Fibromyalgia

Here I go again…I’m doing it different this time

Commit
Start Gung Ho
Fabulous success
Overdo it
Injury
Lose momentum
Forget your “why”
Stop moving
Start binge eating
Striking regress
Health issue rises…
Rinse and repeat

Anyone familiar with this cycle for weight loss/improving health style?

Yes?

I thought so.

Back on September 12th I was diagnosed with Tarsal Tunnel Syndrome…like Carpal Tunnel Syndrome, just in the ankle. I’d been dealing with pretty excruciating nerve pain in my foot.

So, I joined Weight Watchers, committed to 90 meetings in 90 days (today is Day 55, meeting 57), changed my eating, and started walking.

I’m not exactly sure when I started walking, but, I haven’t missed a day since then. I worked my way up from just under a mile at a time to over two miles at a time.

Throughout that time, the nerve pain never went away, but it diminished and walking got much easier…until day before yesterday. I logged a cumulative six miles in one day. I pushed again yesterday and logged 2.6 miles.

The pain came back with a vengeance…and I’m feeling frustrated by my self-sabotage and discouraged by my continued overeating.

In the past, this would have been the point at which I gave up. Not this time.

Why? What’s different now?

Community.

This time I have the WW community. Yesterday, I walked in the door of the studio and I was greeted by name by one of the “Wellness Guides” (formerly, receptionist). One of the Guides is also a coach in other workshops (meetings) I’ve attended. She always asks what number I’m on and tells me what an inspiration I am. She “brags” to other members about what I’m doing as a way to motivate and encourage them. The Coach for that meeting is very focused on the members giving ourselves credit and props for showing up and engaging.

There’s also the online community who has been following along on Instagram and FB, where I share more of the day to day details of this journey I’m on. Plus, my fellow bloggers who are also encouraging me.

There’s my faith community where we go broader and deeper into all our lives and journeys. Several of them are also following my journey on FB & IG.

These three communities are encouraging and supporting me. I’m holding myself accountable to them. And, if I’m being honest, the praise and approval is motivating me, as well. Is that shallow and less “evolved” than one should be at 49? Probably. But, it is what it is…another thing for me and my therapist to discuss.

Another thing that’s different is that I’m one of my “whys.” I finally feel like I deserve to take the time I need and give myself the attention and consideration I should to make taking care of me one of my priorities.

Walking is part of my daily self-care routine. It helps my mental health. However, I don’t have to walk six miles in a day. I need activity every day, but one mile, approximately 20 minutes is sufficient. When I walk, I need to walk enough to raise my heart rate but, I don’t have to push myself like I’m in a race. I need to reframe why I’m walking. It’s helping me lose weight, but, it’s purpose is to improve and maintain mental and physical health through daily activity.

I need to remember that the ultimate goal isn’t the weight loss. It’s mental and physical health and wellness so I can sustain and maintain consistent functionality in taking care of my responsibilities, my relationships, and become self-sufficient.

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My whys


I mentioned in yesterday’s post that I joined WW (formerly Weight Watchers) mid-September this year. I have a laundry list (Why “laundry”? Wouldn’t “shopping” make more sense? I think so, too). Correction, shopping list of whys. Not the least of which is Tarsal Tunnel Syndrome, a rare disorder of the ankle, similar to Carpal Tunnel Syndrome. Here’s the complete list:
Family – I have two adult children (32 & 25), three grandchildren (4,3, & 1), and a nearly 10 year old on the higher functioning end of the autism spectrum and who experiences ADHD.

Physical Health – Fibromyalgia, Hypothyroidism, Type 2 Diabetes, Sleep Apnea, High Cholesterol, and Tarsal Tunnel Syndrome.

Mental Health – Bipolar 2 Disorder, PTSD, Depression, Binge Eating Disorder.

Because I’m worthy of self-love and self-care.

I’ve spent nearly five years of hard work to reach this point. I had been a toxic person in a toxic relationship. I had severely broken relationships with my two adult children. I was so overwhelmed and depressed I was barely functional. I was so consumed with self-loathing that I hid from the world, making myself sicker and sicker, consuming all the food and media I could numb out on.

