Week 13
Week 14
Week 15
Week 18
Week 19
Week 22
Week 25
Week 26
Week 28
Week 30
Week 33
Week 36
Week 37

PREGNANCY - WEEK 13

Seeing the scan was amazing. I can’t believe I’ve got such an energetic little jumping bean inside me, wriggling around while I’m flat out on the sofa. And it’s normal. My risk of Down’s Syndrome is very low. I’m imagining all the joy and freedom of it kicking its little limbs around in the waters of my womb.Over the last two weeks I’ve definitely turned a corner energywise. Most days I’ve managed a 10 min walk during my peak energy time of late morning. I feel great while I’m actually exercising. I still feel dreadful in the evenings after eating and first thing in the morning. For the past 2 months my low blood sugar crashes and low blood pressure have been so bad that I’ve had to have three breakfasts in bed from between 8 and 11 am before I could even attempt to get vertical without keeling over. Now on a good day I can get up on two breakfasts instead of three! Still, when the ME takes a dive the nausea, faintness and tiredness are overwhelming.But now on a good ME day I’m feeling great – positive and in control for the first time in weeks. It gives me such a boost of confidence to think that my body’s got through these first 3 months. It feels like I’ve done a triathlon – it’s been gruelling but I’ve come through it with a kicking 6cm foetus. I’m starting to feel more confident about the last trimester, the birth and afterwards now that I’ve got through this first hurdle. I’m looking forward to buying maternity clothes and looking pregnant.It’s so great to have this optimism and this incredible life-changing process to look forward to. It is still scary and I have moments of imagining all the things I won’t be able to do: push a pram down the road to the café, take my child to a mum and toddlers group. But, God willing, I’m going to hold our own tiny baby in my arms and I can’t wait.All through these 15 years of ME it felt like time stood still within the four walls of my confinement while outside the wheels of life went round as friends graduated, got jobs, got boyfriends. Now there’s this incredible relentless march of time inside me, that’s running like clockwork. And it doesn’t demand anything from me in order to keep going, except endurance. And Lord knows I’ve got plenty of that.


PREGNANCY WEEK 14

Today I feel more like Paula Radcliffe huddled over the pavement in the Athens Olympic marathon. At least I did when I crumpled into a heap outside Costcutter after buying some eggs. Thank God M was there with me to shield me from the stares and glares of the neighbourhood. There I was, gutted and still without explanation for why a simple walk of 100 metres defeats me, even if it’s all I do all afternoon. I’m coming up to 15 weeks pregnant – surely these dramatic collapses should have passed by now?My low blood pressure in the morning is better. But that stomach-in-a-vice nausea after eating seems to be getting worse. And if it’s linked to pressure on my stomach from my womb, surely it’s going to keep getting worse as I get bigger? It feels like a mechanical thing. I can’t see how it’s going to get better now as I’m well past the first trimester.I’m scared. I can’t imagine what this pregnancy is going to do to my body which is already so beset with problems. Here’s the ME, knocking me off my little pedestal of confidence and well-being yet again. Though I’ve lost track of whether the ME is exacerbating the pregnancy or vice versa. I just feel very frightened right now about what I’ve let myself in for. I’m completely floored just by a tiny foetus. What will it do to me by the time it’s a 7lb baby? The thought of what lies inexorably ahead – an ever-increasing load on my poor crippled muscles, my internal organs getting more and more squashed until I burst – it feels a bit like facing death. A biological clock steadily wreaking havoc on my body that I can’t turn back.. Only I’m not going to die, right? I’m going to have a baby!!


