IVF is a lonely old road

After my operation and horrible experience with a clinic I’d been having IUI, we learnt of Cambridge IVF by chance – someone at my partner’s work mentioned them. When I was in hospital, I had said to my partner – why on earth can’t we just pay to see NHS people? They had looked after us so well at the Early Pregnancy Clinic and during my operation experience. The care at Addenbrooke’s was excellent. And there was no way I could ever go back to somewhere I’d had such a traumatic process.

I couldn’t handle not being pregnant any more and felt out of control, so I really want to keep trying. It felt like something positive and was my way of coping (this seems crazy now),

We went to Cambridge IVF and have so far had the most wonderful experience. Everyone there is so lovely and caring, just as I would have wanted. We had a real shock during our first consultation because as soon as the consultant looked at my hormone levels, she said that as they were so low the best option was IVF, but even that had a very low chance of success (something like 5%). As the other clinic had guided us to IUI I was super upset as it seemed like we’d wasted months on something with a much lower success rate – even though I had got pregnant the second time. That doesn’t make me feel any better. It wasn’t a pregnancy that lasted.

5% success rate though – who would bother doing anything with those chances?

I also felt a complete failure that because of me, trying for a baby didn’t mean extra fun in bed, it meant injections, operations, and money. I still feel like that.

I’ve actually found the process of IVF fine. After IUI, I was used to the injections (although, with IVF I had to inject myself twice a day with different things, and have much higher doses). And the drugs made me feel better. They stopped the exhaustion and nausea for a while, which was amazing. My doctor completely dismissed this but the consultant said that, as my hormone levels were so low, my body obviously reacted well to having a high amount. I am heading slowly towards the menopause so it makes sense (sad though that is to say). No hot flushes or hormone swings for me – just feeling good.

The minor operation to collect eggs went fine, the implantation went fine. I wasn’t in lots of pain and everything went to plan.

IVF is incredibly intense though. During the IVF process I have been neither hopeful nor pessimistic. Before the egg collection I was very tearful because I knew I could wake up from the operation to find out no eggs had been collected. I had to think about it first to try and soften the blow.

6 eggs were collected (the photo of me is just after I’d woken up and been told that), 3 were viable and we had to decide whether to transfer them at day 3, or wait until day 5 when they had developed into embryos. Documentation about this bit is so hazy – what were the benefits to waiting or implanting? It turns out that people only choose to have them implanted earlier because the waiting is unbearable. It is far better to wait until day 5 when you know for sure if your eggs have made it to that crucial stage, but those two days were so intense and upsetting. I’d still take that over having them implanted and not knowing for a fortnight – but it is like a fortnight’s worth of not knowing condensed into 2 days.

Both embryos made it to day 5 – one slightly later than the other. That could just be down to timing in terms of when the sperm reached the egg, but we already have so much affection for that late starter!

Then another intense decision – to implant both or one? My partner persuaded me to have one, and the nurses were visibly relieved that was our decision because my body can get pregnant and twins is so much riskier. But the next day I was very distressed. Having babies is not easy for me and I can’t leave that embryo there, to destroy later on, but if we’d had a successful pregnancy I knew I’d struggle to have another one.

That embryo didn’t stick though. I’d only felt sick for a bit, the bleeding happened within a few weeks. It wasn’t traumatic like our first loss, but it was still horrible knowing that this wasn’t a normal period, and somewhere in that bright red blood was the tiny embryo we got to see on the screen. I kind of pretended it wasn’t happening.

The saddest thing about IVF is that almost no one knows what you’re going through but that the other couples we see at the clinic, we have not interaction with. I wouldn’t want to have this interaction – it’s a club that no one wants to be a member of. I would be unable to cope if I got to know someone and they had a baby but I didn’t, and I would feel guilty if it was the other way around.

After that embryo failed to take hold we decided to wait a little while and focus on me actually getting better. So that’s what we’ve done. I do feel sad to think that we’ve gone through so much and with nothing positive to show for it. I struggle to think that my IVF journey will most likely end in us not getting pregnant. But we’re about to embark on that final chapter and I have to face it. Dealing with difficult issues is essential – having PTSD has definitely taught me that.

EMDR 5: taking a break

I was really reluctant to go to my EMDR session this time. I told my therapist this and how frustrated I was that I wasn’t fixed, and what an awful few days I’d had.

