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