PREGANCY WEEK 15

I’ve been feeling so much better. I’m here on holiday with the in-laws and haven’t had any severe pregnancy/ME symptoms for a week which feels like a miracle. The nausea is MUCH better – mostly in the evenings now. The tiredness is MUCH better. It’s mostly in after dinner and in the mornings but not to the same catastrophic proportions. And although I keep feeling on the verge of a relapse, symptoms seem to pass rather than building up into the usual crash.I’m also so much more relaxed than I usually am when on holiday here. Instead of feeling agitated about family dynamics and the loss of personal space I’m just happy surrendering all control over my life to the Grand Scheme of babymaking for which my body and person are just a vessel. So it doesn’t matter if my holiday time is besieged by others. I’m still doing my thing, just lying here on a deckchair, my belly swelling by the day.Today I have a blissful morning by myself with a warm breeze and turquoise sea to behold. My prospects seem completely turned around compared to a week ago.


PREGNANCY WEEK 18

I’ve reached four months but haven’t felt it move yet. But hearing its heartbeat was a great joy – knowing there’s really someone there.I’m so proud of my pregnancy clothes. The two pairs of trousers I bought and the skirt my in-laws gave. I’m wearing them before I even need to. It’s as though I want to leave behind my old life and embark on this new one, which, for the first time in 15 years, was planned, desired and granted to me like the clothes I’ve chosen to live it with.ME attacks continue unabated in their ferocity. The last one went on for about 10 days causing me sudden collapses of breathlessness with legs so weak and wobby I felt like a 90-year-old. Also terrible strain on my pelvic floor muscles (at least I assume that’s what they are – never been acquainted with them before). But back in London, the winter setting in feels cosy and rich with transformation. As M says, I’m like a plant that seems dormant in winter but is silently and invisibly producing great shoots which will burst forth in Spring! Hmm… not sure about the bursting bit.Apparently 28 weeks is when the body starts getting into gear for delivery. That’s when antenatal classes are booked and decisions about the birth made. So that’s 10 weeks away. Until then the foetus is not yet a sound bet, as my GP puts it. It’s still a potentiality. That’s fine. I’m quite enjoying it like this.


PREGNANCY WEEK 19

Wow, I’ve had the best week in months. I bow my head to the popular wisdom that predicted a boost in energy from all those mid-trimester hormones. My cynicism and my disgruntled sense of always getting a raw deal as far as my body is concerned have been proved guilty. I assumed that these hormone boosts only happen to other people and not to my crazily dysfunctional body whose rhythms and cycles left planet Normal aeons ago. Oh, me of little faith. I’ve had a whole week of good days without a single crash.I feel like the luckiest person alive. My belly is swelling with new life. We are (M is) going to do up the spare room and plant shrubs in the garden. Suddenly the neighbours we barely say hello to over the fence are coming round with flowers. Everyone wants to share in our good fortune.


PREGNANCY WEEK 22

I’ve felt some movements! At least I hope that’s what they are. At first I didn’t pay any attention because they feel so much like the kind of muscle twitching I often get from ME that I just ignore. Regular, insistent twitches. Then someone told me that’s my baby having hiccups!!I’m still having the best run of energy in over a year and I want so much to make the most of it and get things done before the exhaustion of the 3rd trimester sets in. Even though I have regular “crashes” when it seems that whatever hormone is giving me this boost has finally exhausted my metabolism, they haven’t lasted more than a day or two at a time. I actually had a dream that I’d got to the labour stage without any problems whatsoever and it was all a breeze. I’m noticing the bump getting in the way now when I bend over. Next week is the second scan.It’s amazing to be feeling this well, though not quite well enough to really enjoy the autumn. I’m witnessing changes of colour on the trees through the patio doors. It brings on my yearly longing for crisp walks among rustling yellow leaves, or evenings venturing out into the dark wrapped up warm for bonfire night. Every year I go through this disappointment as hope and the reality of winter with ME clash. Every year for 15 years I've assumed that this year would be different and better than the last. That's ME for you - a permanent deferral of hope. But this year I feel almost resigned that those dreams are never going to happen yet it’s OK because instead I’ve got a baby on the way. It's like I can finally change the record of heartbreak and live life as it is.


