This time last year was probably the most difficult stage of our journey to have a child so far. I was in the midst of fighting my case to persuade our CCG to grant funding for IVF and I was terrified that they’d say no again. If I’d known then that just a year later I’d have a decent-sized bump, looking at my baby on an ultrasound scan at twenty-six weeks I really don’t think I’d have believed it.
Of course it hasn’t been plain sailing. I never really allow it be! I have started to enjoy being pregnant and I check out my bump multiple times a day. But as I became more aware of our baby’s pattern of movement I knew it would lead to a meltdown when I couldn’t feel the baby in the same way as I’d become used to. This happened over the last two days. On Sunday I’d noticed a slight reduction in movements but I put it down to being out of my weekday routine. By the end of Monday I’d barely felt the baby kick and I spent 3.5 hours lying on my left side, eating ice-cream and drinking cold, fizzy sugary drinks. It worked and the baby kicked a few times but that was largely it. I am used to being kicked a lot now! Eventually The Boy & I visited our local triage unit. As soon as I sat on the blue sofa in the waiting area the baby kicked! They measured me, checked the heartbeat & asked me to stay for half an hour to take a trace of the baby’s movements and heartbeat. It turns out this baby was moving a lot but I just couldn’t feel it at all. I have a posterior placenta so I should have good sensation of the movements so they couldn’t really explain why, but thought it had probably just moved to somewhere with more space to move its limbs around. Just as we were leaving the midwife mentioned I was measuring small and asked us to return this morning for a growth scan. By this point it was about 2am so you can imagine I didn’t get much sleep last night! On a side note a couple who had also gone to triage last night left shortly before us WITH THEIR BABY! The man looked completely shell-shocked whilst the woman was beaming. The Boy overheard him saying the baby was premature and he became worried (& a little bit excited) that we too might leave with a baby in tow! I’m assuming they were wheeled off to a ward somewhere but I think she must have been further along than I am, because she was holding it in a blanket.
Anyway, after a sleepless night the growth scan turned out to be fine. The baby was back in the range of normal and it was suggested that because I’m tall (6ft) my bump may be smaller because the baby has more space? Who knows! The sonographer checked my fluid levels and my placenta so I feel like I’ve had a fairly robust MOT. It was also really lovely to see the baby again. I tried to sneak a peak at the gender area – there was nothing obvious but even the sonographer wasn’t sure if she was looking at an arm or a leg at one point so it probably wasn’t the clearest picture! My husband wants a surprise & I do too really but I’d also love to know.
On another side note I made the epic mistake of buying myself a second-hand swimsuit on eBay. Never do this! In hindsight I don’t know why I thought it was a good idea but I begrudged spending £30 on something I’d only wear for a few months so I went on eBay instead and found a really pretty costume. When it arrived I naturally checked the crotch to make sure it was clean and there was a crusty layer of something resembling vaginal discharge on it!! I had to construct an awkward message explaining that it wasn’t clean ( I didn’t go into details but figured she’d find the stain when I sent it back) & requested a refund. I know I could have washed it myself but I just couldn’t have worn it knowing what had been there – yikes!!
So there we are. Twenty-six weeks, still totally anxious and expecting to miscarry any day but enjoying being pregnant more and more, finding fun in the little things again and even managing to relax at times!
So last week I felt pretty sorry for myself … until I visited my herbalist. For all her wacky ways she has a way of making me feel much better. She pointed out that I’m on high doses of hormones and I’ve been on and off steroids for the last few months. She was impressed that I’ve been managing at all! Her additional take on this is that I’ve also changed a lot and when I go back to these friends I become the person I once was and I don’t like it. Interestingly my husband has said that over the last three years I’ve not wanted to go on the weekends away with these girls and I’d stopped reporting that I’d been enjoying them – my best friend echoed the same. I have changed. My personality when I’m with my new friends is much different. I’m more fun, more chilled and generally more like who I want to be. And I really don’t like becoming the whiney, stroppy girl I was last week. My herbalist thinks it needed to end in a big bang because I was clinging onto a friendship that wasn’t really going anywhere and that was actually dragging me down. I think I agree. Having reflected on the support I’ve had from them since MC number 1 it’s been pretty poor. So for what purpose do I need to keep trying?