Now, I’m working on staying centered in the here and now, continuing to heal, grow, and build relationships with my children, engaging with the world and people around me, and learning how to treat myself with the care, compassion, and love I have and want to have for each person I encounter.

It’s past time for me to become the best version of myself.

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Sleep…or lack thereof

Back in September, immediately prior to the rebranding, I joined Weight Watchers (more about that later. Or you can head over to IG @humaninrecovery and see what’s been happening.)

Every week is a new topic of discussion about mindset, behavior changes, and achieving goals. I call it DBT Lite. This week’s topic is sleep.

Sleep doesn’t love me as much as I love it. It seems as if it never has…at least not since adolescence. I mean, I’m writing this at 2:45 A.M. because sleep abandoned me.

Correction: my lovely, not so little, daughter chased it away and it’s eluded me ever since, four+ hours now. Now, she’s sound asleep and I’m wide awake. *sigh*

Supposedly, not having my phone in the bedroom with me would help with getting back to sleep. I’ve tried. Can’t do it. It’s my alarm. It’s my fidget. It’s where I do the brain dump. It’s how I run my brain down until sleep is possible again.

I have horrible sleep hygiene…always have. My room is a cluttered mess. My bedroom & bed are multipurpose locations. My bed is shared with a growing, nearly 10 year old child with sensory issues and needs. So, she’s either burrowing into me, flailing arms in my face, and/or hogging the covers. Occasionally, she snores and breathes through her mouth…Her dad sent me an article yesterday which suggested an exam with an ENT could turn up some medical condition causing sleep disruption which can present like ADHD. More on that later.

In addition to clinging to me like a baby gorilla, she insists on listening to “girl music” when she’s ready to go to sleep. Read: female pop artists. She goes to sleep fairly easy once the music is going. Not me. For someone who has words constantly flowing through her brain, pop music is especially unhelpful when trying to go to sleep. Any music with words is, including what she calls “God music,” my CCM Pandora channel, heavily salted with music by MercyMe.

Then there’s temperature.

I can’t sleep if it’s warm…she freezes and turns into a heat seeking baby gorilla. I like it cool enough to want my feet under the comforter…yeah, I know, weird. The problem with that is the baby gorilla blanket thief.

Let’s see, what else?

Oh, yeah. My body & brain. I’m a premenopausal spoonie with Bipolar 2 Disorder & PTSD. If the nighttime neuropathy doesn’t get me or the busy brain, the night sweats and apparently shrinking bladder will.

And, so, I guess it isn’t that sleep doesn’t love me. It just doesn’t feel welcomed or wanted. *sigh*

The kicker is that I don’t even drink coffee or other caffeinated beverages to get and stay functional. Apparently, I’m a deceptively alive and youthful looking zombie vampire.

Yes. I’m 49.

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When life goes awry: It’s ok to not be ok

Last Friday was one of those days where the first domino got knocked down and the remainder of the day’s plans and goals crashed one by one.

I’m sure you’ve experienced something like that at one time or another. If you haven’t, best be prepared because you will.

My daughter had a MAJOR meltdown that morning – it got physically violent (she’s on the Autism Spectrum) and she wound up not going to school.

That meant I couldn’t go to the gym or pool. There’s no space or place in my tiny, overcrowded apartment for me to do anything, including stretching. It’s THAT crowded and cluttered.

I was frustrated and irritable at this disruption in the new routine of self-care by exercise. I didn’t take it out on my daughter, but I was experiencing a significant amount of resentment.

Parenting a child with special needs is HARD and I NEED the stress release of the exercise.

When there is a spike in stress hormones coursing through my body, especially in combination with other hormonal changes, a fibroflare is likely to occur.

“What’s that?” you may be asking.

I was diagnosed with Fibromyalgia 28 years ago. Symptoms include persistent, fatigue and increased pain response to anything and everything. During my most intense episodes, just running a finger across my skin feels like a razor blade.

