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All posts for the month July, 2015

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.

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I’m Affraid of Loosing Me

Published July 18, 2015 by aspooniesmakeupbag

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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.

Like An Ant Up Mount Everest

Published July 17, 2015 by aspooniesmakeupbag

2015-07-17-19-47-55_decoToday was a normal pain level type of day and for a spoonie suffering through fibromyalgia that’s like a healthy person saying I’m in pain because a hammer fell on my foot.

The pain level scale is doubled when you have an illness such as fibromyalgia. It is often normal for a spoonie to feel ok and their pain level to be at a number 6.

I was able to actually get out of bed, take a shower, do my hair, and dig out my makeup and get my Crayola on. However with that being said, I still had moments in the day where my energy level seem to all but disappear.

You see when you have one of these invisible illnesses your energy level isn’t like that of a healthy human being. Something as simple as taking a shower for someone with an invisible illness can destroy your energy level for the entire day.

As a spoonie, you tend to not take things for granted. That’s not to say that a healthy person takes things for granted but when you live on the edge of your bed day in and day out for the rest of your life you tend to see life in a whole different light.

We have to plan everything we do down to the very last second of the day to make sure we don’t over do ourselves. So when I tell you that getting out of bed, taking a shower (complete with washing ,deep conditioning and regular conditioning my hair, brushing my teeth and washing my face) , brushing my hair, styling my hair, and actually applying a full face of makeup is a major accomplishment for the day I hope that you can understand that what I mean isn’t that I’m lazy, pampered, or oblivious; but that all those components that a healthy person would otherwise overlook, to someone who is sick this is the equivalent of an ant pushing a walnut up Mount Everest.

Spoonies tend to celebrate the little things that we are able to accomplish because we never know when the day will come that we will suffer another relapse and be completely bedridden with no way of knowing when that relapse will end.

So today as I sit here writing this, fighting back tears, I feel proud of myself because I was able to get up and accomplished what the rest of the world would perceive as mundane tasks.

I may not have run a marathon or even one lap around a standard high school track, but damn it I got out of bed ( tears now streaming down my face), and I got my fleek on. For me, winning the lottery a million times over would never feel as good as something that simple makes me feel.

Thank you for peeking in on this spoonie’s makeup bag. I send you love, acceptance, and strength as you walk this journey, and to all my spoonie darlings out there hang in there babies ,it DOES get better. May today have greeted you with less pain, more happy dances and a never ending supply of spoons. Until next time remember darlings, always reserve a spoon for a little lip gloss. Read the rest of this entry →

Hello world!

Published July 16, 2015 by aspooniesmakeupbag

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Hello, thanks for stopping by. I’m Nita, a 40 something year old spoonie with a fascination of makeup, all things nerdy, Disney, and Zombies.

I’ve decided to start a blog as a way of  first healing my mind, being in pain every waking (and non waking) moment can kill one’s spirit.

Secondly I wanted a way to reach out to the world and hopefully shed light for those on the outside looking in on the various illnesses that make up the spoonie community.

Lastly I wanted a way to show other spoonies (and non spoonies), whatever age you are , that it’s ok to have bad days but there are blessings in everything we go through.

I also needed an outlet to explore my ever-growing obsession with makeup. Those closest to me kept telling me most of my life to go to school and do makeup professionally or teach seminars and while I do love makeup and do feel that I have a knack for it, I just don’t think I have the will to start all over in my early 40’s. That doesn’t mean I can’t still share my love of makeup with the world, from my comfy bed.

So this blog will be my quest to explore who I am, find a purpose late in the game, or shall I say re-purpose, and hopefully reach out to someone in need that may be struggling to cope with being sick or that may be struggling with understanding someone they know who has an invisible illness.

Over the course of this blog You’ll get to know more about me and more about the many illnesses that make up our spoonie family. I will also do reviews of all my passions… makeup , books, topics …ect.  There maybe entries that are just simply me rambling about my illness (to help keep my mind clear and spirit from fading) and there may be posts that are just a quick hello, my goal is to hopefully have you get to know me and me you in return.

If I can reach just even 1 spoonie and make their day less lonely, hopeless, or horrid … well, than my job is done. If I can shed light for just 1 person who is scared and frustrated, and angry, and confused about a loved one who is suffering something they can’t understand … again , my job is done.

Lastly if I can spark an interest for someone just starting out with makeup and who doesn’t know where to start, than …. well you get the idea.

Well, that’s all for now, I just wanted to introduce myself. Thanks for taking a look inside this spoonie’s makeup bag and untill next time too all my spoonie darlings out there , life doesn’t have to be centered on just our illnesses, I hope that today find’s you in less pain and with more spoons, and remember spoonie darlings, ALWAYS reserve a spoon for a little lip gloss.

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