Honestly, right now this post definitely feels like confessional. Sadly I often don’t write because I am afraid to confess to the world how Debbie Downer I really feel inside lately. I keep waiting for it to pass. To have a solid week. To feel back on track and armed with some inspirational learning or technique that tipped the scale to share. Sadly, not today. Not for the last seven weeks. And I don’t know if ever (I know, I know…a wee bit dramatic). But that’s how I get after two sleepless nights. This time I have simply decided to give in to no sleep and start my day at 5 am. And what better way than with some chill tunes on Apple Music and a confessional.
I had a flare. It kicked me on my ass. I had no idea how quickly I could fall and how deep the hole could be. Frankly, I’m still crawling out by the skin of my teeth. Tonight, after a fabulous Easter Dinner with family and friends, I came home and had a complete emotional and mental meltdown.
I’ve been battling hard with the anxiety and depression that comes with a flare (excruciating pain in my left ribs…again…mother fawker). And I’ve been hiding it from most everyone. Sometimes I think if I just plaster a smile on and keep pushing, the pain will go away. Alas, not so much. The nicer weather is helping but it’s still a battle. On Sunday, thankfully a beautiful friend reached out to me, quite out of the blue. I think Mamma K or Dad whispered in her ear that I needed her. Her understanding. Her compassion. Her empathy. And her learnings. She also has fibro.
I couldn’t hide one more minute. I couldn’t message her that I was fine, having more good days than bad, that I was working the program and inching ahead. For whatever reason, it started spilling out. Every time I think I’ve reached acceptance, I come to find I haven’t. Not even close. Deep down I feel such a deep and profound sense of failure. Like I’ve somehow ruined mine and hubby’s life.
I guess I do try to hide it (fake it till you make it, right?), tell everyone “I’m just tired” or make compromises but the cost of that is high. Putting on a smile. Pushing through. Trying my best to do all the “things” I’m being told to do to “get better”. It always seems to catch up to me. It always seems to backfire.
Emotionally and mentally I don’t feel anything close to stable although I am a sure to the outside world it looks like I’m managing. The other day Julie and I were out walking the dogs….good day, right?! We were sitting enjoying the sun when I saw two colleagues. Beautiful, fabulous, supportive colleagues that I know…well…and adore!!!
As we are standing there hugging and swapping stories, I have a huge smile plastered on my face. They are talking about how great I look. I’m asking about work and life calmly. Yet inside my anxiety flew it into OVERDRIVE in seconds. I went from relaxed to a near panic attack in 2.5 seconds. I actually felt my body go into flight or fight. My adrenaline spiked, I started sweating, my stomach rolled, I felt dizzy, my mouth went dry and I wanted to ESCAPE. RUN NOW!!!!
Why….cause I was afraid I didn’t look ill enough??? Nope. Both these women work in the benefits division. They, more than most, understand what I am dealing with. They are two of the most compassionate, empathic and supportive women I know. I know they were genuinely thrilled just to see that I left the house, obviously managed a walk and looked great. But I went into FLIGHT because their fawking names were jumbled in my head. I couldn’t get pronunciation right. While talking, I was going through the list of names in my head at warp speed. I wanted to introduce them to Julie and I couldn’t. I couldn’t get the names right in my head….
WTF?!?! I’m a damn intelligent woman and THIS is what I am reduced to?
Yes, I know you are reading this thinking…shit Natalie, relax. This happens to the best of it. Does it happen to you seventeen, twenty, thirty times a day? On my and hubby’s anniversary trip I couldn’t get Superstore out of my mouth (while staring at the sign) and kept calling it the SuperOpera…at least since I was staring at the store name he knew what I was talking about. Fawk me. I’m a babbling idiot. Good lord.
Working with Occupational Therapist (OT) and my shrink I keep trying to ‘get better’ by doing the things they recommend. Plan Natalie. Stick to the schedule Natalie. Plan your rests. Don’t overdo it on days when you feel marginally better. Work through the pain Natalie. Even if you can only do a task for 10 minutes instead of 30 minutes, try! This will help you retrain the brain to discontinue those nasty pain pathways it’s built.
