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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? :-))
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healingcfsme.com says
Lovely Louise,
I relate to so much.
Your comment on context is truly helpful as is your honesty and celebration of LIFE!
I recommend earthing mats and products.
Also, MSM has been recommended as a supplement which helped a friend with ES, though not myself.
I sometimes use a Q pendant from http://www.healthy-house.co.uk. Not sure if it works or not!
A protective veil helps me, but I cant remember where I got that!
Doing the Lightning Process definitely reduced my ES dramatically from how extreme it was before.
Being brief but sending love, admiration and thanks,
Katherine
admin says
I’m so glad you got a lot out of the blog Katherine. It’s probably not one many people online would relate to (mainly because they wouldn’t BE online with the symptoms I get!!). I think it might be time to try the earthing products. I always have a rule that if I hear of something 3 times I have to at least look into it. It’s the Universe telling me something I think (sometimes it works out, sometimes not so much, but I always learn something along the way – or it benefits a friend or family member). I’ve tried quite a lot of pendants, salt lamps, things that plug into the mains, etc etc, plus many, many treatments, but nothing has altered the severity of the pain so far. I say “so far” because I NEVER give up hope, but I also live with the pain I have in order to lead the fulfilling life I want to live (rather than the “trapped” one I lived for a few years). The Lightning Process is another thing I’ve heard about more than 3 times lately, so it’s another I will look further into. It’s not quite in my budget just now, but I could make it work if I really wanted to. Do you have any blogs specifically about it that you could link me to?
Anyway, thanks for taking the time to read the blog AND to comment. I love comments, but they often come via Twitter or Facebook rather than the comments section, so I was very excited to see your comment in my inbox tonight.
Right back at ya with the love, admiration and thanks
Louise
Jones says
Hi Louise
I was glad to read your story and inspired to make sure i do not allow a victim mentality to take over with the electrosensitivity I experience. My life seems to have become ridiculous and limited because of my symptoms. I have recently done a detox to reset my diet as I know what I eat has a big impact on how much the symptoms affect me and how I deal with it.
Just a note on earthing mats etc. Through research and conversations with several top engineers in this country (uk), I would recommend being extremely cautious of earthing equipment unless certain things are in place. Earthing of household equipment – lamps, computers, etc is very safe, but earthing your own body in some way, requires much more caution. I used an earthing sheet for quite a while thinking that the pins and needles and wierd sensations in my hands and feet was the good earth energy coming into my body from the earthing. It wasnt, it was radio waves coming up the wholly inadequate cable from the outside. Radio waves/microwaves can actually jump on the the lead of such mats/sheets etc and make the situation a lot worse. It is imperative to have your home/office AC power and wiring checked thoroughly first and make sure it has a good earth and eliminate any faults, which again, can make things worse. If earthing is installed and used safely, it is the case that some people feel some gentle tingles in the body and that would be normal. Anything more than very slight tingly feeling may well be something you dont want more of! It is necessary to make sure that if you are going to earth yourself (you on a mat or a sheet) to the mains of your house, that these checks are very thorough and if you can check your body voltage properly before and after plugging in the mat/sheet, all the better. If you are going to earth via the earth outside with a metal prong into the earth, 2 things are very important, one is to have a prong that is at least 16 inches long (to avoid any ground current in the earth which tends to be there up to about 12 inches as a result of house wiring and possible transient waves) and to have a decent thickness of armoured copper cable that is shielded from any transient radio waves which again, can hop onto a non-sheilded and thin earthing cable. Lastly, for safety, make sure you unplug it in a thunderstorm. Its unlikely but possible that lightning could travel down the earthing cable – common sense prevails! Hope you dont mind me making these suggestions if you go down the earthing route, but couldnt not say! Im sure you know that the best possible earthing is bare feet on the earth – preferably in an area with none or low electric fields in the viscinity (ie not in centre of town). It usually takes about 40 minutes of feet on the earth to discharge the body fully after an onslaught of radio/microwaves etc. Hope this is of some help. All strength to you V
Louise Bibby says
Thanks so much for contributing that information V. It sounds like you’ve really done your research and I’m so happy you chose to share it here. It might surprise you to find I haven’t looked too far into the earthing mats etc so far. I have looked into them a little, but I must say I’ve looked into so many treatments/EMR protective devices over time that have not helped at all that I’m not searching so hard anymore for an “answer”. Saying that, I am definitely open to trying them, so with the extra information you’ve provided I could now do so with a lot more knowledge than I had before.