PREGNANCY WEEK 25

If I haven’t written for a while it’s because I’ve been so happy.True, I’ve had about two weeks of relapse but it's now passed, and my upbeat mood and energy have returned. It’s strange to think I might never feel this good again. That it is just the product of a peculiar combination of chemicals in my body unique to this stage of pregnancy. The only drawback is the insomnia but I figure I might as well get used to five hour’s sleep a night for when the baby arrives.The best thing has been the 23 week scan where we found out it was a girl. For a few moments I felt they must have got it wrong and realised I must have unconsciously been expecting it to be a boy. Then we saw her beautiful profile captured on the screen and over the next couple of days I fell more and more overwhelmingly in love with her. I could never imagine feeling like this. When my friend, H, talked about falling in love with her baby M I just thought it was a figure of speech, like falling in love with a pair of shoes. But it’s not – it’s the same crazy, impossible surge of emotion as a first teenage crush – maybe even wilder. It made tears stream down my face as we were sitting in traffic on the Old Kent Road with some tacky song playing on Magic FM. I’m sure hormones were partly involved… Will I feel like this every day after she’s born?She’s kicking regularly, every day now. She’s real and alive and I can’t wait to see her dainty face. My confidence is growing in leaps and bounds. About giving birth as well as about coping afterwards. It seems a miracle when I look back to the early weeks when my legs were too wobbly to carry me up the few steps to reach the pavement. But my body feels more robust with every pound I gain. My back muscles are amazingly not giving me any of the problems I thought they would, what with a scoliosis and ME in the equation. In fact all my muscles seem to be adapting incredibly well to my extra weight.My bump is unmistakeable. Every stranger can see I’m pregnant and to anyone who doesn’t know about the ME I appear “blooming” – one of those blessed people living in the blissful state of becoming. My only problems are my usual one of constipation, (big time) and getting an average of 5 hours sleep a night.I’m doing pelvic floor exercises and positively visualising being able to push my baby out for the first time. I’m thinking of the birth as being like those exams I sat through with ME when I had to pace myself to get through the 3 hours. I remember them as a marathon of stamina where I was minutely focused on just physically getting through it. There was no room for nerves or fear or self-doubt. I feel up to the challenge of at least trying for a vaginal birth. Thankfully the obstetrician at the hospital has reassured me that I’ll be in total control and can ask for a caesarean at any point if I can’t make it. So at the moment I feel there is no room for fear of pain. I just have to be incredibly focussed on keeping going, conserving energy to try and last the course.Then I read an account in the Action for ME magazine by a mum with severe ME of her coping stategies. It proved to me that a horizontal, sofa-bound existence can be compatible with a small baby’s need for food, love and clean nappies. I just have to have everything around me to hand and, again, pace myself and not get into a panic when she cries. From what I can see healthy women use up huge amounts of energy on anxiety about whether they’re doing the right thing and feeling desperate about their loss of control over their lives. Loss of control will be nothing new to me. I feel I’ll just go into survival mode as I’ve done before in hard times.For the first time I’m imagining coping on my own with a baby for some periods of the day. Until now I’ve been in abject fear of being totally incapable of coping physically by myself but now I’m almost relishing the challenge of finding energy-saving shortcuts. Watch this space – I might well eat my words in three months time!


PREGNANCY WEEK 26

Well the boom is over and I’ve sunk into the deepest relapse in almost a year. In one fell swoop I’ve been knocked down and put out – lying useless on the sofa with the radio, all the life drained from my limbs, time and ambitions ceased. I find meaning in my day by knitting two little squares of my baby blanket.So pregnancy isn’t the miracle antidote to ME. This is the first time in six months I’ve felt the full force of ME as distinct from the nausea and malaise of pregnancy. Its peculiar and unmistakeable way of severing my energy flow. And yet I’m not alone or useless in my incapacity because there’s another being living her life inside me who is definitely not subdued by my weakness. It’s wonderful to feel kicking inside my lifeless body. I can’t wait to have her in the room beside me but in a sense I feel she already is, keeping me company, keeping me from the solipsism of an acute relapse. She’s demanding my attention already and making me feel necessary in the world instead of feeling like a dead weight. She’s connecting me to the chain of life.I’m no longer afraid of the times when I’ll be alone with her since we are already in a kind of symbiosis. Life still feels full and urgent. There are baby catalogues to study, equipment to order, lots of research to be done!


