(Before I begin, let me clarify alcohol is not a trigger for me with the exception of champagne…)
I love this wine, the taste and the symbolism. Every time I open the bottle, I stare at that label and think- how ironic. “The Prisoner.” He appears to be in some sort of jacket, bound in chains and shackles that tighten with the twist of the knob around his ankles. So specific, I wonder what the winemaker thought, experienced, endured while harvesting the grapes and waiting to see what they’d yield. How he described the image he wanted to portray to the artist. I’m probably digging too deep and the chained man without a face simply represents the dedication to the man’s craft.
Or he’s tortured by something bigger. I’m going with that.
I poured myself a glass last night and literally had one sip. After making dinner and then listening to my child whine all the way through our meal ’til I put him to bed, that was kind of all I had a chance to enjoy. Why did I need wine? Well, I was tired and stressed. Why am I tired and stressed? Lol Well, for the same reason most of you may be- I have a three year old and the last of my holiday shopping and travel prep. Oh, and well, uncontrolled Epilepsy.
But it’s not just the seizures making me feel a sense of connection with the soul on the label; it’s the side effects. The depression, the exhaustion, the hives, the bone aches, the panicked nightmares, the absence of continuous coherent thought, the anger, the lack of care whether I communicate with anyone else. It’s that awkward attempt to be my “normal self” (whatever the hell that is these days) in groups, the lack of confidence that’s almost more painful than my joints when I do those first early stretches. The recognizable cracking noise when I inhale a first deep breath. The pop of my jaw when it’s locked during a night blanketed by apprehension and worry…
My girlfriend and I were in her kitchen a few nights ago and she asked me about my health and made the point I try to, but hate belaboring, to those who don’t understand this disorder; you don’t act or look anything like someone who’s sick. While some people are put off by such a comment because it implies I/we might/may not be, I wasn’t offended at all. She was explaining that it’s good I share to enlighten others. And I appreciated her opinion and questions. She’s a close friend since college; she knows I’m not bullshitting.
But it all comes back to the dialogue. What do I really say to people asking how I’m doing? What can they really say to me? Lol It’s like a tap dance. For the chosen few (sorry) I unload it all. The nitty gritty, the unvarnished truth. Nothing pretty to soften the details I live. The details 1 in 26 people live with actually… And then the rest get the polished, brief version.
That’s why I needed a drink.
Most won’t understand anyways. And I don’t want my answers to come off as asking for a pity party. (My husband says I have to get over it when sharing, but how?) So I’m trying to listen. To get over it. And here comes the word vomit. I just need to vent for once. My current story. The reason I’m viciously pounding each key as I type and vowing to publish this even though it will probably suck. (Don’t say I didn’t warn you.) So, let flow this kinship I feel towards The Prisoner…
It’s hit me again. No, not the wine. The depression. (Perfect timing! Why not at the Holidays?!) I’d never needed an anti-depressant until I started Keppra and then the rage, anger and sadness grew to something constantly present and I couldn’t exorcise it’s residence. Exercise, less alcohol, more “positive thinking”- nothing lessened it. Until I started Pristiq. After a few weeks I noticed a difference. My husband definitely noticed a difference. I hated being on a pill to “make me happy” but I hated the person I’d become more… And that hate is starting to come back… I used to tell my students the word “hate” is much stronger in context than what most people mean. “I hate black licorice.” You may really dislike the taste but “hate” always sounds so vengeful. Angry. Licorice never warrants anger. lol But the use of the word here is truly applicable. I hate the part of me that feels dark and sad, that experiences guilt in feeling so since I have so much to be thankful for daily. And the anger accompanying the depression is plain mean. I prefer humor and laughing, yet I can cut so viciously with words without hesitation. Who am I? I know whom I once was… and it makes me sad. I’m embarrassed. And when I first revealed my depression, some were appalled, and I saw why many would hide their battles. Yet, I know there are many more out there who live its severity and want a voice. It’s a scary revelation, but it happens to be part of my current life. For those of you in the same boat, I’m telling you now, thinking “positive thoughts all day” isn’t the magic wand so many want you to believe. I get it. I understand where you’re coming from and we’re not at Disneyland. 😉
I can’t talk about the extent of the exhaustion anymore; that in itself makes me tired. There are no words to convey the feeling. Just know if I seem like I’ve got it together after 2:30 pm in the day, it’s taking more effort than you can even begin to imagine.
The hives. Ahhhh, yes. I’ve always experienced them off and on with Lamictal and now they’ve worsened since adding the Briviact. No surprise since I got the life threatening rash when on Tegretol and then Stevens-Johnson syndrome when on Dilantin. I’m prone to every side effect, but I’m so desperate for a med to work, I don’t even tell my doctors anymore. It’s awful though. Often, I’m with others and I’ll literally grit my teeth so I don’t start scratching the hell out of my thighs, buttocks, back of my legs and soles of my feet. It’s torturous and painful. And they pop up ALL the time. More often than not when I’m chilly but not necessarily. (Always searching for the common denominator.) And being on meds, I bruise so easily- those pop up out of nowhere as well- creating a purple, black, blue and yellow surprise. Add the scratching to try and experience some relief and my body really looks colorful. I’m not kidding- the red welts are often the size of nickels and then they merge together, on top of the muddle of bruises… It’s relentless.
