Guest Blog: Life of a Narcoleptic Mum
According to the NHS, it’s estimated that narcolepsy affects about 30,000 people in the UK, but many cases are thought to go unreported. It’s a condition that is often misunderstood, so we chatted to Jessica from Life of a Narcoleptic Mum to learn more…
First of all, for those who don’t know, what is narcolepsy?
Narcolepsy is a long-term illness which affects sleep and wake cycles. In the daytime I can fall asleep and in the night it’s hard for me to get to sleep. If I don’t have a daily routine and have a nap, then I go into automatic behaviour. This is where I do things without knowing until I come out of that state. For example, putting the milk in the cupboard or something dangerous like putting on the cooker.
When were you diagnosed and what was that journey like?
I had the symptoms at the age of 18 in 2010. This was after a three-month volunteering opportunity I took up in South Africa. When I got home, I experienced symptoms such as falling asleep unexpectedly, even driving. I went to the doctor and they thought I was anaemic. I was on iron tablets but still having these sleep attacks. I was then referred to my local hospital. They did blood tests, ECGs, EEGs, MRI scans, and still couldn’t tell me what I had.
After months of nothing a friend came with me and encouraged the hospital to refer me to a London neurologist. I got my appointment and had a sleep test and that next morning I had a diagnosis. This was a great relief in the fact I had a name to put to my illness although upsetting due to it being long term and having no cure. I was officially diagnosed in 2012.
What are the main challenges you face having narcolepsy as a mum?
As a mum I have many challenges. As a single mum even more. Then as a single mum with narcolepsy a lot more.
The same as any mother, tiredness is a big part to play, however my tiredness is of that of a normal person who hasn’t slept for 48 hours! Luckily my boys have a routine and we have a set nap in the day which helps me a lot. When I need to nap and the boys don’t, I do fall asleep on the sofa and make sure there are no dangers to them but get woken up quickly by my toddler from jumping on me.
I hate that I can’t drive my boys to fun places and being unable to work I feel like I’m not setting an example for them. With days out I can’t go alone so my boys don’t get to experience as much as I’d like them to, as it’s hard to always find someone so be with me.
What’s the one thing you wish everyone knew about having narcolepsy?
I wish everyone knew that people with narcolepsy don’t just sleep all the time and that it actually is an illness where we don’t sleep mainly during the night. I wish people wouldn’t be so quick to judge that I’m lazy when in fact I’m trying my best.
Is there anything narcolepsy has made you realise about life in general?
The biggest thing I have learned from having narcolepsy is that not all disabilities are visible.
Do you have any advice for anyone with narcolepsy who is thinking about having children?
My advice to those that have narcolepsy and want children is to go for it. The biggest worry many have would be “I don’t want my children to get it” but no one else in my family has it and there is no evidence it is genetic. Yes, it’s a worry of mine but I know I would be the best person to be around if either of my sons got this diagnosis as I understand it so well.
Also – make sure you take as much help as you can!
Okay, on to babywearing… what first made you want to try babywearing?
I wanted to try babywearing because my older son is two and wants to run and play outdoors but with a pram you just can’t get into the woods and on fun walks. It’s also easier to get the bus, as sometimes if the bus has a pram on it you have to wait for the next one due to space.
Does babywearing make life easier for you, both in general and with narcolepsy?
Baby wearing does make my life easier; I feel freer and it’s lovely being close to Eden as Arlo likes to get all the attention.
What babywearing tip would you give to a new mum or dad?
Find your perfect carrier and ensure its comfortable for both yourself and the baby. A lot of carriers hurt your back and are difficult to put on and this can put people off. The Ergobaby has definitely changed that for me.
What’s your favourite thing about babywearing?
Due to being on a 2nd-floor flat babywearing makes it so much easier to get us up and down the stairs. Also, being close to Eden and having that extra bonding time.
If you have any questions about narcolepsy then do visit the NHS website: https://www.nhs.uk/conditions/narcolepsy/ or https://www.narcolepsy.org.uk, or call their helpline on 0345 450 0394.
