Fibromyalgia

I can see clearly now…or not

I’ve been using reading glasses for a couple of years now. My eyes have been getting more and more blurry over the past several years. Yet, every eye exam results in a very mild prescription, for a complex combo of issues which include astigmatism and far-sightedness.

I haven’t been able to afford glasses. The last pair I got were covered by my church…up to the cost of a single lens prescription. The progressives were going to cost an additional $200, which I had no way of covering. So, I chose the middle…not thinking it just meant that I was getting what I basically already had without glasses. Silly me.

So, yesterday, I had the opportunity to get an eye exam that will result in a good pair of prescription glasses, sponsored through a partnership between Dress for Success and Myoptic Optometry. For the first time I can remember, I found out the true reason for my blurry vision, which fluctuates in degrees.

Dry eye Syndrome, aka Chronic Dry Eye.

Yay.

Another health thing that won’t be going away.

Fibromyalgia…✔️
Diabetes (2)…✔️
Hypothyroidism…✔️
Bipolar (2)…✔️
Depression…✔️
PTSD…✔️
Chronic Insomnia…✔️

and now…Dry Eye Syndrome…✔️

I can’t really complain. I mean, any one of these things could be so much worse. Plus, there are so many people going through things and dealing with much more major issues.

It’s just that the combination of these things is collectively overwhelming… especially if you factor in the depression’s ability to make everything else seem and feel worse than it is.

Add a night of the worst insomnia I’ve experienced in awhile, and I’m hurting and exhausted. I’ve got a ton of stuff to get done today and all I can do is lie here and be a lump.

Nap time before 9 am.

Thanks for “listening” to me whine. I’ll write something more interesting next time…maybe.

Ramble on

A lot’s happened over the past two days and even more is happening today.

On Monday, I attended the orientation session for the Health Careers NW study. It’s a federal research study to determine if providing vocational training in healthcare fields and employment support for low-income people receiving public assistance can help them attain a greater degree of financial self-sufficiency…uhmmm yeah!

In order to move forward with that process and when I, eventually, obtain a job, I’m going to need to show my Social Security Card. I don’t have it. Rather, it’s (hopefully) lost and buried somewhere in the depths of a very large box full of boxes and bags of papers…and by very large, I mean a moving box sized to carry several oversized pillows and lightweight items.

Trust me when I say there isn’t enough time or physical space for me to go through it and continue doing the job readiness, mental health recovery, and physical health activities I’m doing.

So, the Employment Specialist who has been working with me through the Social Security Administration’s Supported Employment Demonstration (a different federal research study to determine if people who have been denied Social Security Benefits for disabling conditions can successfully be transitioned back to employment with Employment Supports, Mental Health Case Management, and Physical Healthcare Supports…uhmmm yeah, again!) has been helping me get to and from some of these employment readiness activities I’ve been doing. She went to the orientation with me.

We decided to try to get to a Social Security Office afterward. However, she was on a tight schedule and had already agreed to take me to a store where I could exchange my empty 5 gallon water bottles – it’s too hot to go without decent water. The first place we went was out of water. So, we had to go to a different store.

While walking into that store, I tripped on a curb and went down on my left knee, then rolled onto my back. I managed to avoid going down too hard, thankfully.

By the time the water got replaced, it was too late to go to the Social Security Office. So, we agreed to go Tuesday…fully expecting at least an hour wait. Lo and behold, we got there and I had less than a 20 minute wait! 😮

I had tried to sign up for the NCRC, which I talked about here. However, I couldn’t just sign myself up. So, I called and spoke to the gal who’d led the Health Careers NW orientation on Monday. Now, I have four hours of testing to do today.

Not looking forward to it.

I tried to do math prep yesterday. I realized that geometry will kill my math score…which will kill my overall rating, since the lowest score determines the final rating.

The perfectionist in me is quite unhappy with that thought. However, the realist in me knows what’s what and that, ultimately, geometry is not a part of my career path and that my other abilities will speak for themselves when the time comes.

So, I decided not to make myself crazier with the math prep.

Later, I had a Volunteer Orientation at NAMI. NAMI is the National Alliance on Mental Illness. It’s a nationwide, peer driven organization offering support, education, and community engagement for those experiencing mental illnesses and their families. Since I want to get into peer work, this is my next logical step.

