In a number of my blogs you will have heard me refer to the electrosensitivity I live with. For some time I have been meaning to write a blog explaining my experience with electrosensitivity, but because it’s just such a natural (albeit unusual) part of my life these days, I find it almost tedious to talk about. I want to talk about more interesting stuff J.
However when I explain my electrosensitivity to people I am reminded that other people don’t see it as matter-of-fact as I have learned to do. It is an unusual condition, but, due to our ever-increasing reliance of electro-magnetic fields, unfortunately I think it is one that may increase, if it hasn’t already started to. So here it is. My story with electrosensitivity.
I experienced the first symptoms of electrosensitivity in about 1998-1999 I think. My boyfriend at the time (later to become my husband) had to get one of those cool new mobile phones due to his work. We were quite excited by our new possession, but it quickly became evident that when I used it for only short calls (all calls were short back then as they cost so much!). I would get quite a severe headache and even ear pain. Having lived with the weird and not-so-wonderful symptoms of CFS for 6 years by then I just thought it was another weird, inexplicable symptom to add to the list. I didn’t use the phone much anyway, so it wasn’t a great problem.
Around the same time I also noticed that using a computer for over an hour seemed to leave me very “wiped out” energy-wise, especially if I was in one of the computer labs at uni (I was studying my Bachelor of Psychology at the time). But once again that was manageable because I just cut my computer work into one hour chunks. Because of the CFS fatigue I had to do this anyway quite often, and really I just thought the mental work I was doing was what was fatiguing me.
Using this method and sometimes just pushing on if required, I completed my Bachelor of Psychology and my Bachelor of Arts – Honours (Psychology) in 1999 and 2000 respectively. I graduated with First Class Honours in psychology, so the computer and mobile phone issues did not hamper me too much it seems.
In 2001 I gained a paid position doing a research project on the Recruitment and Retention of Rural GPs at the University of Ballarat. This position required an extensive search and review of all the research ever produced on this topic – and hence, a lot of hours in front of the computer. Within a short time the fatigue and headaches I was getting from the computer were getting quite debilitating, but with a shift to an old laptop located in the department, I was fine (a newer laptop was found to be as bad as the desktop). About three months into this project I did develop a severe migraine-like headache that did not go away for six months (and was exacerbated by being upright), but it was a different type of headache than I’d had previously or since from electrosensitivity, so I still don’t think it was caused by that (though I may be wrong!).
In 2002, after the six month horror headache abated and I completed the rural GP project while lying on my back on my couch with my laptop, my then husband and I headed overseas for a six week trip to Disneyland, Calgary (Canada, where my great friend Shannon lives), and 10 days yachting in the Caribbean on my aunt and uncle’s yacht (handy relatives to have, I know!). We had a gorgeous time and my health held up quite well. The warm Caribbean water and summer weather agreed well with me!!
On our return, I continued with the PhD I had started in March of 2002. I had won a scholarship that paid all my fees as well as giving me a weekly wage – which was partly how we managed our trip. I did do some work while away, visiting a colleague at Miami University, but I was not exactly working full time. My PhD research was looking into quality of life in people with CFS, and what predicted such quality of life. This followed on from my Honours research looking at the impact of CFS on elite athletes’ sense of identity.
In November 2002 we joyfully celebrated my pregnancy with our well-planned, much-wanted first child. We were quietly hoping I would be one of those women whose CFS improved during pregnancy, which would have been a bonus. In a classic understatement, this was not to be my experience.
Within about 4 weeks I found the old laptop I was using to do my PhD was starting to give me the burning, needle-like headache a PC and mobile phone gave me. Additionally I noticed I was also getting a throbbing pain in my ears when I used it. This put me into somewhat of a panic, as I was able to continue working toward my dream of being a psychologist as long as I could use the laptop. With the laptop causing me pain I started to lose options for completing my PhD. The reason I had chosen a PhD was because I was not yet healthy enough to work even a 20-hour a week job. With the scholarship effectively paying me a way, I was hoping to do my three year doctorate and then be well enough to work by the end of it and be a psychologist.
Trying not to let panic overwhelm me, I started writing by hand, with my darling Aunty Jenny typing it up for me. Meanwhile I had started suffering morning sickness, with the constant nausea lasting all day. This was not helping my mental state at all.
Then one night in January 2003 my worst fears came true. I went to watch a DVD at a friend’s house and from the first few minutes I started getting the same headache I got from the computer and mobile phone. By the end of the movie I was in a lot of pain. I drove home crying uncontrollably.
