PATIENT PERSPECTIVES

Here you will find stories, poems and other expressions by people living with Idiopathic Hypersomnia. For more experiences check out our Dear Me page. Dear Me was a project we started for the 2014 Idiopathic Hypersomnia Awareness Week. We asked people with IH to write a letter to their younger self knowing what they know now. If you have been diagnosed with IH what would you tell your younger self?

If you would like to share your personal story, Dear Me letter or other patient perspective on our website send it to admin@hypersomnolenceaustralia.com. All expressions will be published anonymously unless you specifically request to have your name added to your work. 

We are interested in all forms of expression, from written to visually creative work so if you are into photography, design, drawing, painting etc and have something that you have done that reflects your experience with Idiopathic Hypersomnia we would love to share it. 

"I sleep a lot. I always have. 10+ hours a night.  Every night.  I nap a lot too.  2 hour naps. More than once a day. Everyday.  This is my normal.

The theme of this year's Idiopathic Hypersomnia Awareness Week is "Improving Quality of Life".  I love this theme as it is something that I have been personally working towards this year." 

Click here to read about Tiffany's road to acceptance and how surrendering changed her life

Have you ever considered just giving up? 

After many years of striving to be what others and indeed what Michelle expected herself to be she has finally gave up…. And the result? She wish she had of done it sooner!

"Labels don’t mean much to me but for some people the terms “giving up” and even “giving in” have negative connotations. Some people prefer to use the term “surrender”. I will use the term acceptance because it best describes what I have done. I have stopped fighting against what I have no control over and in doing so it has allowed me to be the best person my brain/body is capable of being rather than continuing to have unrealistic expectations.

I honestly don’t know how I knew what I needed to do to turn my life around but I’m guessing it came about through desperation. I had hit rock bottom. My symptoms had become so difficult to manage I naturally thought that my Idiopathic Hypersomnia had got worse. So I started by looking into what would have caused it to progress. Much to my surprise I found that research suggests Idiopathic Hypersomnia reaches its peak in young adulthood and remains stable, ie: it doesn’t get worse. So why was I struggling more than I ever have? Indeed why did I find some days, weeks or months more difficult than others? Over time I spoke to and read the comments of hundreds of people diagnosed with Idiopathic Hypersomnia. I spoke to doctors and other health care professionals including clinicians and scientists that have studied Idiopathic Hypersomnia for decades. What I found is that aside from the people that have other medical and or mental conditions that can account for their symptoms the most likely reason Idiopathic Hypersomnia can appear to have worsened/progressed is because the patient’s ability to manage their symptoms is compromised by other external factors that they are not taking into consideration...." Read more

 

"7 things that have - and could have - improved my quality of life over the last 7 years as an Idiopathic Hypersomnia sufferer

As a condition that affects every aspect of one's life, it is a distressing reality that having Idiopathic Hypersomnia is extremely likely to affect one's quality of life...."

Click here to read about what has helped improve Clare's life.

 

The harder life got the more Melissa seemed to struggle with her sleepiness.

 "...I tried to trudge along and do the best I could because I just assumed that everyone felt the same way I did. I was a mom with two young kids, a demanding full time job, a husband, and the usual motherly duties. Didn’t all women in my situation feel the same way?.." Read more


"At 27 years old I was diagnosed with Idiopathic Hypersomnia.
A sleep disorder that helped me make sense of myself.

Everyone who knew me understood how much I loved to nap.  As I became more aware of my daily patterns I started to realise that my love for napping was actually a daily need..... " 
Read more of Amanda's story 

Michelle Chadwick

Do you….?

Do you feel tired?
Do you feel sleepy?
Do you feel exhausted?
Do you see the difference?

To the Idiopathic Hypersomnia (IH) sufferer I find myself to be, there are distinct differences between these words that are often used interchangeably by others. I think perhaps the various meanings of these are so distinct to me because I live my life in a perpetual balance of the three.

Idiopathic Hypersomnia, is characterized by excessive daytime sleepiness (EDS). I sleep for approximately 12 hours a night, fitting me into the long sleep time category, whilst some sufferers will still sleep within normal bounds (up to 9 hours a night). Getting this amount of sleep doesn’t diminish the EDS but reducing sleep time reduces my cognitive functioning and below eight hours leaves me feeling physically ill. Waking up is another struggle, I often sleep through multiple alarms and fall back asleep after being woken by someone. Thus, I’m very reliant on my lovely mum to keep waking me up and making sure I actually make it out of bed (and medications to keep me awake), though this is an art that is still being mastered. The video below may help you understand some of the difficulties us Idiopathic Hypersomniacs deal with each day:
http://youtu.be/ROipDjNYK4k

I cannot remember how it feels to be tired or sleepy or exhausted in the way a normal person feels. These words have taken on a different meaning to me because of my experience with IH. So what does tired feel like? For me feeling tired is part of my every hour, it’s being awake but not aware. My eyes are open but my mind isn’t embracing my physical awakening, its as if my brain stays in no mans land, between awake and asleep, opposing, warring states. When I am tired I can still think and read and write, do pretty much anything, sometimes I can do it well, other times I can spend two hours to do 15 minutes of work.

