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

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.

Weight and Pain

http://www.arthritis.org/about-arthritis/types/fibromyalgia/articles/obesity-fibromyalgia.php

I recently wrote a blog piece about my lowered pain levels, or remission state, from my fibromyalgia pain. In that piece, I concluded that a year-long illness I went through, which resulted in a large weight loss was the contributing factor, so I have decided to follow it up with some actual research into this connection. And indeed, losing weight has had medical validity in pain intensity for many years now (see above link). My doctors always told me to lose weight, and to exercise. The discussion of  exercise also been a popular thread among my peers in online support rooms. Most stating it as helpful, if not with weight, at least with a healthier, happier state of mind.

I was always conflicted about this idea. I would come away from the doctors or the thread feeling shame and anger. It’s easy to tell someone with constant pain that they should get out there and walk, or swim, but it’s not so easy for that person to do. I know that just walking the dog could trigger pain for the entire next day; a very large price to pay! I want to interject here that while that is “not” occurring for me right now, it is apples to apples that it will start happening again soon (I have never experienced a remission of pain for this long, not in all my 17 years of living with fibromyalgia). Another point, in my current relief condition, is that I do still have medium pain every several days and a flare-up of pain large enough to send me to bed for the day every 7-9 days, so as I write this I am clear that this piece on weight and exercise applies to me as well as my peers. I felt shamed because I simply couldn’t create a routine of regular exercise, not with the pain threshold I live with. Anger followed because it was easier to project this feeling onto the doctors and my peers then it was to look deep inside myself and take personal responsibilty for my choices.

After losing all the weight and feeling the relief of waking up everyday at a pain level of 4 instead of the years of 5-6, I now feel ashamed that I didn’t try harder a long time ago. Lately I walk my dog farther every day then I did before, even when my pain level is at a raging 8. I make time to walk a slow three miles at least once a week. I am getting a donated recumbent exercise bike for the winter and will be applying for a low-income monthly membership to my local YMCA where I intend to use the swimming pool, take water aerobic classes, and indulge in some gentle and light weight lifting.  I am also looking into finding a free, local Tai Chi group.

I have not turned into an overnight super athlete, far from it. With the evidence of research and my own, personal experience it is obvious that the adage, “no pain, no gain” is true.  I certainly can not do all of these items weekly, but I can integrate them into an alternating monthly schedule. I will need to start slowly! My upper body is triggered very easily, simply driving the car for more than hour creates triggers in my shoulders, neck, and then head muscles (just typing this is aggravating my trapveious muscles). I am planning to begin exercising in chunks and in no more than 20 minute intervals. I will track what I actually do in my journal and then track how I feel immeaditely after, that night, and the next day. After a month or two of alternating exercising styles and journaling the resulting pain or no pain increase, I should be able to create a program that is tailored to my needs. Losing weight has definitely helped both my pain and my attitude, I am sure my seretonin levels are higher than they were, what a blessing it is for any of us to gain this important nuerotransmitter back. Despite the gift of this gain, losing so much weight has left me with wasted muscle mass (as we age we “useit or lose it”). I am keenly aware  that if I don’t start now, I may never start.

I try to share healthy, successful, positive living ideas in this blog. It would be hypocritical for me to share them and not live them myself. Besides, I love the hope of staying in a state of less pain! Try to find your weight loss path. Decide which exercise routine fits for you. Then, start tomorrow. XX

Patterns, Light, and Fibromyalgia; A Symptom Often Unknown or Overlooked by Physicians

http://www.fibromyalgia-symptoms.org/vision-and-fibromyalgia.html

I went to my doctor’s office last week to deal with a sinus infection I obtained from the flu. I already felt incredibly tired just getting to the office and was not prepared for what I felt next; it’s not something I consciously notice that often anymore. I was ushered into a room that was on the 10th floor with a great view overlooking our hills and the city. I was asked to take a seat on the patient table, which I did. I looked up as the nurse assistant closed the door and my eyes went bonkers. There on the wall in front of me was a bright yellow paint and a chair with bright yellow circles centered in the middle. The entire bank of windows, on two sides of the room, were covered in blinds that were open with slats, but not raised.

