Tag: fibromyalgia

Categories
Convention Attendance Health Too Long For Twitter Whining

Talk Like an Open Book: My Walker

I planned to post this two and a half months ago. I wanted to post it before Balticon for friends that would see it in our room, as warning of sorts. I know my haircut seemed rash for some reason, after years of talking about cutting it all off. Here’s some warning on this one for future visitors to #TheSeuss (our silly nickname for our home.)

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My General Practitioner prescribed something last winter(? Spring?) that I am only now finally coming to terms with enough to post publicly — a walker. Even after the daily struggles that I described for basic self-care, let alone toning and cardio and strengthening exercise, the determination somehow still felt like an accusation and led to a variety of ridiculous thoughts. I joke about living a #VealLife, but denied the need for a walker, in spite of:

  • Using a cane/sturdy parasol for years. They either compensate for dizziness; strength; pain management; removing cob webs from my sometimes slow moving brain; and hooking stuff to pull toward me when necessities are slightly out of reach.
  • Using braces and wraps for a decade. The trigger for their use was over a decade ago and, really, it took a particularly long time to recover from a sprained ankle while dizzy on stairs in December of 2012. I’m now also alternating compression gloves (also a gift from Heather, they help so much!) and various braces to help with hand joint pain (the pain is similar to broken bones, at its worst) and carpal tunnel. They are necessary for any keyboard work, chores or for holding our sweet Little Bear.
  • For years now, when traveling on public transportation, I have been using all the disabled services available. I feel I’m entitled to since I’m also traveling with my handicap placard. Whether it’s seating on a bus or a requesting a waiting wheelchair after getting off of a plane after hours of my joints stiffening at high altitude (a particularly nasty combo). I’ve literally gone from running in 5k’s and training for a half-marathon in 2011, to now simply hoping to survive the luxury of travel beyond a 3 hour radius. (But that’s a whole ‘nother post.)
  • My refusal of scooters as an option to the extent that I have long told loved ones that if they ever saw me in a scooter that they have to knock me out out of it and make me wrestle my way back onto it, to stay strong. Meaning, I could use it, but only when I HAD to. And I had to be ready to demonstrate that I hadn’t given up the fight, not yet. And if I had given up, it would remind me that there still is a fight to be had, every day.

But… a walker?

My heart sank, as it felt a bit like going backwards so many more steps than having to stop running and then regular cardio exercise. But she explained that it would make me more able to move around with the further stability for my continual dizziness as well as balanced support for my lower body. For years now, I am continually switching sides because of the flare up cause by stress on one side or the other, for using the cane. It would lead to more movement, knowing I was supported no matter which symptom had me debilitated, or chose to hit me while crossing a room.

Reminder: None of my illness/conditions are degenerative or terminal. And I only really remember telling a handful of trusted friends, venting fear of what it might be signalling – the next phase in body FAIL. I was already lost in the maze of options of which type would be perfect for me and was frustrated and venting to Heather, an extremely supportive friend, who literally jumped in at offering not only moral support but … a brand new walker. It was one of my first conversations and I was griping and whining, I don’t want to use one and I can’t afford one anyways and making all the excuses possible not to sink to that use.

Heather said that there was an unused walker, a basic one with the tags still on it and everything, back at her home for a family member that ended up not needing it and they’d just never gotten rid of it. Knowing that the lower end was $50+ after a previous Amazon session, I gratefully accepted the gift after the briefest of hesitations. It happened so fast and was so generous, that it made me accept the need and begin using it. In hindsight, I guess I was ready to use one before I knew it.

Boosters at the ready.

I set it up in our bedroom and then didn’t touch it for months. I had to stare it down and get used it, and to measure if I thought it would help move more.

Then, I spontaneously put it next to the bed one night last fall after laying in morning “stores” (breakfast, drink, pills, cane), in the hopes that maybe the first and most painful steps of the day would have me, at least, better supported than the cane gave with the joint pain I had. I just dove in and didn’t think about what it meant.

It was the difference between crawling to the bathroom and walking, granting much peace. Yup, crawling. It’s that bad and you should know that about me. This is me, now and I use it throughout the day in our bedroom.

In the months since then, it’s been a great relief to have it, next to my bed, every morning. I haven’t left the top floor of our home with one, yet. I only recently have allowed myself to assess and decide I need to pass that milestone, too, which means getting a 2nd one for the main floor. It’s where much of my Daughter and Grandson spend the daytime hours and where I’m of my most use as a human baby monitor, when I’m able.

