Year 7 – Behind the Fake Smile

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My 7 year anniversary pile of pills. Gross.

I know, I know, I have been terrible keeping up with my blog. Between having brain fog, being easily distracted, losing all train of thought, and pure exhaustion, it just ends up getting put on the back burner.

I recently had my seven year anniversary with my Lyme and Coinfection journey. Oh joy. What a long seven years it has been.

Being so behind, I was going to do a full update for everyone. It’s in the works, I promise.

However, I feel with it being another year, another anniversary, today’s post seems more fitting.

I have always sworn to be real and honest with everyone. The good, the bad, and the ugly. I have decided to share the mental struggles I have been experiencing, being sick for so long.

This past year has been incredibly tough. I am getting burnt out.

This is not a pity party, it is my truth. I don’t openly talk about this subject. Many don’t. Kind of a taboo topic, you fear judgment and it’s just plain uncomfortable to share.

You know what though? I feel like it is important to share, because I am real, raw, and honest for my readers.

I have learned over the years that people after awhile prefer the very short hand version of how you are feeling or if there is any updates.

I will nearly always give an “Okay!”, with a big smile on my face in response to anyone asking how I am doing. If you really know me though, you know my fake smile and can tell by my eyes I’m clearly not “okay”. I am a pretty terrible liar.

When everything is new, people are much more interested, want to know all the details. They listen intently and ask questions.

Give it a few years. People forget chronic means chronic. This shit doesn’t disappear and honestly, I feel like it all just gets old to everyone around you.

A small newsflash… This got old after about a week, once I had a chance to process this all, when my life turned upside down so many years ago.

It got old when I learned that there is no easy fix, and Lyme isn’t just some “joint pain and flu like symptoms”.

I thought Lyme was no big deal! I would just have to take a short course of antibiotics and I’d be good to go.

I was so wrong on that one, but that is what I was taught. That is what a majority of doctors will tell you, even living in an area where ticks and tick-borne diseases are so prevalent. I put all doctors on a pedestal, I never thought to question anything.

I know that I am not alone in this. And hopefully by reading this entry and you might be experiencing something similar, you will know you are not the only one, you are certainly not alone.

Those who are lucky and can’t relate to any of this, maybe it will help give you some sort of understanding.

I feel like everyone is allowed to have “a day”. When you are dealing with something really hard, in my case living with debilitating illnesses, you need to have some time to be sad. To be angry. To grieve the life you once had.

That is NORMAL. It’s allowed. You just at some point need to dust yourself off and stand back up.

I think unfortunately, my mind has surpassed “having a day”, and is playing constant games with me. I do my very best to not let it win. Ugh. Sometimes I swear the mental issues are far worse than any of the physical issues that go along with any illness.

As much a I have been filled with my “butterflies, rainbows, and unicorns” attitude, I am not going to lie, I often feel completely broken. I am overwhelmed. I am sad, I am downright angry and bitter. I can be a snappy asshole.

I like to keep this all bundled up inside in a nice neat little package. However, over the course of this past year, I have been about a minuscule incident or inconvenience away from exploding with waterworks, panic attacks, and blowing up entirely out of proportion on people that I love and don’t deserve it.

The anxiety and the panic attacks have far from disappeared. The paralyzing anxiety is nearly constant, and the panic attacks seem to be a more and more common occurrence.

I have had a series of meltdowns, one was pretty embarrassing at work. Simple task I know, and a responsibility of working in the office, I can’t handle phone calls. I was bawling, had the snots, all that good stuff.

I had to leave right then and there to go to the dentist. There was no hiding those puffy bloodshot eyes and red nose that had been blown repeatedly before I headed inside. Especially with the dentist being face to face with a girl post meltdown. They are a great group of ladies though, and didn’t make me feel weird about it.

Most of the time I know my brain is headed that direction and no matter how hard I try, I can’t seem to willpower them away. Tears, shaking, gasping for air to the point I throw up.

There has been plenty of times my Dad for Dave have been on standby wanting to pick me up and take me home. I have always hung in there no matter how long it takes, and get myself home. This is all so exhausting. And incredibly embarrassing for me.

I overthink everything. One example – I did my best to go to my friend’s house for her kiddo’s birthday. It wasn’t a super long drive, and maybe on a better day I wouldn’t have had much of an issue.

I knew about 3/4 of the way to the party I was not doing great. Speed up slow down, hyperfocused on the road and I could feel the anxiety and panic heavy feeling building up in my chest.

Part of it was probably just a “Lymie” day, but I’m sure a huge trigger was going somewhere. It’s annoying I get this way now, even just seeing friends. They are friends! Not some strangers, not an unfamiliar place.

I pulled myself together and maybe made it a solid hour at the party. I knew I had to make the drive home and do it safely so I kind of jumped the gun and said I need to go home. Cars were  packed like sardines so my friend’s husband helped move cars around so I could get out and go home.

I literally thought and analyzed leaving early for about 2 days. Obsessing. I felt like a piece of shit for going home before the opening of presents.

Is everyone annoyed at me? Mad? Oh my god, did anyone say anything about me?

I now have a tendency to isolate myself. As much as I want to reach out to people, the thought of actually doing it gives me anxiety, and I get so much more tired. All I want to do is sleep.

It feels like an extreme amount of energy and it really shouldn’t be. Why am I like this now? I used to be so outgoing and reach out, and now I’m afraid of everything, yet I get a bit lonely. This is a contradiction I’ve created.

Every so often, I see social media pictures and tags of things I missed out on the invite. I get bummed out, as I know once upon a time things were very different. I would have been in all those pictures too.

