Flipping my Living Well with Chronic Pain; A Hard Look at My Aging Parents

Hello Peers,

Life doesn’t stop because we have pain, it marches on.  Yesterday I happened to be at my parents home during a trying moment.  My journaling, adapting my activities of daily living, learning about calming methods and alternative medicines, listening to my limits ( and applying them), work and academics in this and related human needs fields, all served me well. I read my email to my husband this morning and he suggested I put it in my blog.

A side note before the email posted below;  I have not been attending to this blog for quite a while now; I am sorry for that as I know, as you know, we all are looking for our Peers to assist one another. However, as I stated in my last few months of blogging before this,  I knew I needed time to assist myself before I could continue to assist others. Don’t we all.

I am almost finished with one small project. It’s a project that would have taken a person not in constant pain about two months; it’s taken me almost eight months. Still, I have the pleasure of knowing I did it! My second “project” will be advertised here in about two months. I have been slowly trying to put together a “Well Living With Chronic Pain” program for several years. I will offer it in person in the area I live in, and online via pre-made video webinars.  Both will not accept insurance but will be inexpensive with options for us, financially challenged Peers. I created this out of need. Books are out there in the dozens, pain clinics, advice, support chat rooms, but I could never find one easy to follow, and adapt for my needs, program that allowed contemplation and practice with advice from Peers. This is not a money maker, rather it is a act of love.

Hello my parents

Today was a good day for my observations. It was hard for me to watch (…) in pain but it was also a good thing. I was able to step in and use my skills without having the emotional components of a marriage. I knew tricks of dealing with bad pain that I instantly began applying.

(…),
I observed you having little patience with assisting (…) I know you had a very difficult time when you were young; suffering with asthma and your parents virtually ignored you. I believe you learned to keep it all in as no help was going to come to your aid. This, combined with your easily upset emotional equilibrium, makes it hard to be patient when a loved one is moaning out loud. I understand that. The suggestion I have is to put yourself in their shoes, not yours, and practice acceptance of this new part of your daily life. Also important, find ways to remove yourself and talk with (…) about needs versus wants. (some wants are actually needs, this can actually be tricky and has to be figured out by him but without no ability for you to continue living)
I could do a presentation for you both if it would help.

(…),
I know from your childhood that you suffered for many months with a debilitating illness; any intrusion like this one brings back fear. You learned that you had others there helping you and voicing pain was a safe thing. You also became in control of your illness, through having that support.

There is nothing wrong with either of these childhood experiences helping you in your adult lives except that they now serve to interfere with your marriage as you both age.

(…),
Be kinder. Also, don’t ask what (.) wants, think about what (.) needs. (.) needed looser pants. Period. Roll up the socks. Have (.) sit to dress or stand but don’t inquire too much. (.) has his rights but needs to let go a lot more.

(…),
Don’t demand every little thing. If your helper says you don’t need your wallet, you don’t. Practice releasing some control. Believe me it will serve you and future caregivers.

Both of you are going to need to practice asking for help. Being private is great. Nothing wrong with it. However, if an illness or aging issue is too much your going to need to speak up and trust that I am a competent adult who can, and will, be there for both of you. Your other children are far across the country and can’t come stay with you for a few days or weeks.

I love you both very much. I am sad to see your pain but I think, and hope, my words might help here. My future actions as well. I am a trained Social Worker, Independent Living Specialist, and Chronic Pain Peer who has lived well with many syndromes for decades.

***Living Well doesn’t mean one lives perfectly or fully in a typical eight hour day, it means as little stress as one can create by mindfully creating ones life.
💜🦋💜

Lucinda Tart, ILS, Chronic Pain Peer, MSW

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The Longest Fibromyalgia Flare in Years; New Chronic Neck Pain

Three years ago I was rear ended while stopped at a red light. The van totaled my cars rear, subsequently totaling the car. It, and me, were shoved by the impact to the end of a large intersection. I have suffered through numerous physical and mental issues due to this, lately it’s my neck that’s wreaking the havoc I’m enduring every day, every minute.