So, I’m struggling against the fatigue to still make exercise a priority. Each day I exercise, the fatigue makes me feel like I’m moving through molasses once the exercise is done. I feel completely drained. It doesn’t help that I also happen to be an insomniac.

There are days when I fight to get the kid to school and to bed, go to the gym or pool, and, maybe, wash dishes. The rest of the time I’m sitting and dozing off.

I’m trading the energy from other things so I can exercise. But, the exercise is what helps me mentally get through the day.

In the past, I criticized myself for not getting more done, or anything done for that matter. I couldn’t let myself be okay with not being okay.

This process is showing me that I can be.

What comes after tears? Gratitude and choosing not to be insane.

First, I want to shout out and thank those of you who reached out to me after yesterday’s post. Your support and encouragement helped me make the transition I needed to be able to be functional and present for when Keith brought Luna home.

  • Betty LaLuna from Narc Raiders, one of my newest readers and encouragers as I’m finally coming to terms with the fuller nature of the relationship Keith and I have had.
  • Diana Schwenck from Talk To Diana, one of the most supportive and encouraging people I’ve met since beginning this blog two years ago.
  • El Guapo from Guapola, one of the best occasional hit and run encouragers on my list of bloggerss I keep forgetting to catch up with.
  • James from Morning Meditations, one of the most grounded and grounding spiritual seekers I’ve been blessed to meet on the interwebs.
  • PurpleMary from My Electronic Jukebox, whose eclectic musical reviews and personal perspective on the music she shares has been very interesting and inspiring to me personally.

Each of you contributed something different in response to what I posted yesterday, and each thing helped me in some significant way, so I just wanted to honor that you took the time and effort to reach out through your keyboard to touch my heart and soul and contribute healing and affirmation into my recovery journey and process. I am so very grateful for the internet, WordPress, and each of you and all the others who have been part of my journey over the past couple of years.

Seventeen days ago I made the decision to leave Keith because I can no longer live in an environment filled with tension, anger, and continual conflict. It is not all on him. My contribution to the dysfunction is that I have reached the point where, regardless of whether I believe he will have a negative reaction or not, I automatically repress and suppress my emotion. This worsens the depression I am already experiencing due to the seasonal triggers of cold, wet, dark, weather. This is also the period, starting in late September/early October, through December 31, when a crapload of anniversary/holiday triggers for the depression symptoms occur, in a continual sequence. Things that I have never, truly, resolved, despite believing I have done:

  • My mother signing guardianship of me over to relatives, then leaving the state to move across the country, back to Texas, when I was 12. Technically this probably happened in late July or early August, but it was definitely the precursor to the rest of what followed.
  • The anniversary dates of her birthday and death day, which occurred the same year. Her birthday is in October, the 19th I believe. Her death is either a couple of weeks before that or a couple of weeks after. I never knew the actual date until three years ago, and cannot readily remember it now, though I obtained documentation
  • The precipitating event between my guardian and myself, after a two year period of additional chaos and instability, which triggered me to run away with my first “adult relationship” abuser at the age of 16, occurred shortly after Halloween.
  • My son’s birthday on November 9th, when I was 17, 27 years ago. The trauma and drama which happened leading up to his birth, the delivery itself and the subsequent hospital stay, followed by the homelessness and instability of the next two years, was more affecting and devastating to me than I have ever allowed myself to acknowledge or believe.
  • The anniversary of when his dad almost killed me, 25 years ago on December 12th.
  • The anniversary of the marriage to my son’s father, which has never been legally dissolved, 27 years ago, December 31st.
  • Every “family” holiday with the reminders of my fractured family relationships, past and present.

Every interaction with Keith, and the other people I love and care about but have strained relationships with, are like pouring multiple flammable liquids into an uncontained space near an open flame. The resulting explosion is inevitable and unavoidable. Even if you aren’t close enough to get burned by the flames, the concussion wave from the explosion itself is enough to knock you off of your feet and leave your vision blurry, your ears ringing, and your mind disoriented.

I’m a walking, talking, living, breathing container of flammable liquid and Keith is the open flame. I’ve also been a moth drawn to the flame . . . a moth so inured to the toxicity of the environment it has been through all of its life stages in, that not only does it not recognize the potential harm of the flame it’s being drawn to for itself, there is zero recogniztion of the conflagration it will cause to everything around it, just by touching wing to flame.

