“Mum Guilt” with Chronic Illness

Mum guilt is one of those things that the majority of mums live with. We seem to worry about every aspect of our child’s upbringing. Are we feeding them the right things? Are they watching too much TV? Are we stimulating them enough or even too much? Mum guilt almost seems to be a rite of passage. 

Mum guilt is something I have massively struggled with since falling ill with ME CFS over a year ago. My daughter is 2. This means me with ME CFS is pretty much all she’ll ever know. 

I try seriously hard to make sure she doesn’t see the horrible side of it, crashes and all. But inevitably she does. 

Related: Mummying and M.E. – What an M.E. Crash Feels Like

When she was about 10 months old, I returned to work, only to be signed off a couple of months later with what ended up being recurrent chest infections. She started at the most wonderful nursery and is still there despite me not holding down a “traditional” job. 

Those that read my previous post on “parenting and pacing” will have seen that I have actually been setting up a little music tuition business on the side of my blogging. I did this for many reasons, but mostly for my own mental health. I’d thought about it for many years but never quite had the courage to get it going. Being home most hours of the day with our daughter in childcare anyway, I decided to set aside an hour a day, 4 days a week, to teaching piano to young students. I wanted a way to bring in a few pounds a week (I’m sure the DWP will be knocking on my door soon even though it’s all within the “permitted work” rules) and wanted to pass on my love of piano playing to the younger generation. 

Following recurrent chest infections, I got gradually more and more ill, losing more and more of my mobility. I had to find ways of stopping the decline so increasing our daughter’s days in nursery plus days with the grandparents became the way forward. 

She has an amazing time at nursery and with her grandparents, but it breaks my heart knowing I can’t offer her that same level of interaction. She knows I’m ill in some way, as when I’m “crashing” she will see me, and say “mummy very tired, mummy needs to rest”. At those points I want to pick her up, cuddle her and say everything is ok, mummy is ok, but I can’t. The ability to speak becomes too difficult and the strength to lift her becomes impossible. 

This morning has seen my mum guilt levels seriously high. Dropping my daughter off at nursery, seeing her incredibly happy but knowing I’m coming home to time on my own, really hit me hard. This is the same routine that happens each day, but for some reason today it hurt more than usual. 

I’m not a stay-at-home mum, nor am I a “traditional” working mum, in the sense of having a 9-5 job. I’m just an ill mum. This is a phrase I’ve been trying to navigate my way round for over a year. As living with M.E. has caused life to turn on its head for our family, the whole concept of identity has had to be revisited. It hurts to have lost one’s career and many of the hobbies one takes for granted (walking for miles in the fresh air was one of mine), all for reasons that are out of my control. 

Related: Mummying and M.E. – “What Do You Do?”

So what can we do about it? How do we deal with the mum guilt when it becomes all consuming? It’s a very difficult question to answer and one that I reckon no one has the answer to. But for me, the answer has to lie in self-compassion and self-care. We are all doing our best for our children and our families and every family is different. What works for one family will not necessarily work for another. Trying to live in a dream world of what we *think* parenting should look like is a complete waste of time. I will have used up precious spoons this morning from crying about the mum guilt, knowing full well that means that I don’t have the spoons available for something else. I know full well that when those tears were falling, a cup of tea and an episode of Friends on the TV would have sorted me right out, but in a way, I needed to get those tears out and processed. 

For now, I am still in pyjamas, but am feeling more content with the situation having processed it, written about it (thank you readers!) and a nice cup of tea. 

Readers, what are your tips for mum guilt when living with chronic illness? Or what are your tips on dealing with mum guilt without chronic illness? Would love to know your thoughts. Comment below. 

Until next time, 

Soph x 

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