(The 2nd blog in my series about my very personal, unpleasant pregnancy experience. Please read these posts in order from Part 1 onward before reading this one, otherwise it’ll all be out of context. WARNING: These are NOT cheery posts. They are a real, authentic, warts and all account of my quite horrible pregnancy experience, while managing CFS and the Electrosensitivity that developed during the pregnancy. Please be cautious when reading these posts. What happened to me is very unlikely to happen to you. What happened to me is VERY unusual, but I need to tell the story in case it helps even one other person!)
Disbelief, Devastation, Dealing
After the initial resistance and anger (really?! Are you kidding?! I haven’t suffered enough? This bizarre illness hasn’t taken enough away from me?!), I turned the frown upside down (as is my want) and looked for ways of still completing my PhD. I went to the disability liaison officer at university (and after considerable convincing on my part – and my supervisor’s – that I was deserving of help), I was given the support of someone to enter data for me.
(Actually I think I skipped ahead a bit. Thankfully all this is somewhat of a blur time-wise 10 years down the track!!)
Zoom out a little and we’re back to December 2012. Nausea was still bad but I could rarely actually be sick/throw up despite my strong desire to do so (yep, I’m writing the yucky bits and all!). I was spending my time handwriting as much as possible of my PhD introduction, reading lots of hard-copy research, and really hoping the computer headaches were a temporary pregnancy thing.
By this time I’d also started getting hip pain (which supposedly is a late pregnancy thing, but naturally Louise had to be the anomaly once again. I did always say as a teenager I wanted to be unique and different. Another of many “be careful what you wish for” scenarios of my life! ;-))
The Small Silver Linings
Was I still excited to be incubating a child and becoming a Mum? Undoubtedly. And sharing that with my husband, who I adored, was even more special.
What can I report that was good about being pregnant? As mentioned before, I fell asleep at night quickly and got back to sleep fast if woken by my ever-frequent bladder or afternoon-shift-working husband. I also, for the first time in my life, always had warm feet and hands, so didn’t need my trusty heat pack on my toes when I went to bed. In those early stages I could also still have a sleep in the afternoon (aka Nana-nap to non-CFS people) because the nausea hadn’t increased to heartburn yet. That joy was still to come. 😉
(Side note: I feel like stopping this blog after every paragraph, as I feel it can’t be doing anything but putting other people with CFS off getting pregnant. I repeat, mine is not a normal, common response to pregnancy. The pyroluria must have played a huge part and I also repeat, my daughter is the best thing that ever happened to me!! AND the other reason I want to stop is that reliving this horrible time of my life is not fun at all. I will continue because someone out there may benefit from my candidness and also because I want this blog to be authentic and balanced, and not just the happy, optimistic, positive-focussed posts I enjoy writing)
I didn’t really think things could get much worse after becoming “allergic” to the laptop. I had heard of some unusual people becoming sensitive to all electro-magnetic fields (EMFs) but I thought they were probably exaggerating and paranoid, possibly even just hypochondriacs! I wasn’t like that. Hahahahaha! Teach me to be so bloody judgmental! I became one of these people and even surpassed them in symptom severity (and I’m no hypochondriac, though I’m quite sure some people wonder!). I always have liked winning, though once again, it’s a case of “be careful what you wish for”! :-/
Symptoms Amp Up! (No pun intended 😉
In late January 2013, about 10 weeks officially into my pregnancy (for some strange reason it goes from the first day of your last period, not the presumed conception date), in a matter of about 24 hours I started getting the same severe headaches, face and ear pain from the TV and cordless phone as I had already been getting from the computers and mobile phones (see these blogs, here, here and here) for a description of the head pain).
Day by day, week by week, more and more electro-magnetic appliances started to cause me severe pain. I say electro-magnetic rather than electrical because, to my dismay and distress, even corded phones and cars were affecting me negatively (eventually someone who knows how phones work explained why this may be, and cars have alternating current – as in AC/DC – as soon as the alternator is switched on. Older cars were a little less painful than newer ones full of computers in the dashboard and engine, but even just sitting in Mum and Dad’s new car at football with it turned off gave me a headache (apparently the computers are still on to some extent even when the ignition is off).
Can you see why at times I really wondered if I was going crazy?! Seriously mentally ill people don’t know they are seriously mentally ill because they are seriously mentally ill. So even though I knew on one level I was completely sane and my symptoms were very physical, I wondered if maybe I was just so deluded and paranoid that I wasn’t even able to identify that I was deluded and paranoid. (Sometimes I may over-think things!) 😉
And so my nightmare pregnancy continued …
I felt like my life was spiralling out of control. As the days of summer rolled into Autumn and the days got colder, I felt relieved to think we had gas, not electric, heating. But, alas, our gas heater needed the electric fan on to work , and within a short time I was getting headaches from that too.
It was all pretty much my ultimate nightmare coming true.
I felt trapped in my own cold house –
- feeling sick
- unable to walk due to hip pain
- still with the symptoms of CFS which included other types of headaches
- still exhausted by 1-2pm daily but unable to even lean back in a chair due to heartburn and nausea, let alone lay down!