We didn’t do any EMDR treatment, we just talked instead. She said that I had some good strategies in place and was now dealing with distressing incidents as they were happening. I have come a really long way! But I think I’m also mentally exhausted by all the therapy I’ve been happening. I didn’t realise that until I drove home. I’ve got a few week’s off from therapy because of other things happening and I’m glad and grateful for the breathing space. It has been an incredibly intense 5 weeks and it has been hugely beneficial. My partner said that these last two weeks, I’ve smiled more than I have during the last 6 months. I am getting back to being the old me, and that is entirely down to the EMDR sessions.

Our story is unfinished and uncertain though. We have one frozen embryo waiting for us. Both of us think there’s very little chance it will take, or keep growing. We’d also made the decision that this would be the last time we’d have IVF, or try for a baby. It’s all been so incredibly heartbreaking that neither of us can keep going, keep hoping, keep pushing for a positive outcome. We decided that this next cycle would be when we try and use that embryo, if it defrosts successfully.

It’s beyond intense to realise that within 3 weeks we will know the outcome of that last attempt. I keep crying whenever I think about it. Letting go is so very hard.

I feel it is too much of an obstacle for the EMDR to continue. Until I know, for sure, that I won’t be able to have a baby this time, I can’t fully heal. The only positive thing is that the limbo I currently in will soon be over.

A resurgence of losing my grip

After my fourth EMDR session I was so gutted I hadn’t been ‘signed off’. After all my hard work to get better, someone else was firmly judging me as not better. A friend pointed out that this is a very common trait with me and I do it with everything – work, fitness etc. – I throw everything I can at it, and will it to all be sorted, and am then surprised and annoyed when someone else challenges it.

While I still continue to sleep normally, I’ve had horrible vivid dreams again since the last EMDR sessoin as I’ve woken up. That wasn’t much fun. I had a few really bad days of just feeling tired. Not as bad as before – I found daytime TV unwatchable, which is a relief in a sense because the normal me can’t stomach that kind of thing. It left me a bit clueless as to what do to.

My best day was when I sorted out my bedroom (tidied drawers up) at a very slow pace with Radio 4 on. Yes, that was my favourite day of the week. I realised at the end of that day that actually, I’m not able to do much at the moment. I don’t mean physically – I mean dealing with people, unexpected circumstances and everyday challenges.

I went to see friends for drinks that night – rare these days and good that I felt physically better, but I just didn’t want to go. I wanted to stay in my cave. I found some innocuous things they said hard to deal with and I didn’t know why. I just wanted to go home.

The next day, Saturday, I needed to get to hospital for a long-waited MRI scan. I’ve had a shoulder injury for 18 months and it’s been painful, every day, all that time. The scan date was given to me weeks ago. It also happened to be day 19 of a cycle. There is almost no chance we have managed to get pregnant naturally – trying via IVF is a 10% chance. There was no way I could test to see if that miracle had occurred because it was too soon. I have been nauseous for a week, but that’s my normal at the moment.

I couldn’t say I wasn’t pregnant but I know it’s very unlikely. I’d checked online about MRIs and pregnancy and all studies said that without contrast (i.e. without an injection to show things up) there were no issues.

So we went and walked past the maternity wing and women with huge bumps, past the entrance to the Early Pregnancy Clinic where I’d been checked and eventually admitted for an emergency operation. I filled in my form saying that there was a very low chance I could be 2 weeks pregnant.

They got me to change out of my clothes but then the radiologist came and spoke to me and said that she couldn’t do the MRI because their policy was not do it during the first trimester. But if I’m not pregnant, can I book a date straight away to avoid this issue? I asked. No, the woman responded. Then how can we sort one out? I’ll just have to wait until after the baby is born she said.

Like there is definitely going to be a baby.

I couldn’t get out of there fast enough but I’d already started to sob at the entrance. I cried hysterically all the way to the car, all the way home, and then for ages in bed. And then I had nothing left all that day. A whole, beautiful, sunny day wasted with me being in bed, sobbing on and off all day.

In the car, I wanted to scream and shout and go crazy but I didn’t because my partner was with me and I didn’t want to scare him – and I know he’d immediately try and stop it and make me better. Helping people is what drives him but I needed to scream and shout and couldn’t do that, and so all that pain and anger and frustration internalised.

