The Secret Life of an Independent Spoonie 

Hey WildeKats

I have a confession. 

I know when I write I usually paint this pretty picture where I’m full of motivation, strong and I’m busy kicking serious chronic illness tushy in killer-but comfy-outfits. And as much as I hate to break the euphoric bubble–I’m not actually like that most of the time. 

I use this blog to boost my own mood and to motivate myself. John Steinbeck once wrote a series of writing tips, one of which said to forget your generalised audience. He said that writing to all the faceless people who you hope to read your work is terrifying. Instead you should pick one person and write to them. 

Well. I write to myself. You are your worst critique and potentially you’re own greatest fan. 

In reality my life kind of sucks. Restless nights because of insomnia, pain riddled days, I’m pretty sure my prefrontal cortex forgot how to convert short term memory to long term memory and I’m nauseous all the time. This puts a big strainer on my social life. When I do venture out into the great beyond I usually end up spending two days in bed recovering. The many people who know me personally, they never see this person. The me that’s constantly beat down, sleeps in the bathroom and sips Gatorade just to stay somewhat healthy. 

I don’t have the luxury of a esteemed loved one who takes care of me. I pretty much do everything on my own. Yea, I have my dad and he’s great. But aside from reminding me to take my meds and keeping me company he pretty much keeps to himself. I have friends, many of whom have their own lives and illnesses. I don’t mind taking care of myself, I’m painfully independent. Besides I already have a husband, two boyfriends and a Turian lover courtesy of BIOWARE. 

I often find myself typing depressing posts and ultimately delete them because I’ve convinced myself that no one cares. But I care. I go back and read past posts about those days where I kicked RA and Fibro in the ass. I go back and remember how good I felt or how brave I was. 

I constantly have to talk myself into getting out of bed, remind myself to breathe and that I am not alone. I have all of you, and the countless other spoonies out there. Though I often tell them I’m fine. Not sure who I’m trying to convince with that, me or them… but sometimes it’s true. 

Sure I think it would be nice to have someone willing to sit with me on the bathroom floor all night, but until I find such a person I shall have to do it myself. I’ll have a cat soon, maybe he/she can be my knight in furry armour. 

Stay strong WildeKats and never stop fighting.

Oxoxo 

Kat

Spoonie In Distress

WildeKats, I desperately need your help.

As you know, someone mentioned starting a fashion series for my blog. But as I’ve been working on posts, taking pictures and tossing around names for the series because ‘Spoonie Fashion” is BORING.

What about starting a second blog? I don’t want to neglect Perfectly Wilde but I feel launching a series might steer the blog away from its original purpose.

What are your thoughts? Do you manage multiple blogs? If so, how? Or do you think it would be better to just keep one and do a series?

OXOXOX

Kat

New Series: Spoonie Fashion

Hello WildeKats!!

I’ve been working on something very exciting. I’ve also been playing video games…but you probably already knew that didn’t you? Still trying to finish Andromeda, but Apollo has been a bit distracting lately…I think he’s jealous of Corvinus. Every time I sit down to play Andromeda, I hear FemShep calling to me from the living room. I finally got a proper desk chair and my new cooling system to work so Apollo has been running like a charm all week. Not sure how long it will last, God’s tend to be a bit on the moody side but I shall enjoy my few days off with him.

Any who, on to my exciting news!!

I’ve been asked to start a fashion segment. I’ve been twirling this idea around in my head for quite sometime. I have a post on my daily beauty regimen and another for tips and tricks but I never considered myself to be, for lack of a better term, fashion forward.

We all like to look our best, and we all have a style. Mine rotates between hipster/boho on my good days to grunge/badass when I’m pissed or not feeling well. I also have sworn off jeans–traditional jeans–that is. I’m a jegging girl all the way.

The only reason I even considered this is because I am a spoonie. Now, for all you fashionista’s that come across this, a spoonie is someone who has a chronic illness. These illnesses include but are not limited to lyme disease, chrons disease, fibromyalgia, rheumatoid arthritis, lupus and even some mental illnesses. I personally battle CFS, fibro, and RA on a daily basis. These illnesses make even the simplest tasks difficult, so fashion isn’t something most of us are concerned about.

As a toddler I was a pagent girl, a dancer in my school years and a cheerleader. I even modeled competitively when I was in JR High. I have been trained to always look my best when I leave the house because you never know who you might run into. Fashion is a coping mechanism for me, if I’m confident in my outfit somehow–even on a flare day–I still feel accomplished and beautiful.

