baby · fatigue · health · pain · parenting · top tips

Parenting With Chronic Illness – A Collection Of Articles

Being a parent with chronic illness can be tough. It’s tiring enough looking after a baby or toddler without having to deal with pre-existing issues with fatigue and pain. When I started the Sickly Mama blog, one of the key things I wanted to do was write about parenting with chronic illness, and connect parents who suffer from chronic illness and disability to build a supportive network (you can join our Facebook group here if you’re interested!).

But of course I’m not the only one writing about this, so I wanted to do a post featuring articles from other blogs about parenting with chronic conditions, to bring together a range of advice on the subject from people who aren’t just me…

parenting with chronic illness and disability a collection of advice and articles the sickly mama blog

Parenting With Chronic Illness – A Collection Of Articles

Parenting and pacing yourself:

When you have a chronic illness, pacing is so important! I remember when my hen do was being organised, my husband was basically a consultant to my bridesmaids about how much I’d be able to do before I’d need a break. He did a great job, as did they, and I had a fab time (and then a really, really long sleep lol). But how do you manage pacing yourself while looking after a tiny, unpredictable bundle of energy (or two? Or three?).

I liked this blog post, which gives key tips on pacing yourself as a parent with chronic illness.

Coping with a newborn as a parent with chronic illness:

The newborn period is notoriously an exhausting and difficult time for all new parents. If you already have chronic illness, it can be quite scary wondering how you’ll cope with the newborn phase, especially if you suffer with fatigue under normal conditions. How much worse will it be when you’re woken up constantly by a baby who needs feeding every couple of hours? Will you be able to cope?

I’ve found a couple of articles that give tips for new parents with chronic illness, on how to manage that difficult newborn phase. This blog post covers tips for managing a newborn with chronic pain and chronic fatigue. And this post covers taking care of a newborn and yourself when you’re chronically ill.

I think the best tips for looking after a newborn when you’re chronically ill are about determining the things you absolutely must do each day (feeding baby, feeding yourself) and identifying the things which perhaps are good to do but not essential (giving baby a bath, doing the washing up). That way when you’re having a bad day, you can stick to just doing the essentials without feeling guilty, and on a good day you can aim to get a bit more fine. Oh, and asking for help is important. Always ask for help if you can!

Helping your child cope with having a parent with chronic illness:

When your child is still a baby, it’s not really something you have to worry about. But I’ve already started wondering – when Little Man is a bit older, how will we talk to him and explain things when I’m having a flare up of my symptoms? This is a really special article, which is actually written both from the perspective of a parent with chronic illness and her grown-up daughter, looking back.

I think the key thing I took away from the article was the reassuring sense that it’s totally possible to have a great childhood even with a parent who clearly suffered from very severe illness. Even totally healthy parents tend to suffer from the mum/dad guilt that they’re not doing enough for their children, so naturally the same guilt is there when you also suffer from a chronic illness that is sometimes limiting. But treating your child with respect, honesty, and trying to maintain a stable routine is what they need.

How to thrive as a parent:

So far in this blog post, I’ve used words like “coping”, “managing” and so on to describe being a parent with chronic illness. But that seems to be setting our sights a bit low. What about thriving as a parent with chronic illness? After all, none of us goes into parenting with the intention of just ‘getting by’ – we want to enjoy the experience!

I like this blog post which focuses on thriving as a parent with chronic illness. It includes some general tips on managing your days and practicing self care.

parenting with chronic illness a collection of articles and advice for parents

What are your top tips or best pieces of advice for others who are parenting with chronic illness? Let me know in the comments!

fatigue · health · hypermobility · parenting · pituitary

Fatigue vs. Tiredness (It’s Not The Same Thing!)

The other day, I was sat with Little Man on my lap I’m the evening. This is, of course, a common occurrence. He’d been very difficult all day with an upset tummy and teething pain. I’d just been playing on the floor with him to distract him, doing tummy time and walking practice and licking Mr Bun Bun (the best part of playtime, of course). I sat back down with him in the armchair, and five minutes later I completely ran out of energy. And I knew I’d overdone it.

I get tired like everyone else, but I also get fatigued, thanks to my medical conditions, and although they sound similar, they’re not the same thing. These days I’m pretty good at managing my activity levels to avoid getting fatigued, but being a parent creates a new challenge in that respect, as you can’t plan for when the little man decides to kick off! So, what are the differences between normal tiredness and fatigue? How can you tell them apart?

Fatigue vs. Tiredness

How is fatigue different from tiredness?

I think a lot of people who haven’t had a chronic illness think that having fatigue is the same as being tired. Which is understandable if it’s not something you’ve experienced! Fatigue does indeed involve feeling tired, but also often includes:

  • Aching muscles
  • Difficulty concentrating or “brain fog”
  • Feeling physically weak
  • Difficulty with decision making
  • Slow responses
  • Poor memory

Plus, the sensation of tiredness/exhaustion is often quite extreme.

As well as having more extensive and severe symptoms than tiredness, fatigue is different in terms of what causes it and how you fix it. It can be caused by long-term illness, including mental illness, or stress.

Most significantly, it often doesn’t resolve with sleep, and the feeling of tiredness is disproportionate to the level of activity you’ve been doing. As a result, it can be quite tricky to understand where your limits are and not go too far. In my case, the other day I was completely surprised that I had apparently overdone it and hit a fatigue wall. I felt like hadn’t had much more of a strenuous day than usual, but obviously it was enough to tip me over the edge.

My experience of fatigue

Firstly I should say that I’m fortunate because my fatigue has improved a lot over the past few years. I first experienced fatigue when I had glandular fever at university and afterwards was left with post-viral fatigue syndrome for a number of months. Then once that started improving, my pituitary tumour started giving me more symptoms…including fatigue!

It’s gradually improved since my second pituitary surgery, when I started taking medication to treat my tumour (lanreotide). The improvement has been so slow as to be imperceptible, but looking back five years it’s a huge change in retrospect. I think as well that I’ve got much better at managing my fatigue in general. I can usually do a busy day or a late night, as long as I have nothing to do the next day. I’m also fortunate that my husband is really helpful at understanding and helping me manage my symptoms.

For me, it’s about ensuring enough downtime around periods of activity. It doesn’t need to be sleep necessarily, but just rest time without much physical or mental exercise. For instance, if I’m doing housework, I need to make sure I sit and have a short break every 15 – 20 minutes or so. If I don’t, I can end up so exhausted I’m useless for the rest of the day. When I got married, my husband had to act as a consultant for my bridesmaids organising my hen do, to ensure that it was enough of a balance of things that I’d be able to make it to the end!

When I’m tired, I can usually power through. Also, even severe tiredness tends to come and go over time, so I’ll feel better for half an hour before the tiredness hits again. When I’ve got to the point of being fatigued, though, there’s no powering through. I am completely useless.

What’s your experience of fatigue? Let me know in the comments!

tiredness vs fatigue they're not the same thing the sickly mama blog