What she was saying was perfectly reasonable. I should have phoned and discussed with them but it isn’t a real pregnancy to me and I think that is probably why I couldn’t do it. I also thought they would have said it was OK. Whatever my reason for having a meltdown – walking past those places, not being in a good coping place already, having my hopes to sort out my painful shoulder dashed – probably all of that. Whichever way, I completely lost it.

I would love it if this was our story – the MRI got cancelled even though mummy didn’t believe she was pregnant but guess what? You were in there! But I KNOW this isn’t true. I know that I’m not pregnant. Well OK, I don’t 100% know that, but I can’t let myself believe it and I’ve had no symptoms anyway. The day after – the Sunday – I had cramping during the day, and the Monday I was massively hormonal. I know my period will slink along at the end of this week because that is just what will happen.

I still feel completely miserable and very tired from being so upset. Guess my therapist was right to book my next appointment. My PTSD is still there 😦

 

EMDR session 4: disappointment of not being fixed

I was so hopeful that this would be my last EMDR session. After I’d written my letter to my womb (still sounds bonkers) the main thing we’d worked on before – that I should believe my womb was not trying to deceive me – was genuine. I wholeheartedly accepted it, and I could bear to think back to the memory of being told when my womb was empty.

We worked a bit on when I had the emergency operation to check my ovaries, stop internal bleeding and remove ‘the products of conception’. What a hated phrase. Much like ‘miscarriage’ fails to convey the devastating situation it is, this is equally clinical and was hard to see it written down. What it meant was that my baby had been removed. At the time I was grateful it had been as I didn’t want to have a miscarriage and see whatever had developed slowly bleed out of me. I think my body probably did find it a bit of a shock – being pregnant one moment and then suddenly not. And I will never know when the baby stopped developing. But I don’t think these are big issues and it felt a bit fake during the session that I was focusing on them.

It would be stretching things to say that I am better, but I felt I’d been a really good patient (always this issue with me!) and had worked hard during the sessions, and at home, and had done ‘extra’ homework. I was so pleased when my therapist said it was a good idea of mine to write a letter to an actual body part of mine – that she hadn’t thought of that before. I felt so positive and was pleased to say I didn’t believe negative things about my body. We’re done here, I thought! I was fully expecting her to say, ‘you have worked super hard and you are now as sorted as you can be – maybe see you in the future if you want’. But no. She said ‘same time next week?’

I was crushed. Much as I really like and trust my therapist, I want all this to be over. I want to get back to my normal life and be able to function. I was really surprised she said this. It turns out, though, that she was right, as I found out a few days later. More in the next post.

A letter to my womb

This sounds a bit odd but I had a bad health week last week and I think that was because I was pushing myself hard to try and work out why I saw my womb as the enemy. Stuck in bed, exhausted again, it suddenly came to me to write to my womb. So I did and I was amazed at what happened. There was a real light bulb moment when I thought, and realised, and accepted, that my womb was not doing all those bad things to me – that it was just trying to keep my pregnancy going, just like I would have done. My womb is a part of me after all. I couldn’t have believed this before. Here’s what I wrote – not edited or checked, just how it was:

Dear womb,

You have been kind to me – you have carried two of my babies, who are the most amazing people in my world. OK, you gave my hyperemesis, but I forgive you because that didn’t last forever and it is your way of growing my babies (although – really not essential for healthy babies. Perhaps you sometimes try too hard?).

Maybe you thought you were over all this baby making stuff? It’s been a while, I accept that. I can tell that you were definitely starting to look at the menopause, diary in hand, deciding when to begin heading on that road. It must have been confusing for me to start thinking about cots and teething and tiny little fingers, clutching tightly onto my thumb.

Maybe you were just coming around to the idea when I started pumping my body full of drugs to make my ovaries produce more eggs. Maybe you didn’t think this was such a good idea. You remembered the progesterone though – you were straight in there, sending my constant nausea and sickness as soon as that was in my system. You and progesterone are loving bedfellows.

The first IUI, the sperm was put right where it needed to be, but nothing happened. The egg might have missed it. Or perhaps you knew that the egg wasn’t viable so you told it to go a different route and avoid them.

The second IUI, the sperm and egg fused and I knew I was pregnant very soon after. I don’t know what happened that time, or how soon the embryo stopped growing. I know that I was taking progesterone and I don’t know whether this was encouraging you to keep making me sick – confusing you – even though there was no need for us to be pregnant any more.