And as a few very kind people know, I had it at Balticon. There are some folks that kept its presence private and secret, after I voiced my embarrassment, or didn’t have to, and they have my thanks for their discretion. It did make the difference to me getting out of the room or having any productivity in our room when I wasn’t able to leave it.

The following week, I asked my Rheumatologist about the weight of it and differences, after she was so happy to hear my motion has indeed increased with the use of the walker in the bedroom. She agreed that I need something lighter because of my Fibromyalgia “hot spots” for the main level of the house making it more of a challenge to use. And because on days I’ll need it, I sure as hell wouldn’t be able to get the one I have downstairs without aid and I’m shopping for a wheeled option for downstairs. Sexy, I know, but better to know before you visit.

Our oldest son and wife are living with us, and they and my husband are kind to me and I haven’t had to make that move, yet. For that, I’m exceedingly grateful (although not nearly good enough at showing it), because it also allows me to “watch” Little Bear from the comfortable nest of my bed/desk/dining table/sofa in our bedroom. Chooch or Gal are always on the same floor with me, so if any needs arise that I can’t cover still have him safe, but they are free to roam.

I’m the baby monitor, when I’m able to be one, watching him while he sleeps if nothing else. Lifting him, now at 13.3 pounds and two months old, is a painful struggle, but the Baby Bjorn helps, although rarely after getting him in it with assistance. Otherwise, I only carry him a few feet at a time and never on the stairs. Ever. I’m terrible on the stairs now.

Now, as was offered by a dear friend for my cane when I first got it years ago, I could dress my walker(s) up and make it snazzy, but I’ve decided I like the medical/functional appearance of it. It’s a constant reminder that it’s not an accessory, it’s a tool to strengthen my body, and to be used only as needed, not to the extent of my tendency recently towards laziness from fatigue.

I use my current, hefty and solid gifted walker next to my bed, for stretching and light exercise, balance and strength boosting, as little as it is. It’s not as much as other friends have/are doing in the aftermath since brother-from-another-mother P.G. Holydfield’s passing last August. But I’m still fighting where I can, damn it. I have realistic goals that I aspire to so I can make them and feel empowered to aspire to more. That’s my process.

And with all the added stress of moving in difficult times, weight gain has hit this Future Fat Granny. I’m doing ok with little changes and minimizing calories and increasing nutrition in my sustenance (smoothies for TMJ relief). But motion is still so painful that my vascular is not as cardio as it once was. Or whatever.

I’ve got goals for this year, and I need to lose some of the grief and uber nesting weight gain and get as strong as many of my friends are getting, as my body allows. There won’t be a race, but there will be health improvement.

Okay, so, yes, I actually have challenged a few folks to a race to age 100, including my former M-i-L on my Son’s wedding day. She has a lead on me, which she pointed out, and I told her something along the lines of hoping I was there to celebrate it with her. Sincerely. She’s a wonderful grandmother to my sons and I’m so grateful for that.

April 7, 2015
Rushed hospital photos by professional photog. Epic cuteness, and here’s my fave with us.

The health goals are there, and post-Balticon 2015, with the last memorial we have promised to throw for our P.G. is done. So many planned things were not done, but that was because I aimed too high. Those things are stashed away in the hopes we (SpecFicMedia.com) get to throw next year’s New Media Party.

Lookit, with multiple setbacks, thanks to the chaos of our rental home and such, I didn’t go as strong into grand-parenting as I’d hoped. But I can get moving a lot easier with the walker, and once I’m in motion, I keep going until I can’t anymore. Which is, admittedly, not very far, but as satisfying as I can get for now, newly dedicated to enlarge my route beyond the bedroom, first floor and home.

The walker has improved my motion to be less of a burden, and so my new friend stays so that I can try and keep up with all the wonder and surprise that the future holds.

 

 

Categories
Friends Movies Too Long For Twitter

Spoilers, Sweetie – Guardians of the Galaxy and My Communication FAIL

I dunno if anyone else does this, but do you identify with anyone in Guardians of the Galaxy?

I see Naughty Bear as the Star Lord, partly because of facial similarity. (Yes, Star Lord is THAT handsome.)

That kind of thing. Do you do that? If so, who do you most identify with?

For brief reference, I tend to see movie team-ups broken down into the necessary gaming group requirements. Using City of Heroes MMORPG (RIP) as my examples:
a tank, a blaster, a controller, a healer, and a scrapper. (I may be missing a few and don’t know the City of Villains versions, but do you get what I mean?)