As spoonies, our lives are riddled with pain, constant doctor’s appointments, sleepless nights and rough mornings–but that doesn’t mean we have to look as rough as we feel.

I shall call this series Spoonie Fashion (unless I come up with a better title) and I will share all my tricks to look good despite the pain. Some days you just can’t. But if you’re like me–a spoonie who refuses to let your illnesses get the better of you, check in every once in a while for my comfortable spoonie outfits and must have pieces.

I will apologize in advance though, as my photography skills aren’t the best and I have yet to befriend a true artist. Until that day, ignore the awkward mirror selfies.

First post will be up soon.

What are you’re thoughts? Are you a spoonie with a passion for fashion? What are your tricks to looking your best on flare day? Comment below!

Until next time,

OXOXO

Kat

Attitude, Insomnia, and a Whole Lot of Waiting.

So, I’ve been struggling. Not really sure why, I guess it’s just one of those weeks. Pain has been fairly manageable–except for those three days where my entire left arm was in so much pain it was rendered useless. That was a nightmare. I think the fatigue is getting to me. I sleep…but I always feel like I can never sleep enough. A routine hasn’t done me much good. It’s been two months since I started my daily routine and I don’t feel any different. I am by no means giving up…but I yearn for the summer months already.

Apollo (my computer) is being his normal moody greek god self. With all the attitude he’s giving me I’m beginning to question his name. I should have gone with Zeus, or Hades even. My liquid cooling system pooped out after only three or four months. Got a top of the line Cooler Master and I ended up having to take out two memory plates just to make it fit. That’s cool, I’ll just upgrade to two 8 gig plates instead of four 2 gig plates. No big, right? WRONG. Apollo now is no longer reading the hard drive or the raid card. I was so mad last night I abandoned him for Corvinus the PS4. Together, Corvinus and I watched netflix until two AM because…insomnia.

I have another wedding coming up. And I’m moving soon. Also I’m in the market for a new car. I’m trying to save every ounce of money I can in the next few weeks for a decent down payment so that the loan officer may over look certain credit discrepancies. I actually don’t know what my score is…I had a panic attack the other day when I tried to find out. It’s one of those things I think I’m okay not knowing for now.

My doctor told me to ease off the yoga–which I haven’t been doing–and try water aerobics.

Hon…I live in a rinky-dink small town. What is water aerobics? I don’t even think I’ve seen a heated pool here. Supposedly the hospital has a life center, but I can find literally ZERO info on whether or not I even have access to it.

I had been planning on saving my weekly post for the spoonie essentials box which I ordered exactly a month ago and still have yet to receive it. We were told they’d be shipped a little later this month, but with the past two weeks being as rough as they have been, I’m not going to lie, I am a little disappointed it’s not at my doorstep.  I’m excited none the less, and I will get a membership profile if it’s the last thing I do! I had planned on beginning a month to month subscription after I received the first box and was instructed to email a person about the membership profile that I never got. I’m not sure if it’s just because I only ordered one box or if they just haven’t gotten around to it yet, or what. Doesn’t really matter. They’re just like me, and if their weeks have been anything like mine, I will not judge. Even if I have to wait until next month. I will be grateful. I’m beyond excited to see what’s in the April box. I promise I’ll do a reveal. I have something excited planned for it!

Any who, I just wanted to pop in and say hello. I’m working on some things to post. Maybe I’ll post them…maybe I wont.

Love always,

Kat.

Accept, Embrace, and Share the REAL you. 

Just because something is on the internet doesn’t make it true. I know from experience how easy it is to appear happy. You post pictures on instagram, Facebook and Snapchat for other people to see–so that they’ll see how happy you are. You tweet snarky, funny and mischevious tweets and post on facebook so that specific people will see it. No one wants to broadcast how miserable they are and we’re certain no one wants to see it. Instead we aim to make them jealous by being incrediably happy. Maybe you’re not lying. Maybe you’re really happy and just want everyone to see it. Cool. You do you boo. But what if you’re not. 

I am majorly guilty of this. I have family members in other states whom I don’t want to worry. In the past I’ve been bullied on line and instead of deleting my accounts I pressed on–pretended to be happy in school so that my peers wouldn’t think they had won. Which they hadn’t–but they didn’t need to think they had. 

We also judge people based off of what they post online. In my book there are very fine lines I don’t like to cross. People who do cross them… cool… but I have no desire to read it. I don’t comment or berate, I simply ignore. But it’s so easy to cover up pain with a smile in a picture. Pictures capture one small second of someone’s life, not their entire story.   