The impact inuded whiplash, I was “out” during my trip across the streets, but know my head was bobbing away. I tried to see a specialist about my neck pain but with all my other injuries, the process got started and then I dropped the ball. I was overwhelmed with so many doctors appointments. My family helped me with virtually everything for two and a half years, I was really in bad shape. Today, I am in medium shape.

The last month or so, instead of experiencing neck pain several times a week and when I lay down to sleep, I am having chronic pain in the neck! Those of us with fibromyalgia know that our neck and shoulder area is already a tender area. My neck pain is increasing the trigger point pain in this area due to tight muscles or something else that I haven’t had diagnosed yet. All I know is it hurts! This combination has kept me on my coach, or in bed, for almost two weeks now. At first I was accepting of living with increased pain; thinking it would calm down. It’s not.

I am not feeling very calm about it today. I am feeling angry. And, that’s ok. But, it’s not going to be alright if it screams pain that stops me from all activities of living, except walking my dog, for much longer. The only thing I am accepting right now is that it’s time for me to go back to the specialist, and I need comfort food. Chocolate sounds really good right about now.

How Blogging for my Peers Assists Me

Good Afternoon Peers,

Its time for me to thank my Peers who read my posts. One year ago, I began this site. I was still struggling mightily with cognitive issues, from a rear end accident I experienced while stopped at a red light, three years past. I was not able to write a six page post without spending almost three hours figuring out context, spelling, and connection throughout the post. In looking back at the beginning of this blog, I find many spelling errors and dropped thoughts despite the careful scrutiny I used.  I desperately needed both a way to use my MSW degree and feel some sense of purpose.  This small blog gave me that positive purpose. It wouldn’t have happened without all of you.

I am better now, but not well. Along with increased areas of constant increased Fibro pain, I am struggling with PTSD. I have memory deficiencies and problems with executive functions. Critical thinking. This blog and therapy literally keep me on track in trying to both remember and apply my personal toolkit. Which is not to say I am able to use them as well as I did in the near past. I remain hopeful that in discussing my personal and professional positivity paths, some of them will stay in my daily use again. Maybe one day they will stay in mind all week, even all month.

While I know that I can still offer this, even teach these positive ADL’s, I do not know  how realistic my goals for myself are anymore.  I do know that without writing them down, without researching them, and without bringing them back to the forefront of my cognition, I would remain lost in negativity. I am enormously pleased that some of my peers have found issues they relate to, and others, new tools to help them get through their chronic pain!

Despite my new chronic medical issues, this site will always be a happy place for me to take my time and thoughtfully share with all of you.

XX😘

Change in Weather, it’s Fall, Here Comes the Rain and Wind; Adjusting My Goals

Well it’s the time of year I always try not to think about. The temperatures drop, the wind sneaks under my jacket, and water flows from the dark clouds as the barometric pressure drops. Despite keeping up my positive expectations for my life with fibro, the start of this change in our weather patterns brings a sense of fear in. Each year I believe I will do better when it hits, and each year I learn again that this is simply not how my body reacts.

While my body reacts with an increase in my pain levels, my mind  begins the internal struggle of acceptance. I find my thoughts at war.  The flares of pain put me back in bed making one part of my emotions lean towards hopeless. The mindful self jumps in and begins planning how to accept living well doing less. It’s interesting to observe.

I know my friends and family probably feel that I should be used to these increased pain changes and continue to get on with life. I could buy into this belief and get upset with myself, but to what end goal? Being angry at myself only serves to increase my pain by creating additional emotional stress.

Today I am in bed. I am observing these thoughts right now. I am not angry at my pain. Disappointed, yes. Tomorrow I will regroup my plans for my expectations of how much and where I can work, do household chores, and continue my exercise routine (one I just created). Today, I accept the need for rest.