PREGNANCY WEEK 28

Our baby is officially viable now according to Dr P.! On the other hand, I’m officially on the scrapheap. The relapse continues, ploughing deep into the winter. It’s hard to say how much is the relapse and how much is the 3rd trimester of pregnancy taking the baton from the ME. I’m definitely feeling heavier, less able to lift, carry and bend and starting to feel breathless, though whether that’s due to my extra weight or reduced lung efficiency I don’t know.I hadn’t expected to decline quite so early in the 3rd term. Maybe I’ll get another boom at some point before the last weeks of hibernation. Still, knowing that other ME mums have done this before me helps immeasurably. I feel like part of a club of heroines who defied the odds and regenerated life. Our lives may be tied to sofas and we rarely step outside into the open sky but haven’t let society put us out to pasture. We’ve responded to the cycles of time and nature and our every ounce of energy is calibrated and channelled into the most important of all projects: making and raising a child. After over 10 painful years of having no answer to the question What Do You Do? I’m bursting with pride to be nearly a mum. I’m also very lucky.Although it’s all I do in the day I’m still managing a little bit of cooking and light washing up. Keeping up with the washing is becoming a struggle because of the bending and carrying but it’s still doable. I can still read a little too.


PREGNANCY WEEK 30

Right now I’m supposed to be caught between fear and excitement around the birth. But mostly I feel contentment, especially when I’m having a good day and I manage miraculously to parade my bump in public and act and feel like a normal expectant mum. I realised I haven’t been focussed on a momentous event in the near future for years now. I’m still living in the day to day troughs and peaks and minor cataclysms that are ME as much as ever. So my feelings about the birth and imminent motherhood are dictated by the state of my body. Sometimes it feels robust and able to cradle this little kicking creature and sometimes my back, abdominal and pelvic muscles have so completely buckled under the strain of her that even turning over in bed is a challenge.It seems that when I’m good, I’m surprisingly good but when I’m bad I’m dreadful.I don’t think I feel the fear that normal, healthy women feel. At least not in the same way. It isn’t a daunting, terrifying prospect for me to surrender my body to this biological clock that’s ticking away until the day it decides to rip me open and deliver the next generation. I live with the terrifying, annihilating force of biology stopping me in my tracks every day. I’m used to its stealth and its wily tenacity over my willpower. I’m used to utter powerlessness and to paralysis overcoming me in a matter of hours. I’m not used to pain to anything like the degree it will hit me. But I don’t feel too scared of it because I just can’t imagine it very well.So I don’t think I’ll suffer the wait like normal women do once they’ve stopped working and find themselves sitting at home. Sitting at home and waiting are perfectly normal for me.I am concerned about getting the right answers from consultants about the epidural I’m planning to have and my stay in the hospital after the birth. I want to ask about nutrition during the labour to keep my strength up (their policy doesn’t allow you to eat once you’re in labour); whether I’ll be able to lie on a ball with the epidural, and other burning questions I keep formulating and then forgetting in my panic! Once a coping strategy is sketched out to cover various eventualities I’ll feel ready to embrace the wait.Yesterday my body felt like a cocoon coming to the end of its function, starting to disintegrate under the strain. But I’m so proud of my placenta! I have to keep going to scans every 3 weeks because our baby is small and we see the blood pressure and oxygen levels to my womb pulsing away on the computer screen to perfection. Im proud of my lungs and veins that are holding up and providing a perfect survival capsule for our baby. I’m proud of my heart. Despite its increasing fatigue and strain it has adjusted to supporting the two of us and I can still climb a few stairs and walk short distances. I’m proud that my hormones are behaving, keeping my baby inside me where she’s safest and where I can give her complete care 24 hours a day. (At least for now). We’ve been at loggerheads, me and my body, for so long. I’m deeply grateful to it for behaving in such an exemplary fashion now it’s come to the crunch.