I try. I swear to God I try. And every day I feel like I let them down. Or I let hubby down. Or I let other family and friends down. And let’s be clear, OT isn’t asking for the moon. Given that her job is to get me ready to go back to work, getting and working a schedule that mimics a work day in some sort of manner is the approach for treating Fibromyalgia. My shrink concurs saying that it is the most effective treatment. And both my OT and shrink are encouraging. Always pointing out the positives. The wins. But for me, this goddamn schedule has turned into a slapstick upside my head of my daily failures. I can’t see the wins for the losses. I can’t seem to get it right. Not even close. Yes, I do bits and pieces here and there. Some days more than others but what I’ve come to learn is that even the smallest of win seems to almost always come with a loss. Everything is a compromise. Take from one spot and you’ll have to make up the deficit on the other end.
- 7:30 – Up, feed and water dogs
- 8:30 – Meditate 30 minutes
- 9:00 – Rest 1 hour (colouring, bath, sit outside, sit in hammock etc)
- 10:00 – Cognitive task (write, research etc)
- 11:00 – Rest
- 12:00 – Lunch/rest
- 1:00 – Walk dogs (30 minutes)
- 2:00 – If didn’t walk dogs, gym and walk 30 minutes/if walked dogs, cognitive task
- 3:00 – Rest
- 5:00 – Meal prep
- 6:00-8:00 – Relax/hubby time
- 8:00 – Mediate (30 minutes)
- 8:30 – Plan next day
- 8:45-10:30 – Relax/hubby time
- 9:30 – Take nighttime meds
- 10:30 – Heating pad and read
- 11:00 – Lights out
I mean, this isn’t rocket science. This always seems doable but, I haven’t ever checked off even close to half the boxed. Oh I get bits and pieces. The more bits and pieces I get during the day, the less I have in the evening. The less bits and pieces I get during the day, the more I have in the evening. And then some days it doesn’t even matter – it’s just a shit day and a shit evening. Complete right off.
I feel like I never get it right. There’s no consistent (even if tiny) continual progression forward. Frankly, how could there be? I don’t/can’t consistently stick with it. How does one hang on like that? How does one stick with it? I let OT down, I let my shrink down. I let hubby down. I let other family and friends down. I know the reality is that none of these people have these massive expectations on me. They love me. They want me to succeed. They support me. The real truth….I am constantly letting ME down. I have these expectations, and neither my physical, mental, or spiritual bodies seem to be able to manage it.
I told my OT the other day that she doesn’t get it in large part because this is the only “me” she’s known. She never met the “me” I was two years ago or even five years ago. I thought of myself as one of the strongest women I know. I’ve battled some serious shit in my life. And after 11 years of therapy and a hell of a lot of work, in my late 20s, I finally got a handle on my shit. And I grew into this amazing, confident, vibrant woman who owned her world. It was amazing.
So to have fallen from that, well frankly, it feels like a death, and I am in deep mourning. How long this mourning period will last, I have no idea. Forever? How does one get over the death of a beloved self?
And I know I should draw great strength and comfort from the above experience. I mean, I literally dug myself out of a very deep emotionally broken hole. It took years. I slowly but surely did the work and came out of it better, stronger, more fabulous than ever. I held such pride in that. My 30s were the most incredible period in my life. I had never known such self-love, self security, confidence and inner peace and happiness. I was finally settled into my own skin, proud of who I had become.
And I still reflect on that accomplishment with great pride. But it was different. There was no one telling me I had an illness with no cure. I knew that I was suffering from incredibly low self-esteem, I had an almost paralyzing fear of abandonment after the trauma of losing my Dad so suddenly at such a critical and young age, I had a lot of shame and guilt to contend with over choices made very early in my teenage years…and I had anger issues…serious anger. But with therapy and hard work, I was able to understand the reasons and the source. I knew it wasn’t permanent and that change…the power to change…existed within me. I forgave myself and I rebuilt from scratch. It truly was a thing of beauty.