I did two pregnancy tests, one a week after the first, but I can’t know how ‘fully’ pregnant I was. When I had to take one at week 7 it came up straight away – like you were keen to show me how successful we were. The blood results were high too, like a normal pregnancy. And I was still feeling super sick.

I guess you didn’t know the baby had stopped growing. Or maybe you thought that if you worked extra hard, it would start growing again. I’ve not thought of it that way before.

I stopped having the progesterone so that must have been a sign that perhaps things hadn’t worked out too well, and the hormone levels were dropping, but you clung on. I never had any external bleeding. Your lining was still intact. I will still feeling sick – and honestly, that was very difficult for me. To feel pregnant yet know there was no visible baby in you.

I did have other bleeding though, internally, and it made me very ill. The doctors had to check my ovaries too.

It must have been a real shock to have it removed suddenly, when I was asleep. Maybe you felt them poking around in my ovaries as well. They are fine by the way – working just as well as they have always done.

I know that you are part of me, with me all the time. You are a great first home for my babies – so great that both Toby and Jessica stayed a week late. And you did curb the hyperemesis eventually (though every day reminded me of your presence with a bit of throwing up – just because).

Seeing an empty womb was not something I could ever have prepared myself for. To reach the miraculous stage of checking a pregnancy test AND to have so much sickness, I felt assured about the pregnancy. I had prepared myself for a future miscarriage and I’d even allowed a small voice in my head to prepare myself for seeing a tiny kidney bean baby with no heartbeat. I trusted my symptoms – I trusted you – to be certain that I would see something.

I still get a jolt of cold shock when I think about that day, although I’ve been working hard on dealing with my feelings. But I have been very angry at you. I have viewed you like an enemy, trying to hurt me. Why would you have deceived me like that? Maybe…just maybe…you weren’t.

Maybe you were just doing your best, working in the only way how. Maybe you just don’t realise or accept how much I want you to be filled with new life.

You’ve been around my whole life but you’ve only fully housed two babies. That’s 18 months out of 41 years. Don’t you want to be useful just one more time? (This would be a reasonable exchange for monthly bleeding and pain since I was 13, surely?)

If my eggs are just not viable, I think I could accept that. But growing a baby and then stopping – but not stopping – seems so cruel.

You were doing your best. You are a part of me. You know how much I love being a mother – and it’s you who makes me that.

I am going to try and trust that you will do your best, that you have always tried your best, and that there is no hidden agenda. You aren’t working for someone else – you are my agent, and my agent only.

I cannot ask, or plead, for you to let an embryo stay put. I cannot ask you to make sure it is one that will last full term. I accept that those things are beyond your control.

Please do carry on doing your job – of providing a cosy home for my babies. But please – if the baby dies, please let it go.

Oh.

Were you keeping it because you wanted to keep that pain from me? Were you hoping you could make it better if you clung on? I would do that, and you are a part of me after all. I wouldn’t have wanted to let it go either. I would have clung onto it until it was wrenched away from me – just like it happened with you.

I see it now. You were just holding on.

And you were right – I would have been devastated to see marks of bright red, to feel cramps instead of nausea. To know that it was beginning of the end of that tiny life.

But seeing an empty screen was much worse. Being told there was nothing there was much worse. Crying in pain was much worse. Having an emergency operation was much worse.

No one saw that baby until then – the baby that you had worked so hard to nurture. It was there, but it would have been OK for you to let it go. Honestly. We both need to learn to let our babies go.

 

 

 

EMDR session 3: my body is still my enemy

I feel that I have made huge progress with the EMDR sessions – I am now acknowledging my grief, and physically I feel a lot better for the most part.

The third EMDR session wasn’t as emotionally draining as the previous session, but I think that is because there is a mental block I just can’t get past: that my body is my enemy.

My body continued a pregnancy, even though the baby had stopped developing. I had weeks of developing hyperemesis, identical to how it developed with my two children. The only positive thing about the hyperemesis with my previous pregnancies was that I always knew – or so I thought – that the babies were growing. They were taking way too much from me, sure, but they were OK. To discover that this didn’t have to be the case – that my body could behave in that way but that my baby wouldn’t be OK – was a massive shock.

It makes me terrified of future pregnancies because the only way to know that a baby is in there is to wait for an early scan. But that means waiting, and being sick, for 5 weeks. That’s a long time in limbo. And after that scan? I will never be assured, never be able to trust blood tests, and only be able to be reassured whenever I have a scan, which won’t be often. That’s not the best frame of mind to have during a pregnancy.