Sleepiness on the other hand is very difficult to get past. It’s the unquenchable need for sleep, you can fight it and you know it’s coming but there’s only so much you can do before it inevitably wins and your eyes flutter shut. Feeling sleepy leads to a long unrefreshing nap which is typical of IH sufferers or just going to bed for the night even if it’s only 4pm. I can be falling asleep/feeling sleepy, when all I want to do is go for a run, when my body is longing for movement yet my brain is disregarding this other part of me. Exhaustion, to me, is both mental and physical fatigue, I feel exhausted if I’ve spent five hours up and doing daily activities. My body is tired from exertion, despite how little I may have actually moved and my head longs for the calm which it is denied during the day. The constant “stay awake, eyes open” on repeat inside my head is mentally taxing, particularly when you’re trying to learn something at the same time.

None of these words can truly describe how one feels with Idiopathic Hypersomnia. It’s different for each of us, just as words for everyone else can hold a different meaning to those around you, there are innumerable ways for us to define and explain words that fit into our individual notion of what they should mean or what they mean to us. I find it strange that such common words can take on new heightened meanings when we are forced to find a way to fit them into our own experiences. The word future has also been tainted by this disorder. Whilst I know the future is what’s before me, it has been tainted with thoughts of ‘long term cognitive functioning’ and the many unknowns of this disorder, the reason Idiopathic is yet to be dropped.

Having this disorder has changed the way I look at words and how I interpret them. In my view one can be tired, yet not sleepy. You can be sleepy yet not exhausted. You can be exhausted but not sleepy.

I’m sure I could go on but right now I’m feeling a bit tired. Or maybe sleepy? Hell, I’m exhausted. Goodnight.

Written by Isabel Menssink
in Scientific Scribbles - Mebourne University
http://blogs.unimelb.edu.au/sciencecommunication/

 

 

Don’t you think I wish I could?

Words and art by Lynn Burrough Reid

You wouldn't ask a deaf person why they can't hear, or tell them it's their fault for not listening properly. 

You wouldn't ask a blind person why they don't see, or tell them they should try opening their eyes a bit wider, because there's no such thing as blindness, they're just making it up. You can see, so why can't they?

You wouldn't ask a person in a wheelchair why they don't just get up, or tell them they could walk if they weren't so lazy.

So...

Don't tell me I shouldn't be sleepy just because I didn't do the things you did today.

Don't tell me it must be nice to be able to sleep all of the time.

Don't tell me how lucky I am that I can go to sleep at anytime, anywhere.

Don't ask me why I don't just try harder to stay awake.

Don't ask me why I can't wake up in the morning, am I lazy or what?

Don't tell me I could stay awake if I really wanted to, because you can, so why can't I ?

That's Life! Issue 5 Page 34 Feb 2014

Kim Jarvis Moes, 10 Sept 2013

IDIOPATHIC HYPERSOMNIA
An insomniac may have poor
fuel economy,
but at least he has time for study.
A narcoleptic can refuel at a
blink of an eye, or many blinks.
The night owl gets twenty hours
To a tank holding only four.

Yet,
Misunderstood
Often misdiagnosed
Rests the hypersomniac.
If you can call it resting.
We are driving our cars with
Colander tanks
So even if sleep is fuel
We always awake
Empty
-Kim Jarvis Moes


 

Michelle's Story & the reason behind Hypersomnolence Australia 

This is my story however I know I am not alone. This is the story of many people who live with Idiopathic Hypersomnolence/Hypersomnia (known from here on as IH). IH is a rare neurological sleep disorder that causes us to constantly feel sedated however the effects of this go far beyond just feeling “sleepy”.