Whilst this was happening I put up a forum post about it on a recurrent miscarriage forum and someone contacted me and asked if I’d like to meet up. It turns out we live in the same area and so we had coffee & cake on Saturday (don’t tell my herbalist!) – and she’s so lovely! So, while the door has definitely closed on the three girls from last weekend, this weekend saw a brand new door open.
I’ve also contacted some girls I’ve made tentative friendships with over the last six months and invited them out for dinner. I have friend-dates lined up every day for the next two weeks :). I am getting a new life for myself, and I should probably be grateful for the disastrous events of last weekend for giving me the kick I needed.
My herbalist also pointed out that when I was just following her advice my cycles were perfect: 28 days long, ovulation on Day 14, no mid-cycle bleeds. Now I bleed just about every day, my cycles are getting shorter and my period lasts for less than a day. She blames the chemicals (she would!). But she makes a good point. So for now because we’re just waiting for IVF anyway I’ve gone back to her regime. I’ve stopped the Cyclogest and the steroids and have picked the diet back up again (almost).
Time to get back to being the new me!
I thought I’d been managing to hold it together but it seems that I haven’t. The friends thing that I’ve harked on about for a while now came to an abrupt conclusion this weekend.
The three girls that were supposed to come to stay in January last year came to stay in my town. Two days beforehand I asked if I could be picked up on the way to the hotel as I lived nearby. Unbeknownst to me the driver has a phobia of driving in my town so she asked if we could just meet in town instead. I (being overly sensitive) got upset that she wouldn’t take a 5 minute detour when it takes me an hour and twenty to get to town. I messaged back saying surely the hotel was easier for them too but got no reply. I tried ringing her but she didn’t pick up. I could see that she’d read my messages on Facebook because it tells you, so in my mind she was avoiding me and I didn’t know why. I rang one of the other girls. She had a migraine and said she’d ring the next day. But she didn’t get chance. She said she’d ring the next day too. But she didn’t. By then this was the day of and I’d sent a couple of really stressed out messages to the Mutual Friend. I’d had a text from the Driver who’d said she’d pick me up, but I thought it might actually be out of her way if she was coming in on a different road so I said I’d get the bus.
Once in town I received a text saying they were at the hotel. Really? I replied. So I could have had a lift… Cue massive row. Underlying all this is that I’d texted the Driver in May to say I’d had a miscarriage and she never replied. I’d assumed she’d forgotten but I was still hurt. Normally I don’t confront this sort of issue but I’d planned to and had told our Mutual Friend about this. I didn’t get the chance. The Driver rang me saying that they’d discussed it on the way over and that they were all “in bits” about seeing me and didn’t really want to. She said she was ringing to say sorry but she didn’t know what it was she’d done & that it was unintentional. When I say she said sorry, she said “SORRY!!!!!”. It turns out she’s been having problems herself and has nearly had two nervous breakdowns this year. Again I didn’t realise & my heart broke as she told me that. I realised that as much as I have things going on, so does everyone else. She puts up a facade on Facebook – it looks like she’s living the dream – but apparently it’s not real.
I felt awful but I was still hurting and tried to explain why. Although she did listen I didn’t really feel that she processed what I had said. Eventually we met up but we didn’t discuss it at all. For the whole weekend. The mutual friend and I did and she gave me a reality check. A harsh one but probably a fair one. She said that it was my problem and that although she understood I’m going through a difficult time she couldn’t get to the bottom of why I felt that the Driver didn’t have a very high opinion of me. It’s cliche I know but I don’t think anyone should have a high opinion of me. I can’t have children. It’s not that I don’t want them. I desperately want them but I can’t. It’s such a basic flaw in my schema and when I meet these three, obviously they all talk about their children and I feel very out of place. (I only think this about myself by the way, not anyone else struggling to have children & I’m aware that that’s not rational). The mutual friend said I needed to sort it out (she acknowledged that this is not easy) and said I needed to consider whether my move abroad will actually fix my issues.
