9 Strategies for Staying Positive as a Mom With Chronic Illness

Being a mom is one of the greatest gifts in life and is full of joy, but it comes with its fair share of challenges. When you have a chronic illness, parenting has a whole new set of challenges and worries, along with new highs and lows that are not just yours but theirs: repeating the word “no” a million times, dealing with lost shoes and socks, the never-ending chores and washing pile, the temper tantrums at bedtime and when they can’t get their own way. It can take its toll both mentally and physically.

But how do you look after a baby when you can barely look after yourself some days and just want to sleep the day away? How can you juggle doctor and hospital appointments and a baby all at the same time?

A few times I had been called “Superwoman” for doing it all myself, especially after my ablation. I was too stubborn to ask for help and support or simply felt guilty leaving my son, Kian. But if there’s anything I have learned, you have to be well enough yourself to look after them, like on a plane when the cabin crew says, “Fit your own masks before helping others.” That’s such a big thing when it comes to being a parent with a chronic illness, and it took me a long time to find a balance with the whole spoon theory. As a mom, you can’t just take a nap and gain some spoons back – you’re on the job 24/7 with no coffee breaks except for a good night’s sleep if you’re lucky. The saying of “needing eyes on the back of your head” is so true.

When I was pregnant, everyone would go on about the labor and birth, and I spent my whole pregnancy absolutely terrified, preparing for what was about to come, from the excruciating pain to becoming a shell of my former self. But I believe labor is the easiest part — you can take drugs to help ease the pain of labor, and like everyone says, you forget the pain. You’re crying because you’re setting eyes for the first time on the bundle of joy you carried and felt wriggle inside you for nine months. But nobody warns you or prepares you for how difficult and challenging being a mom can be, and being a sick mommy means the road is even bumpier. But it’s all about learning and doing things a little differently.

I want to share some of the things I do that have helped me with my heart problems. You did not choose to be chronically ill, so get rid of any guilt that is eating away at you. You won’t always be the best parent, partner or friend, but nobody is perfect. Remind those around you, especially the children in your life, that you love them and that you are there for them. It may not be in the ways you had originally planned or hoped, but it is no less valuable or meaningful. A cuddle or reading a story, wiping the grazed knees, saying “I love you” and above all just being there when they need you are the most powerful things you can do as a mom. Take each day as it comes and let the expectations of what you “should” be doing fall by the wayside. Try to live in the present and find the balance in your life, focusing on all the good things. This attitude will help you go a long way towards maintaining a positive outlook about being a mom with a chronic condition.

1. It’s OK to ask for help. It doesn’t make you a failure.

I was never one to ask or admit I needed help and always tried to do it all on my own, with the fear that asking for help made me a bad parent. The thought of failing Kian but not asking for help just made my health worse.

I was exhausted mentally and physically, which made my heart 10 times worse, which just meant I ended up in the hospital or too unwell to look after Kian at all. It wasn’t nice being stuck in hospital away from him for a few days. If I had just accepted or asked for help in the first place, I wouldn’t have became so exhausted. So I guess what I’m trying to say is rule number one: Asking for help if you need it doesn’t make you a bad person. Everyone needs help, and asking for help helps you, which in turn helps out your little one. I learned that nobody judges or thinks any less of you by asking for a helping hand.

2. Find the balance.

Parenthood and chronic illness become a huge part of your identity, and both can fight for control over your life, time, energy and, some days, sanity, and it’s frustrating. Since Kian is only a baby he doesn’t understand, so I learned I can’t blame him when I do need an extra five minutes in bed or a rest. Just learning to adapt helps. I found by taking him along to a local play cafe that’s covered in mats and baby-proofed, I could let him crawl about and play, and I could sit on the comfy sofa with a cup of tea and just switch off for those five seconds without the worry of him hurting himself. The added bonus is that there are other children there, which meant I could have a cup of tea without a baby grabbing onto my leg, demanding me to play. So always make sure you take care of your own personal well-being, as well as caring for others. These are all important for finding balance.

3. Get the extra support that’s out there.

I was amazed at how much support is out there for moms and dads who do need extra support, whether it’s due to an illness, being a single parent or even just finding the whole parenting thing difficult. There are places to go where you can speak to someone about lacking confidence to go out and do things, or even to just talk to a friendly face. There is support that won’t judge you – health visitors and your own doctor can guide you in the right direction. Even reaching out to other people via support groups who are going through similar struggles can provide the emotional support needed to get through the toughest of days and be a great source of encouragement and advice. It’s a great way to meet new, understanding friends.