It soon became evident the electrosensitivity now extended to the television, cordless phones, corded phones (yep! couldn’t believe it!), the gas heater (with its electric fan), fluorescent lights, and even the car (with its alternating current and computer). One by one the things I loved doing were taken from me (or so it felt at the time). The comedy shows and movies I used to distract myself from the nausea, the telephone I used to communicate with my many family and friends, the stereo I played my music on (pre-mp3 players), the computer I used for my PhD and so much more – even the car that we did our weekend trips in. If I wanted a day headache free I could not use any of these things anymore. I was miserable, and even though I knew the headaches were real, there was no medical explanation for them, so I sometimes felt I was going crazy.
Many times I have attempted to describe the headaches I get, but pain is not easily captured in words. Nevertheless, I’ll try it here. When the TV goes on, within seconds my head and face start prickling as if someone is sticking tiny needles all over my head (and usually my face). Within a short time the needles blend together to create a burning pain sensation that is like a cap over my head. As time goes on the pain gets more intense and affects the muscles in my neck too (maybe because I’m contracting them due to the head pain). This pain does not subside immediately after the television is turned off. If it eases at all it takes hours. A bath or shower help a bit. Sleep is really the only thing that eases the headache, but during pregnancy I could not take any medication, and the bad heartburn I had meant I couldn’t lay in the bath or rest during the day. My only respite was sleep at night. I thought I had definitely found there was a hell and I was living it. Dramatic? Maybe. Awful? Absolutely.
The misery of my pregnancy cannot be understated. I lived in hope that maybe, just maybe, it was just a pregnancy thing. We heard of others not being able to use computers during pregnancy, so it gave us something to cling to. Meanwhile my husband could not even have the computer on while I was in the house, let alone the TV or heater. We rugged up as winter set in and we played a lot of cards and Trivial Pursuit. If I didn’t feel sick all the time as well, and have every other uncomfortable pregnancy symptom too, maybe I could have coped okay. But I had most of it – and it wasn’t much fun.
While my husband was at work I listened to a radio on batteries (thank god for 774ABC Melbourne!), read the paper (couldn’t concentrate long enough on a book usually, I think due to depression), went for short walks (I had hip pain, so couldn’t go far), and generally just wished for it to get to 8.30pm when I could go to bed. I wasn’t much fun to be around, though I tried not to take my misery out on my husband or others (not in angry, overt ways anyway). I tried to smile and be positive around them, but I’m afraid I failed dismally. I was in a state of grief for what I felt I’d lost and fear of what the future held.
Miraculously I never got angry with the baby girl inside me. I never resented her. I always saw her as a complete innocent in it all, just as I felt her father and I were. But I knew by about 15 weeks, no matter what, this would be my only pregnancy. I couldn’t go through this again. I only hoped the months would pass quickly, my baby would be born safe and healthy, and by some miracle I would return to my normal unhealthy self after I had her. As well as my grief for all my electrical comforts and joys, I grieved the loss of the other children I would never have and the fact my daughter would be an only child – something I had always said I’d never have (one of my many lessons of why you should never say never!).
Depression had definitely set in by 20 weeks. I felt so totally isolated from my friends and family, most of whom lived at least 1 ½ hours away. I felt like a reject of the increasingly electro-magnetic world we lived in in 2003. I’d experienced a lost sense of belonging in 1995 when I’d been forced by CFS to quit my job as a journalist and move back to my hometown with my parents. Now I truly felt I had nowhere I belonged, nowhere I felt safe. Even my own home in many ways was not a place of comfort anymore. Despite great support from my husband, family and friends, I was on my own in my experience of electrosensitivity. As much as they loved me I was the only one who had the pain, and I was the cause of them missing their favourite TV show or sporting events, or why they huddled under blankets to keep warm or why they couldn’t have the computer on.
And so it was for the whole pregnancy. I went 2 weeks over my due date (which I thought was some cosmic joke) and our beautiful baby girl, Sophie, was born a healthy 8lb 3oz on 17 August 2003. Despite my lack of energy and constant headache due to having to stay in the fluorescent-lit, electricity-filled hospital, the love I felt for my new daughter was overwhelming. I adored her from the first moment and still do.
Unfortunately Sophie’s arrival did nothing to ease the electrosensitivity (as I’d found out some people called it) or the constant heartburn (which was to give me continuing problems for another 12 months). Our last hope had gone, and with the constant nausea like a heavy, wet blanket affecting my mind and body, I couldn’t see anything positive in my future. As I walked at our local lake six weeks after giving birth, I was so miserable and desolate I didn’t see how I could go on. I reasoned that living with me and all my restrictions on electric appliances was no life for David and Sophie. They’d be better off without me, and Sophie was so young she wouldn’t miss me. I knew it was no life for me. I didn’t want to go on if it was going to be like this, and it seemed it would be.
