CRPS – A Balancing Act

Posted by twinklev

It’s NERVEmber! November is Nerve pain awareness and Reflex Sympathetic Dystrophy/Complex Regional Pain Syndrome Awareness month.

I attended the iPain Summit yesterday which was streaming live from their Facebook page-

https://www.facebook.com/iPainFoundation

https://internationalpain.org/

I enjoyed.

Yesterday was the 5 year anniversary to my husband’s 3rd heart attack, the 4th was 11 months later. Reflecting, I was in constant fight, flight and freeze. This illness directly impacts the fight flight stress response alteady. Trauma after trauma. I was also attempting to recover myself from my last suicide attempt which was earlier that same year in 2017.

That year, even though I was still mentally unstable from various happenings of 2016, was the beginning of healing.

I’ve made the journey without Healthcare and for the last few years without the use of my Spinal Cord Stimulator, and also without self medicating with alcohol. It may sound as if I’m complaining,… it’s been hard, and it hasn’t eased up. I can’t even talk about some of it, which means I’m forced to carry those things, and constantly divert my mindset to something good. Instantaneously.

One of the topics presented at the iPain Summit was Caregiving. I’m both a caregiver and a…

I’m not even sure how to refer to myself because I’m not a patient anymore. Even when the pain communities refer to us as CPP’s, ugh, but wait chronic pain person works for me instead of chronic pain patient. Woot!

Nah. Still doesn’t work. The ussumption would remain. Not all of us are patients!

Every last aspect of my existence must be balanced to be able to lay my head down at night and feel blessed to have ended another day ok.

I was listening to Ken Taylor speak on caregiving while preparing our dinner for the evening. I cook all our food. It’s all homemade. Heart healthy as best as I can for my husband.

It seems and feels like it takes me all day and if I deviate from my daily routine in any way it worsens my overall experience.

My Facebook memories reminded me yesterday that my Narcolepsy diagnosis via sleep study was 10 years ago. That’s been a mission of it’s own.

When Barby was presenting I had propped my phone under my lil table top Xmas tree that I have on a shelf and got a 10 minute stationary walk in. It was a walk n watch. Ha.

On Saturday I tried to attend a crps support group meeting. I just don’t understand Zoom. I attended another time, audio only, and could at least partially participate. I was trying video this time, but couldn’t get the audio to work. I couldn’t figure out settings to enable it. Then I crashed the phone twice and didn’t try a 3rd time. Learning disabilities.

My husband installed the Zoom app on his phone just so he could help me learn to navigate for future use.

We’re each others Caregivers.

I’m home alone much of each day. He leaves for work at 5:15 a.m. and if on time, he works until 2:30 p.m. Dinner is usually served by 3:45 p.m.

Sounds nuts to some, I’m sure. And that’s perfectly fine. It’s part of my balancing act to have dinner ready early. It’s routine.

It’s all a balancing act and I’m exhausted. I’m not always able to differentiate mental or emotional fatigue from Narcolepsy and other sleep disorders, yet the body fatigue is extreme because of pain and comorbidities.

I put a piece of roast in the crockpot about 90 minutes ago. It’s nearly 11:30 a.m. now. I started writing this 2 houes ago.

I start my days early, I have to in order to get dinner, dogs, and dishes done, no matter. I’m down for the day by 5 and often asleep by 8:30 p.m.

I suppose some of this comes with age and I’m most definitely not a spring chicken anymore.

Green Vietnam with a dash of Super Green MD this morning. My Spinal Cord Stimulator use to be my life preserver, now Kratom is.

Forward in Faith

Posted by twinklev

These months have anniversary affects attached for me and so managing depression can be a little harder than other times of the year.

Everything from unborn children loss to my husband’s several heart attacks to leaving advocacy, abandoned by my pain management specialist, denied care, suicide holds, death, so much more. I just pray that nothing else happens as I move through the seasons.

I’m not healed yet I remain IN healing.

I’ve reached out to a couple of people this year. Making amends of sorts, Trying to, I suppose. Break any ice that might be there.

Closure.

This time 4 years ago I was at my wits end once more. Denied care after trying to re establish after all that before and it was denied further.. I didnt try to kill myself, I promised I wouldn’t do that again. My husband had just had his 4th heart attack. He had it when we returned from my nephews funeral. I had been abstaining decently from the use of drink. His 3rd was barely a year before. My physical pain was awful (it was going on 2 years since losing my PMD) and I have no doubt the worry and stress added to the intensity of it all. His 4th year permanent work anniversary is the same day as 4th heart attack, too. I say permanent because he was with them as a temp during the 6 months prior.

Sad, looking back. Sad, no medical care, understanding, even compassion is there to help a person. I literally ended up an alcoholic because of CRPS. I’m sure that was lingering since the very first time I used booze to relieve. That was 21 years ago. January will be 22 years since the injuries that led to CRPS. I’ve had 8 years sober before. Each day, I get closer to beating that.

It was there that the beginning of alcoholism sprouted.

Whiskey would warm and ease these ice cold painef bones. Booze can be used as medicine. It can and has been for centuries,, but the problem arises when it becomes a regular basis. It then becomes a necessity you rely on. Become dependent on.

I was dependent on those medications I was abruptly discontinued from, too. The years it took to adjust. Cymbalta withdrawal was brutal. All anyone wanted to talk about is the opuoids. That’s not the only thing that helps or hurts people.

Anyway,

I may be an alcoholic now, but I’m a recovering one and I plan to die one day still free of it.

I attend Church (online) each Sunday. March will be 3 years.

I’m on a 866 day Spanish Learning streak.

I’m still doing my music movement therapy. I’ve had a few periods of time I’ve been unable to.

I’m at 3 days a week, about 12 minutes each session on average. It hurts to do and it hurts not to.

I’ve been off and on the low carbs the last few months. I’ve gained some weight back of the 40 that I’d lost. I wish I had taken more pics when I had gotten lower. I didn’t though. Some days my swelling and inflammation is so bad, you can’t tell at all that I had lost any. Other days it was / is noticeable. Let’s just say, I’ve kept 30 off.

I’ve heard people gain weight when they quit smoking. I have no idea if this contributed for me.. Next week will be 8 months and November 18th, I’ll also be 3 years and 10 months alcohol free.

I did promote to 3 lb dumbbells finally. It took a long time. I don’t think I’ll ever be able to increase from here. I can move them at my side for stationary walking, I can’t lift them up (like a birds wings spread outward, or like a butterfly) without intense pain at my elbows. Probably Tendonitis, Idk. I have that diagnosis in other areas of my body, so it seems likely. It feels like meat being torn away from the bones.

I turned 54, 2 weeks ago. Collage photo dump. I haven’t shared any of these.

Photos, October 26, 2022.

My goals for this year is to re establish a sense of community. My social anxiety is pretty bad at times.

I currently engage lightly, (emojis, love, and care) I stay friendly, but do not take part in the bickering between groups, or individuals. I don’t really participate in actual conversation and if so, seldom. I’ll stay the same as the last several years and remove myself from anything no good for me.

I attended a CRPS support group meeting last month and plan to continue doing so. I enjoyed that.

All we can do is live forward.

If I ever hurt you, while I was hurting, I’m sorry.

Forward in faith…