I feel so strongly that my body is a liar. That it deceived me. That it is cruel and divisive. It sabotaged my pregnancy. It let me down. It is my enemy.

I feel that I need to somehow get it to look the other way during implantation – for it not to realise what is going on until it’s far too late and my pregnancy is firmly established and it has no choice except to support my pregnancy.

Rationally, I could look at my body and say that it has given me two healthy babies, and that it was just trying really hard to sustain one baby, and the other embryo we had implanted last month that just didn’t stick around.

I know that it isn’t my enemy – but I don’t believe or feel that.

I don’t even know where that comes from, and I was really trying to work that out in the session. I had a difficult relationship with my mother, and haven’t been in contact with my parents since I was 22 (the right decision for me). She told me I wouldn’t make a good mother. I am a brilliant mother. If she’s still in my head somewhere, affecting this, I struggle to make a real connection about it. And if she is – jeez, I wish she’d go away.

I have been working very hard since the EMDR – thinking, thinking, thinking – and visualising my internal body – the parts I can’t see that do all the fertility work – and trying to see it for the good things it’s done, to try and de-personify it but I am currently getting nowhere.

We put the IVF on hold for me to go through EMDR, partly because we recognised that I needed to deal with my grief and that IVF wouldn’t help (seems obvious now, wasn’t at the time) and to try and get myself in the best possible mental shape. It’s also recommended that EMDR isn’t done during the first trimester.

While I’d like to think that a person’s mental state doesn’t affect fertility, I have to accept that there is a chance it might (and probably, really does). And as long as I continue to feel at war with myself – see myself as two different people, one who is maliciously intent on giving me the cruellest blow ever – that my body is pregnant but there isn’t a healthy baby, there is another barrier to a successful pregnancy that don’t need.

I wish I could stop this internal warfare. At the moment though, it’s still beyond my control.

 

 

Looking a pregnant woman in the eye

One of my son’s best friends came over for a sleep over. His mum is heavily pregnant, due around 3 weeks before what would have been my due date.

I mentioned her in a previous post – I found the way she told me about her pregnancy a real shock and I couldn’t deal with it at all.

I didn’t properly look at her bump today, but as we were talking I did internally acknowledge that it was there, and that I was really sad that I didn’t also have a bump. I feel that is real progress!

Before my EMDR treatment I would have just frozen and not allowed any of that in. I would have dismissed and ignored it. Now I am – at last – allowing myself to acknowledge that these sorts of things are upsetting. Because I’m able to do that, it isn’t so overwhelming or unpleasant – it doesn’t have the chance to overwhelm my senses and shut the rest of my mind down.

I’m pretty pleased with my progress today. Maybe at some point I’ll be able to look directly at a bump too 🙂

‘Yes you’ve had a miscarriage but you already have two children’

I have heard this from so many people, and now that I seem to have unfrozen during the EMDR treatment I’m mostly a ball of anger about so many things, including this.

I have been told so many times to enjoy the two children I do have. Forget about the baby that stopped growing, forget about trying for another one: be happy with your lot.

My children are amazing, wondrous beings and I love them so, so much – and I am a darn good mummy. They are my life. So why *wouldn’t* I want to have another one? I DO enjoy my time with my children, but at the same time, I have also lost a baby. It is ridiculous to think that one cancels out the other.

Nobody actually wants to have just a baby (or if they did, they’d be crazy because that’s the really difficult part!). They want a person – to grow another human being that they will spend however many decades raising and being involved in that person’s life, nurturing and guiding them and occasionally standing back and looking on in amazement.

When I got pregnant, that was what I could see – and see so clearly: another wonderful human being. I cannot feel less grief just because I already have two children. That doesn’t take the pain away; it doesn’t help me feel less sad. That baby was a sibling to my children, it would have looked like them and most likely shared some personality traits. I could see that baby in my mind until I was suddenly told it was no longer there.

I shouldn’t be made to feel guilty for being sad, or for wanting to have another baby. And my partner doesn’t have any children of his own. He has always, always wanted them – and he is as much a part of the equation as I am. Telling me to stop trying is also telling him to stop wanting a child. That’s a terrible thing to say, but I’ve found myself explaining or – worse – apologising.

I cannot be any less sad about my baby just because I’ve managed to give birth to two healthy babies. Having them in my life certainly keeps me going and stopping me from going mad – before I had my son I had nearly lost it, so desperate was I to be a mum.

