• Showerman - Occupation: Full-Time M.E. Sufferer

    Hi everyone at Foggy Friends. Welcome to my story! Here I'll tell you all about how I went from a super active child, to an aspiring young IT worker, to a full time M.E. sufferer, as well as my struggles with mental health problems and my story in regards to how my M.E. developed and was eventually realised and diagnosed. I hope you enjoy it!


    MY BEST YEARS

    I was a very active youngster. I loved football as a little boy. If I wasn't having a kick about with my various mates on the block, we were playing wrestling. We saw the warnings of "Don't try this at home" when we watched WCW Nitro every Friday night, but that meant nothing to us. It looked like too much fun! Every day after school, I'd rush home with my brother and my best friend and we'd all go home, get changed and go straight back out. My next door neighbour would also come out to play, as would my best friend's next door neighbour. We'd then argue over whether we were going to play football, wrestling or "manhunt" (or hide, seek and tag/add as I've also heard it called) before eventually deciding. We'd normally end up doing all three in the same evening anyway, so looking back, so much time was wasted just on futile decision-making!

    As we got older and became teenagers, our interests shifted. We all got into skateboarding, and the old interests were replaced. What didn't change, though, were our activity levels. We'd still come home after school and go straight back out after getting changed, skateboards in hand. At weekends, while most people our age were lying in, we'd be up at 7 in the morning and go straight out. We'd expanded our friendship group by then, and we were old enough to venture out, so every Saturday and Sunday we'd get food money from our parents and head out, wander off to go and skate at various different spots, and not come back until the night. We only ever stopped for a break to eat, and then we were straight back on our boards, travelling to the next spot for more skating. My mind is boggled by the fact that we used to do this every day for 6 weeks straight during the summer holidays and never be worn out!

    After leaving school and going to college to do my A levels, things changed. I was still skating, but started to do so less and less. Our friendship group gradually fell apart. It fell apart naturally - there was no malice anywhere and I still stop for a friendly chat with my old friends if I see them around - it was just the fact that we were all growing up and our interests were changing. We were all getting new interests, and new friends. It was disappointing in a way - before this point, I'd become seriously talented at skating, and when I was younger I'd given serious thought to getting sponsorship, turning professional and making a career out of skateboarding. Alas, it wasn't to be and I have no regrets.

    My interest shifted to other things. Firstly, my appearance - I'd been a bit scruffy-looking as a skater, but now I started to get into more fashionable clothes and hairstyles, and I started attracting a lot of girls at college! This was a new experience for me and I thoroughly enjoyed it. Secondly was cue sports. I started playing pool at college and quickly became hooked. It was the first time I'd really played it apart from the odd knock about once or twice in a pub as a kid. I was easily the worst player in my college class at the start of the year! However, I have a bit of an obsessive streak in me when it comes to games and sports.

    I have to study it, learn all the right methods and techniques and be the best. I've always been this way. I was the best in my friendship group at football, the best by far at skateboarding, and by the end of my first year at college, I was one of the best players in our common room. This was helped by the fact that I'd purchased a fold-away table that I could practice on in my garden in the spring, which would tuck away into the shed when not in use. I joined a snooker club with some of my friends eventually, and started playing on the big 12 foot tables. I continued with my studying of the basics, methods and tactics, and went on to become a very proficient player. I played for a few years, but eventually my friends stopped playing and I got bored of practicing on my own, so I ended up quitting. I still play the odd game these days, and although I've lost a lot of my previous skill, it's still good fun!


    MY DARKEST YEARS

    It was 2008. I'd left college with some decent qualifications, and had big aspirations for my future. Everyone around me was praising me for getting my A levels in ICT and telling me how intelligent I was and how successful I was going to be. I never felt any pressure, as I truly believed at this time that I was going to make a success of my life. As you have most likely guessed by the fact that I'm now an M.E. sufferer, this vision was never to come to fruition.

    I was trying hard to find employment. As I struggled more and more due to my lack of experience, I couldn't help but get discouraged. I wasn't seeing any of my old friends anymore; they'd all gone on to do their own things. I was spending a lot of my time indoors, had no friends and eventually became depressed. I wasn't doing anything with myself anymore, just sitting in staring at my laptop and getting no fresh air or exercise. It's no wonder I started feeling down! I also developed an anxiety disorder around this time, though it was of a very gradual onset. Eventually, I became a little agoraphobic and didn't like going out or being around people - a complete contrast to my earlier years.

    I vaguely remember falling really ill in about 2009. My mum had my GP come out for a home visit and give me a once-over. I was told it was just a viral infection and was offered some antibiotics, but my mum had already gotten me some over the counter so we turned them down. It took me about three weeks to recover (I use that word pretty loosely here) and I never quite felt the same since. In 2010, after doing a part time Job Centre work placement and getting some experience on my CV, I found my first job. I was a Business Support Officer at my local council offices. "This is it!" I thought, "Now I'll get back on track and get a career path going." Little did I know what was to come...

    My first day was pretty scary and stressful, but I got through it. The next day, I felt awful. It was like the worst hangover I'd ever had - but I hadn't drunk a drop! Knowing I'd leave a terrible first impression, I had no choice but to phone in sick, on my second day on the job. My boss seemed okay about it and told me to phone him the next morning and let him know how I was doing. The next day, I was feeling a bit better. A little rough still, but I dragged myself out of bed and told him I'd be coming in. I found it odd that the feeling of proper illness only lasted a day, but I was glad. It was a tough day to get through. I couldn't concentrate on anything. It was a good thing it was a desk job, or I wouldn't have made it through the day as I was feeling really fatigued. I made a fool of myself when trying to get acquainted with my new colleagues over lunch, as someone asked me what area I'm from and, due to brain fog, it took me about 15 seconds to remember! This is one of several things that I did that made me feel silly that day. The next day, again, I woke up feeling horrific - even worse than the second day.

    My anxiety disorder started taking over at this point. I remember convincing myself that my new boss must think I'm a complete slacker, my new colleagues must think I'm an idiot, my new job isn't as enjoyable as I thought it might be and a whole slew of other negative thoughts. I worked myself up into a state. Then and there, I phoned my boss and told him I didn't think the job was for me and he should find someone else. He sounded very shocked, but was understanding and was okay about it. Straight afterwards, I phoned the Job Centre to inform them about what happened so that my Jobseeker's allowance wouldn't be stopped. They said there wouldn't be a problem, which was a huge relief. I rested for a few days and started to feel a little better. Then, things took a turn for the worse...

    I received a letter from my Job Centre, informing me that I was being put on a full time back-to-work course. I wasn't in a good place, mentally or physically. I started panicking at the thought of attending, and thought that it was the stress that kept making me ill. My mum could see what a state I was getting myself into and suggested that I phone the Job Centre that I wasn't well enough to attend and ask for advice. I did just that. I was told that I'd need to go and get a sick note from my GP and send it in, so I got off the phone to them and onto my GP immediately to book an appointment. This was the first time I'd spoken to anyone about mental health problems and I was nervous. I saw the head doctor; the owner of the surgery.

    I explained that the Job Centre wanted to put me on a course, and that I was pretty sure I was suffering with depression and anxiety and wasn't at all up to it so would really appreciate a medical certificate. His response shocked me. "So? I can't just hand you a sick note, anyone could walk in here and claim that they can't go to work because their leg hurts, that's how people commit benefit fraud." I was stunned. I felt deflated, sick, anxious and at the end of my tether. I went home and, with nobody else in, I just sat on my bed and burst into tears. What was I going to do? How was I going to cope, mentally and financially? These were just two thoughts running through my head. I was still crying when my mum came back in, having been round the shops. She heard me and came running up the stairs to see what was wrong. I let it all out. She gave me a hug and reassured me it'd all be okay. She advised me to book an appointment the next day and see a different GP who might be more helpful. I felt a little better after that, but still doubtful. I'd never felt like this before. I felt sick. My chest felt tight. My head was racing with negative thoughts, and I felt a looming sense of dread.

    I couldn't go to the doctors the next day. I felt too ill. Those hangover feelings were back. I also felt anxious, weak and sick, and barely ate for days. Looking back, I realise now that I had a bit of a nervous breakdown. I recovered after a while, and made that GP appointment. I saw a much nicer woman, who was very understanding of my problems and gave me a sick note. I also told her about how I kept getting ill and what symptoms I was getting, knowing nothing of M.E. at the time. She told me it was just the depression and anxiety wearing me down and I just left it at that. I left the surgery feeling pretty upbeat, knowing that the stress would be over for a while. I phoned the Job Centre and told them I'd gotten the certificate, and was told I'd be sent an ESA form once I'd sent in the certificate.


    OVER THE HUMP

    I'd spent a few months not up to much. I was feeling depressed and anxious at being stuck in a rut, but knew that I couldn't push myself into employment or my health would suffer. There was no way I could cope with the stress of it. I still didn't have any friends at this point. I was round the local shops, when I bumped into an old friend from school. At 12 years old, he had just moved over from Spain when he joined our school. We were never close friends, but hung out together sometimes. We were now both in our 20s, and he'd lost his Spanish accent completely and spoke perfect English. We had a long chat and he suggested going to see him as he just lived around the corner. We started hanging out more and more and eventually became close friends. He soon met a girl, had a couple of children and got married, and I've been there through all the ups and downs of the relationship so far and was the best man at the wedding. It felt good to have a true friend for once in a long time. I was feeling a lot less depressed since being more social with my friend. We both aren't into going out and socialising and prefer to just enjoy each otherís company, so my days of being a social bee were long gone.

    I'd grown quite tall and lanky in my late teens and early 20s. I didn't like looking skinny, so in 2012, I started lifting weights. As with any sort of activity or sport, I became hooked. I started focussing heavily on training efficiently and eating to gain muscle. However, I tried following some recommended and popular workout programs, and I just couldn't keep up with them. I was still getting really anxious about things that were stressing me out. However, even when I wasn't anxious, just generally wearing myself out a bit one day, either physically or mentally, would cause those extreme hangover feelings to return once again. I didn't understand it. If I'd had a good day and wasn't feeling depressed or anxious, why was this still happening? I took a semi-intensive driving course in early 2013, driving on a 2 days on, 1 day off schedule. My instructor and I noticed a pattern in my driving - on the first day, I'd be fresh and drive really well. On the second day, I'd complain that I felt really fatigued and I'd lack concentration, leading me to make an array of mistakes behind the wheel.

    Then I'd have my day off, and go back into driving the next day refreshed and drive well again. I took a few days off before my first driving test, and drove well on the test in general but failed for apparently making a mistake I still don't agree was fail-worthy. That's another story though. On my second test, I'd also had a lesson the day before, and so felt terrible on the day of the test. My concentration just wasn't there, and I inevitably screwed up and failed the test. I had no more lessons running up to the third test and I told my instructor, no practice days beforehand, I want to just jump in on test day nice and fresh and hope that the hour of practice beforehand would give me time to re-adjust. Sure enough, I breezed through it and passed with flying colours.

    After passing and getting my car, I realised I couldn't drive all the time like normal people could. One trip and I'd be done for the day, much to the dismay of my mother and sister, neither of whom drive and had started becoming dependant on me to run them around. I quickly figured out when I could and shouldn't be driving based on how I was feeling - if I was getting those feelings of exhaustion, getting behind the wheel could be very dangerous, as I discovered by a couple of near-misses! When I was feeling okay, I was a brilliant driver, but when I wasn't, I was one of the worst. I suffered like this for a while, until finally - not feeling convinced about what was causing this fatigue, exhaustion and all these other symptoms - I searched for some answers.


    GETTING DIAGNOSED

    In my searches, I stumbled across the phrases "ME/CFS" and "Chronic Fatigue Syndrome". I'd never heard of these conditions before, so I looked into them. What I went on to read was a revelation! The more I read about the condition, the more I was adamant that this is what I was suffering from. I went to my GP and told him I suspect that I'm suffering from M.E. He asked me a load of questions about my symptoms (and my goodness, there are so many symptoms!), and based on my answers, agreed to refer me to a rheumatologist for diagnosis. In the meantime, I was given the usual series of blood tests to rule out other conditions. Everything came back in the normal ranges, with the exception of my white blood cells, which came back high. The GP said this is typical of those with M.E., as the body is in a state of constant defence. Eventually, I had my appointment with the rheumatologist, and after more questions and blood tests, she wrote a letter to my GP confirming my diagnosis of ME/CFS.

    The feeling of relief I felt was incredible! Finally, I had some answers. Finally, I could get those around me to understand why I was so limited a lot of the time. It took about a years worth of arguing with my mum to get her to understand, but we got there eventually and I get her support now, which means more to me than anything. Just support from others. I was making some great progress with the weightlifting, putting on a lot of strength and size, and I discovered my capabilities very quickly. I have to train at a lot lower frequency than most people, with low volume and short, sharp shocks to the muscle as workouts, but luckily I respond well to this approach and it allows me to progress. As long as I take plenty of rest days, I can manage training along with my M.E.


    THE BENEFITS BATTLE

    As I mentioned earlier, I'd been on ESA since 2010, due to mental health problems and recurring illness that was eventually diagnosed as M.E. In the last 4-5 years, living on ESA has been a struggle. If I wasn't living at home with mum, living on the lowest rate of ESA would have been a tough living; I'm under no disillusion about that. Then, there's being pushed from pillar to post by Atos and the DWP, being put into the WRA group and then constantly being sanctioned when I can't turn up to their sessions, and fairly regularly having my benefits stopped and started whilst being reviewed. The stress of it all was taking its toll on my health, making my M.E. worse and mental health problems rear their ugly heads. It wasn't until 2014, that I had a serious look into why I wasn't being put into the Support group despite clearly not being capable of working, and what was required to get the message across so they couldn't dispute it.

    I did a lot of reading about how the points system works, and had a thorough read of the WCA handbook over the space of several months (when my brain was clear enough and not "fogged up"). I slowly but surely realised so many things I'd completely failed to mention in my forms, and how backing everything up with medical evidence was the difference between succeeding and failing at the assessment. Looking back, I used to fill in these forums very briefly and rely on the assessment to explain my conditions, but evidently this approach wasn't working and I lacked medical documentation. Armed with this new knowledge, with my next ESA assessment form and a new claim for PIP, I went into more detail than I'd ever gone into in these forms before, and made sure that everything I wrote was accounted for with medical evidence, so neither Atos nor the DWP could dispute my claim. There was a lot of waiting around to be done - as there always is with the DWP - but eventually, over the period of late 2014-early 2015, I was awarded both Support Group ESA and Enhanced Rate PIP under both components. Finally, I had won the fight.


    FEELING CONTENT AND MANAGING MY M.E.

    So, we've now arrived at the present. I'm financially comfortable and not due to be assessed for a while yet, and no longer being pushed by the DWP into doing things I'm not well enough to be doing, so a lot of stress has been lifted off my shoulders. This is making it a lot less of a struggle to manage my M.E. I've long come to terms with the fact that I'm not going to be having a career for the foreseeable future, and whilst this used to really get me down, I've just come to accept it now. As long as my situation remains the same, I feel prepared for my next ESA and PIP assessments, and as long as I can remain financially comfortable, that will make life a lot more pleasant and my illness a lot easier to live with.

    Everyone around me has become aware of my condition and limitations and come to accept it all. It's been a while since I was asked if I've found any work. The truth is, life as an M.E. sufferer, IS hard work. However, similar to most people that are working, when things are going well, work seems easier to live with.

    Occupation: Full-Time M.E. Sufferer.