Musings and Snoozes

“Write what should not be forgotten”

My therapist asked me last week how I was feeling about my latest miscarriage. Well actually, what she was specifically asking was whether I was dealing with it or if I was feeling emotionally detached from it all. The fact that she was even asking the question at all tells you that it was the latter. Which isn’t to say I wasn’t upset – I was, I am – I’d howled at three in the morning, and gotten angry at the gods and the seeming injustice of it all. But they were fleeting moments, gone almost as quickly as they’d snuck up on me, leaving me as emotionally empty as the hole I felt physically. We talked about why this might be – was I protecting myself, was I in denial, had my emotions just shut down? But in the end I realised it was none of those things, it was simply because I hadn’t yet put pen to paper and written down the words. With everything swirling around in my head, not to mention the practical aspects of hospital appointments and what felt like a hundred blood tests every other day, I didn’t have any chance to stop, to reflect, and to make sense of anything. Once I started writing, I knew I could start recovering again. So here I am.

When I had my first miscarriage, I remember discovering the 1 in 4 statistic and finding some comfort in it. If 1 in 4 pregnancies ended in miscarriage then this was quite normal and likely nothing to worry about. I’d be lying if I said that now, after 4 pregnancies and 4 miscarriages, I was still quite as comforted. If anything I’m just incredibly frustrated. Upset and sad too of course, but honestly, more than anything I’m just so frustrated to repeatedly get to the same point each time, only for the same outcome to occur. This time round I was determined to just take each day as it came, to enjoy the feeling of knowing I was pregnant, and to stay hopeful. And I’m glad I did – I don’t want to spend every pregnancy being convinced it’ll all go wrong and being pessimistic. Cautious yes, and carefully hopeful, but not miserable. And actually this one was going fine for a bit – I had all the usual symptoms, and just like before, I knew I was pregnant well before I could take a pregnancy test – the nausea, the weariness, the sore boobs, and the odd copper taste in my mouth. But then came the moment I’d been dreading. What had started off as light spotting suddenly because much more and I knew almost instantly what had happened. I can’t describe exactly what the feeling is, it’s just an inevitability, a resignation of what’s to come. While there are a hundred different reasons for bleeding in early pregnancy, and I will always try my hardest to hope that it might be nothing to worry about, ultimately I know my body well enough to understand what’s happening. And just like before, I knew when there was no longer a hooman growing inside me.

But this time has been different in many ways. For one, it’s been 3 and a half weeks now and I’m still bleeding. I’m also still showing a positive on every test I take, despite having had an ultrasound to show that there is no pregnancy tissue left whatsoever. I’ve had scares of eptopic pregnancy and threats of a ruptured fallopian tube, but ultimately nothing that is showing up on any of my scans and therefore slightly baffling my doctors. But on the plus side, I’ve at least had the opportunity to have scans, I’ve been seen and so well looked after by the Early Pregnancy Unit, and my GP has been incredibly supportive. It’s opened up discussions that previously haven’t been had, and consequently I’ve been referred to a clinic specialising in recurrent miscarriage. I cannot explain what a relief this is! I’d previously been referred to the hospital’s Fertility Clinic, who were great in that they did a whole bunch of tests, and we ruled out anything terrible, but at the same time, being a fertility specialist, they don’t really have anywhere to go after the tests all come back normal. Their inevitable next step is IVF, but getting pregnant isn’t my problem, keeping hold of the little peanut is the issue! So while I’m not pinning all my hopes on finding a magical answer at the Recurrent Miscarriage Clinic, I am at least looking forward to hopefully having a specialist who doesn’t say things like “well at least you know you can get pregnant”, and expecting that to be reassuring.

At some point we will have to make the decision around how many times we continue to try, at what point it becomes too much for both my body and our emotions to cope with. This time round has by far been the worst physically – my body identifies the process as trauma, and so has triggered one of the worst Lupus flare ups I’ve had for a long time. I feel like I’ve slept almost constantly for the last three weeks, and only now am I beginning to wake up in the morning at a normal time and not in a whole world of pain. In a strange way I’m quietly grateful for it though – without the physical symptoms, I’d have probably gone straight back to work and ended up in a bit of a mess. Being forced to rest and made to take care of myself has been what my body and mind have both needed, and ultimately I’ll be better for it in the end.

Right now, all I can focus on is just getting to the end of this miscarriage and fully recovering from the Lupus flare. I’m trying not to let thoughts of further pregnancies and subsequent complications take over my mind, hard as that may be. I don’t have much control over what will happen, my body will ultimately do whatever it feels it needs to, but I can at least deal with the here and now. I can grieve for the loss of what could have been and what this peanut might have grown into, and I can do what my body needs me to do and get plenty of rest. Anything further than tomorrow doesn’t need thinking about right now – as Hagrid wisely said “What’s comin’ will come, an’ we’ll meet it when it does.

