The Highs and Lows of Parenting with Chronic Illness

by | May 5, 2017

Parenting is full of highs and lows but parenting with chronic illness is a whole different kettle of fish. If you have an autoimmune disease or some other chronic illness, you may be suffering extreme fatigue, pain, lack of mobility and many other agitating symptoms. In this post, I reflect on some of the the highs and lows of my past 11 years of being a Mum.
Every day is different but the majority of days I am experiencing at least one symptom of my various ailments. Sometimes 5 or 6 at once. So when I wake in the morning, I have no idea what the day will bring. When you are a parent, however, you can’t just reschedule, cancel or stay in bed. There are kids to feed, the school run, paperwork to fill in, laundry, housework and a multitude of other tasks to be done. I am happy to do it and I wouldn’t change being a Mum for anything but it is challenging when you are running on empty. You barely have enough energy to sort yourself out, never mind anyone else!
There are of course good days too, but sadly many parents with chronic illness have many more bad days than good.

My parenting with chronic illness lows:

Not being able to lift my son up at The Correspondents gig after a tramp across muddy fields at a world music festival. He couldn’t see a thing and was so frustrated with me as he was too young to understand.
When they were younger, my boys saying that girls don’t really do sport. I had to put them straight on that one swiftly!
Not being able to climb up and change my son’s sheets in his high bed.
Looking an absolute state at the school gates (hair like a bush and sticky dry eyes).
Almost pulling out in front of a car when in an exhausted brain fog.
Trying to join in the Mums race at sports day a few years ago to come way last. The disgusted looks on the kids’ faces were crushing.
Getting ratty with them in the supermarket when too tired to cope.
Tearing my shoulder cuff muscles lifting my heavy three-wheeler buggy into the car boot (twice!).
Having to cut short my breastfeeding to go back on medications.
Struggling to lift and carry the boys when they were little. I couldn’t lift them up anywhere near as much as I wanted to.
Forgetting to take money with me for cake sales and the like due to brain fog = very cranky kids!
The house being chaotic and cluttered due to lack of housework.
Not taking them swimming, to the park etc because I am just exhausted.
Not having any local help as friends/family are not nearby.
Putting my families needs before me too much and then depleting myself even further.
Knowing that I am not giving them as much attention as I would like to because I am running on empty.
Cooking dreadful meals because I can’t get it together.
Struggling on when I should be in bed.
Not inviting friends for them because I can’t handle the extra effort.
Feeling guilty around the PTA Mums at school because I haven’t volunteered to help with the latest fundraising event..again.
Comparing myself to other mothers who seem just so much more capable and fun.
My youngest having a go at me for not being more sporty.
Not managing to go shopping for food.
Not being able to afford things/experiences others have due to being on a single income.

Parenting with chronic illness highs:

The kids being extra nice to me and giving me extra cuddles when I am really unwell (so sweet).
The boys carrying heavy shopping bags for me.
Lots of time cuddling on the sofa watching programmes.
Seeing them develop compassion for others through caring for me.
Being able to breastfeed at all. Very grateful for that.
Having a wonderful lady from a local charity help me with the kids for a couple of hours a week when they were little so that I could have a nap.
Having a good excuse not to do the ridiculously competitive Mum’s race at Sport’s Day! (ha ha ..never again!).
Ok, so I realise I don’t have as many highs as lows in my list, and I could add many more situations to the lows. I also am aware that some of these things may be experienced by parents without illness too. It is never a good idea to compare yourself to others!
The thing is, that every day I am blessed by the miracle of having children, and this high far outweighs all the struggles. I had two (male) rheumatologists who said it was a ridiculous idea for me to even try for a baby. They obviously didn’t know how determined I can be!
Nobody can tell you how amazing parenthood is or how difficult it will be, as each experience is unique. My boys are a joy to be with (apart from when they are arguing ;-)) and I treasure their beautiful innocence and uniqueness. I truly love being a mother and at the end of the day, I am doing my best.

Suggestions for parenting with chronic illness:

So if you are lucky enough to have kids, but unlucky enough to be experiencing a chronic illness, then I suggest the following:
  • Find community and ask for help: Having friends to talk to and rely on is vital. If you don’t feel like you have that, try to get yourself out to a place where you might make new friends. Women’s / Men’s  circles can also be incredibly helpful for expressing emotions and asking for help. Look online to see if there is one near you. You could start one of your own! There are often local parenting groups also and of course there are huge resources and groups online and on social media. I feel the online support should be in addition to a local community though as online support can be great but there is nothing like connecting with people face-to-face.
  • Practice self -care: As I have said before, self-care is essential if you are experiencing chronic illness. How can you look after others if you have nothing left to give? Practising self-care allows you to put some energy in your piggy bank so that you are more able to care for others. Read my post on self-care tips here for ideas on how to do that.
  • Plan well and write things down: Planning for me is essential to keeping on tops of things. I use my Bullet journal to keep track of my monthly/weekly/daily schedules and also for any other notes and reminders. For some great videos on Bullet Journaling check out Boho Berry.
  • Know your limits: Another tip is to manage your limited energy wisely so that you can pace yourself and not overdo it when having a good day. This is easier said than done. For more information on this read my post on energy management. Having healthy boundaries is also essential. Learn how to say no and stick to it.
  • Let go of any guilt: This can be a mother’s ruin and doesn’t serve us in any way. It is inevitable that we won’t feel good about every action, inaction or decision, but we aren’t perfect and mistakes will be made. I try to give myself the compassion that I would give to someone else and try not to give myself a hard time. We may not be able to parent in the same way healthy parents do but we can give our love and attention as best we can.

 

  • Trust your Intuition. Find stillness in your day to tap into your reserves of intuition. They are there and are a much better guide than outside advice, as you know your kids best.

 

Guilt is a supreme waste of time and energy. @Emily Giffin Click To Tweet

 

 

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