I know that other people have had terrible loss and don’t have children in their lives. I know that others have lost their babies after they were born. I know that other people are going through terrible things in the world. But people who mention those things – or just say that I should be grateful for what I have – are trying to quantify my grief.

Grief doesn’t work like that.

I loved my baby with abandon and not in some proportional way to its physical size or how long I was pregnant.

Being a parent is the best thing ever – I love it. And I look at my partner, who adores my children and has so much love to give, and I can see how much he wants his own child. I get that – that is how I felt. How can I not try everything in my power to make it happen for him too?

If my son fell over and grazed his knee, would my response be to tell him that he couldn’t feel that pain because somewhere, someone else had a broken leg? Of course not. I would accept his pain; I would acknowledge his tears – and try and make him feel better with a plaster and kisses. Why don’t people treat emotional pain in the same way?

Please just accept my choices.

Please allow me to grieve.

PTSD and exhaustion

A couple of days ago I went on a really long walk. Well, a really long walk for my current self. I gave up wearing a Fitbit in December because I was barely managing 500 steps every day and I didn’t want a reminder of how inactive I was. My partner had his on though and reckoned we’d done around 15,000 steps. That seems incredible to me!

Before I was hit with PTSD I was a super active person. I ran, went to the gym to do Olympic weight lifting, and did a lot of circus stuff! That’s where I met my partner, in our local circus school (take that, internet dating). We did aerial circus stuff – I love the aerial hoop – and also do acrobalance together.

Around this time last year I had a huge 40th birthday party and performed on the aerial hoop during it. My partner and I also did an acrobalance routine. Some awesome circus friends did routines too. It was such a great occasion – prancing around in a sparkly leotard, happy and happy with my fitness. Then we launched into trying for a baby and it ended up in an emergency operation and the loss of my baby and PTSD.

For most of the last 5 months I have been unable to get up in the morning. Most days have been spent fighting to feel less tired. The kids have got used to walking themselves to school in the mornings, and my day has revolved around finding enough energy to be able to collect them at 3.30pm. It’s a 3 minute walk down the road but many times, I’ve been sweating with the effort, feeling faint and nauseous, struggling to stay upright – like I’m carrying a huge weight on my back. Often I’ve gone in my pyjamas, hidden by a long coat and boots with my unwashed hair hidden under a hat.

I don’t recognise myself anymore. Fitness and physical pursuits are a huge part of my life, and a huge part of how I spend time with my partner. It’s also how I’ve dealt with emotional difficulties. I took up running when I split up from my husband and it was my lifeline. Running allowed me to process things in a really positive, controlled way. I felt physically better after a run, and life just seemed better generally and more manageable. This is how I wanted to deal with the loss of a baby, but my body has prevented me from doing it. That has been incredibly frustrating for me. The way I would deal with something is not something I am allowed to do – my body is truly at war with itself.

When I’ve picked my kids up from school so many people – who only know I had an operation – have told me how well I look. First, that’s total nonsense as I don’t look well or like my old self at all (brightly coloured hair, make up). Second, my illness is invisible. I may be present at the school but it’s taken me 6 hours of slowly getting out of bed to get there. That isn’t being ‘well’. It’s made me really tired and defensive – thank you but I’m not well actually, I’ve been stuck in bed all day. Thank you, but I am just the same as I was last month. ‘Why?’ I’ve been asked so many times. I’ve only been able to say PTSD recently; before then it was just upsetting as I didn’t know.

I have been to the doctor so many times, distressed at how I can’t get myself well, railing against why I am so tired all the time. She’s always just said there is no obvious reason for it and that she can do nothing. Not once has she asked about events that led up to my operation. Not once has she broached possible mental health issues. I find that staggering, especially looking back.

It isn’t my normal to be floored by exhaustion all the time. I tried to go walking so many times before Christmas and every time I did, I’d be back in bed for days afterwards. It felt as if I was being punished for trying to be active. There was a clear before and after too – and that to do with the baby. Of course that is the reason for all this tiredness. I have no idea why my doctor wasn’t prepared to try and help me, but that’s been very unhelpful.

‘Just rest,’ everyone has been saying. But resting isn’t doing anything – and it isn’t resting, as in restful, it is being trapped in a stillness I’d do anything to avoid. And also, I’ve been resting for 5 months with minimal improvement – how long am I supposed to put up with doing that?