For myself, I am Groot. Because of his creaky body that could sometimes do cool stuff under extreme duress (and pay for it later, lol) , his limited speech (mine is self-limited due to neuro stuff) , his need to do other things that would cause him harm if it would save or help another to survive (oi, the bruises I came home with, lol.), my need to make circles around ones that I love and include sparklies was almost too much to bear at the theater, upon my second viewing. And so on, with my empath need to identify with an empathic character.

Also, after much self-examination, and what the last three weeks in August was, I find I was dropping my filter for brevity in urgent moments and then almost disappearing as I “translated” (as Pamela then called it).

I am having difficulty filtering now. It started over the summer. And in August it was ripped off my face. There was no choice. I have less tolerance for bullshit, and I don’t mean that in a judgmental way. I mean it in a physical condition impacting way.

Emotional stress triggers physical stress in my f***** up body.

When you add the lowered filtering, which LITERALLY only appears to be working on a fairly good level when I’m around kids, to the many many many many communication difficulties I was having at times, which many people can attest to (sadly), what I was putting in the public stream sounds to be gibberish and scared some friends, I may as well have been simply saying “I Am Groot.”

For that I am both sorry and humbly grateful for your concern.

#FuckCancer #BecausePGH

Categories
Family Friends Health Whining

Health Update in Three Parts: Two

Picking up where I left off in a previous post:

Of course, this was life-changing for me, because I was experiencing things and learning a lot that went unnoticed before, much of it damaging for my health or of loved ones. I’ve been able to really explore those, without the luxury of therapy because of financial reasons, but I’ve had successes and am again finding “my voice” again, after embarrassment and shame at my situation was the microphone I communicated through for so many years.

I’ve made great strides towards my emotional growth in overcoming the depression that has been worsened since my debilities and other health issues that prevent me from being able to provide income to help my family during an extremely expensive time. (College, high school senior, high school freshman, plus too many other things. You get me.) Much of this I credit to Chooch, who supports me unconditionally, and then makes sure I catch my bullshit when I’m blinded to it.

All this even after I learned about “Counting Spoons,” but have only recently been able to put them into practice and stand by the boundaries I’ve set with others and with myself. If it’s negative for me or those I love, I try to understand it and heal it. If I am unable, I move on, because I recognize as a human, I cannot fix everything for everyone, regardless of my overwhelming need to.

I evaluate, I learn, I adjust expectations (to a point, and in scale with the same considerations granted to me on an individual basis), verbalize my line in the sand long before it can get crossed and therefore, is not my fault when people trash it and my trust in them is lost. People have themselves to watch out for, after all, and to assume we have mutual goals and want to get there the exact same with others is the definition of insanity, I’m beginning to believe.

Although much of this is new to me, it isn’t new to this blog. I actually posted about it over a year ago, and what I called “hope fatigue.” I didn’t even remember writing or posting it until I searched for the Spoon Theory link, but I’m happy to say that I’ve continued following the beliefs listed there. But again, I don’t remember writing or posting it. Fascination doesn’t begin to cover it, but if nothing else, I think that it also helps to demonstrate my neurological state then and now.

I’m shocked as I read it at the number of errors in the post (left uncorrected, because this blog is my memory bank and this matters to me), but primarily because I’ve wasted so much time learning and re-learning (and re-learning, based on some of the 40+ posts sitting in the Drafts folder) the same lessons, over and over and over and over with the same issues and people.

So BAM! While I’m smack in the middle of facing and accepting my handicaps/disabilities/Health Blahs, I’m hit again with more knowledge on how dumb my dumb brain truly has been and how excellently (HA!) it performs when being that dumb.  I am constantly reacting and off balance, not knowing if and when I could live this life by my standards again, rather than compromising with every person that crossed my path, whether I was being obviously taken advantage of or not.

I also chose to embrace my health FAIL and to test those limits, then define them, then accept them and adjust my expectations of myself, with the same kindness I grant others, regardless of how they treat me or my loved ones. We are human, after all, and each of us are flawed, and it’s really pretty simple, in practice.

The testing process was immensely humiliating, in front of friends and family. I kept over-extending myself while testing limitations and failing, then picking up the pieces, examining them again, discarding what didn’t work and keeping what did, and tried again. But all of it was with the feeling that I was on the outside looking in, rather than a person even involved in the interactions. Everything was muffled through the meds and Fibro Fog.

