Understanding

All posts in the Understanding category

A Million Elephants On My Back

Published March 29, 2017 by aspooniesmakeupbag

It’s been a while. I’m trying to work through things but sometimes one’s pain (both mental and physical) does get in the way.

With that being said,  I’d like to first start this post by saying I am sorry for being away so long. I am sorry for making promises to put out better content and to add more “beauty” related content for you and than falling short of that promise.

Believe me when I say that the idea that I write about a topic that someone takes the time to read  (and occasionally comment on) it is such a humbling thing; a thing that I never take for granted and do very much appreciate you , the reader… 

And so it is time to address, what to me, feels like a million elephants on my back (yes I know the saying is  monkeys but lets face it …. with what I need to say …. to me , the weight is best related to elephants. )

I have blogged about being sad , my ever growing list of medications,  and the loneliness that one with fibromyalgia goes through. What I haven’t spoken about openly is my struggle with clinical depression, my new journey with bipolar-ism, and how it feels to be trapped on the outside of a snow globe with the whole world on the inside. 

I had many issues (who doesn’t right?)

I had a bad thing happen to me , which changed me forever… the strain of this cause me to have PTSD , anxiety disorder and panic disorder… this didn’t happen over night, these symptoms piled on top of each other and when my best friend committed suicide ( 4 years ago) the strain of that cause my brain to snap further … enter the wonderful world of living with clinical depression and bipolar-ism.

this post is already longer than I had intended – this was intended to be just a catch up post – in my next few posts I’ll go into more detail of what life is like with each of these symptoms….

Thanks for peeking in on this spoonie’s makeup bag and until next time, remember …. always save a spoon for a bit of lip gloss.

Advertisements

I’ve Had Up’s and Down’s ; But …

Published November 14, 2016 by aspooniesmakeupbag

Why hello there doll!!! Sorry I’ve been away so long. It’s been one hell after another since we last talked.

I’ve been to see my rheumaatologist who took me off my muscle relaxers because he says he feels as though they are pointless as they do not help with fibromyalgia.

I spent almost 3 weeks in such pain it literally took my breath from me at times. I couldn’t eat, couldn’t sleep, and most importantly I was unable to even interact with my family. I spent most of my time crying, lying on the floor, or chain smoking because of the pain.

Around about the last part of the 2nd week I had enough of doing it the doctors way and , after talking with my husband about it, decided to start taking my muscle relaxers again.

Needless to say, I am feeling so much better now. ( about 2 days after starting my muscle relaxers again.)

The thing I have learned through this walk as a spoonie is this … doctor’s do not always know what is the best thing for you. Not every fibro patient will respond to the same course of treatment and when something is working for you it’s important to stand your ground and say I’m sticking with it.

I so wish I would have stood my ground this past month.

I have been taken off my anxiety meds and that has kept me house bound more than I would like and once again I have put myself back on my anxiety meds and will have a long talk with my shrink about this.

I’ve had ups and downs with my pain levels , energy, and mental health ; but I am still here … I am still fighting … and I am still hoping to be a beacon for other spoonies out there and of course a place for understand for those not in the spoonie circle.

I know it’s hard to understand what we go through, and I hope to continue giving you insight to those of us with autoimmune illnesses.

Well, that’s it for now. I’ll be bringing you those  long promised makeup posts soon, and some makeup reviews.

Thank you for taking the time to take a peek into this spoonie’s makeup bag and as always – remember spoonie darlings , save a spoon for a bit of lipgloss.  xox

One Bite At A Time

Published September 5, 2016 by aspooniesmakeupbag

So ya I went Vegan! (sort of… I’ll explain later)

June 19th 2916 Pink outfit

Picture taken a few weeks into my vegan journey … loving my new Lippie from Jeffree Star Cosmetics. Velour Liquid Lipstick in Doll Parts

Yes it’s true I gave up Bacon…. And grilled cheese.
I was having digestive problems and read an article about how meat takes long to digest and that our digestive track is wrong for being a carnivore, that if we were meant to eat meat we would have a digestive track similar to a tiger or lion.

il_340x270.738946406_j941

 

I also did a ton of research before taking the plunge. I read this amazing book by Russell Simons called “The Happy Vegan” and this changed my life. Completely. I started to crave more knowledge of how my daily choices impacted the world around me. How my eating habits affected my illness, how it effected the carbon foot print I left on this planet, how …;. Blah ,blah, blah ( the things I wanted to know about just went on and on for miles).

