The Difference 17 Years Made

Living with narcolepsy requires adaptability, realising that things will not necessarily remain the same.

I have experienced both stability and instability

I have been living with narcolepsy for the last 2 decades. I have been through seasons when things seemed quite stable; my meds were regulated and my symptoms were mostly under control. I have also experienced seasons of instability when my narcolepsy dominated all areas of life, and when simple things became chores and required changes.

I have also seen things that were once easy — even with narcolepsy — become more difficult.

I did not feel I needed extra help with showering

An example of this would be my flat and my shower. When I moved into my flat in 2005, it had a seat in the shower and a commode. I was mortified at the idea of a seat in my shower.

I did not think I had any use for it. I did not need to sit while showering. I wasn't finding the showering process exhausting, or making me sleepy, so I asked for it to be removed.

The request to have it removed resulted in me losing my social worker, as she wanted to send someone to watch me shower to ensure I was safe.  I did not feel I needed extra help at that time.

The long and difficult process of remodeling my bathroom

That was not a decision I regretted, but my view on the shower situation has evolved.

I was 22 years old then, and now I am 39 years old. Now, things are different, and due to other health issues and the fact that I am not on any stimulants, I find myself sleepy more often and more easily exhausted. The once frowned-upon shower chair was starting to look inviting and desirable. So, this summer, I finally had my bathroom remodeled.

It took 5 years to have the shower redone from the time I submitted the request. It took the builders 8 days to complete the job. It was a challenging time for me because I had to send my cat away, get up early every day, and be available to the builders while they worked.

It is okay to ask for additional aid

I am extremely happy that I finally have a modern and convenient bathroom — and this time, it has a seat in it as well. Boy, was it interesting having my first seated shower! It was very enjoyable, and I used up fewer spoons. I'm so happy with the results, and I am also getting to the point where I can ask for additional aid if I need it.

I think that is something very important with our illness as it changes over time. Yes, back in 2005, I did not need to have a seated shower. I was able to manage and remain safe without it. It is okay that I now need that additional help to support my independence and autonomy when my disease is looking a little different.

It's okay to acknowledge that I am getting older and things are changing. My narcolepsy is changing, and perhaps living with narcolepsy 17 years later requires just a little more help.

Advocating for our needs with narcolepsy

As you navigate your life with narcolepsy, I hope you are able to advocate for yourself. I hope hearing my story shows you that it is important to keep pushing for the adaptation and the help that you need,  even if it takes you 5 years.

Have you had any experience where you had to advocate for help for your narcolepsy? If so, were you successful?