Recently I was asked by a reader if I had a blog post about my experience with chronic fatigue syndrome (CFS / ME) and pregnancy. As my pregnancy experience was not what you would call “conventional” (even for someone with CFS!), I have been reluctant to write about it here for fear of scaring others off having kids. I realised, however, that what I learned from my pregnancy experience may help other people with CFS to navigate an easier path to having their own children.
(I will preface my whole conversation about my experience with CFS and pregnancy by saying I now know (as of August 2012) that I have pyroluria/pyrrole disorder, which means I am unable to hold zinc, B3 or B6 in my body. This means I have very little of these nutrients in my system unless I use 2/3-times daily supplements.
In 2002 when I became pregnant with my daughter, I did not know of this condition. Hence, the low levels of zinc, B3 and B6 in my body at this time probably went to my daughter, leaving nothing left for me. Consequently, my pregnancy experience was a very unpleasant one. The other preface to this conversation is to say that becoming a mother is the best thing I have done to date. It brings me joy daily.)
Early days of pregnancy
My pregnancy was very much planned. My then husband and I were ready to start a family and I believed my health was at a level that I could cope with pregnancy (CFS symptoms at the time: post-exertional malaise after vigorous exercise (eg. more than 20 mins mild level), fatigued by 2-3pm daily when I slept/rested for about 2 hrs, regular headaches of all sorts, some bowel and digestion problems – all in all I was functioning way better than at my more severe periods of illness!). D and I had also heard from a number of sources, including my GP that some CFS patients had been found to improve during pregnancy, so we were quietly hoping I would be one of these people.
Sadly, this was not to be my experience.
Fertility was not a problem for me. Despite my CFS and undiagnosed pyroluria I had suspected I was very fertile, as my periods came every 28 days without fail. It took us about 6 weeks to conceive. The fact it took this long was more to do with my lack of knowledge around ovulation than anything else (who knew there was such a small window?! How on earth do so many surprise pregnancies happen?!) Luckily D’s best friend, a cattle breeder, was able to enlighten me on the subject :-).
I was researching my PhD into quality of life in people with CFS when I first suspected I was pregnant. After driving around Victoria visiting CFS support groups for a couple of days I was exhausted. The exhaustion was way beyond my normal tiredness and I hadn’t felt that fatigued for years.
But there was something slightly different about it. It was a more natural-feeling exhaustion than the adrenal “wipe-out” fatigue of CFS. I consulted my pregnancy book – no smart phone internet access in 2002! – and found a few things that suggested my fatigue may be pregnancy-related. I was very much hoping so because otherwise my CFS was getting worse again and that thought filled me with anxiety and dread.
Celebration
All this happened while I was staying in Melbourne, so when I returned I bought a pregnancy test. I didn’t want to do it beforehand as I wanted my husband to be there when we got news either way.
That night would have to be been one of the happiest nights of my life. Peeing on the stick (in the loo!), and then standing with D, watching the 2 lines appear. Excitedly reading the instructions to confirm that 2 lines definitely meant a positive. Dancing around the kitchen with D. Laughing, hugging, kissing. Two happier, more in love people you would never find.
(We were blissfully unaware this was the beginning of the end of our marriage – but that came much later!)
After celebrating together, we got on the phone to tell our families. We very quickly decided that there was no way we could keep this joyous secret to ourselves. Neither D or I are what you would call quiet, reserved types, and I decided that if anything did go wrong I would need the support of my family anyway. And so the first weeks of pregnancy began.
The Ups & Downs of early pregnancy
The extra fatigue eased after a few weeks (I can’t remember exactly when). I just found I was more naturally tired at the end of the day, which meant I fell asleep in minutes as opposed to the usual 2-3 hours (one of the crazy ironies of CFS – soooo tired, but can’t get to sleep).
Falling asleep quickly at night was one of the few bonuses of pregnancy for me. My husband liked it because when he got home late from evening shift he could turn the light on, have a chat with me, then go out to watch TV, and I’d happily go back to sleep in minutes (and not be grumpy because he’d woken me and I couldn’t get back to sleep).
In the first few weeks I developed nausea that lasted all day. What a misnomer “morning” sickness is!! I was comforted by the fact most people only have morning sickness in the first 3 months, although in my fifth week, 3 months of miserable nausea seemed an eternity. If someone told me at that point it would not only continue for the whole 9 months, but also for 12 months after pregnancy, I’m not sure I’d be here today. Sometimes ignorance truly is bliss! (NB: I’m sure now that my low levels of Zinc, B6 and B3 from the pyroluria would have been making the nausea worse).
Early Signs of Electrosensitivity
Within those first few weeks of pregnancy, leading up to Christmas 2002 and my 30th birthday on December 28th, the first alarm bells started ringing with regard to the sensitivity to electricity that has become my companion in life to this day.
Admittedly those first signs began pre-pregnancy, but up until then I could still use an older laptop to do my university research, which I was enjoying. I couldn’t use a normal PC or newer laptop for long, due to the headache I would get and the “wiped-out” exhaustion I’d get after about an hour. This could be managed by short stints on the university computers when required and lots of printing hard copies rather than reading the computer screen. Otherwise I’d work on my older laptop at home and was still making steady progress on my research into the Predictors/ Correlates of CFS and Quality of Life.
(From the day we first purchased a mobile phone in 1999 for D’s work, I found that talking on it gave me severe ear and head pain, but I could still text on it, and for me that was the really cool, amazing aspect of mobile phones at the time, so I just used it that way).
But in the first few weeks of pregnancy I started to get the same headaches from my old laptop that I did from PC’s and mobile phones. I didn’t want to believe it, so I tried to convince myself it must be something else causing the strange migraine-like headaches and ear pain. But considering the response was almost immediate – i.e. turn laptop on, sit in front of it, get pain – I reluctantly resigned myself to the truth: I could no longer use my laptop without extreme pain. My world was starting to cave in. Little was I to know it was only just beginning….
Read Part 2 of CFS, Pregnancy & Electrosensitivity: My Story …. (this will be posted on April 16th)
Keep Smiling (if you can after reading this far!)
Louise
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