Unexplained Fatigue and Me
When I was 17, I went to the doctors, my parents had noticed things didn’t seem right with me and thought I may be depressed. They were right, I did feel down, my studies had gone out of control because I had no focus, I was seeing less of my friends because I was so tired and when I did see people I felt to tired to make an effort.
‘I feel tired all the time, I’m getting nothing done and I feel depressed’, was how I explained it to the Doc.
Straight away I was put on anti-depressants, a course of action that set the tone for how I would be treated for years to come.
This is how I’ve spent 10 years with unexplained fatigue and brain fog.
Disclaimer: This not a how to guide. I’ll about the things I have done but this doesn’t mean I’m telling, recommending or even slightly hinting at you doing them. Do not take this as anything other than the story of my experiences!
How it began: I’m already stuck!
It isn’t an easy start, I often think if I could pin point a time, date or a rough location on when I started to feel tired and unfocused, I’d have half a hope of working out what is wrong.
At age 14, I had about 2 years of terrible migraines. They happened every month or so. I presume it was a migraine – all I can tell you is that in the midst of it, I often wished I could die rather than carry on with the pain!
I was prescribed a drug called Sanomigran (pizotifen) and it was around that point in my life I started to understand what it felt to be ‘tired’. Until that point I’d always been able to wake up in the morning feeling fresh and never felt like sleeping in. I can’t say the two events are connected but I remember clearly thinking that my need to sleep in was because the medication had caused tiredness.
After a year or so I came off Sanomigran, it did’t really seem to stop my migraines so it seemed a waste of time. They eased off until they became a very rare occurrence, my tiredness however didn’t ease off.
Somewhere between this point and my visit to the doctors at 17 things started going downhill.
Depressed and in the System
As I said in the opening paragraphs this journey really started at 17. Once I’d been told that depression would cause fatigue there was no looking back as far as many GP’s are concerned.
I was prescribed Prozac (fluoxetine) and felt hopeful. Maybe it was depression causing me to be so tired.
School and my family were more concerned on my well being than exams. I limped through the final year, going in when I felt like it and generally feeling okay in myself, other than tired and lacking focus.
4 years of fog!
Between this point in 2005 – 2009 my life was a blur. I fell into a job with a boss that didn’t need me to be totally alert all the time and then moved to another were things weren’t so easy.
With both employers my fatigue had become a stumbling block. I was good at many aspects of the job and hungry to succeed but I’d often turn into work looking like I’d been out all night drinking. (I hadn’t been, I was just really really tired!)
As I was on anti depressants through the majority of this time, I found myself going back and fourth to the Doctors. Explaining I felt the anti-depressants made me more tired and nothing was improving.
I was switched to another SSRI (Citalopram) but told time and time again that depression was making me tired. I began to hate trips to the Doctors.
Reeling out the same thing over and over, when asked why I felt down, ‘I feel down because I am so tired and unable to get things done.’
The responses became irritatingly similar, with words to the effect of, ‘Well when you begin to feel less down you’ll start to feel less tired. Stick with this medication for a while longer’
I’d had enough – direct action was required.
Smartphones, Smart Drugs and Waking Up In Strange Places
I used to fall asleep all the time. Usually I’d try to fight it, but if I was driving I’d stop immediately when I felt like I may need a nap.
I’ve woken up in some strange places – once on a sofa in the back of my van. The problem is once I’d wake up I’d be confused for a short while so I really didn’t know what was going on for a minute or so.
It became a running joke that I’d always be dropping off. I took it with good humour because it was true!
In 2009 I was stuck, no job and I felt unemployable. I knew I’d get through an interview, I’m good at the kind of thing. But it would be the days and weeks after were I would be consistently late to work and end up on the bad side of managers, that would find me unstuck.
However I was very fortunate. My parents could see I was good at what I did, when I was in work. They took a risk, helping me set up my own company. I was desperate to make a success of this despite my fatigue.
The fight began, I knew I couldn’t rely on Doctors any more and had to take things into my own hands.
I found out about a medication called Provigil (modafinil), it’s a prescription medication for narcolepsy. However as it wasn’t on the misuse of drugs act, I could import it into the UK for personal use. Only selling it without prescription in the UK was illegal.
