The Story Behind DSPD.org.uk
By Sam Hamer
So by now I’m assuming you’ve got an idea what delayed sleep phase disorder is, now here’s my story.
I can only speak from my experience of it and I believe I have it a bit more extreme than other’s I’ve heard about.
So for me, I get to sleep anywhere from 11pm – 11am and wake up anywhere from 6am to 6pm, from what I’ve read, people with DSPD usually have a routine say 4am – 1pm but in my case each day is different and I literally have no idea when I’m going to get to sleep and wake up. If there’s something like a meeting i need to go to early in the morning I just wont sleep so I know I will be there.
When I was in high school I was going into school on 2-3 hours of sleep a night, (when I was there, I skived a lot!) I just assumed it was hormones and being a teenager. When it came to my first GCSE the exam was at 2 in the afternoon, now my mum used to wake me up every day for school when I went but when left I didn’t wake up, I ended up being 30 minutes late for it as I didn’t wake up!
It was around this time I would stay at friends houses and notice they would get to sleep really easily and I’d just be left sat there on my own for hours wondering why I couldn’t get to sleep. I always assumed I had insomnia or something as that’s all I’d ever heard of.
Fast forward to college when I was 16, I was doing bricklaying 9-5 with my mum waking me up at 7:30am before she went to work. A few months in I got a job at Tesco unloading the deliveries and splitting the stock into cages and that was after college at 6-10pm, I was out the house doing manual work for 14 hours and after a few months doing that on little to no sleep each night it took it’s toll on me big time and I had to quit the job.
Feeling like rubbish mentally and physically all the time I went to the doctors and that’s when they diagnosed me with depression and anxiety at 19, they said the sleep was a byproduct of those.
Looking back now it would make sense that I was depressed without knowing it from the beginning of high school. Various antidepressants and no change in my sleep later they would just say oh you need a job, you need routine etc etc, I think I went to about 10 different GP’s in the surgery asking about my sleep and every single one would say it’s because you’re depressed and give me the bog standard information about not drinking caffeine before bed, don’t watch TV and things like that.
Up until now my family and friends didn’t understand it and just thought I was lazy basically.
Fast forward 7 years, 100’s of failed doctors appointments later I was scrolling through Facebook and saw a random picture about circadian rhythms and it said the words ‘delayed sleep phase disorder’, I was intrigued so I googled it and after reading more about it I was absolutely shocked, it was my down to a T.
Finally, maybe I can put a name to this sleep problem and prove to people there is a problem and I’m just not lazy.
I kept a sleep diary for a month and showed the doctor and asked for the final time, can you please refer me to a sleep specialist, she was very reluctant but agreed.
Saw the specialist and he said yeah there’s definitely a problem here and gave me a thing that was like a fitbit to monitor my sleep for 6 weeks.
Returned to the specialist about a month after wearing it to be diagnosed with DSPD, the specialist said I need to take melatonin and use a light box in the morning.
I was actually over the moon I had a piece of paper saying I do actually have a problem and a name for it! And my suspicions of the depression and anxiety being a byproduct of a sleep problem were right, despite all those doctors that told me otherwise.
Unfortunately it wasn’t all rainbows and butterflies, the melatonin and light box therapy didnt work for me, I returned to the doctors and the doctor wrote to the specialist asking if there was anything else to be done and she said no.
I’ve been claiming job seekers on and off for a few years and currently they’re refusing to accept that I have a sleep disorder and DSPD can have an effect on your life and are dismissing my limited availability for work, I appealed this twice and both times was denied so the last port of call was to take them to court and as of today I’m still waiting for the verdict.
So it was back to square one, no job, feeling like crap all the time, depressed, anxious and feeling lost.
This cost me to lose the love of my life of 7 years after she couldn’t deal with me being stuck in a rut, anxious, depressed and not being able to move forward in our relationship (among other things).
So I’m still at square one, not knowing what to do, not knowing how to deal with this, I’ve even seen 7 psychiatrists and psychologists in the last 2 months after serious deterioration in my mental health and none of them had ever heard of it and didn’t know what to suggest for me to do to move forward.
You’re probably thinking, go self employed or something and over the years I have tried several times but unfortunately haven’t managed to make anything for myself that’s sustainable.
So the point in this is, I’m sure there’s a lot of people out there in a similar situation to me, living with this thing and not knowing what it is, I want to try and create more awareness to it so people don’t end up spending 10 years going back and forth to the doctors being misdiagnosed and mistreated and having their friends and family thinking they’re just lazy.
If there’s anyone out there that can help me in anyway shape or form please email me, info @ dspd .org.uk