March 22, 2020

Five reason’s why having a chronic condition has prepared you for this crisis

I himmed and haaed whether I should write this post or not but feck it – it needs to be said. The lives of vunerable people, the elderly and those with underlying health conditions as well as the general health of the population is completely  being disregarded by people for their own selfish end. STAY AT HOME FOR THE LOVE OF GOD!

I love a good analogy and the way people are responding to the recent crisis got me thinking. This pandemic is making people feel out of control, inconvenienced, bored, frightened, angry etc. For me though, I feel really calm….these emotions are what I already feel on a daily basis. I have absolutely zero time for people complaining because they have been told to stay at home. Here’s why:

  1. Narcolepsy makes you feel completely out of control all of the time

Anything and everything can trigger a sleep attack and sometimes there is no explanation. No amount of planning can prevent the sleepiness and I think I am actually used to not being fully in control of my life. I take each day as it comes and if I have a really awful morning I am forced to shake it off quickly and not let it ruin my day because I have work to do. Last night I dreamt that I was in a hostage situation and I had to devise a plan to distract the captors, my parents were there too and I was running to protect them. I woke with my heart beating in my ears followed by a sense of relief that this wasn’t actually happening. I felt the sun coming in on my face and saw my boyfriend peacefully sleeping beside me. Such daily emotional turbulence has made me resilient.

  1. Narcolepsy makes you feel frightened, angry and sad

The nightmares, the hallucinations, the smell of smoke from a fire that never was, the feeling of the breath of your nighttime ‘attacker’ on your face…all contribute to how you feel in your waking life. Even though none of it is real, your brain is interpreting it as a very real threat. I have went through all of the emotions before I have even woke up and tried to process them as I eat my breakfast.

In waking life, it sometimes makes me angry that I am in this very position. Yes, I have a positive outlook, but that doesn’t mean that I always feel that way. Sometimes I am angry for having this condition, other times sad for my unfulfilled potential and frequently frightened by something I am not in control of.

  1. Narcolepsy makes it hard to socialise

I suppose I could say I have been self-isolating for a while now. I don’t go out to pubs as often because the mix of alcohol and a late night is a recipe for sleep disaster. This has made socialising difficult for me. I have devised a few ways around it like meeting friends for a walk or a coffee. The idea that we won’t be able to attend events or socialise in the same way for a while doesn’t actually bother me all that much. I read a tweet from Miranda Hart yesterday which said:

 

“This is a really good way for people to understand those who suffer from chronic illness. Particularly the many who are housebound. As well as dealing with illness there is daily grief on missing out on the simplest things people take for granted. A café. A walk. A bus ride”

How true is that statement…I believe that people can only empathise to the extent that they understand. If they have not experienced it they can’t understand fully what it would be like.

Even when I persist and go out anyway, I am always in fear of falling asleep in an inappropriate place. I have slept through musicals, comedy shows, concerts – all noisy places where for a normal person, would be impossible to fall asleep. My sleep debt does not discriminate, it is there to collect regardless of place and time.

  1. Narcolepsy stops you from doing things that you want to do

Another example is that I was prevented from driving for 6 years since they started investigating the reasons behind my sleepiness. But if someone has to put their car in for a service and it takes too long to come back or they have to go without for a period of time, everyone is so full of sympathy. Yet, I had to adjust my life to accept this. I couldn’t’ even take public transport as much as I used to for fear of falling asleep. Even though I lost a part of my independence, I weirdly became used to being inconvenienced.

The same is not true for people who do not suffer from an illness. They are used to the world being their oyster and their go-go-go lifestyle means that many will find it difficult to adjust to having to self-isolate.

I am happy to inform you that I am now able to drive again, I am so grateful to be able to do so!!

  1. Narcolepsy forces you to dig deeper

When I was diagnosed with Narcolepsy I had two options: 1) let it get to me and let it rule my life or 2) find ways to deal with it and live my life as best I could. I decided on the latter but that doesn’t mean that it has been easy. I have had to tip my life upside down, give it a shake and see what I am really made of. It requires a commitment to staying as healthy as you can be and perseverance for when it threatens to derail your day. I have had to build myself a coping strategy (helped by Caroline & Jade) to ensure that my quality of life is as high as it can be. For some people though, they are so ingrained in their old habits and ways that change is not easy for them. For me, an unwanted change was made and I have had to face up to the facts quickly and adapt my lifestyle accordingly.

My advice to you if you feel worried or inconvenienced is to adapt quickly and listen to the facts. Build yourself a toolkit and seek advice if necessary. I read somewhere that our great grandmothers and fathers were called to war and we have been called to sit on our sofas – I think we can manage that!. We will get through this and you will realise at the end of it that you have grown as a person in all of the adversity you have faced. Learn a new skill, read some books, do home workouts, watch netflix, spring clean your house…there is so much we can occupy ourselves with! 

 

Stay safe everyone xxx

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