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Chronic Fatigue Syndrome & Fatherhood: Toby’s Story

by Toby Hodgkins

Chronic Fatigue Syndrome (also known as myalgic encephalomyelitis) is a misunderstood but very, very real medical condition.

No one really knows exactly what triggers this condition, but there are a number of suspected triggers…

  • Viral infection
  • Bacterial infection
  • Immune problems
  • Hormone imbalance
  • Mental stress/trauma
  • Genetics

For me, my ME/CFS started in my teens. I was about 14 years old and was very unwell, and ended up taking a lot of time off school and spending time in hospital undergoing countless tests, until I was diagnosed with ME/CFS. My symptoms are worse in the winter (I’m not diagnosed with Seasonal Affective Disorder but it would make sense), when I’m poorly or stressed, and when I’ve simply not had a great quality sleep. Ironically, my ME/CFS can actually make it hard for me to have a good quality sleep so it can be self-perpetuating. My symptoms are;

  • Struggling to achieve adequate deep, good-quality sleep and stay asleep
  • Intense debilitating exhaustion, mentally and physically
  • Muscle aches and pains
  • Flu-like symptoms
  • Dizziness and nausea
  • Headaches
  • ‘Brain fog’

It sounds similar to fibromyalgia but they’re not quite the same condition. It can vary between people of course, and as you can imagine, dealing with rocky patches as a parent really isn’t fun.

Finding out that I was going to be a dad…

I was surprised, then excited, and I did worry about how I would cope with my ME/CFS as sleep would obviously become more difficult once the baby arrived and would be waking regularly at night!

The moment my life changed forever…

Coping in the early days with a newborn with CMPA…

Coping in those early days was really hard as it was clear that Max was in a lot of pain (he was diagnosed with CMPA at 4 months old) and he wasn’t sleeping well (even worse than your typical baby), and it was affecting my sleep and health – obviously sleep is so important to all parents to help us be at our best but even more so with someone with a chronic medical condition. Luckily, me and my wife were able to come up with a sleep arrangement that let me maximise sleep at night and then in turn I’d take Max so that she could rest in the day. It worked for us but it was so hard getting into that routine.

Napping on daddy while mummy has a nap upstairs!

Things I’ve found that have helped me as a dad with ME/CFS…

Ultimately… sleep!

Getting as much sleep as I could has really helped me as a dad with ME/CFS, and to really help me to get some really good quality deep sleep at night, I accepted medication from my GP. What you’re offered may vary as there are other treatment pathways, like cognitive behavioural therapy, but for me medication during my flare-ups has meant that I function better and am able to continue working full time and being an active daddy.

We still manage to spend lots of time together having fun!

Advice for other new dads or expectant dads with ME/CFS

My advice would be to take advantage of any spare time you do to get some rest – come to an arrangement with your partner to help both of you sleep as much as possible whilst still being able to co-parent efficiently! Don’t worry, you will get there.

Also, don’t be afraid or ashamed to speak to your doctor and try medication.

I’d also say to anyone in my position, don’t be afraid to speak out. It’s so important that people stop assuming that people with ME/CFS are lazy or just making excuses. It’s a serious, chronic medical condition and while it is being taken more seriously, it isn’t just ‘yuppie flu’ and while I am much, much better these days as an adult, my flare ups are real and absolutely horrible.

With the right support and plan of action in place though, you can still enjoy being a daddy and get important things done.

Written by Toby Hodgkins.


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