Growing up, my two boys, frequently heard “We will see”. That was my standard answer, and it meant that I had no idea if I would be able to get out of bed much less go anywhere. My fibromyalgia was often unpredictable at best so I never knew what to expect from one day to the next. The one bright star was they knew no different and were very familiar with the phrase.
“We cannot judge our parenting skills based on other people’s expectations.” Adrienne Dellwo
Parenting on a good day is no easy task, but when you throw in chronic pain the difficulty goes up two-fold. There will be times when you hurt so bad and have no energy, you just do not want to be bothered. This can lead to irritability and misdirected anger when the kids do not seem to want to behave. When you cannot go to all their games or events, guilt may creep in along with the feeling of being left out. It is a double edge sword. If you go, you may have to endure a flare up, and if you don’t, you will have to endure the guilt of not being there for your child. It is a lose lose situation, but it does not have to be.
There are several things you can do to help your children understand what you are going through and how they can help.
- Communication: Talk openly and honestly about how you are feeling, but keep it simple and age appropriate. This will be an ongoing conversation between you and your child as they grow to have more questions. The best reason for doing this is to prevent the child from thinking they have done something wrong, when you are reacting to your pain not your child. Let your child know, they cannot catch what you have and you will not die from it.
- Let your child help: It is okay for your child to help, but DO NOT make your child your caregiver if possible. A child needs to be a child! Having said that, you can start teaching a child to become independent within their age range. For example, there is no reason your child cannot help pick up around the house.
- Let your child talk: Your child will have concerns from time to time, and they need to be allowed to voice them without judgement. There should be no topic off limits regarding your pain. If they know they can ask you anything, they will take their direction from you and will be more honest about what they are feeling.
According to Gina Shaw (webmd.com), there are some things you can do to help improve the quality of time you spend with your child.
- “Plan”- If you know your child has a special event coming up, you may not want to schedule extra appointments and you may want to rest until the time of the event. Do as much as possible in advance, because you can never predict a flare up. “Think of it like a bank, make deposits so you can be ready to make a withdraw on a certain day.” Sherrie Sisk
- “Pre-medicate”- Don’t try to be “strong”. When you know, you have an activity coming up, it could be beneficial to take medication ahead of time.
- “Focus on what you can do”- I realized early on, I would not be able to snow ski because I was so afraid of falling and hurting myself. What came out of that was a new-found love of snowshoeing at my own pace. It was kinder to my body, and I could still go out and enjoy the snow with my family.
- Know your limitations- Don’t push yourself too far. Quality of time is much better than quantity of time. Do things with your kids that you can be 100% apart.
- Find strategies to lessen your pain every day- Walk around or stand rather than staying seated for long periods of time. Use self-stick heating pads under your clothes on your most painful areas. Meditate throughout the day or before going out to an event so you will be in a relaxed state. Take a warm bath or shower before or after going to an activity. Whatever works for you, do it!
- Keep a pain journal- Write down what helps your pain and what makes it worse. This will help you figure out triggers that you need to avoid.
- Exercise and eat a healthy diet- Both will provide the building blocks for a healthful life and will aide in helping you to feel better.
- “Ask for help”- No, you cannot do it all. Family, friends and neighbors are usually willing to help if you just ask. It could be utilizing a carpool, watching the kids for a short period of time, or picking up some things at the store for you.
You must take care of yourself to be the best parent you can be!
“Do what you can, and make sure they know they’re loved. That’s all any parent can do.” Adrienne Dellwo