- unable to call my friends, family or even Lifeline without intense pain from the phone
- unable to visit friends and family without pain and fatigue from the drive there and seriously disrupting their lives by asking them to turn TVs, computers, heaters etc off (even at the other end of the house they affected me), or suffering severe pain if I didn’t feel comfortable asking them to do so
- and, due to being pregnant, I couldn’t even take medication for the pain once it kicked in.
Is this painful and depressing just to read?! It certainly is even to write and remember. I feel compelled to apologise for the yuckiness of it, and how depressing it is. But it’s true. I felt like I was the butt of some very sick joke that God had decided to play (yes there were plenty of why me?! WTF?! rants at God, Buddha, the angels, the Universe and any other metaphysical entity I could bring to mind).
Some Joy Amongst The Despair
On the positive side (it was so hard to feel anything too positive!!), my baby seemed to be growing well. I’ll never forget that first ultrasound at about 12 weeks when we saw its little hands and feet. It was one of those truly magic moments of life hearing our baby’s heartbeat and knowing that was our little baby we had created. (And what’s more I was growing it in my defective body by some miracle of nature!)
That ultrasound made it all real (if the weird and yucky pregnancy symptoms hadn’t already). I remember the obstetrician sent us home to consider whether we would have the test for Down’s Syndrome. She advised us not to have the test unless we were absolutely certain we would terminate if it showed positive to Downs Syndrome.
I had always thought I’d definitely have all the tests known to man because with my health the way it was I didn’t think I’d ever cope with a disabled child, but when it came to the crunch I sat down with my husband and told him that having heard our baby’s heart beat, alive in my stomach – a real human being – no matter what any test showed, I could not terminate this child. He was of the same thinking. So we didn’t have the test, taking the chance that we could indeed have a disabled child. Theory and reality are such different things aren’t they?!
The 20 Week Ultrasound
So in amongst the misery and despair there were still magic moments. The even bigger magic moment was the 20-week ultrasound where we saw our baby in even more amazing detail. We had decided to find out the sex of the bub, mainly because we hadn’t had much joy in pregnancy to that point, and it was like getting to open a surprise Christmas gift early.
It was something good we could finally share in what society had led us to believe was always such a joyful time – but hadn’t turned out that way for us.
We left the hospital that day walking on air and buzzing with excitement that we were expecting a little girl (barring any hidden appendages unseen by the ultrasound doctor!). It also appeared all was well in other regards, so against all odds, my fragile, demolition-job of a body was somehow growing another remarkably healthy body inside it. Go figure!
(Now I know about the pyroluria I realise the little parasite that was my daughter – sorry, but parasite she was, as all babies are as a matter of necessity – was using her survival instincts and stealing every bit of my depleted zinc, B6 and B3, along with all the other nutrients she needed. My comprised immune system due to all these nutrient deficiencies was just not enjoying that at all!)
D and I went out for lunch at a local lakeside cafe and celebrated. The menu was limited for me, being only able to eat the healthiest, most basic food and drink, but I’ll never forget the sparkle in my husband’s eyes as we excitedly chatted about our little baby girl.
He really wanted to tell his parents, and although I’d thought it was usual to keep it to ourselves I thought “why not?”. After all the incredible love, support, tolerance and empathy he was giving me, not to mention the massive alteration to his lifestyle that he was putting up with, if he wanted to share our exciting news with his parents and get to enjoy something in this pregnancy ordeal, I was all for it (his Mum was also battling cancer at the time, so it gave us more reason to share the news with them). I realised I’d also better give my own parents the same opportunity, although in that case only Mum decided to find out and Dad elected to be surprised.
The Impact On My Husband (and Family & Friends)
One of the by-products of my, frankly, horrific pregnancy experience was the impact it had on my husband (and other close family members). D was my rock throughout the misery. He continued to make me laugh on a regular basis. His positive, bubbly, optimistic attitude helped me keep hope alive (although with depression setting in pretty solidly it was hard to feel much hope, joy or anything positive). I loved hearing him arriving home of an evening (he worked 2 day shifts and 4 afternoon shifts at a local historical theme park and associated motel) and I enjoyed his company as much as I enjoyed anything at that time.
D had been my best friend since the night we first got together on Oct 22nd 1992. We talked about everything, shared a lot of interests (especially sport, music and TV) and were about as compatible as I think two human beings can get. We were very much in love and I’ll never forget what an amazing anchor of strength, understanding, pragmatism and positivity he was for me during the horror days of my pregnancy, and the many months after when I still had many pregnancy symptoms. No one other than he and I will ever truly know how hard it was for us through that time. I will always be grateful for who he was for me throughout that whole ordeal.
But, like a tall rock pounded by relentless harsh waves that eventually wears away and breaks, the strain, stress and consequences of my illness eventually wore my 6 foot 6 ” rock down and he, too, broke. Though it eases with the years, the sadness (and guilt) that leaves me with will never quite disappear. Perhaps the greatest casualty of this weird and awful illness of mine was the eventual loss of our marriage.
Read Part 3 of CFS, Pregnancy & Electrosensitivity: My Story …
Read Part 1 Here
PS. Related links: “Allergic To Electricity”: My Story With Electrosensitivity, Trapped In My Body: CFS, Pregnancy and Electrosensitivity, The Dilemma of Pain: An Unusual Choice, CFS and Pain: A Silent War On An Internal Battlefield