There are several opportunities for me here: teaching classes, as long as I’ve already taken them myself; Community engagement – speaking at schools, organizations, and businesses about my lived experiences as both a person living with mental illness and a parent/family member of others who have experienced mental illness; operations support, which will have me exercise my office and writing skills.

I start next week. My first volunteer project will be working on updating the local resource guide. The current one is two years old and things change.

I’m really excited about this next phase.

On my way home, I experienced another knee injury. I’m afraid this one was a bit more severe than the first. I’m really hoping that the pain subsides without me having to make another medical appointment.

What happened?

A slightly out of it man got on the bus, chose not to sit down, and neglected to hold himself steady. So, when the bus started to move, he came toppling down onto my lap like a felled tree, his shoulder gouging into the top, inside of my knee, above and to the side of my kneecap.

That’s the leg with the nerve entrapment in my foot and the same knee I’d fallen on the day before. So, now I have some radiating pain going down into my foot. Yay.

Since I’m hurting, sleep is elusive. Which means, I’ll be going into my tests sleep deprived and in pain.

Wish me luck.

I got nuthin’ – free write

I had no cohesive thoughts about what to write for today’s post, day 16 of The Ultimate Blog Challenge. I know daily prompts are emailed, I just don’t get them, for some reason. So, what you get is a brain dump. Continue reading at your own risk. I have no idea what’s about to come out.


I’m on new meds…rather different meds. At least I’m supposed to be. I keep forgetting to take the iron. Liquid iron is an interesting thing. I need to figure out where to put it to where I’ll most likely remember to take it.

Or, maybe I forgot to take it last night because I subconsciously don’t want to take it because I was nauseated most of the day after taking it for the first time the night before.

Anyway, different thyroid med, different iron med, and brand new vitamin D. These changes are supposed to help mitigate the fatigue I’ve been experiencing.

Sleep would help with that, I’m sure. But, 30 years of disrupted sleep catches up to you.

Yes, I have sleep apnea…but not 30 years ago. Yes, there’s often a 10 year old Cling On, in bed next to me…but not for the first 20 years.

I was diagnosed with fibromyalgia when I was 20, and one of the symptoms the doctor used to identify it was sleep disturbance.

My hands are tingling from holding the phone…yes, I mostly use my phone to write my blogs. That’s because I usually write in the middle of the night, when it’s dark and I can’t sleep, but the child who cannot sleep alone is asleep next to me. Also, for about three years, I didn’t have a computer. Now that I have one, I forget about using it a lot.

Anyway, the numbing and tingling has been happening for as long as the sleep disturbance has been a thing. Yes, I have diabetes, but, I wasn’t even pre-diabetic when I was 20. It was another symptom used to diagnose fibromyalgia…as was the fatigue, and seemingly rootless aches and pains.

My research found that often people with a history of trauma developed it. I also found out that, at the time, it wasn’t usually diagnosed until someone was in their 40’s. Of course, I didn’t do the research until 10 years after the initial diagnosis.

Why? Because I was a single mom, in college, trying to change my life and my destiny. So, I forgot about it. Poor memory is another fibromyalgia thing. Except, it’s also a trauma thing.

Something I’ve noticed is that my fibro symptoms have greatly diminished over the past five and a half years, as I’ve been in therapy and actively working on my mental health, including getting a diagnosis of and getting treatment for PTSD.

I wonder if, in my case, maybe the fibromyalgia is primarily trauma-based. I know that isn’t always the case for everyone who is diagnosed with it. I mean, I’d experienced plenty of trauma by the time I was 20: sexual, emotional, psychological, and physical. It wasn’t all at once and it wasn’t the same people for each kind.

It makes me pause and question if I had been diagnosed and treated for PTSD back then, would I still feel like a mental and emotional basket case most of the time. I mean, what’s past is past, I know. I’m just curious if there’s a connection between trauma and fibromyalgia, then couldn’t doctors screen for trauma and refer for mental health services.


Ok. I didn’t expect that. Now, I’m sleepy again and dozing off. So, I’ll close for now.

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.