In my teens there was a time right after graduation that I adopted a vegetarian lifestyle and I was happy, but one can only eat so many salads before they reach for the first carbon life form they can get their hands on. ( knowledge is power in that if I had the knowledge of how to be a better veggie head I wouldn’t have gotten so board only year in )

Fast forward to the present and I was starting to feel so sick and tired of having IBS-D and not having any relief in sight.
I hated the pain I was in , I hate that my energy never seemed to last, I hated the weight I had gained over the course of 9 years of suffering at the hands of an illness that was relentless, but most of all I hated that what I chose as food came at the expense of another sentient life form.
I started to watch documentaries on the meat industry and the fur industry and how much suffering these defenseless animals would go through and I just couldn’t take another bite of anything that ever had a face.

I also started to understand just how much suffering Dairy Cows went through to product those grilled cheese sandwiches I loved so much and so I re read A Happy Vegan and a journey was born.

I started out making excuses…. money is too tight, I’ll be the only one not eating meat, but the holidays will suck, meal time is gonna be so boring, food is going to be so bland, what if this what if that, but, but, but ….. Than I re-watched the documentary “The Cove” and even though I do not eat, nor have I even had the desire to try, dolphin meat, I just knew that this would be the last day I ate the way I had been, that I would need to adjust my way of life if I was to ever be able to look at myself with pride again…. This is not to say that if you choose a life style where meat is in your diet that you should not hold your head up high, I could never be that judgmental of another living being…. It is just that for me personally I couldn’t find it in myself to be responsible for another being’s death. Did you know that as a vegan I save 200 animal’s lives a year just by not consuming animal products at meal times (just a drop in the bucket of mother earth, true … but it’s my impact, and I am so proud to be able to say that)?

So I set out to prove all of my apprehensions wrong.
I started with the cost of being a vegan , and blew that out of the water when I managed to eat a HEALTHY amount of food each meal on essentially $2.00 per meal.
I proved to myself that eating this way wouldn’t be boring by choosing fruits and veggies I hadn’t tried before and by seeking out plant-based proteins that would challenge my culinary skills. What I found was that I was excited to get into the kitchen and put together a meal … it was thrilling to take that first bite and know I MADE THAT and it was TASTY!!

Now back to the “Sort of “ issue. When you adopt a new way of living sometimes you have speed bumps that cause you to skid and crash and well … you get the drift. I had a really bad Fibro flair and wanted comfort foods …. Sad to say that yes, I did in fact break and have non vegan foods.

I look at the way someone looks at addictions (food can be an addiction too , for me it’s Italian hoagies , grilled cheese, bacon, and milk shakes) Everyday you have to get up and choose your path. It will get easier , but that doesn’t mean, unless born into the vegan movement, that one will ever really not miss a favorite comfort food, that is until you learn how to make said food meatless.

I went completely cold turkey ( no pun intended ) and that has never worked for me in the past. Anytime I have completely restricted myself I have always, ALWAYS , gone off the wagon.

So as I travel the path that leads me back to a movement that for me is everything in the world to me. I have started with things I put on my body. I weeded through my makeup ( which damn near killed me ) to remove any and all products that were not cruelty free.

Next I turned to my wardrobe. I removed all leather and animal skin clothing and shoes ( not that big of a deal to me … most of my budget goes to the makeup gods) and chose to also rid myself of animal by products such as silk from my clothing.
I gave up skin care products that were not cruelty free and also what I wash my clothing in as well.

This for me was and still remains the most costly part of my journey and even though I know I am not 100% Vegan just yet, I am getting there…. ( well I cant run around the world naked I’d scare small children …. Wink wink)

I have now trained my sights on what I consume. It’s harder to do this living in a home with 4 other carnivores… in the sense that the freezer is always well stocked so there is no room for my foods and just like with any other addiction ( please don’t go getting mad at me for calling it that, to me it is an addiction, meats have always been a huge part of my diet and I am re training myself to be meat free… it’s hard for me and so I find it to be an addiction.) when the thing you crave is within reaching distance it’s hard to not want it. Thank goodness for such an amazing husband and an amazing best friend. They both support me and try to keep my eyes on the prize. My bestie even made sure there were vegan friendly options for me in the pantry …. And so as I take another step down the road that leads me to my better self, I had started to weed more and more out. I start 1 bite at a time. Choose a fruit instead of Doritos (although I have grown to really love the Spicy Sweet Chili Doritos even more than I ever loved cool ranch) I choose a nice salad over a sandwich… 1 meal at a time. Until I am able to look at my life and realize wow…. I’ve made my destination… and it’s filled with fury creatures I have saved.

lake-landscape-nature-path-photography-Favim.com-358881

of course my journey is always surrounded by water in one aspect or another.

Well thanks for stopping by. As always thanks for taking a peak into this spoonie’s makeup bag and until next time spoonie darlings, remember save a spoon for a little lip gloss.