PREGNANCY WEEK 33

I love being pregnant! Having four good ME days in a row helps. I love all the weird things happening to my body: the slightly swollen ankles, the touch of piles, even the insomnia. It’s so wonderful to have these symptoms that anchor me to a universal experience of motherhood, that are for once entirely predictable and appropriate to my condition. They’re so reassuringly knowable. It’s very comforting, and so unlike the symptoms of ME which are utterly baffling and indescribable and drive a wedge between my reality and the rest of the world’s. no words can render them in the imagination of a non-sufferer. Words like “tired” or “having a bad day” only serve to diminish their impact by rendering them commonplace.I’m alternating between nerves at feeling unprepared for the big event and a sense of marvel at its imminence. This event that has the certainty of day and night as time slides relentlessly towards the unknown moment.I can’t wait to see my girl’s face for the first time.


PREGNANCY WEEK 36

Well, I can safely say I’ve coped with pregnancy. I don’t think it’s going to get any worse now than the bad relapse I’m currently suffering. I’m housebound – can’t get to Costcutter any more. My days are reduced to managing to wash, dress and feed myself. I get attacks of breathlessness as I feared I would. But it’s really OK. Not at all the torture I was dreading initially. And not at all the same insidious sickness and weakness of the first trimester. And, triumphantly, I CAN still get up the few steps to the pavement, slowly but surely. Which means I CAN still get to the antenatal class, chauffeured by M, stopping to breathe at each step. I’m so thrilled that I haven’t missed a class yet, even though I just sit there cocooned in pillows like a zombie and only take in half of what’s said. I’m THERE and I really didn’t think that would be possible.I don’t think pregnancy can hold any nasty surprises for me now, in these last four weeks.But beyond that is a whole new world. I get an unreal feeling when our antenatal teacher warns all the other mums-to-be about the exhaustion of the first six weeks with a new baby. I do a mental displacement of thinking that can’t apply to me because I can’t physically envisage being any more incapacitated through exhaustion than I already am when ME’s in full swing. I’m already in the state that the other mums are anticipating – struggling to wash, dress and feed myself, let alone keep up with the washing. How will there be any extra give for a baby’s needs to come first? I just don’t know. How will I find the resources to do night feeds AND keep feeding through the day, every 3 hours? It seems logically impossible right now.But that’s how I felt in the first trimester of pregnancy when my legs turned to jelly and I could barely stand. It seemed impossible that I could be any stronger six months later with an extra 10 kg to bear. And yet I am.


PREGNANCY WEEK 37

8th February 2005: Ellen Macarthur beats round-the-world sailing record! If Ellen Macarthur can do what she did by sleeping in 15min snatches, getting up to change her sails 15 times a day and existing on powdered food for 72 days then maybe I can do the equivalent in ME terms: get through labour and go straight into the marathon of 2-3 hourly feeds round the clock for the same amount of time. My baby will be like her boat – a constant and obsessive focus of attention and her raison d’etre. My feeds will be like her sail changes and my hour or so of cat napping around the clock between feeds will be like her 15 mins of sleep and my unpredictable crying baby will be like her unpredictable storms. This will be the hardest and most rewarding thing I’ll ever do. But I know I can do it because I know Ellen and I are made of the same stuff. I have endured dark, dark, days, and weeks before where all my resources were gathered deep into a tiny pool inside me and everything else died except that tiny core. Becoming a mum will probably be even harder in terms of survival but with an upside of joy that I can’t even imagine.
But then Ellen is a symbol for countless faceless brave people who need the same resilience, endurance and will power just to get though each day. I’m just one of millions around the world whose heroic feats don’t get told.

Excitement is transforming into a kind of numbness of waiting. I can no longer envisage the elation of seeing our baby or imagine myself in the struggle of labour and after. I’m just gathering my final resources around me like a squirrel preparing to go underground.

It could be any time in the next month now. I just have to get through one day at a time. Thank you God for giving me the strength to cope. I know you’ll be there.