No one signs up for chronic pain, (at least I wouldn’t think anyone would). Nevertheless chronic pain showed up in my life nearly 14 years ago. It showed up and has impacted every area of my life including my marriage.
At the altar on the day of the wedding most couples repeat the vows “in sickness and in health”. A promise to be there for each other no matter the circumstances, but how many couples actually can live up to those standards? Illness can permeate a marriage changing the roles of the couple. From equal partners to one who is the caregiver and one who is sick. When suffering, pain, doctors appointments and medications become the focus, relationships can easily unravel. Guilt, and resentment can take over. My husband and I have been married for 19 years and here is what we have learned together along the way:
- Accept that sometimes and in some ways you need a caregiver. There are some things that I just can not do anymore at all or without assistance. It’s our reality. Just like when he is sick with a cold or flu, I do my best to look after him. When I’m in a flare he does his best to look after me.
- Communication and Appreciation: We check in with other all the time. I make sure that he knows how much I appreciate all he does for me and our family. He acknowledges the ways that I contribute so that it lessens my guilt.
- There are going to be hard times. Being a caregiver is tough. Especially when you already work full time. He gets tired (so do I), he gets moody (so do I) but these times will pass.
- Reassurance: I often need his reassurance that I am not a burden. Sometimes, on bad days I need to hear it over and over again, and he needs to be okay with telling me over and over again.
- Remember what you love about the your partner. What drew you together? Write a list of your partners qualities that you love and share it with them.
- Patience. Kindness & Understanding. You may not be living the life that you envisioned, but you’re together. You’re a team and that’s what matters.
I know what you’re thinking. Well, of course I do because I’m you. You’re thinking that life is too hard, that the pain is too much and that you feel beaten down by this flare. You’re running out of steam, out of motivation and out of – for lack of a better work “zest”.
We’ve been here many times before. And we give in to those feelings. We give up, shut down, isolate and hide. But not this time. This time we are going to practice a word called perseverance. Which basically means don’t you dare give up. Don’t let the lack of progress suck the the life out of you. You wanted a revolution. You wanted your eyes to have that spark again and you and only you can make that happen.
You have a big and busy week ahead of you. And you can do it. You can also get back to the track, and back on track with all the plans you had this year. Because you’re worth it and we can’t let the pain win. You deserve to have a happy life. Even if that life means you’re dealing with physical and emotional pain. So to ensure this week goes smoothly, extra self care is needed. Which means doing the extra things that help us feel good. Art, writing, going to bed early and planning out each and every day. Our word for the day is perseverance. So suck it up, because future Jen will thank you.
Dedicated to my dear friend Alan, whose voice I can hear in my head saying all these things.
My son was three when the pain started. I’d always been an actively involved parent. I took pride in my parenting. Sitting on the floor playing games with him, reading stories with him on my lap. Going for walks, taking him to Gymboree classes. And suddenly that needed to stop. I could barely walk and I was in agony most of the time. I went through a barrage of doctors all trying to figure out what was wrong with me. And in the midst of all the tests I went through and all the doctors I saw, I needed to find a way to still be a good parent to my little guy. I mourned the things I used to be able to do. But it just wasn’t my reality anymore. Here are some things I learned along the way:
- Don’t try to hide it. Children are smart and intuitive, they know when you’re hurting. In the beginning if my son asked me what was wrong I would say nothing. But that only ended up confusing him. When we started to open up a dialogue about what I was going through, I was surprised at how much he understood even at three.
- You can still do the things you used to do-just differently. Since I could no longer sit on the floor with him, he would sit beside me on the couch or in the chair beside me. Since he could no longer sit on my lap, he would sit beside me as I read, or stand beside my bed if I couldn’t get up at all that day. I found other people to take him to Gymboree or music lessons when I couldn’t. Since I was home with him during the day my husband made lunches for us the night before.
- When it was time for school, I drove him instead of walking. When I couldn’t drive, a neighbour or a family member would take him. It became important for me to let go of control and be ok with relying on others for help.
- Asking for your child’s help. When my son was old enough I was able to ask him for help if I needed it. Careful to not take advantage, but there were days that he was home with me and I needed his assistance. I think he felt good to help out and I believe it helped to teach him responsibility. He’s been making his own lunch since he was 6.
- Empathy. I know seeing me in pain was hard for him. I also know that it has helped to teach him empathy. He now wants to be a doctor and help others who are in pain or suffering.
Parenting in pain is not easy. There are still times when I can be overcome with guilt and wonder if I’ve given him the best life I could. But when I look at the evidence all around me I know without a doubt I’ve done the very best possible. And really that’s what our children deserve-our very best no matter what that looks like. So, don’t be hard on yourself. Take each day as it comes. Forgive yourself. Let go of what might of been. Enjoy the time you do have and make the most of each moment.
Motivation? What’s that? I haven’t been writing for some time, I just haven’t felt inspired. Not inspired to write, not really inspired to do anything. I know what you’re thinking, what happened to all that motivation and zest from the beginning of the year? And the truth is I have no idea. I guess it happens to the best of us. We find ourselves suddenly stagnant, no longer moving forward. We set goals and they seem so far away we worry we’ll never reach them so we just stop moving toward them. The plus side is I don’t think I’ve moved backward.
At the beginning of the year I talked about a revolution. And I still want one. All it takes is making the choice to take that small step forward. The choice to do things a little differently. It’s never too late to start up again. And this post for me is that first step.