The next day they left together and I spent the entire day in tears. I also sent the Driver some flowers to apologise for being over-sensitive and hurting her. She texted me today to thank me but said she’s still struggling to let go of the hurt caused at the weekend. She was tactful not to say the hurt that I had caused. She then said she can’t get over the fact that I thought that she’d been intentionally hurtful. This is something I was careful not to say because genuinely I don’t think for a second she was. Somehow I’ve given out a misconception which I feel I need to put right but feel it could cause more stress. She ended the text by saying we’re both too sensitive to be around each other and advised that I find a safe place and look after myself. So I’ve ruined an eleven year friendship in one weekend. Well done me!
It’s probably deserved but I’m hurting again. I’m hurting because I think very highly of this friend and I suppose this is why I felt so rejected when I thought she didn’t acknowledge my miscarriage or when she wouldn’t pick me up or answer the phone. Plus I’m ridiculously over-sensitive and hormonal at the moment. Confrontation is really not me and I am truly scarred by this experience. I’m hurting because I went to meet the three of them, knowing they’d discussed it, knowing they were upset with me, but I still went because the friendship had meant something to me and I’d wanted to sort it out. I’m hurting because I don’t think I got my message across at all and the fact that they thought I’d believed her behaviour was intentional demonstrates that they didn’t fully hear what I was trying to say. I’m hurting because essentially I’ve lost those three friends now.
I’m really, really hurting.
I read somewhere that people with recurrent miscarriage have the same anxiety levels as soldiers with PTSD. I was a bit dismissive of that statement at first although it came from a credible source. Lately I’ve been thinking how true it sounds. I’m currently agonising over every last thing I do. Particularly on my 2WW but even more so when I’m pregnant. I cannot move for worrying about whether or not a) I’m possibly pregant and b) whether what I’m doing might kill any potential baby. I live with this night and day. I eat fruit because I need the vitamin C but then I stress about eating too much sugar. Then I eat chocolate because I feel I’m not enjoying myself enough and then I stress about that too. Then I stress about being stressed! I’m on alert every minute of every day and my fight or flight response is on a knife edge. Every time I feel threatened I react. I’m not excusing this. Of course not, this is an awful problem to have. I’m trying really hard to understand it. Otherwise the three friends I have just lost will be joined by everyone else I care about. And then I really will be depressed.
Recently I went on holiday – just for a week – to my parents who live in France. I loved it at first but as the end of the holiday came nearer I found my self dreading going home. I’ve never felt like that before. I always feel a little bit down about going home but that’s usually it. This time I cried for the last two days – somewhat ruining the holiday! I’m also a bit of a sun fiend and the weather is never reliable in France so we had some cloudy days. My mother takes it really personally if I get upset about the weather – and again it’s never made me cry before – but this time I did & my mother got cross & I left France crying, not speaking to my mother. Fun times! It wasn’t my usual post-holiday blues. This was about returning to “infertility”. While I was on holiday I could forget it a bit. It was really lovely & I began to panic when I realised I was coming back to it again.
Once we got back we were literally plunged back to our infertile sub-life as we discovered that my gynaecologist had sent my funding request for IVF. He’s asking our CCG if they’ll consider funding it even though I don’t meet the criteria. I don’t meet it because I have been pregnant in the last twelve months but it hardly seems fair because I equally don’t have a baby as a result of my pregnancies. We quickly sent off a letter in support but it got rejected the next day. I very much doubt they even read the letter. So I literally sobbed on the kitchen floor for about two hours until a very kind friend took pity on me & agreed to take me out to get drunk. (I’d done a pregnancy test that day too – negative – very bad day!!).