Could be a million reasons, but I always blame myself. Did I do something wrong? 

My mind keeps repeating over and over that I am not good company. I am a burden. An inconvenience. Forgotten.

Maybe I’m just plain annoying to all those around me. I’m not a big fan of myself quite often, so this could very well be true.

I keep putting so many hypothetical situations in my head fearing the worst even though I know in the back of my mind I know it’s purely hypothetical. Well, yeah, shit happens but you can’t worry about the “what if” situations in life.

My mind plays out if “X” was to happen, how would I handle it?

Oh geez, what if this scenario actually happened! Oh no!

Then I sit and pick apart this purely hypothetical situation over and over again as if it was reality and not something created in my head.

It is big ol’ circle that hasn’t seemed to simmer down.

It has been overwhelming thinking about money, medical bills, work, a schedule full of doctor appointments, and just trying to stay afloat keeping up with basic life tasks or “adulting” as they say.

I do as much as I can to keep up with errands, cleaning (I have been fanatical and can’t just give it a day), and cooking with the new strict diet.

Basically, wifey duties that are making it feel like I never get a break, even though I am putting this all on me. If I just asked Dave or wrote a “honey do” list, he would do it all without any complaints. I just don’t for some reason.

I have a wonderful, seriously the very best Mother-in- law I could possibly have, Sister-in-law, Dad, Mom and Dave to help. I need to just chill out.

I just have this intense need to try to do it all. Maybe it is because I can do so much more now than when I was very very sick. Trying to make up for the lack of independence and fully relying on other people.

There has been a lot of tears being so angry at myself when I hit my limit for the day, or mess up in one way or another.

I put too much on myself and know I am overdoing it. In turn, I feel like I’m failing everyone, and myself. My body physically just can’t do it all.

I will say, I’m a strong believer in “mind over matter” and pushing yourself. I think it is a necessary thing you need to do or you kind of fall into a trap when you have a chronic illness.

It isn’t healthy though when you push yourself so friggin’ hard you feel this way. I fully realize this. Yet I don’t stop.

I often struggle with feeling like I have a purpose. Once upon a time, life was very different. I was fit, active, driven, and I could have had a bright future. I was Valedictorian of my College, and I know I had a lot of potential. How does that saying go again? The world was my oyster? Brain fart. Don’t quote me on that one.

Time seems to have stopped, yet everything and everyone around me has kept going. I think about how life could have been if I didn’t get sick. I feel like I have been robbed.

Would I have had an amazing career? Would I have done anything meaningful? Changed the world? Who knows.

Would I have had kids if I was healthy? I feel like Dave would have been an amazing Dad. He really would have.

He doesn’t talk about this topic, I often wonder if he is resentful in any way. I can barely take care of myself a lot of days, it just isn’t in the cards.

I was never like this. I was happy-go-lucky. I would shrug off anything that bugged me. I wouldn’t let things get to me or ruin my day. What the hell happened to me?

All I know is now I can’t even handle normal tasks. I can’t even get out of bed on time. I am unintentionally an extremely unreliable person.

I’m that person I would have hated when I was healthy. I was punctual, reliable, someone that you could always count on, 24 hours a day.

There is a small blessing in disguise of having Narcolepsy. Having a bad day? Feeling stressed ? Feeling downright yucky?

I just skip out on my meds and spend 5 minutes on the couch. Out like a light, it is a nice band-aid tool once in awhile.

A negative of Narcolepsy – hallucinations and paralysis. The spiders that are everywhere. The non-existent firetruck sirens that are blasting, and all the flashing lights right outside my window. The what I can only describe as a monster like demon that has come through the ceiling to terrorize me at night from the time I was a child.

My body is frozen, all I can do is close my eyes and hope it all goes away. I know it’s not real. This crap is actually pretty normal for someone with Narcolopsy. But in the moment it still really sucks.

I do have far better days than this all, but as odd as this sounds, I often have this fear to even be happy anymore. Or excited. For something great happen to me. Because, in the back of my mind, I wonder just how it will be taken away and I will be punished for it.

I somehow hold tremendous guilt and in turn, I don’t deserve good. Maybe because I feel I owe the world for everything that I had no control over for all these years.

So, there you have it. Mind fuckery at its best. I am so incredibly strong, but it has been rough. Slowly I am coming out of it.

Treatment has helped me come out of this funk some. I don’t like to blame every little thing on the Lyme and coinfections, but history has proven time and time again this all happens when Bart the Beast is in full force. I will not let it win.

With the slightest chance you have not followed my story (Pshh.. you really should as I’m pretty awesome), here is the links to a little summary of the last 6 years of my story –

https://kimmiecakeskickslyme.wordpress.com/2013/09/07/september-7th-2012-one-year/

https://kimmiecakeskickslyme.wordpress.com/2014/09/07/september-7th-2012-two-years/

https://kimmiecakeskickslyme.wordpress.com/2015/09/03/august-7-2012-3-years/

https://kimmiecakeskickslyme.wordpress.com/2016/09/15/september-7th-2012-4-years/

https://kimmiecakeskickslyme.wordpress.com/2017/10/14/year-5-what-i-have-learned-living-with-chronic-illness/

https://kimmiecakeskickslyme.wordpress.com/2018/12/12/september-2012-six-years/

Of course I didn’t forget about my Olive picture! On my blue sky days, I do the things I love.

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We did a nice long walk in my little town, enjoying the fall scenery. We also made a stop at the pet store for some treats!

 

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