Saturday, May 20, 2017



So, What Do I DO ??

11245315_662840603862128_88006362_n.jpg

        Recently, I noticed that when these stories get published on The Mighty pages, there are comments that we, as authors, can see. (I know, right? You’d think I’d have looked for that immediately!)  In response to an essay I wrote about things I don’t admit on my bad days (https://themighty.com/2017/02/bad-pain-day-struggles/) someone left a response that I hadn’t previously thought about.
    
    Basically, I was asked what can someone do to support a person dealing with chronic pain.  
    
    Seriously. And in thinking about it, I realized it’s something I’ve never been asked before. After 21 years of being chronically ill within a marriage, what I came up with surprised even me.

  1. Give Me Space.  I know that doesn’t sound helpful, but sometimes it’s exactly what I need. This disease is relentless. And it’s progressive. Which means that every time I think I come to terms with it and how I am feeling, it changes and I have new stuff to deal with. It makes me angry and it makes me cry and sometimes I don’t even know how to help myself so I definately don’t know how you can help.

2. Give Me A Hug. Yeah, coming right ‘after give me space’ this makes no sense
whatsoever. BUT… a hug can go a long way. You see, I get that you want to help
me and I get that you don’t want to see me in pain. Hell, I see the pain in your
eyes when you look at me this way and all I want to do is make it go away and I
can’t, so how can you? And we both know words don’t help when I’m like this.
But a gentle hug says so much more than any words ever could.

     3. Get The Kids On Board. OK. So this is a tough one if not impossible, but I’m
          going to say it. Most of us with Chronic Illnesses are women, so I am addressing
          this as a mom. I just physically cannot do the stuff I used to. Some days, just
          vacuuming is an issue. So any day you can get the kids out of my hair is a
blessing. Be creative and make up quiet games or get them to help make dinner
          or clean up. If they’re older-like my actual children-remind them that I seriously
          can’t carry their laundry up the stairs and lizards can survive on one day of no
food if I forget to feed them because you work out of town and… I’ll stop here. And ladies-don’t expect perfection if your guy is helping out here. There is none in the world of children or chronic pain. He’s trying.

  4. Help Me Find My Bliss. Going philosophical here, but it’s not as highbrow as it
      seems. Just talk to me about my pain. Talk to me about what I need in reference
          to my pain. The sweetest thing my husband ever did for me was to purchase a
          personal TENS unit (Electrical muscle stimulation) to help relax my muscles. I  
          love it! (That and the nightly backrubs when I was overexerting myself caring for
          my  mom) Find out what works and buy it, do it, commit to it. It’s hard and  
          disappointing when I’m alone in trying to make a change that I know will help
  reduce my pain.

5. Talk With Me. Ask me how I’m doing. And listen to my answer. Then ask me
     how I’m REALLY doing because you know I lied to you when I said I’m ok the
     first time. I know you’re tired too. And I know you work hard. You may be the
     only one actually holding down a job. I don’t want to add to your stress. Talking
     with me lets me know you want to know what I’m going through even though
     you can’t fix it. And also know I don’t expect answers. Maybe just a hug...

6. Appreciate Me. Understand that the things I mentioned in the beginning are
    always true. And it affects me mentally. I feel like a burden more than you will
    ever know. Becoming chronically ill, autoimmune, disabled, a pain patient, any
    or all of the above while in a loving relationship changes everything. I know it’s
    not what you signed on for no matter what you say. Those little romantic
    gestures other women are so nonchalant about can change my whole week.


But the most important advice I can give is to go with your gut! Go with Love. It always works!