With the sobbing & drinking done & dusted I finally felt able to form a plan. Being misdiagnosed with epilepsy has cost me seven years of being able to try for a family. This is because I was never stable on the medication & a seizure can cause a hypoxia to a baby. When I started trying in 2014 I was as stable as I could be & I took a very calculated risk. I miscarried but I hadn’t had a seizure so I didn’t attribute it to that. However I did think it might be due to my meds. With my next pregnancy they took me off the meds & all my seizures stopped. The diagnosis has now been withdrawn & I’ve been seizure-free ever since.
I’ve been in touch with my GP who has already written a letter of appeal, stating that this misdiagnosis has disadvantaged me. My consultant has done the same and I’ve contacted a friend of mine who writes arguments for a living so hopefully she will be able to help. This friend does not feel my urgency though. She will do it in two weeks time. I’ve been hovering between being eternally grateful that she’s trying & simlutaneously wanting to ask her if she can hurry up. I’ve opted for being grateful. She has step-kids and they have put her off having babies for life. So I really understand why she can’t fathom why this is so important to me. Finally I’ve written to my MP. Hopefully she will agree to take on my case and add weight to my appeal.
So that’s that for now. I am a lot more sane now than I was last week. Once more I have to wait though & I still haven’t acquired any patience. Meanwhile I have some horrendous patienTS who are keeping me on my toes – literally for some of them because they are aggressive and bite and spit and hit and molest me when I get close enough. I am starting to think I would like a nice quiet job in a flower shop. But then some of my really cognitively impaired but very sweet patients say things that are super nice, or their face lights up when I enter the room & then I think I have the best job ever. Most of the time. It’ll do as a distraction while I await the next step of my appeal.
I know it’s not fair of me to be annoyed about this but I can’t help myself. I am the last of the people I physically know that has been through one or more miscarriages and hasn’t gone on to have a successful pregnancy. All the others that I know have either given birth or they’ve just announced their pregnancy on Facebook.
Facebook pregnancy announcements are always my bug-bear. They kick me hard in the stomach, whether I’m expecting them or not. My friends that have also suffered from recurrent miscarriages and/or infertility have also shared with me their frustrations at seeing Facebook announcements. So it’s come as quite a surprise to me that each & every one of them has gradually joined “the club” & added an announcement of their own. Today was the final one. I genuinely believed that this friend wouldn’t have done it, given how upset she’s been by others in the past. I’ve known about her pregnancy since she has. I’m genuinely delighted for her & she’s had six years of trying to conceive naturally & 3 ectopics. I get that she deserves this moment. But it hurt deeper than I imagined when I saw her scan picture and saw 153 comments and lots more likes.
I want that.
But I’ll never get it. Partly because I’ve deleted all friends who I expected to make such an announcement (note to self, should have just come off Facebook!). Partly because I’m no longer sure motherhood is on the cards for me. But mainly because I still firmly believe that there might be people out there who are still suffering in silence & to whom I wouldn’t want to cause the pain that I regularly feel when I see these things.
Why is it always me that’s the loser?!
I think I deal with miscarriage far better than I deal with being pregnant.
Whilst I was devastated that this was happening again I’d been so concerned about the lack of symptoms that I was the most stressed I’d ever felt. Knowing that stress isn’t helpful to pregnancy only served to stress me out even further. I was a wreck. At least, when I saw the bleeding, I knew for sure.
Don’t get me wrong, I’m heartbroken. I have failed yet again to do the one thing I was biologically geared to do. In my eyes I’m defected, flawed, a pointless human being. (I don’t believe this about anyone else by the way. I am simply my own worst critic.) But I am now no longer worried about miscarrying. I can pee now without panicking before I wipe. I no longer press my boobs wishing they were sore. I’ve stopped worrying about night sweats. I no longer have to ram ground sesame seeds, maca powder and dulse down me every morning (because if I didn’t I’d miscarry of course!). For now I am relaxed.
I passed the pregnancy sac on Sunday morning – of course it would be on a weekend again so that it can’t be tested! This time I took it in anyway and the nurse said she’d try to persuade histology to test it for me. It’s ironic that they refused to test earlier specimens because I hadn’t miscarried often enough but now I have I still can’t get them tested because I don’t miscarry on the right day!