I tried to stay seated on the table but got up after only two minutes. I felt dizzy and my head was now aching. The circles and slats were jumping up at me! When my doctor came in, I explained why this was not a great room for fibromyalgia patients. He said he thought it was a nice room. When I explained about patterns and my perception, along with the consequences, he reacted as if he had never heard of this before. Overwhelmed with being ill for some time and the new infection, I let it go. However, it struck me that most general physicians do not know about this symptom, despite the reality that for us, it is a very important symptom.

The manner in which certain patterns effect my pain and create a sense of being overwhelmed is something that I deal with every time I go out. I have learned to take in visual information in pieces, I have also learned that when I already feel flared it is time to create a boundary when shopping.

Department stores are at the top of my list for pattern overwhelm. Whenever I enter one, I quickly go to the area I wish to look in and ignore the rest. If I plan on being inside one of these overwhelming areas for longer than a half hour, I already know I won’t be doing much else. Patterns create headaches for me. They also literally make my eyeballs feel like they are bouncing to a disco beat. This makes it next to impossible to make a decision about what to purchase or even which way I want to turn next. They make me feel uncomfortable, they make me feel like I am losing my balance. In short, they make me feel horrible.

Any task that I need to do when my pain is higher than a level 3 is increased in its difficulty when it involves stacked, colorful, patterned objects. Groceries, driving (especially at night), department stores, walking, even sitting all become twice as hard or even simply unbearable. As I stated, I have learned to compensate. However, considering how much it effects me, why doesn’t my physician know about this symptom? This question leads me down another path of exploration. My cognition issues after being rear-ended.

I still have cognitive issues, three years after being rear-ended. It mostly involves multi-tasking, multiple “things” going on at the same time that demand my attention, and problem solving. I can solve problems but I need additional time. Sometimes, until the next day or longer. Getting back to the patterns exploration, I have been told that my PTSD caused my cognitive issues, but never that my fibromyalgia might also play a part as my eyes already struggled not feel overwhelmed. For the majority of the last three years being overwhelmed was a 24 hour a day feeling. Of course this was not all my eyes, not at all, but what if they played a part that I could have managed? It would have been good to have a doctor talk to me about this symptom of my existing fibro and direct me to create a tool to help manage it.  Ah, doctors. I just have to smile.

nccih.nih Link to Complimentary and Integrative Pain Methods

https://nccih.nih.gov/health/pain

Hi Fellow Survivors,

I subscribe to this link as I find it useful for complimentary methods of living well with chronic pain. There is a lot of information at this site, take what works for you, research various methods, and keep yourself up-to-date with integrative techniques. I haven’t always agreed with everything researched, but that’s ok. I create my own path to living my best and created this blog for you to do the same.

Note that a ” live chat” is coming up! Hope you find something new to add to your unique toolkit.

Came Across this Woman’s Experiences as a Caregiver;Posting her Blog Address as it Gives Us Insight into Our HelpersThoughts, Emotions, andCompassion

 

 

Caregiving: A New Attitude

I realize that we Peers do not suffer from the same medical issue as this blog discusses, however, as persons so often in need of extra, outside support, I feel it is always good to continue “hearing” about their side of the relationship.

XXX

When You Were First Diagnosed with Chronic Pain, What did you Need to Know to Help you Feel More in Control?

I am working on my chronic pain “Positive Tools Pathways” business. I really want my Peers input during this process. I already have 10 worksheets and handouts to assist us in discovering our individual paths to positive pain; understanding triggers and the tools that we need in our lives to achieve this.  Any input will be seriously considered 💜

Please put in comments or use my old email @, msclvwalker@ gmail.com. Please Note; I entered a incorrect email address when I first wrote this. Yikes! Please try again and accept my apologies

XX Lucinda