And with those thoughts I suddenly understood how people could commit suicide and truly believe they were doing the best thing for everyone. Luckily I had enough psychology and counselling training (and suicide intervention training!!) to hear the alarm bells ringing loudly. I went home and talked to my husband. We held each other while I cried, both feeling so helpless in the face of this bizarre illness. I started counselling a few days later and also saw my GP for some antidepressants.
It’s been a long road since then. Our marriage didn’t last. David did better than I imagine anyone else could have in the circumstances, but even his indomitable spirit was eventually beaten down. I lived like a hermit for three years, trying to avoid the electro-headaches by avoiding the world, but I never really succeeded. As a mother you need to go to the supermarket (fluoro lights etc), visit the doctor (TVs in waiting rooms, computers on desks, music playing) and answer the phone. Even cafes and restaurants have TVs as artwork these days! With the headaches only taking seconds to come on and hours to leave (if at all), I ended up with them nearly every day anyway.
The turning point for me came in 2006 when I went to a 3 ½ day training and development course in Melbourne at a place called Landmark Education. I got a lot from that course (an understatement), but ultimately the thing I took from it that made the difference in relation to my health was the power of choice and context. I got that the context I had around the electrosensitivity was that I couldn’t do many things I used to love – it had taken that from me. But I realised this was just a context and because I create the context I can choose to change the context. So I did! I took the attitude that rather than “I can’t” do these things, “I can do them, they just give me a headache”. I can watch TV; it just has the consequence of giving me a headache. I can use a computer; it just gives me a headache. And so on!
Due to experiences over time I realised a good sleep would relieve most of my headache. I’d been to a neurologist and knew I had no obvious damage in my brain. And even it if it was doing damage, I decided I’d rather have quality of life now even if I had less life in the end.
My breakthrough moment came one September evening in 2006 when I decided to watch a movie on TV for the first time in almost 4 years. With kahlua and milk in hand (self medication!)I switched on the television – to the anxious exclamations from three-year-old Sophie who was concerned for my headache. She had never seen me watch television. We were on a long weekend at a beach motel and she was sharing my room. I assured her I was fine and eventually she went to sleep. I switched the TV off in the ads, but I made it through the whole movie (Maid in Manhattan from memory!). The headache was at fever pitch by the end, but it was not the pain that caused my tears as I switched off the TV for the last time that night. It was joy! I had just done something I never believed I would do again. I had chosen the pain rather than resisting it, and with that choice I had chosen to once again live my life.
And so my renaissance began. A new life! Who knew you could live a happy, fulfilling life while being in extreme pain almost constantly. Turns out you can. For 7 years now I have used computers regularly, started a video biography business, written a 200-page history book of my hometown football club, and watched lots of great TV and DVDs. I do everything that other non-electrosensitive people do and more. Would I rather live pain free? You bet. Do I ever get sick of it? Regularly. Do I ever feel sorry for myself? Sometimes. Do I live a full and empowered life? Yep!
In August last year (2012), through a simple urine test ordered by a chiropractor/kinesiologist, I received a diagnosis that may explain a lot, if not everything. I was diagnosed with a genetic condition called pyroluria (also known as pyrrole disorder and mauve factor), which, put simply, means I can’t hold zinc, vitamin B6 or B3 in my body. I excrete them in my urine. The lack of these nutrients may account for many of my CFS symptoms such as fatigue, headaches, stomach and bowel problems. Most significantly B6 is a nutrient used by our bodies to help protect us from electro-magnetic fields. It appears that the baby growing inside me used up any reserves I had of zinc, B6 and B3, leaving me with nothing, which explains my many strange symptoms of pregnancy.
I am now being treated with up to three daily doses of zinc, B6 and B3, as well as a number of other things my chiropractor/kinesiologist has found I lack (yes, it was a chiro/kinesiologist who finally diagnosed me after years of seeing many doctors and natural therapists). She predicts it could take 18 months to 3 years for me to be functioning as I should be, but I’ll take that over never. My fatigue has slightly improved so far, but there is no change in the electrosensitivity. After seeing many, many practitioners over the years trying to find answers, this diagnosis is like the holy grail to me. I have a vista of health ahead of me that I’ve not known for over 20 years – my whole adult life. But until then I’ll continue living my life with daily extreme pain – a life I love, a life of purpose, a life I’m living to the full every day!
(Oh, and my daughter didn’t turn out to be an only child after all. Her Dad now as a son and a step-daughter with his new wife, so my girl has a sister and a brother! Funny how life turns out, hey? :-))