3 Ways I Balance Being Chronically Ill and Being a Parent

I am a mother to two lovely twin toddlers, however I have Ehlers-Danlos syndrome (EDS) and postural orthostatic tachycardia syndrome (POTS) and so it’s a slightly different story to when I raised my older children when my symptoms were much easier to manage.

There are days when I go to bed at the same time as the twins do, because I know it’s been like wading through treacle all day. If I don’t rest up, then the next day will be a living hell. I often take a nap in the afternoon much like other mums do, except sometimes I’ve got my hand strapped up due to a subluxation in a joint in my fingers again.

I’m happy to say that my children don’t struggle because of my condition and we do get out and about all the time. They are happy, healthy and loved. The message I would like to share is that when I get bad days, I ask for support from those who can give it and this makes all the difference in the world. I’m a positive psychologist and find that when I practice what I preach, I have twice the energy than I would have had otherwise.

If I could share three things that I do with other parents with rare diseases, it would be this:

1. Always check in with yourself when you get up. See what your body needs in the way of fuel, and give yourself whatever it needs. For me that’s often porridge with fruit, and I eat my breakfast as the boys eat theirs.

2. Practice loving kindness on yourself. Be accommodating of things you can’t manage and forgive yourself if you can’t manage the washing up and instead plump for a nap.

3. Ask for help when you need it, don’t wait until tiredness has you on your knees. I’ve put respite twice a week into the equation for my boys now, for a little me time. This makes so much difference. I use that time to either catch up on housework or just go and have coffee with friends.

We want to hear your story. Become a Mighty contributor here.

Thinkstock Image By: NolanWynne

Find this story helpful? Share it with someone you care about.

Related to Ehlers-Danlos Syndrome

How a Wheelchair Offers Freedom to My Son Who Has Ehlers-Danlos Syndrome

My son, who has Ehlers-Danlos Syndrome (EDS), owns a wheelchair. He doesn’t always use it, and he doesn’t always need it. He can walk. Sometimes, on good days, he can run and play. He rides a bicycle on cool days when heat isn’t a factor, and when his body allows him to. He slides at the playground. He absolutely [...]
washington dc capitol building

Why I'm So Grateful to the Senators Who Voted Against the ACA Repeal

Editor’s note: This story reflects an individual’s experience and is not an endorsement from The Mighty. We believe in sharing a variety of perspectives from our community. Yesterday night, three GOP senators stood alone on the Republican side in the health care fight. As almost every Republican voted “yes” for the ACA (Affordable Care Act [...]

How I'm Learning to Balance Being Honest With Protecting My Family From My Pain

Being chronically ill is difficult for a lot of reasons. You go to bed exhausted and you wake up tired. You can’t eat the same things as most other people. You have to be careful how you move. You have to plan everything you do very carefully. It all adds complexity to your life, but [...]
24 surprising symptoms of ehlers-danlos syndrome

24 Surprising Symptoms of Ehlers-Danlos Syndrome

Editor’s note: Any medical information included is based on a personal experience. For questions or concerns regarding health, please consult a doctor or medical professional. Ehlers-Danlos syndrome (EDS) is a group of disorders that affect connective tissue, which is like the “glue” that holds our bodies together. When the connective tissue is faulty, it can cause joints to sublux or [...]