I was 42 this year. I first noticed symptoms of IH when I was in my first year of high school, I was 11 years old. It started with struggling to wake up properly in the morning. I don’t just mean to wake up, I mean to actually “feel” awake and stay that way. It quickly progressed to napping in class, to napping during breaks and napping when I got home from school. All I ever felt was sleepy not just tired and exhausted but I actually felt like I was constantly on the verge of being asleep. I did reasonably well at school however not as well as I knew I could have done. I experienced the same throughout my working life. I worked my way into wonderful opportunities only to have them slip away as my ability to manage my condition became increasingly difficult with each added responsibility and increase in workload. I always instinctively knew there was “something” wrong. I can’t lie and say the criticism didn’t hurt or that the lack of support from family and friends didn’t affect me because it did. Being called lazy, or having people constantly telling you that you can do better if you just tried harder when you know you are trying harder than anyone you know or worse, having people tell you that you are just making it up changes you. I went to doctors, I explained my symptoms. Some doctors did tests however I was never sent to a specialist of any kind. Most offered ridiculous advice considering my circumstances (like "get more sleep" WHAT?! if I slept anymore I would never have a life); others just labeled me a hypochondriac, and so it went for 25 long years. I learnt to suffer in silence. I learnt that it was best to have “secret sleeps” – naps that people didn’t know about so that they couldn’t call me lazy. I learnt that it didn’t matter how much someone loves you “caring” about you was something not everyone was capable of. 

From the moment I became pregnant at 32 the symptoms of IH really hit me hard because I was now also having the manage a major change to my body however doctors just dismissed it as the fatigue every pregnant women experiences. I was pregnant within six months of giving birth to my first child and by the end of my second pregnancy I was but a mere shadow of my former self. Without them having the excuse that I was pregnant I again started asking doctors for an answer and this time I was not going to allow them to dismiss it as something that “all new mums” with two babies felt. This was not simply a “feeling”. I didn’t just “feel” tired. I struggled to wake up every time I went to sleep and once I was awake I struggled to stay awake and I had done for as long as I could remember. With two young toddlers I was finding it difficult to meet my enormous need for sleep. My cognitive ability was failing me at a rapid pace and for the first time in my life I feared for my future. 

I was eventually diagnosed 6 years ago and the journey since then has been one of discovery. Personally I'm struggling to accept the inevitable - if this is how I am now where am I going to be in another 5, 10 years? I'm also struggling to accept the fact that my whole life has been and will continue to be dictated to by this insidious wretched disease. The hardest thing above all is that I'm NOT what this condition has dragged me down to. There is what I refer to as my "authentic self" the "real Michelle" who has more drive and determination and thirst for knowledge than most people I have ever known, it’s still there, but I no longer can channel it to be of any real use. Quite simply, I am no longer who I once was and who I once was is not all that I could have been....

In a more general sense I have discovered that Australia does not properly recognise IH.  This means that after searching for 25 years to find out what was “wrong” with me I am not really in any better situation for having a diagnosis. Government departments, including Centerlink and the Health Department do not know IH exists and as a result there are no services available to people with IH. There are no approved medications available to treat IH and above all without official recognition there is no public support and too often that also means there is no family support. Having an “invisible illness” is difficult enough however having one that in itself is invisible makes living with it even more difficult. When I was diagnosed I had nowhere to direct family and friends to so that they could “see” that it was a “real” neurological disorder. I had nothing to show them that “proved” IH did more to me then just make me “sleepy”. There was nothing that explained that my ability to fight the symptoms would been tested over time. The biggest problem for me and indeed other people with IH as we get older is the loss of our cognitive ability. All the positive attitude, all the willpower and sheer determination in the world will not make any difference if you simply cannot remember how or are not capable of doing the job you have spent most of your adult life trying to do. Our physical appearance suffers as the struggle to stay awake overtakes simple things like personal grooming, shopping for clothes or going the hairdresser so while we fight to hold onto our cognitive ability this of course further isolates us as we become ashamed of whom we have become. Our self esteem plummets and we become at risk of suffering associated depression. Too few doctors properly understand IH and the affect it has on a sufferer’s life so unfortunately having a diagnosis has changed none of this for me or many others with IH. 

I founded Hypersomnolence Australia (HA) in March 2013. HA is a fully registered Not for Profit Health Promotion Charity, it was set up purely out of the necessity mentioned above. While there are organisations for sleep disorders there were no organisations anywhere in the world that catered specifically to IH and there were none in Australia that represented IH at all. HA is dedicated to being a strong advocate, providing support, raising awareness & educating others about IH. It is our goal to change not just the process to diagnosis but the level of care and services available to people post diagnosis. 

Michelle Chadwick - Written in 2013
It is 3 years on and I am pleased to say I have reached a level of acceptance that has helped me manage my condition. I am in a much better place now. For an update click here. This is the article "Have you ever considered just giving up? I have, many times...." that I wrote for the Idiopathic Hypersomnia Awareness Week 2016 



 

 

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