This isn’t that. No amount of will, therapy or drugs is going to change the fact that I have fibromyalgia. I need to learn to accept, live with and manage. I’ll always have pain…I’ll always deal with flares…and debilitating depression and anxiety…and fatigue that makes a week of sleeplessness look like child’s play…and deep muscles pain, cramps and joint pain…constant ringing in my ears….numbness in my hands…waking up feeling like my feet and ankles are broken…dizziness…insomnia…and let us not forget the cognitive impairment called fibro fog that makes me feel like I’ve been reduced to a five-year old. All this…for the rest of my life???? No cure and hey…no drugs that really help. I mean, they might help this or that symptom a little but then we’ll have to give you other drugs to counteract the side effects of the first drugs…until your medicine cabinet looks like a freaking pharmacy.
And if that is the case….and here’s the real basis of the fear…what if this is as good as it gets?
What if right here and now is as good as it gets? No matter how much I work the schedule, the therapies, the programs, the pharmaceuticals etc., what if I’m as far as I am going to improve and now it’s about managing what I’m left with. I mean isn’t that what acceptance is? Accepting what is, right here, right now. And finding a way to accept and be ok with that. Sure it doesn’t mean you don’t stop trying, playing around with meds etc…but what if what I’ve gone through the last three to six months is it….no matter what I do, say or try. Because I’ll tell you, that’s what it feels like to me. Oh sure I have decent days…maybe even a few decent weeks in a six-month period but for me, overall, I don’t feel any further ahead now than I was six months ago. And my medicine cabinet would have you believe that I’m actually worse given nearly all my medication levels have double and now I’ve added narcotic pain meds to the mix (something I have been trying my best to avoid).
I’ve been told by the experts that they key to “getting to the best place you can be, is through acceptance.” But tell me this…how do I accept the fibromyalgia reality when everyone wants me to keep trying to “get better” so I can get back to work? I mean, shit. I WANT to get back to my life, to my career, to my work, to my colleagues who I absolutely freaking adore! But how does acceptance work when you are still trying to “be better now”!
I’m always trying. Pushing. But fawk, I’m exhausted. Earlier this week, I lay in bed and cried for hours just exhausted from trying and feeling like a failure…wondering what’s the point anymore? Is this it? Is this the new me? Is this as good as it’s going to get? And if it is, what does that mean for my life? For my marriage and the life we dreamed of? What does that mean for my work, my career, my independence?
How do I accept being a shadow of who I was?
My amazing friend who was messaging listened….and she gave me a lot to think about. A lot of questions to ask myself. Questions she’s faced and answers she’s found. I took a lot of solace in her words knowing I’ll be thinking about them a lot in the coming days and weeks as I wrestle with this. She wrote me that:
“We are not weak sickies. We are Fibro Fucking Warriors!”
That spoke to me. That made me cry with immense relief. Yes. Someone gets it. I am not alone. I am not misunderstood. I am real. My struggle is real. And it’s ok. Someday maybe I’ll be able to see myself as a Fibro Fucking Warriors (FFW)!
She talked to me re-prioritizing her life and social circles as part of acceptance and not to be afraid to do that. She reminded me that sometimes when so much has been taken away, we start to learn to appreciate even more what we do have. And she told me how she works on her self-worth every. single. day…now more than ever we need to remind ourselves daily of how much we do matter. We need to write down the good things about ourselves to read and recite in the mirror when the ugly self loathing creeps in.
So a lot of doom and gloom and life questions in this post and such is life. I am tired of being worried of scaring people off. I am tired of seeming like a chronic complainer. I’m just gonna try to come here regularly and tell you how it is in my world. And if it sucks, it sucks. And if sucks for a lot of posts, it is what it is.
Please know I am not looking for your pity or am posting purposefully wanting y’all to LIFT me up with your encouraging comments (although your words are always deeply appreciated). There’s no agenda here. No expectations on my part. I just want to share, to maybe help someone else out there know they aren’t alone in how they feel. Hearing from an inspirational FFW today reminded me of that…that I’m not alone in how I feel. Others have been where I’m at. Others are still there. Others are even in darker places. For all of you out there, I hope my words help. I hope you know you aren’t alone. We are all Fucking Fibro Warriors no matter what stage or place!!!
Right now, this very second, I am loving myself for my raw honesty and my bravery to put it all out there. I am deeply appreciative of hubby, my family and friends, and my messenger FFW!!!
Tell me, what do you love about yourself today?