There has been some, slow, improvement. I’ve been able to go swimming from January – that, I’ve find, I can still do when I have almost no energy. It’s been so wonderful to be somewhere else, and be in the water – I find it very freeing to be in the water. And it’s somewhere I can go from my bed, in my pyjamas, and come back again. But it hasn’t helped with feeling wobbly, staggering around, like walking is the most difficult thing in the whole world.

I have felt like a shadow of my former self, and mostly distressed, for 5 months. But since I started EMDR I have felt much less tired after sleeping. I have had sudden bouts of tiredness, or sleep, during the day (actually very impractical when trying to look after two children). But I have suddenly found myself feeling…more normal. More me. I am also much less nauseous too, which has been with me as a nearly constant companion since I lost my baby (fun!).

The walk we went on, I was struggling near to the end but I’d walked so much further than I thought I was going to be able to manage. And, crucially, it hasn’t had a knock on effect in the days afterwards. Yes, I was tired the next day, but not laid up in bed tired. A few months ago, a walk like that would have been impossible – and if I’d attempted it, I would have been stuck in bed for a week.

I am so cautious about thinking that I might actually be beginning to get better – every time I’ve said that to someone, I’ve been back in bed within a few days. But this time really does feel different. That huge weight I was carrying on my back before isn’t there – I can walk upright and it isn’t the most difficult thing in the world. I now also sense that I need to do some exercise in order to sleep well – and that’s the old me. The me that I’ve been with the last 5 months has been someone who has done no exercise at all during the day but still slept quickly and deeply.

I’ve also noticed a change in my hunger. I haven’t been super hungry but I’ve eaten a normal amount of food for me, even though I’ve not moved from the bed or the sofa most of the day. I have needed that food. This past week I’ve been carrying on eating that amount, whilst also trying to do a reasonable walk every other day, and just be as active as I can the other days. And now I’m much less hungry. I’ve been unable to finish things – or I’ve eaten a normal portion of food without thinking and have felt uncomfortably full. Things seem to be changing.

One of the greatest difficulties about all this is that I still want to have a baby, and with that would come hyperemesis gravidarum (not to mention the sleepless nights for years afterwards if it’s anything like my other two children). That’s why I’ve found the whole ‘you must get well’ thing futile. Why bother, when I want to do something that’s going to make me ill? And in the back of my mind – what if I enjoy being well so much I realise I can’t go through any of that again?

I can’t hope for a future where I’m back running, going to the gym, and doing circus things because that would be a future without a baby. It will take months for those things to be possible again and I don’t have that time. If I could get there in a couple of months and got pregnant again, I’d be losing all of that all over again. It’s a huge amount of turmoil churning away for me.

To try and be positive though – I am so pleased about that long walk. It makes me remember, just a bit, what being out and about and running feels like (I couldn’t remember that anymore). I need to stop hoping or thinking about what I might be able to do physically – or not – in the future. I have to try to embrace today.

Shit things that good people have said

As I said, I’ve been plenty angry this week. This is because I look back and I realise just how damaging some things that were said to me were – and how, in part, they have made the grieving process that much more difficult.

I hadn’t told many people I was pregnant, but some I’d had to tell because, as with my other pregnancies, I’d already been super sick. But you know what – that’s almost an apology in itself isn’t it? So here’s the first thing that some people said:

‘You shouldn’t have told anyone you were pregnant in the first place.’ Translation – now we have to deal with your miscarriage and that’s something you should keep totally private and not talk about because it makes US feel uncomfortable. Not helpful. Miscarriage is so rarely spoken about and it bloody well should be. I find it very distressing that people *don’t* know that I was pregnant, because they have no idea that I am grieving. I don’t want everyone to comment on it – but I would prefer that people knew. And those who I have told and have said that to – your own discomfort should taken second place to acknowledging my pain.

‘At least you know you can get pregnant.’ Translation – there is something positive for you to hang onto, it wasn’t all bad. I found this one of the most hurtful things to hear. I already know I can get pregnant anyway – I have two kids already! Our chances are super low at the moment because my levels are low and there’s a greater risk of miscarriage. Am I really supposed to rejoice because my body managed to get pregnant? Even though I’ve just told you that my baby died? There IS no ‘at least’ – I am grieving. This particular story – my story – is about my baby dying, not a successful pregnancy. And successful pregnancies are the only ones that count (why isn’t that obvious?).