It’s so easy just to accept someone’s  seemingly happy life on insta and never press for details. I see this with a lot of celebrities. They post beautiful pictures that make other people wish they were as pretty as said celeb–then later we find out they were fighting for their lives. Either depression, anorexia, suicidal thoughts… whatever. Everyone struggles. EVERYONE. 

For years I pretended to be happy where I was. Even when I first realised I was sick I never said anything to even my parents. This only hurt me in the end. No one believed me because I struggled everyday to make myself look presentable. I covered up the pain, exhaustion and bruises that came from no where. I held back tears and suffered through the pain for so long that when I began telling people I was ill they didn’t believe me. They had seen me pretend to be happy, normal and healthy for so long that they couldn’t comprehend anything else. 

I love who I am but it took me a long time to get here. I wish I knew then what I know now. I wish I knew how beautiful I was, how strong I was when I was a kid. I spent so much time trying to fit in, trying to convince the world I was jus like them but in the end I couldn’t even fool myself. 

Why do we feel the need to lie to the world? Why do we cover up our pain and project a healthy persona on social media? Who are we trying to impress? What do we hope to accomplish? 

I can’t answer any of these questions. But I can tell you that doing this–lying to the world–is dangerous in more ways than one. You’re lying to yourself. You’re trying to create an image, a person that’s not you. It’s fact that if you tell someone their not good enough long enough that person will be begin to believe it. If you keep telling yourself that your not good enough, sooner or later you will begin to believe it. If you keep telling yourself that you’re this person you’ve created, you’ll begin to believe it. Then when you can’t be that person…it’s devistating. Don’t do that to yourself. 

You are perfect the way you are. And that person is who you need to project onto the world. Don’t be ashamed of your pain, your illnesses or any hardships you’ve been having. If you need help, ask for it. You’re not alone. Everyone struggles. 

You’re your worst critic. Love yourself. Always. Originals are always worth more than copies. Don’t cover up who you are, embrace it and share it! 

I love you. 

Sorry for the touchy-feelyness this week. 

No. You know what? I’m not sorry. I love you. And I just needed to tell you that. 

Ok. I’m done now. Gross, sappy feels be gone! 

OXOXO 

Kat 

Delete, Edit, Revise and Fine Tune

Good morning my loves!

It’s a nice rainy day here in East Texas. It stormed all night, and this morning as I looked out my window I was reminded of the blissful days I spent in the UK. I love the rain, I love cloudy, dreadful days. Don’t ask me why. I awoke today in a splendid mood despite how horrible I feel, so I figured this would be a good time to sit and write.

I’ve been thinking about this post for a while now. And Gem posted a podcast this morning on the same topic. You can listen to it here.

As a spoonie, you begin to realize who your real friends are. You notice people who find it hard to cope with your pain, or just don’t understand why you keep bailing and canceling on them. I’ve gone through this process with friends and family. There are people in my life that I’ve just had to let go of because either I disagreed with how they lived their life, we drifted apart for various reasons, or they constantly commented on my inability to keep plans. The group of friends I have now, Elsa, Mulan, Anita, Belle and Queenie as well as my life long bestie, C, are the people I rely on. They are very supportive and loving. They never make me feel guilty for cancelling or not wanting to do something because of the way I feel. These people are the first people I tell about everything! They were the first to know about my diagnosis and they’re also the people that made me go to the doctor in the first place. They say first hand how quickly I changed, how I was tired all the time and in pain.

My sisters, my parents, and my grandparents are amazing as well.

But it broke my heart to let go of some people. Mac was incredibly supportive but I he had his own issues with depression and anxiety. I would open up to him, but he never opened up to me. He and I agreed to call it quits because we weren’t what each other wanted in a relationship. L and I drifted apart. Not really sure why, but now as I see her on social media–I don’t see the girl who was determined to be my friend in Spanish that year. She simply stopped talking to me. And for a while I felt like it was my fault–for every relationship that I had let fall apart. But then I realized that letting go of the people who didn’t understand or who caused me anxiety is never a bad thing. As much as it pained me to let them go, I knew it was what I had to do for myself.

Unhealthy relationships don’t always happen with lovers, they can be friendships, family members, or coworkers. I love my job, but I have nightmares about certain events, I have panic attacks almost daily and I get dizzy because I stand most of the time. I made the decision to move away and start fresh in a bigger town because the opportunities were endless and that would put distance between me and people who constantly berate me for not wanting to be touched. Most of my family doesn’t even agree with my career choices. But the ones who are most important to me support my decisions even though they don’t like them.