4. Know your limits and don’t overdo it.

If you are having a bad day or you feel like you’re running low on spoons, order takeout for dinner and ignore the housework — it can all wait. Your health and well-being are more important than a dirty-dish-filled sink or a messy floors. Don’t focus on the negatives. This is easier said than done, but understand that you are not your illness. The ability to find some good in even the smallest things can change your life on a daily basis. It’s amazing how changing your mindset can help mentally as well as physically. Rome wasn’t built in a day, and if you start looking at life from that view, you will realize you will get there eventually, knowing your limits and boundaries.

5. Limit children to one baby-proofed room.

Limiting small kids to one room and baby-proofing it can make things manageable when you’re having a bad day. I got down on the floor to their level and hunted and moved anything and everything that could become broken or go in small mouths and put a stair gate on the door. I didn’t bother with fire guards and instead blocked the fireplace and TV with the coffee table and large toys that stopped Kian from getting through. Yeah, my living room looks so untidy with toys and things everywhere, but it makes it great for a day when you need to lie back on the sofa and you can still keep little ones in your line of vision. You will feel like Superwoman not only managing to lie down to feel better, but also managing to look after the little one, too.

6. Learn to put your needs first.

I know this sounds like such an awful thing to say and obviously as a parent your child is your number-one priority, but be assured, this is a good step in achieving optimum levels of health, both physically and mentally. You cannot be your best for others if you are not your best for yourself. Find time for a quick bath, listening to some music or doing anything that you enjoy, whether it be when the kids are asleep or letting the hubby take over for a night. Putting your needs first will improve your health. It’s amazing what recharging your batteries can do.

7. Remember that kids get bored at appointments.

Having a chronic condition means the endless trips to appointments. It’s no fun getting an electrocardiogram done and having a screaming, bored baby in the pram. I try to get someone to look after Kian, but it isn’t always possible. On many occasions I have been trying to listen and discuss my heath with doctors while Kian was crawling around the room. Sometimes I have had to feed him a bottle just to get him to sit, and sometimes I have even found myself apologizing to doctors for Kian’s behavior. But they’re kids; they get bored. Hospitals are warm and stuffy, so who can blame them? One tip I found is giving Kian a new toy to play with. It doesn’t have to be anything expensive, and it’s normally the small, silly things they like the best anyway. Kian’s favorite is spoons or anything that makes noise, and that helps see him through the appointment. There’s always the bonus that everyone is so friendly and chats away when you have children with you, and on some occasions Kian has even gotten some pennies for his piggy bank, so it isn’t all bad if you do have to take them with you.

8. Don’t be afraid to go to groups.

This was one I wish I had done sooner with Kian. You hear the word “toddler groups” and you think about 3-year-olds running around, but actually there’s something out there for all ages. Getting out and meeting new moms and children is such a good way to discuss parenting. It’s also good for the kids to meet other children and learn to share from a young age. I found it also kept me sane because it can be a long, boring day when you do feel well enough to venture. I found everyone was so friendly at groups, and if I was left sitting alone, the teacher of the group would always come and chat anyway. By going to one group, you learn about others, and it’s great fun playing with messy play and getting involved. It kills a few hours and keeps the kids amused. Places like the library, museum and park are also good and totally free, or the good old favorite: a walk. All the groups you do pay for are mostly small donations, so if you are having a bad day, it doesn’t matter if you don’t go.

9. Always remember that the struggle won’t be forever.

Don’t ever let a chronic condition stop you from having what I believe is the greatest gift in life, and that is having someone call you mom.

From the moment you hold your baby in your arms, you will never be the same. You might long for the person you were before, when you had freedom and time and nothing in particular to worry about.

You will know tiredness like you never knew, and days will run into days that are exactly the same, full of feedings and burping, crying and nappy changes, whining and fighting naps or lack of naps. It might seem like a never-ending cycle.

But don’t forget there is time for everything. One day you will carry them on your hip, then set them down and might not pick them up that way again. You will scrub their hair in the bath one night, and from that day on they will want to bathe alone. They will hold your hand to cross the road, then might not reach out for it again. They will creep into your room at midnight for cuddles, and it could be the last time you wake to this.

The thing is, you won’t even know it’s the last time until there are no more times, and even then it will take you a while to realize. So while you are living in these times, always remember there are only so many of them, and when they’re gone, you will yearn for just one more day.

Follow this journey on Living With an Abnormal Heart Rhythm.

The Mighty is asking the following: What’s the hardest thing you deal with as someone with a chronic illness, and how do you face this? What advice and words of support would you offer someone facing the same thing? If you’d like to participate, please send a blog post to community@themighty.com. Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.