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Things my body is teaching me

I’m umming and ahhing about whether it’s too soon to write about this, but I think for my own sake, I should try. Plus I found the below comic and it couldn’t be more apt if it tried.

I found out I was pregnant last week, but I’ve since miscarried. Again. All of the same things I wrote in my last post apply – I haven’t lost a baby, it was just a bunch of cells, it was very early on, and thank god it wasn’t 3 or 4 months down the line etc, but the difference this time round is I knew I was pregnant before it happened. I can’t even begin to explain what a difference that makes – even though it was just a few days, for those few days I knew I had something growing inside me, and the inevitable thoughts towards the next 9 months filled my mind. And then it’s gone. Friday I was hopeful. Saturday I was unsure. Sunday I knew.

I’m doing ok. Physically, I’m almost through it, emotionally, I’ve a little way to go. I’m trying hard to focus on the positives and remind myself that this is so early on in the grand scheme of trying for children. I’m trying to let myself feel it though too. I know if I don’t, I’ll bottle it up and it’ll come out at such an inappropriate moment otherwise, and so I’m doing my best to remember that it’s ok to be upset, to be sad, to cry over what could have been. I keep seeing the quote from The Velveteen Rabbit – “Once you become real, you can’t become unreal again” and that’s exactly it, just the knowing is what’s making it harder this time – once I’d felt pregnant, I couldn’t unfeel it.

But that is also giving me a bit of a kick up the backside, and making sure I try and learn something in the process. I’ve been making a semi conscious effort to address diet and exercise recently, but with house moving and holiday (and not having a fridge or freezer in the new house), shockingly it’s not gone all that well! But for those few days that I was growing a hooman, all I wanted to do was look after myself, and I can’t lose that feeling. I know my weight puts me at risk of miscarriage (although I’m pretty sure not enough for two in a row), but given that I have enough health issues that are out of my control, the very least I can do is do something about the ones I can control. And god knows, if there was ever an incentive to do it, this is it.

So that’s where I am at the moment. I can’t say it’s an ideal place to be, and I’m pretty sure I can expect to burst into tears at least once a day for the next week or so, but I could not have more amazing people around me and checking in on me, so I have no doubt I, will get through this one way or another 🙂

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Remember the Reason You’re Doing This

Well Project Baby (as it seems to have been named) has been quite the up and down over the last few weeks, so much so that writing has gone to the bottom of the list!

When I decided to start including Project Baby in my blog (as opposed to keeping it between close family and friends), I did it because I wanted to put in writing everything that it entailed – that it wasn’t just going to be a case of “ok, I want a baby now” (even if that’s how it seemed to poor Husband when I sprung it on him) and as if by magic, baby occurs. I knew from the start it was going to be complicated by my autoimmune problems, my fibromyalgia, my medication, my anxiety, and my depression. Plus all the other bits and pieces that crop up along any “normal” person’s journey too. So I have a lot to catch up on and process from the last few weeks. I’m pleased to say the general trend is still positive, I’m still going in the right direction, and all the weird and wonderful ups and downs are still very much worth it. So here’s where we are.

Medication

This was going so well and then we hit a road block. A few weeks ago I had the worst period of depression I’ve had for a while (probably since I was in my early 20s, if not before) and it was quite the shock to the system. With having been on Duloxetine for the past 6 years, it made me realise how well it had been working at keeping the depression at bay, and so it was a bit of a wake up call to remember what a depressive episode feels like. On the plus side, with the help of people around me and as much as I hate to admit it, a huge help from the “how does that make you feel?” therapist, I got through it and got back to a level playing field after a couple of weeks. As a consequence, I agreed with the nice, pragmatic, drugs therapist, that increasing my dosage of Imipranine would be best. We’re still in baby safe range, and there was little point me fighting each day, when it could be eased by upping the dosage. So that’s what we did.

At the same time as all this, I’ve been having real problems with managing my body temperature. I’ve always been bad at this, from the rashes I used to get as a teenager when I got too cold, to passing out by the swimming pool when I was 16, to getting it confirmed that it was a common part of having an autoimmune illness a couple of years ago. More recently I’ve been overheating very suddenly, going dizzy, and sometimes fainting. Which is less fun. Having seen my GP about this and having had an ECG, it’s been confirmed that my heart rate is running too high, which is contributing to increasing my temperature and passing out, and that it’s a likely side effect of the Imipramine. So guess what? We can’t increase the dosage after all, and I’ve had to go back down to the previous dosage. It’s incredibly hard not to feel like 2 steps forward and 3 steps back, but I’m doing okay for now on the lower dosage, even if some days feel a bit like wading through treacle. I’m back to see the nice Psychiatrist later this week, so we’ll see where we go from here.