Now comes the hard work of more recovery and healing processing, for myself and for Luna. Part of that means learning how to let go of feeling responsible for and actually leaving Keith’s process up to him to take care of, or not, according to his choice and capacity. It also means learning how to do that while navigating the logistics of living in the limbo land of unofficially sharing custody of our daughter and our lives are so enmeshed with each other’s financially and materially, without any legal clarity for any of it.

I know that as long as he remains as he is and I as I am, we cannot share the same living space at the same time. It’s unhealthy for all three of us, especially for Luna, despite the fact that she definitely asks him where I am and tells him she misses me and vice verse. The fact that she’s had significantly improved behavior at school after the first week of our separation and that the child care person who watched her while I was in a group session today, who watched her in the same center the day I left, let me know there was a sigificant difference in her responsiveness and cooperation between then and now, tells me that I have to stay the course I’m on.

I am resisting the panicked voice of my inner control freak who is screaming at me that I have to go out and get a job, RIGHT NOW!!! That same control freak is also joining voices with the fearful manipulator to tell me that I HAVE TO cut him off, cut him out, file for custody, apply for public assistance and do everything to get completely independent from him ASAP. I’ve done these things before and wound up right back in this situation. I’ve decided to do things differently this time. After all, isn’t the definition of insanity doing the same thing over and over again and expecting a different outcome?

This time around, I’m going to learn to be grounded, in this present moment. I’m going to reach out and ask for the help I now understand I need, not just to “show” that I’m doing the right things, but also to actually grow and heal and not just look like I think I should look to make everyone around me believe I’m okay, but to believe inside of myself that I’m okay.

It’s only been two years? It feels longer.

Apparently I first signed up to write this blog two years ago on December 15, 2011.

Going from memory, without rereading what I wrote back then, I know I was in a very sad and dark place. The relationship with Keith was volatile because of his anger and my depression/pain issues. The relationships with, Marco, my son, and LaLa, my adult daughter, were strained and virtually non-existent. I was deeply depressed and full of anxiety about Luna and her future.

The more things stay the same, the more they change.

Most of those things are true today. Again. Still.

On the other hand, other things are true as well.

One true thing today, which was not true then, is that I do not believe I am alone. I’m not alone in my pain and I’m not alone in walking through the painful and difficult things I am going through. While traveling this painful and rocky path, I am experiencing companionship. This companionship is showing me empathy and compassion, humor and understanding, cameraderie and commiseration. Traveling this road with companions means that I am learning to be there to support others along their journeys on the twisted and treacherous paths of this life, as well. I am discovering that, in addition to the bumps and potholes, beauty, laughter, and fun are also possible on this journey. Despite how it has often felt, there are bright and beautiful sun breaks in the grey and gloomy clouds. Vibrant explosions of color bloom in unexpected places and break up the dank and dismal landscape I believed I was traveling through.

This is not a silent or lonely road, though I may have been a silent and lonely person on the road. I have discovered that I was carrying my own isolation around me. I had grown or built up protective walls which surrounded me on all sides. I was a woman living in an opaque bubble, through which the world I viewed and experienced appeared very distorted, unfriendly, and ungiving.

My world is being renovated. I am under reconstrution. It’s a dusty, messy, painful process. The project is taking much longer than I allowed myself to believe it would take. I’m learning to live in the midst of walls being knocked down and to breathe through the dust. I’m beginning to see what the end result can be, and it fuels my hope.

I am grateful.

~ Where I am is enough. For this place I am grateful.

~ What I have is enough. For this I am grateful.

~ The time I have is enough. For this moment I am grateful.

~ The people around me are enough. For them I am grateful.

~ I am enough. For me I am grateful.

~ Above everything, God is enough. For this I am grateful.

A handout received from Bridge City Community Church's Marc Schelske on 11/30/13

A handout received from Bridge City Community Church’s Marc Schelske on 11/30/13

Normalizing what shouldn’t be

Something I’m beginning to realize over the past couple of days is that I’ve been practicing a form of denial, normalization. This is probably not a surprise to those who may have been following this blog for the past couple of years.