So, with Nucynta, I’m happy to report that I’ve (we’ve) benefited already from that effort, just since the first of this year. Yay! But I also truly discovered how lost I was in the medication, far far more than I ever thought. *hiss*

Sadly, my body simply can’t tolerate the Nucynta, or at least it in combination with other medications. After my visit a few weeks ago with my Rheumatologist, I’m now off of it with the next script. The negative health effects were too drastic and the fatigue and weakness had worsened. It did provide a measure of pain relief, but not enough for what my body went through trying to shake myself into movement. It felt literally toxic and I had constant nausea and an inability to eat more than a few bites of anything, therefore my blood sugar was in turmoil. Unacceptable with summer and my son and nephew visiting and the other awesome things we have planned!

More in the final post, Act 3.

Categories
Too Long For Twitter

Definition I Didn’t Know: Mediatrix

 

My therapist suggested that I Google the term “Mediatrix,” after we had yet again discussed my exhausting and irrepressible compulsion to make sure all the emotional needs of the people I love are being met (A clue for Dear Readers as to one of the reasons I’m in therapy- I’m frakkin’ exhausted and overwhelmed.), easier before the Health Blahs (as I call the litany of diagnoses I’ve collected: Vestibular Migraines, TMJ (I think I cracked my recent crown thanks to jaw clenching, yay!) , RMSF and newly added Fibromyalgia). I tend to have near-complete disregard for what my needs are, both emotionally and physically.

At Therapist T-Pain’s mention of the word, I perked up and proclaimed the title “Mediatrix” as mine with the definition unknown, based on my lifelong love of all media and recent experience in the New Media frontier. Plus, it sounded geekily exotic!

Here’s the actual definition:

me·di·a·trix

[mee-dee-ey-triks] (Note: Pronunciation focuses on the word ‘mediate’, not media as I initially thought.)

noun, plural me·di·a·tri·ces  [-uh-trahy-seez, -ey-tri-seez] Show IPA, me·di·a·trix·es.

a woman who mediates, especially between parties at variance.
Also, me·di·a·tress, me·di·a·trice  [mee-dee-ey-tris] Show IPA.

Origin:
1425–75; late Middle English  < Late Latin mediātrīx,  feminine of mediātor mediator; see -trix

Usage note
See -ess, -trix.

Dictionary.com Unabridged
Based on the Random House Dictionary, © Random House, Inc. 2012.
Cite This Source

I dunno if I think I am a mediatrix, but I guess it’s something to ponder. I have spent a lot of my time playing the damned devil’s advocate, after which my attempts at objective honesty to provide all possible options, usually gets the emotional crap beat out of me at some point in the future. Seems kind of like I have created a compulsion that puts me in the middle of all disagreements, which is pretty dumb for somebody that really just wants to embrace my loved ones, enjoy life and giggle as often as possible.

Nowadays, the medications I take seem to be doing their intended job in sometimes minimizing some side effects, but the full-time fuzzy brain make it harder for me to tell when My Beloveds need an extra little help or lift somehow. Even if I can pick out the shape of their need in my sometimes extremely foggy haze, I am at this point mostly useless to help in ways that Make A Difference, which is actually T-Pain’s goal, although not specifically why I take the medications I do.)

It’s still a particularly difficult with the things going on in loved one’s lives currently, as so many are raw and hurting in some way. Especially, as a bonus to anything the recipient feels, I find it cathartic for myself when I am able to do the little kindnesses. It alleviates my fear that I don’t contribute enough to the world to justify my place in it anymore, and results in feels shame and happiness at the same time. *sigh*

End result, I am taking on less stress as I am meant to, but I miss being there for my friends when they are in need. And then I feel guilty or shamed either way.

I frequently remind myself, now that I have self-banned myself from driving (medication side effects, primarily), that now I officially am The Passenger. The Passenger has input when allowed, but little control. It’s freeing and terrifying, all the same. The new mantra is shorter and reminds me that it’s not a choice, but simply how my life is right now and is a reminder  embrace the inherent freedom and let go of the guilt and shame of not helping others.

Edit – this (June 9) was the second session in 2 days. Now a bi-weekly patient, thanks to my progress! But things have been “exciting” and it’s dredged up some deep dark issues for me.

2nd Edit: I’m now a weekly patient again (June 20). *sigh* It was nice while it lasted, but I am in need of  extra time with all the stuff we have in the air, balancing expectations (ours and others) and maximizing fun time with the kids, while (reminded of need today) making sure I don’t overdo it. HAHAHA, I love that she *still* thinks I can stop myself. Ex: I worked myself so hard the last two weeks getting ready, that I fell asleep early and missed the end of LT’s first night here. Epic Mom Fail.

But tomorrow brings the first official sunburn of the season as we hope the weather lets us head to a local pool. Woohoo!