I was excited – I felt like I’d sorted out my problems. If I could just be more awake I know I could do so much more.
My first order arrived, I took it and waited. After 30 minutes or so a fog lifted. I felt good, I felt focussed and most of all I felt relief. I knew there was a way out.
Sometimes I still felt a little sleepy, but around the same time I had picked up my first iPhone. I used it as a tool, if I felt like I needed to sleep I’d look at stuff on that instead, things that caught my interest and kept my brain from drifting to sleep. I knew good sleep hygiene would ultimately help me and cutting out daytime napping was important.
Modafinil Didn’t Solve My Problems
The initial excitement of modafinil soon wore off. It was a help, but it didn’t stop my lack of focus or my tiredness. It just took the edge off them.
My family soon found out I’d bought medicine online – it took a lot of explaining for them to understand why I had to do it. However they accepted it and we agreed I’d go to the Doctors and tell them.
The doctors initial reaction to my use was surprising, I didn’t get a telling of, I just got asked ‘Well what is it?’, they uttered something about the dangers of buying online, but had very little to say when I told them they’d left me with no other option. I couldn’t sit and watch my life go by in a daze.
The doctor promised to look into what more they could do and again tried to suggest depression was the cause. I walked out again infuriated that they didn’t seem able to break apart tiredness from depression.
With modafinil taking the worst of my tiredness away I began working hard to change my lifestyle. I’d smoked in the past to give me a distraction to stop me dropping off, I stopped this. I tried to improve my diet and worked on exercising when I could.
My business seemed to be doing okay – I had enough orders in to make things work. But with no major overheads it was simple enough to manage.
Everything was just about working, but I wasn’t thriving. I was just about getting by – which was a leap forward from before. But my quality of life was not good. I found I’d become exhausted and useless in work if I socialised or was to physically active.
I drifted like this for the next three years, hoping things would improve, sitting on a waiting list for a sleep clinic (this involved by passing the GP and using private medicine.)
Nothing is more frustrating than wanting to focus but not being able to.
Things were steady with my business – it needed it’s own premises and it needed to grow. I was excited about this, it was a new challenge. In 2011 I opened a shop, I felt like any day now I’d get on top of my fatigue and things would be great from here on in.
But it wasn’t, after the initial excitement and buzz it dawned on me that I had to do a lot more than previously. Overheads meant I had to achieve more just to break even.
I started to research other medications online, I won’t go into details as I don’t want to encourage anyone down the route of self prescription. I found a few medications that could help me focus better, all of course prescription only but not covered by the UK’s misuse of drugs act.
Before ordering anything I spent hours and hours researching, ensuring I wasn’t putting myself in danger. From 2012 to the middle of last year (2015), I managed to used these to help me. But they usually came with downsides after longer term use, from the effect wearing off to bouts of horrible depression. I spent most of 2015 in the same kind of daze as the early days of my fatigue.
Up until May I’d used a medication with modafinil that really aided my focus. The business was doing well. Then after a 3 -4 year wait I finally got a sleep test. The doctor asked me to not take any medication for a month.
After that, I never really got back to that level of focus. The sleep test results came back in December, they showed no abnormalities but I was referred to a chronic fatigue doctor. I’m back to a loop I’ve been in before. (but at least they aren’t suggesting depression again!)
I still strive to get to the bottom of what is sabotaging me. My fatigue is kept at bay with Modafinil – finally prescribed to me in Decmber 2015 after 6 years of taking them from the internet. But my crippling lack of focus remains.
Why Share This?
I’m not a writer – but I have started this blog to share some of the things that I have experimented with and the things that have helped me stay as organised as possible with my fatigue.
I wanted to put all this out onto the Internet, in case there is someone else like me. I want people who are suffering with unexplained fatigue and brain fog to know they are not alone. That it sucks, but that you have to keep on fighting.
Is This The Whole Story?
It’s what I would describe as the marco-story, the micro details I haven’t gone into.
The collecting data with home bought sleep monitors, experimenting with supplements, changing how I sleep, spending hundreds (if not thousands) on different things to try and control my environment. I hope to cover it all in this blog at some point!
Update: I’ve been diagnosed with Chronic Fatigue Syndrome. It was a little unexpected, but I’m learning to adjust.