigger points was starting to swell beyond comfortable levels so I had to go home at that point.

I left that party with a smile on my face because it’s the first time since my trip back home to Philadelphia, that I was able to leave my home for more than an hour and for me that’s amazing, for me that’s such a gift.

So for the last 2 days,  I have been on bed rest, something that I knew would probably happen. I’m not saying that every time someone with an invisible illness that is energy and pain driven leaves the house they end up with loads of days stuck in bed, however in this particular case I’m still dealing with a relapse and so pacing myself is the only way to keep me from being so sick all the time.

For me these past two days stuck in bed has been so worth it because Sunday was so amazing and that is in spite of my panic attacks. Sunday was so amazing and so ego boosting that I made a girl date with the family member whose house we were at to just go do a small mall crawl for Thursday. Do I think I may be a bit uncomfortable, a bit anxious?or possibly even bedridden for a few days after? Yes… 100% yes. Now ask me would it be worth it. When you get sick with any of the spoonie family illnesses sometimes people don’t understand what you’re going through and you tend to lose a lot of friendships and a lot of connections. Not all of the connections and friendships are lost due to another individual; Sometimes because you get so anxiety riddled you tend to just distance yourself from everybody.

The one constant in my battle with this illness has always been the family member who I’m going to hang out with on Thursday.

So if you ask me if it’s worth it. If you ask me why I would deliberately go do something I know will cause me more than likely to be sick for days, that’s the answer….. She’s never left my side. She’s always tried to encourage me to come hang out just to get me out of my head space and while I do appreciate other human contacts, I don’t necessarily consider them friends.  For me they are more acquaintances because while everyone else will send me a message via Facebook or through word of mouth from someone else no one really ever takes the time just to see how I’m doing there’s never a knock at the door saying “hey just wanted to check in on you” or a phone call to simply say “hi sweetie I was just checking to see if you’re OK”. However this one family member of my husband who has grown to become a family member of mine has always been there even if it is just through Facebook, has always been there just to say “hey sweetie how do you feel today?” ” Hey sweetie I was hoping to see your face this weekend.”  While not all the time that we can’t go to see her or that part of the family has it been associated with my illness (there are certain times where either the car has fallen apart or my husband has been working on the weekends) she’s always been understanding and truly forgiving and truly patient with what I go through with my journey with my being sick.

Even though I am stuck in bed I still play with my makeup it’s just means that I’m in a full face of makeup in my hair’s done while I’m in pjs (don’t give me that face, there is nothing in the rule book that says you can’t wear makeup in pjs). I do this because makeup is my happy place, it’s what keeps me holding onto a person I once was. I know I’ll never be the person I was before I got sick but what this this illness can not take from me is my love for makeup, my love for a good book, my love for amazing music or for a cheesy B-roll Syfy or zombie flick , or the company of people who truly care about me.

Well that’s all for now, thank you so much for taking a peek inside this spoonie’s make up bag. To all my fellow spoonies, when the storm hits batten down the hatches grab that one activity that makes you smile and get to work. This illness only beats us if we allow to take everything from us. Hang on to the love ones that support you and love you immensely, grab that book that you  just can’t wait to find out what happens in chapter 3, pop in your ear buds and play the music you love the most as loud as you can, pop in DVD of killer Klowns from outer space and cuddle up with your boo your dog or just a very fluffy pillow and laugh at how funny movies from the eighties and nineties were, and never forget at the end of every storm there’s always an incredibly wonderful rainbow. And to all the non spoonies out there thank you from 1 spoonie to you, a dish ( which is what we call the people who support us the most)  for being someone’s life line. And until next time remember always reserve a spoon for a little bit of lip gloss.

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