All of last week I had hounded my doctor’s very disinterested secretary with concerns that I was miscarrying. Today I rang again & she stopped me when I mentioned my name saying “I’ve already given him your messages”. “This is a new message” I said. “I’ve miscarried”. The secretary’s tone softened a few hundred notches as she apologised! I actually felt a bit righteous – as though I should have been taken more seriously.
So what do I do now? Take some annual leave. The Boy & I have found a wooden hut in the countryside which has chickens, an outdoor bath with bubbles and no Internet. That’ll do for starters. Next, I’d like to know what tests still need to be done. Should I be thinking more about natural killer cells? Auto-immune conditions? What about Prednisone for unexplained RPL? Should I take a break? Should I try straight away?
I saw a psychic last year and she told me that I’d have IVF. I didn’t want to believe her but she did say my brother would get married & he did randomly in Canada without telling anyone! I don’t think my consultant will rush to IVF on the basis of my psychic (lol) and I can’t see how IVF can help me anyway? I’m at a bit of a loss. I know that there are more things that I can try still. Two years, six pregnancies – relatively speaking it’s still early days. But equally I feel it’s important to start the process of accepting that this might not go my way. I’m not ready to admit defeat yet, but I need to protect myself by preparing for an alternative outcome.
Last week I took a pregnancy test on the day my period was due & two lines came up -a positive result. After my melodramatic response to my blood test results (thinking I was post-menopausal) I was relieved! I know that this result would be awesome for many of my fellow bloggers and it is, but getting pregnant isn’t really my problem. I seem to be able to do that pretty easily now. Staying pregnant is my particular issue. This will be my sixth pregnancy (or fourth according to the doctors who don’t count chemical pregnancies). And what’s to say this isn’t another chemical pregnancy?
As pleased as I am to be pregnant I can’t help but wait for it to fail. I don’t have the same symptoms I’ve had previously. That’s really worrying me right now because they’ve always been quite strong. My boobs are only slightly sore – I tell myself this is the progesterone pessaries balancing my hormones. I’m not really getting up to pee in the night – that’s always been one of my pregnancy symptoms – I’m trying to ignore this. The last couple of days I’ve had some cramping. The frustrating thing about this is that cramps can either be a good sign or a bad one. I’ve been banned from Google by just about everyone I know but I’ve already read enough to know that none of this is confirmation of anything. I’ve tried to relax this weekend and take in some comedy shows at a local festival & my husband and I dressed up in 40s gear & went to a swing festival yesterday. That’s Swing music – not a swingers festival! The comedy festival was so surreal. Some of my favourite comedians were walking around amongst me & Joe Public. I was super excited! We did try to talk to one comedienne but she literally turned her back to us mid-sentence. Awkward! But quite funny in itself too!
The weekend has been a great distraction for me but I still worried about standing for too long or dancing too much (in case I inadvertently unimplanted it – this is how I think!) and getting too cold (Eastern medicine is all about keeping the uterus warm) etc etc. I’m not even five weeks yet and I’m analysing every decision I make & every twinge I feel.
I keep reminding myself that this time I have Progesterone to build up the uterus lining, aspirin to prevent any clotting & IF I get to eight weeks I’ll have Heparin injections for auto-immune issues. So my chances are better. But my progesterone test was nomal, as were the blood-clotting & auto-immune tests so I’m finding it hard to feel confident as I feel like we haven’t really found the root cause yet. I would so love to be in ignorant bliss right now, just happily enjoying these early days.
In other news a very good friend of mine who also suffered from recurrent miscarriage has just had a healthy baby. Get this: her labour lasted 132 hours!! That doesn’t even include the day & a half of early contractions she’d been having. I didn’t know it could take that long! I don’t think I want to know the details but I’m super pleased for her. She’s been my voice of experience, my voice of reason & my symbol of hope.