These are the people you need in your life. Never ever feel guilty because you let go of a harmful relationship. You always need to put your and your body first. Stress has physical and emotional effects as well as anxiety and depression. I understand staying in a place because you have no other choice, but don’t make it your forever. Strive to grow, strive to move on. Work for that promotion, save up for that new apartment on the other side of town, and never quit looking for your dream job.

As a writer, when we weed out the bad things in a post, story, or novel we call this editing. There is such a thing as over editing, but having an extra set of eyes is always very helpful. Surround yourself with people who love you and support you so that when you need help weeding out those people and things that make you unhappy, they’ll be more than happy to lend a fresh perspective. Revise the list of people you keep close to you, edit out the people who bring you down and delete harmful things from your daily life. Once you make the major changes, then you can go back and add finishing touches and fine tune the punctuation. Your story is yours to write. No one ever gets it perfect on the first draft, but that’s what second and third drafts are for. If you don’t get it right the first time, try again. Just remember…

“Never compare your chapter one so someone else’s chapter twenty.” ~ unknown.

OXOXO,

With love from,

Kat

A Social Stigma

I have this friend, a fellow WordPress writer and spoonie. In this blog you know her as Elsa. We went to school together. She is, to put it lightly in southern terms, a hoot and a half.

Yesterday while we were having a much needed girls day, she brought up an interesting topic. It’s not uncommon for sooonies to suffer from mental health issues. I myself struggle with anxiety and mild depression. Elsa has been struggling with hers for a lot longer than me and boy is she a BAMF.  But it took her a long time to open up to me about her mental illness. She’s not really afraid to talk about it. But sometimes, talking about it can trigger symptoms. Sometimes sharing her struggles doesn’t relieve tension, it can cause it. And that’s okay. For me I’m the opposite, talking and writing about it helps a lot. Elsa writes poetry; beautiful words weaved together in structured stanzas that represent her feelings and experiences. This is how she copes. It’s hard to write sometimes, but poetry is her way of telling the world about herself.

While we were getting Chinese food, Elsa was reading me some tweets from a feed she follows. They were discussing depression and how they deal with it. One person said that when they’re in an episode they can’t do anything because it’s too difficult. This prompted an argument between the tweeters on the feed because the original tweeter was offended when others tried to comfort them and offer suggestions. This hit me kind of hard.

I know the struggle. I know how hard it is to get out of bed when you’re in a bad place. But putting that information out there, whether you’re asking for help or pity–is it really necessary to argue with people who only want to help? I know everyone is different. And I know that you can’t please everyone. Which is why I’m such an avid preacher of self care and love. If you don’t want to do anything to help yourself, fine–you don’t have to patronize anyone else.

Why is there such a stigma on mental illness? So many people struggle with even mild forms of mental illness. Why do we retreat within ourselves when we should be out shouting it to the world? Why are we ashamed of our struggles and illnesses? Happy healthy people are a facade. They don’t really exist. Everyone struggles, everyone. Don’t be ashamed to ask for help, and please don’t be ashamed of yourself. No matter your illness, no matter what your struggles are. You are beautiful and perfect. Always.

So how do you deal with an episode? Anxious, depressive, manic? Me, I surround myself with comforting things. Music, friends, family. When I’m really low I go to my moms and spend time with my sisters. Yesterday Elsa and I comforted each other, we got our nails done. Had a quiet dinner, she wrote and I killed things on the PS4.

Today I’m struggling physically but I’ve had a stressful week at work. I hadn’t slept, I hadn’t really ate. Elsa was just depressed because she had been doing nothing but working and hadn’t spoken to anyone other than coworkers and her husband in weeks. So she reached out, knowing I was stressed and I suggested a girls day. Some days I can’t handle other people so I hibernate in my room. But I take it upon myself to never have a negative attitude. I laugh about my illness. I find it comical how I shake sometimes, and my friends tease me about all the pill bottles I carry around in my purse. I don’t let my illness get the best of me, or at least I try. And I NEVER let it keep me down or spoil my spirits.

So there you have it. My Sunday morning, flare day rant.

I’d very much like to know what you do to help yourself through hard times. Do you surround yourself with family or friends? Or just one person? Do you colour, have a TV show you watch to make you smile?

Have a wonderful Sunday my loves,

OXOXOX

Kat