I’m sitting in the family room of the couple who have opened up their home to Luna and myself. I’m trying really hard not to cry as I see photographs arranged on the walls. The ones in front of me depict the many places, throughout the world, the husband and wife have been fortunate enough to travel since they got together thirteen years ago. Below that cloud of snapshots, is a U.S. map. It’s laminated and has a little black, dry-erase marker attached to the lower right corner. Several of the states are outlined in that black marker, representing the states their two daughters have visited.

This is not a show home. It’s a lived in home; clutter free, but not sterile; orderly, organized, and clean, but comfortable.

There is an Elf on the Shelf who gets moved around at night after the girls go to bed. The living room area is the playroom. The old carpet was ripped out when it became too worn. Instead of putting down more carpet or other standard flooring, they put down material that the girls were able to draw, color, and be creative on.

Luna is thrilled that there are three cats, one of whom visited us last night, when I couldn’t sleep and woke Luna up. So, Luna was awake in the middle of the night, fixating on cuddling, petting, and loving on a fat, black cat named Soba, with a loud purr and a determined presence. It only took an hour or so before the cat tired of the attention and demanded to leave, then Luna lay down and went back to sleep within another half an hour.

Now, don’t get me wrong. I absolutely know that not everyone who I might consider “normal” gets to live in what seems to be a real-life movie set for Lifetime.

The pictures and knick knacks are cherished memories, displayed as reminders of the good times and important memories of the moments in the lives of their children and their coupleship, their individual and unified histories. The order and organization which exists seems to be a natural part of the ebb and flow of daily life.

No one is “stressing” when the gloves are missing and take a few moments to locate, at the bottom of tote bag being carried to work. When the Tom cat dirties in unacceptable areas, bedding has to be laundered, and the room has to be deodorized, there are sighs and chuckles of frustrated acceptance instead of grumbling, snarling, cursing.

When one spouse is receiving texts, the other isn’t questioning who it is they are communicating with. When that spouse chooses to share the frustration of what the relative who is texting has experienced in a situation in her life with her spouse, no critical, insulting, labeling statements are being made about the person on the other end of the story who made the mistake and created the problem.

How many people live in this kind of normal?

Will I ever be able to live in this kind of normal? Will I ever be able to do this for Luna?

This was the kind of normal I have seen in various homes with various other families over the course of the past 25 years, since my two year old son watched his father almost break my neck, on December 12, 1988.

I’ve never understood it. I’ve always wanted it. I’ve always wanted it for my children. I never thought I could achieve it for myself or for them.

I thought it’s what I would get when I got together with Keith. Partially because he came from, or I thought he came from, the religious/spiritual subculture that I thought produced this kind of normal. After all, on the surface, this is what I thought I saw when I looked at his family home.

It’s the kind of normal I kept trying to show my son and oldest daughter when I chose the in-home child care providers and engaged in the different church communities during their childhoods. It’s the kind of normal I saw in the man and woman who became my adult son’s legal parents last year, when I first met them back in 2003 and wanted for him to experience when I asked/supported his request to live with them during the last year and a half of his high school years. It was the kind of normal I knew he would need when he transitioned out of military incarceration two years ago and why I kept them apprised of his situation and made sure he had their contact information and knew they wanted to hear from him.

It’s the kind of normal I was much less successful in connecting LaLa to.

The kind of normal I’ve lived in, learned, integrated, and perpetuated is a normalization of stress, trauma, anger, and conflict.

Over the past couple of days I’ve heard the term, trauma brain and been told it’s very likely I experience PTSD and that most of the psycho-social and behavioral difficulties Luna has been experiencing are a result of being conceived, gestated, and born into an environment of stress, trauma, anger, and conflict, which she has spent the first five years of her life living in.

Abba,

I don’t want this kind of normal anymore, for me or for my children. But, I don’t know how to make choices and decisions for any other kind of normal. I need help.

Help me. Please.

Amen