‘You can try again.’ Translation – you need to move on and stop grieving. If my 9 year old daughter died, would anyone say ‘Well, you can have another child – and actually you’ve already got one’. Yes I know that my baby hadn’t taken its first breath in the world but that doesn’t matter – it wasn’t a bunch of cells, it was my baby – please acknowledge it as that. While I can try for ANOTHER BABY, I cannot try again for THIS baby – that baby is gone forever.

‘Was it a phantom pregnancy?’ Translation – you had imagined it. When I was in total shock about being told that there was nothing on the screen and molar or ectopic pregnancies were being suggested, I had so many friends asking me questions, as if I had any clue what was going on! This included friends who’d seen me looking ill. I didn’t want to be bombarded with questions and what I felt were challenges. It was exhausting justifying my position – that all my tests had come up as positive, and were continuing to do so. And in the end, actually there WAS something in the womb. I really was pregnant. Even a molar pregnancy is still a pregnancy. I really didn’t need anyone suggesting anything. Just a few words of ‘Oh no, I am so sorry you are going through this’ would have been enough.

‘How many weeks pregnant were you?’ Translation – I am going to give a proportional amount of sympathy to you and YOU should grieve proportionally. If you’d been carrying your baby much longer, you would have deserved more grieving time. Again – my baby including that anticipate future died. The only people who asked this were mothers and surely, if they’d thought back to when they were pregnant they would know that love is not proportional to how long you carry your baby for? And above all – WHY DID THEY NEED TO KNOW? It is just fact collecting. Would you ask ‘how many years were you married to your husband?’ if someone told you they’d died? No you wouldn’t. It is so irrelevant and prying. Fact collecting – distilling a situation down to just the facts – is the worst.

‘Lots of people I know got pregnant after they’d stopped IVF.’ Translation – you are somehow affecting your chances of pregnancy, that you are basically trying too hard (and perhaps this has caused your miscarriage) and if you really want a child, just give up attempting it. Seriously – what am I supposed to do with this information? I don’t doubt that it’s true but will it be true for MY story? You have no idea. Will you saying it make it come true for me? No. Will saying it make me suddenly want to give up? No. But all this is to do with the future – which neither you or I or my fertility specialist have control over. Let’s come back to now, which is me grieving for the death of my baby. Can we please focus on that? If you can’t deal with my grief, please don’t talk to me right now.

‘Are you pregnant yet?’ Translation – we know you’re now having IVF so you have obviously moved on from your grief & I’m impatient with your story. This is one of the worst because I haven’t moved on – it was mainly my way of coping WITH my grief. And a new pregnancy will never replace the baby that died. I find this one really hard to cope with anyway, because if there was news I’d say so, and it makes me feel like it’s a long road I’m forcing everyone to go down – even though I’ve told hardly anyone that I am having IVF. And this was actually asked while I was miscarrying the first embryo of IVF, and then asked again a few weeks later. I found it incredibly upsetting but I locked it all inside and responded with facts.

I KNOW that these people are good people – and that what they say comes from trying to help. But it’s been very damaging for me. Trying to convince people that I was pregnant – to have that pregnancy believed – I could have done without. Being told that I should view it in a positive way makes me think that I *should* view it like that, and that I must be wrong to grieve. Quizzing me on how many weeks I was pregnant also makes me feel that I have no right to grieve – or that it must be limited in some way. Telling me I shouldn’t have mentioned it makes me feel guilty or wrong for doing so – that my grief must only be privately acknowledged by me and my partner. Telling me I can simply try again, or facts about success after giving up, is pushing my grief – and my baby – away. Bluntly asking me about pregnancy – when it is my right to decide when and who to tell – had triggered lots of distress.

It has been confusing, knowing that these people are my friends, and are good people and yet, they have caused a tremendous amount of damage – and have halted the grieving process. It has taken me this long – 5 months – to realise that what they said was wrong and just very, very unhelpful.

At the time, I was so distressed I was looking for help – and it’s taken me this long to realise that most people just can’t give that help. But I don’t think I could have protected myself any more. These people asked me questions, and so I told them, and then got their responses.

I’m struggling to know how I could protect myself in the future – or whether I should ever tell them how much their words were hurtful and unhelpful. All I know is that it did not help me, and that a much better thing would be so just say how sorry a person is. That’s really the best thing to hear.