But this next one takes the cake. The joint aches. I’ve never experienced anything affecting the bones in my body… Some meds are proven to cause dramatic reduction in women’s bone density leading to osteoporosis, so this latest effect scares the hell out of me. I’ll never forget the first morning I went to hop out of bed and ended up screaming in pain. My shoulders were rolled in towards my chest and the smallest movement in uncurling them caused the slight throb I already felt to magnify throughout my chest and reverberate. I heard my breastbone and vertebrae pop simultaneously as I tried to straiten my body, while clenching my lips to avoid waking anyone. I started to straighten my arms but the searing pain in my elbow joints shot through my bones in spirals. I wanted to curl back up, fold into a ball, but I was overwhelmed by the thought that I’d truly, finally started falling apart piece by piece… Each night since, I toss and turn trying to ease the ache of my shoulders every time I put extended pressure on them. So tender to the slightest pressure. That’s the feeling. Pain and a constant popping of joints… How did I age so much overnight???
I won’t continue to go through the side effects anymore… After rereading my words, I sound whiny and pathetic… It’s going to take a lot to post this. BUT there is one thing I must make absolutely clear- it doesn’t mean I’m never happy; I’m happy often and everything I’ve ever posted or written is true. I don’t lie. I just prefer to share the sunshine since I know we all have enough sh*t. That’s the rollercoaster- up and down, high then immensely low.
You know, you envision your life including your hopes and dreams realized, sadness minimalized and only briefly acknowledged. Who doesn’t paint that picture? We all do… or damnit, at least I do.
That’s why I feel for “The Prisoner.” He still envisions hopes and dreams realized but he accepts the chains and shackles. He’s grown to understand this is beyond him. I look at the bottle and think- There will be light on his face and hope for freedom in his future… He clings to the idea that trial doesn’t always mean weakness and weakness is temporary. He’s not ready to give up. He’s simply tired. For herself and for others… or at least that’s what I see.
Now I’m going to go pour that glass…
I’m a fellow diagnosed epileptic, I also have a rare syndrome called Nutcracker Syndrome, and I have undiagnosed chronic pain. Using a blog or venting to people/loved ones we don’t do it for pity, sympathy or attention. We do it because it’s a huge part of our lives, whether we want it to be or not. We also discuss it to help others who are dealing with similar situations, to help eachother and to inform and educate others what we go through. Not to be looked down upon or judged. It’s a way we cope with all we go through. Also, I’m on Keppra as well and you should talk to your doctor about Vitamin B6. I can’t say it’s helped me tremendously, but it’s helped me a little. I don’t have kepprarage, but I have increased irritability since adding keppra to my list of medications and Vitamin B6 has helped me some. Like I said, nothing drastic, but some improvement, so definitely ask your doctor, you might benefit it from it. I also wanted to say the quote that helps me the most is living by the quote ‘one bad day doesn’t mean a bad life’. It’s helped me get through a lot of bad days. I can tell your into symbolism by your post so you should check out my blog post entitled the The Lotus https://nursingnotions.org/2016/11/17/the-lotus/
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Thank you so much for sharing and I’ll totally check it out! I appreciate your encouragement!!!!
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Whining and complaining you are not! You are going through some SERIOUS shit girl, and this is your reality! Don’t fear sounding like a whiner. It takes courage to go through what you re living on a daily basis, and it takes tremendous courage to actually put it on paper! You are brave and strong, but you are human…and its ok to fall apart! Your post brought tears to my eyes because as a mom and wide I can’t imagine going through one day of your pain. Thank you thank you thank you for sharing your life with all of us, you are a light to those in darkness and a hope to those who don’t feel that they have a voice!
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Your words are amazing and SO encouraging… Thank you so very much for taking the time to uplift a stranger- I’m truly grateful. :)
Never stop writing- no one even begins to understand- your blog sheds a little light that humbles us all!!! I love you Megan!
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Love you too girl! And you’re an inspiration as well. I hope you know that!!!
An intense and raw post. I applaude your courage to post the depth of what you’re experiencing. I admire your strength. That’s the beauty of the blogs that I read, everyone has a different story to tell and everyone deals with it differently. I loved this post Megan, thank you for your honesty.
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My response will be more in depth in an email. Until then, Megan, you don’t have to worry about fooling any of us who follow your blog, who know you, who have gone through parts of this journey with you, even if we don’t have epilepsy. You are not a whiner or a complainer. You are honest, sometimes to a fault. And, that’s okay. Know that you are loved.
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