And the Dish Ran Away With the Spoon

Published August 3, 2015 by aspooniesmakeupbag

Screenshot_2015-07-16-13-39-54-1

* 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

15 - 2-2

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.

I’m Affraid of Loosing Me

Published July 18, 2015 by aspooniesmakeupbag

2015-07-31-17-56-02_deco

Today’s been very uneventful. I have been on bed rest all day because I have a family function tomorrow and what you will come to learn about spoonies is that all spoonies need to sort of bank some of those spoons, we would normally use during daily routines, for another day when we know we have a big day ahead of us.

Today my brother-in-law had a party for his twins for their birthday that’s coming up and I was able to come out and wish them a happy birthday and give them hugs and kisses and socialize for a couple of moments with some of the party guests, but for the most part I spent most of the day in bed.

It gets to be a little lonely, this  constantly having to rest so that you don’t over exert yourself. There a days where all I want to do is cry because being trapped in a bedroom almost 24 hours a day tends to weigh heavy on your heart. You think about all the world that is passing you by and all you can do is look out from your bedroom window,  from you bed shaped prison while everyone else around you is going about their days with their mundane tasks, their pressing errands, their lunch dates and just life in general.

I guess what keeps me feeling not as blue today is the simple fact that I get to spend the day tomorrow with people I haven’t seen for so long and I get to catch up with one of my fellow spoonies who is just going through so much and I really have not been able to be there for her the way I want to be because I’m sick too.

It’s important to know spoonie darling that while we do spend a lot of time in a sedentary lifestyle, there will be days when we will be able to feel that sun on our faces. If you take nothing else from my post please remember this one thing, please remember that (I promise you) there will be days when we will feel the sun on our faces. We have to take care in remembering that while we don’t get to experience life the way we used to before we took sick, we do get moments where the fibro fog lifts and we get to enjoy the  moments of pure clarity; the pain eases back a bit and we get to enjoy the moments of practically no pain; moments where no longer are we sidelined that we can walk around the mall just simply because the energy’s there.

Those are the moments that make our spirits soar. I know that sounds very cheesy but I mean think about it; how many reruns of Charms can we possibly watch day in and day out while we lay on the sofa waiting to regain our energy to continue cleaning or to continue cooking or to just simply have the energy level to walk the dogs around the block or be able to help our children with homework? I’d like to close this post with a message for the uninitiated into this little club that we all call personal hell. I ask you to just simply remember that we’re human too, we didn’t ask for this.

While it may be frustrating for you to have  the burden of running the entire household or running all the errands or just simply not being able to take a day off from work because now there’s only one income in the home, it’s just as frustrating for us, the initiated, to have to watch you go through all of it by yourself.

We’re trapped in a body that day by day betrays us in the most inhumane ways. We get to remember who we once were before we took  ill. We get to remember that we were able to run a tight ship in the household, power through every errand that was in front of us for the day, we got to make it to the PTA meetings remembering to bring the refreshments, too little Joey’s soccer games, we got to hold down the 9 to 5 job and bring home that bacon at the end of the week, and now… now  we only get to just remember what it was like to be able to accomplish even one of those things. We get to fall asleep in as much pain if not more than when we woke up that day. We get to go to sleep hoping that tomorrow we’re able to cross off more than just 2 or 3 things on the ever-growing list of things that is needed to be done around the house or needed to be done for week.

We get to hear about all the adventures that friends and other family members get to go on while we’re left on the sidelines. And while I know that deep down inside of you,  it gets very tiring of hearing us complain about the pain and hearing us complain about being lonely or left out we are , it’s still a reality… still part of who we are in this hodge-podge of a spoonie army.

And I know that it gets to be a little much hearing us whine and complain and that there are really other illnesses out there that are so much worse and  more horrible than what we may be going through, but we are still human and it’s not easy looking in the mirror everyday and not recognizing the person that is staring back at you.

And I know this seems like I’m asking for some sort of hall pass for bad behavior or poor attitude but I promise you I’m truly not,  I just need to be able to reach out to you so that you can understand what your mother, father, brother, sister, son, daughter, husband, wife, boyfriend girlfriend ,classmate, or even best friend from kindergarten may be feeling but out of frustration would rather just suffer with the pain in their hearts (that sometimes can be so much worse than any one of these invisible illnesses could ever cause) than to reach out and say hold me I’m scared or hold me I’m affraid of loosing me.

So to you, the uninitiated, if you take nothing else from this post please all I am asking is just to remember we are human too and that while we may not be able to explain how lonely or how frustrated we are it doesn’t make it any less of a true statement. Well that’s all for now.

Thank you for taking time to peek inside this spoonie’s makeup bag. Until next time to all my darlings spoonies out there remember … hope is just around the corner hang in there kid and always remember save a spoon for a little lip gloss.

%d bloggers like this: