Mind the sparks

"I really shouldn't have stayed up so late last night, especially given how shit that show was".

It was 6:20pm. June 20th, 2011. Don't ask me why I remember that, sometimes dates just burn into my memory. I was working away on a spreadsheet at my desk in Carole Nash, where I managed a sales team. I felt wrecked. Not tired. Just wrecked, drained. The night before I'd been in bed about 1am unable to sleep and I decided to get up and watch a live WWE show. I eventually slept from about 4:30 till 8:30. Boy was I regretting that decision. But hey, it's only one day. I just need a good nights sleep, then I'll feel better. I got a good nights sleep that night. And I've gotten hundreds since. But instead of getting better, I just kept getting worse...

It's October 10th 2013 now. 2 years and almost four months later. 843 days, to be exact, but who's counting? A very good friend of mine recently started blogging. He's a good writer actually, very good. So good that I begrudge him. You bastard. Just kidding. But he inspired me to pick up the (keyboard shaped) pen again and start this blog. I didn't know what to write about. But I know that a lot of people who might read this have snapshots of the journey I've been on in the past couple of years and I figured this might be the venue to fill everyone in. And hey, maybe in reflecting on it, I might learn something. 

When I got sick, I was taken aback. You might find this a curious choice of words, but let me explain. I had been sick before. In fact, I'd gotten a mini bout of this exact illness the prior November, which hung around for about 2 months. But it wasn't nearly as severe. This thing just hit me like a ton of bricks. The first thing was my neck pain. I would wake up and struggle to look down at my own feet or even bend over to pull on my trousers. My neck was just so incredibly stiff. It was as though a long steel bar was pressing against the upper half of my spine, holding it in place and every time I tried to move there was this sharp agony. Then there was the fog. I don't know a better way to describe this then it's like being hungover. You know when you wake up and your head is just incredibly groggy and you feel almost light headed? That's it. On a bad day I would get so dizzy I'd have to pull the car over if I was driving or I'd go into the computer server room in Carole Nash and lie on the floor. I had aches and pains all over my body, like when you've got a flu. I was just floored. 

The first 6 weeks remain the worst. It got worse and worse and worse to the point that there was a 10 day period where I felt like the world was spinning. I'm man enough to admit I was legitimately scared. Moments like those was one thing, but whole days? I was afraid I'd never feel normal again, I was constantly dizzy. At that point I took a long break from work, and thank God, the spinning stopped. But the rest of the symptoms didn't. 

Most of you are aware of this but for those of you who aren't - the best stories always involve incredibly simplistic story arc's. You get the heat - this is when our main character goes through a period of misery and we feel sorry for him. You know, boy loses girl, Bane destroys Batman, Marty McFly gets stuck in 1955, that sort of thing. Then comes the comeback, when our lead decides to fight back. Boy gets girls back, Batman saves Gotham, Marty makes it back to 1985 (but...your kids Marty...something's gotta be done about your kids!). I looked at my life the same. Sure I was sick, but I had a hell of a comeback in me, and once I fought back, I'd get better, right? Simple.

By now you know it wasn't that simple. In fact, it was expensive, it was painful, it was a roller-coaster that brought me up some days, and down others. It was hope, it was despair. My first avenue was to do what anyone in my situation would do - go to the doctor. Three GP's and one specialist in internal medicine later, I'd had more blood taken out of my arm and dumped more pills down my neck than Lance Armstrong during the Tour de France. But all the blood tests remained inconclusive and the cornucopia of supplements, vitamins and anti-depressants left me feeling no different. In fact, the anti-depressants made me feel substantially worse. I suppose when the bottle warns you that some of the likely side effects are the exact symptoms you're trying to escape from in the first place, that's probably an indicator that the chances of success are low. I realized early on that the medical doctors were trained to treat symptoms not people, so anything that was more complex than A - B seemed to leave them stumped, even the specialist who charged me €250 for a 5 minute consultation in which he told me I "might" be depressed, his voice lacking any conviction.

My next stop was alternative treatments and diagnosis. By this stage, all 4 of the medical professionals had indicated to me the possibility that I had Chronic Fatigue Syndrome. But CFS is incredibly difficult to diagnose - in fact, in the medical profession, CFS is diagnosed by the absence of a diagnosis. IE if an individual has a certain set of symptoms but no obvious cause, then it must be CFS. So my first port of call was a drug called LDN used to treat CFS patients in some parts of the world. I was sure this was my ticket. The only problem is it was not available in Ireland. But I'm nothing if not resolute, and I managed to get two big bottles of it from a doctor in New York, shipped over in the post. God Bless America. It did nothing. So you name it, I tried it. I tried massage. I tried craniosacral therapy. I tried meditation. I tried yoga. I tried homeopathy. I tried acupuncture. I tried electro acupuncture. That last one is exactly as painful as it sounds, incidentally. And nothing. 

In December, I found my last hope. The Perrin Technique. I was shown a video put together by a Dr Perrin explaining the science of Chronic Fatigue Syndrome. It made perfect scientific sense. A breakdown of the lymphatic drainage system causing a pile up of toxins in the body, specifically in the upper back and neck, exactly where all my muscular pain resides. I went to a doctor who specializes in this. He spent 90 minutes poking and prodding me and talking to me and definitively diagnosed me with CFS, no if's, but's or maybe's about it. He was able to relay stories to me about other patients he'd seen and described the things they'd gone through that were exactly alike mine. I even got in touch with a few of his ex-patients who had wonderful things to say, and who'd gone through exactly what I'd gone through. Speaking to people who’d actually been through this was so encouraging. THIS IS IT, I thought. I was elated. He promised me some progress within 3 months, substantial progress in 6, and full recovery in a year or so.

As much as I went into the treatment with hope, I also went into it with realistic expectations. For every person cured by the Perrin technique, there was another who said it did nothing for them. In fact, clinical trials resulted in almost exactly 50% of people improving and 50% being unaffected. 6 months down the line, I was in the latter category. And I was tired. Mentally tired. Mentally exhausted. For those 6 months, I spent upward of an hour every day doing hot & cold treatments, massaging myself, and being massaged by my wonderfully supportive but heavily pregnant wife. I didn't feel any better. Nothing was happening. It was now two years since that first day and nothing had changed. I had fought and fought and fought. I couldn't fight any more. 

And then something strange happened. In defeat, at last, I found victory. 

Make no mistake about it - I am not ‘well’ per se. My neck is hurting as I type this. I still feel hung-over every day, some days worse than others. And if I exert myself, I can end up in a bad way. But broadly speaking, I'm a healthy dude. I can walk. I can run. I can sing (badly), I can shout, I can play golf or football (better than I sing...but not by much). I can type this. I can hold down a full time job. Hell, I can even help create an incredibly beautiful small human being who looks just like me, right down to her chubby cheeks and the constant belching. So you know what? I'm not sick. I never was ‘sick’. My body and brain react differently to everyday mental and physical strains and stresses than yours, I guess. And I experience challenges on a daily basis that have changed the way I live my life, probably forever.  But I ain't fucking sick!

The victory, as I call it, is acceptance. The brain is a funny thing in how it interprets things, subconsciously. If you are fighting sleep, that means you must be tired. If you are running away from something, you must be scared. If you can't eat anymore, then you must be full. So for me, if I was trying to get better, than I must have been sick. And when I finally stopped fighting, I stopped being sick.

I am no longer trying to get better. I manage my energy as best as I can. If I go to the gym, I do a lot less than I used to. When I'm working around the house, I have to be careful and see how I feel, take a break when necessary. I used to go to bed at 12 or 1am. I'm a 10pm man now. I used to have a big social life, now I see my friends once in a while, and when I do, I really can't stay long. My whole career has changed. In June 2011, I was in management, something I busted my ass for four years to achieve. I tried to keep going, and lasted another 10 months, before accepting that the constant conflict and pressure of the job was having a major impact on my health. I had to walk away from the money and the status of that job. That was one of the harder things I've ever had to do. I'm a young male, with that comes a giant ego. Going to my superiors and saying "thanks for the opportunity but I can’t this job, please put me back on the phones", moving back into my old role and going back to working alongside people that I'd managed for 18 months was incredibly humbling and it took courage. I always remember how proud I was of myself the day I got that job. I was prouder still the day I walked away from it. Now, I'm a glorified PA - whenever anyone in my current job has a problem, I have to fix it. But hey, I'm a substantially overpaid PA who works 2 minutes from home so life could be worse. 

The biggest difficulty I have now is how I deal with people. I don’t like using the ‘s’ word because with it comes a stigma. But I can hardly recite this blog every time I need to explain myself, can I? There are certain social expectations that are a burden to me and I struggle with them because I'm a people pleaser by my nature and I don't want to be a hassle or drag anyone down. Birthdays, weddings, nights out with work people. Sometimes I just don't have it in me. Or sometimes I can go, but I only last a while. Even just simple things like heading over to my in laws for Sunday dinner or heading out to see my Mum or my sister or a buddy. I love all these people and it's great to see them. But after 60 or 90 minutes, I'm exhausted and I just want to go home and be silent for a few hours. It's hard to tell people that. I feel like I’m letting them down. I believe often people look at me and because there is nothing visibly wrong with me, they forget. And I also wonder, do they really understand? Or do they think I'm just making excuses? Do they think I'm just a moany c**t? I don't know. I think they all know what's going on with me. But I still wonder. In my new job, I just don't tell anyone. No one in my office knows anything about the issues I've dealt with and I like it that way.

Reflecting on the past 843 days, I am grateful for the lessons I've learned along the way. I knew a long, long time before I got hit with CFS that something was wrong. In fact, literally on the day I started work as a manager, I started to feel unwell, and that stuck with me for over 2 months. I just ignored it. Same thing happened a few months later. But I was blinkered. I was bound and determined to keep walking the path I was on and I paid for it, big time.

Indulge me with a metaphor for a second. I’ve got an extension lead coming from the plug socket in my living room wall. I’ve got double adaptors in that extension lead too. All in all, I’ve got 8 devices plugged into it, - TV, Sky, 2 Blu rays, DVD recorder, X box, phone and internet router. One day I plugged in a ninth device, and the socket blew. It could handle 8 plugs, but not 9. I believe that each human being is a little like a power outlet. It can handle a great deal, but one too many responsibilities and it might short circuit too. I am a happy man, with a  rich and full life. I’m a good husband, I think. And a good father too - I mean, she’s 141 days old and I haven’t broken her yet. I also handle the responsibilities of being a friend, brother, son, cousin, landlord, employee and pet owner relatively well. But my capacity to live my life as I want to is somewhat reduced because I ignored the warning signs – the sparks from the outlet, if you will, for so long. Everyone has a different threshold, and everyone experiences that “blow” in a different way.

But I’m just curious…what have you got plugged in right now…and do you see any sparks flying?