I do try to earth myself in my garden and when I go to the beach, but I haven’t noticed it benefit me other than it boosting my spirit to be in nature :-). Admittedly, though, I haven’t made it a regular habit. It’s on my “to do” list, along with yoga, meditation and other free-but-beneficial activities. Sometimes I do them all on a more regular basis, but I haven’t built them into my daily habits yet. Your message is a nice little reminder for me to do so 🙂
I’d be really interested in hearing more about your journey with electrosensitivity. Due to the nature of the health condition it’s harder to find people online who live with it. I recently came to the conclusion that it’s time for me to write a series of blogs on living with electrosensitivity because I am in the unique position of having quite severe electrosensitivity, while also still choosing to use a computer and blog regularly.
I felt so incredibly lost, disconnected and cut off from the world when I first started getting severe symptoms. And I realise there are many others – you included – out there who are suffering in silence and feeling like they don’t belong in this electro world anymore. I really want to find a way to (1) Locate these people, and; (2) Create a support hub for them online where they could get family or friends to print them hard copies of my support material/blogs/eBooks etc (more emotional/coping support than treatments, but I’m sure it’d be a bit of both).
Then I could maybe create a network of support for all of us, whether it be online (for those who can use computers) or offline (like a snail mail/pen friend-type network). I’m thinking on my feet at the moment because it only just hit me a few days ago that I NEED to do this for all those people who were ME 11 years ago, and who are also ME in 2014.
Anyway, that response was long, but I think there’s a little serendipity in you commenting on this blog just after I had this epiphany and made the decision to start doing something about it. I hand-wrote a letter to the newly diagnosed person with electrosensitivity that I plan to type & put up on my blog as my first in the series. I’ll let you know when that’s up (if you subscribe to my newsletter, you’ll be notified immediately).
If you’d like to share your story further with me privately, feel free to email me – Louise@GetUpAndGoGuru.com Maybe you and I can be the start of creating this supportive network! I’d love to get to know a fellow person living with electrosensitivity.
Thank you so much for sharing your knowledge
Keep Smiling
Louise 🙂
Gail says
Dear Louise—-This is me exactly, and what a relief to hear your story. I have been searching the internet for a blog on dealing the EHS and feel the call to start one, or share one. I am feeling the isolation, effects from our vehicles, and so much more that you shared. I have tried grounding also, but didn’t like it—felt it was drawing in more current into my body, and always hated it and unplugged during thunderstorms! I am feeling there has to be way to support all the people who suffer silently and in isolation. Is the blog an effective way to do that? We need to be sharing more of this—symptoms, but more importantly, what has given us some relief.
Thanks for your post, sending blessings, Gail
Louise Bibby says
Hi Gail,
I’m sorry I haven’t checked my comments for a while. I’ve had a hiatus from my blog – kind of taking a different direction at the moment – so I’ve been offline a fair bit. I’m not sure if you already contacted me directly as I had a couple of people do that via email back in the first half of the year.
I think you’re right. It would be great to have more information out there for people with EMHS to draw on regarding how they can help themselves. When I’ve done searches in the past I’ve just become disheartened with the fear-based conversations around the topic. I completely understand that point of view, having lived in fear of all EMFs for years before I decided to change that way of thinking, but I don’t find it productive to talk about all the things to avoid or how much EMR comes from each device. My point of view is that if I’m going to continue to choose to live in the 21st century and not in a hut in the middle of nowhere, I want to find ways to do that with the minimum of pain and fear. It’s not easy, but for me it’s meant a lot more empowerment in the way I live my life.
I have a new website I’m developing where I’d like guest writers to talk about all different topics around creating and maintaining wellness in their lives – in all areas of life! I’ve called it TheWellnessQuest.net but I haven’t got far with it yet. My dream is to have many contributors on many topics who talk about different natural and allopathic therapies – giving people balanced information about ways they can take responsibility for their own wellness.
If you’d be interested in being a contributor to this site, please email me – Louise@GetUpAndGoGuru.com and we can go from there. It’s a fledgling site right now, and the only posts I’ve done have been a small project I started writing about living the Tao principles in my own life. You could be my first guest writer on the topic of EMHS!!
Let me know what you think.
Cheers
Louise