Anxiety

My anxiety has been relatively quiet, which has been a pleasant relief. With the Imipramine, my head actually shuts up at night and so I’m sleeping amazingly. The downside of course is that I’d like to continue sleeping at 7/8/9/10am in the morning, but hey, I’ll take what I can get. I’m now finding that the anxiety is attackng for short, sudden, brief spells instead, and is more irrational than ever. This last week’s cause for sudden attacks has been animals dying. Not even my own animal, just animals in general. I see a bird, a cat, a dog, and immediately think about what if someone hurt them and they were suffering and they couldn’t tell anyone and……..and then I have to physically tell myself to shut up. Which is fine when I’m on my own, less so when there are other people around and I need to shout “pack it in!” to myself. None of this was helped by Bella being sick in the middle of all this, though suffice to say she is not dying, and has instead decided after 4 days of being on hunger strike, that actually she’s quite hungry and will get over it now. Anyway, I’m doing ok, with the help of Diazepam for when it all gets too much (and the promise to my Psychiatrist that I won’t go selling them on the street for copious amounts of money).

Moving House

For anyone who’s spent even 5 minutes with me recently, you will know that I am thoroughly sick of packing, of boxes, of trips to the tip, of living in chaos. But, we are so nearly there! We start moving on Friday evening and oh good lord, it can’t come soon enough. Except it can, because obviously there is still a hell of a lot to pack, throw away, sort etc in the current house, which is exactly why I’m sitting here in Starbucks, writing a mammoth blog post. Obviously. But I am incredibly excited – to be moving back to a small village, to a cottage, to having a flat garden, not to mention the village itself being flat – I cannot wait! Almost everything important is in walking distance from the house, including the park, the pub(s), the doctors surgery, AND the COFFEE AND BOOKSHOP!!!! Seriously, it’s like this place was made for me. Anyway, 6 more days of packing, throwing, sorting, followed by 3-4 days of moving, followed by weeks of unpacking, scowling, chaos, and remembering all the people we need to notify that we’ve moved, and it’ll all be done!

And so to Baby

Don’t get too excited, there is no baby yet. But there almost was, which I am taking to be the most positive news so far. On Tuesday morning, while sat in Starbucks (obviously) I started bleeding. I assumed it was my period, albeit a week early, but by the following day I realised this probably wasn’t just a normal period. After 20 years, you learn what your period should and shouldn’t look like each month, and this was nothing like I was used to – the cramps, the pain in my back, the sheer amount and colour of the blood (I make no apologies for TMI here, either read or don’t!) – I’m the kind of girl who has almighty PMS (just ask my poor Mum about the steel boned corset incident), but apart from the first day, I actually don’t notice too much when my period is here, so to have to go to the bathroom every hour to check I hadn’t bled all over my clothes was definitely not normal. Anyway, bottom line is, it wasn’t normal and I’ve had a very early miscarriage.

Miscarriage is a very emotive word. I’ve learned that with the few people I’ve told over the last couple of days. And quite honestly, I feel a bit guilty about even using the word, even though medically it’s accurate. So first off, let me say, I’m fine. I feel icky, I physically feel a bit like someone has kicked me in the stomach, but emotionally, I’m ok. Everyone is different, so I absolutely won’t take away from anyone else’s reactions to this happening to them, but for me this is purely a biological thing. When people hear miscarriage, they think of losing a baby. That’s not what this is for me – I didn’t even know I was pregnant, there was no emotional attachment to my broken egg that didn’t work right and so had to come out, and so while of course it’s not a pleasant experience, it is just “one of those things”. And actually I don’t say that lightly – I have been shocked to find just how normal this is, and how many women don’t even realise it’s happened to them. For me it was a relatively easy spot, but for someone who is used to really heavy and cramp-ridden periods, I doubt you’d necessarily notice it was happening. And what’s more, statistically it has absoltely zero bearing on getting pregnant in the future – you are no more prone to miscarriage than anyone else if this happens, it is purely an egg that didn’t quite do what it was supposed to do, and that’s that. So I am absoluely taking the positive in that. More importantly for me, this is a massive sign that at least my body can produce an egg and that theoretically I *can* get pregnant. Up until now I haven’t known how my body works or even if it works, so I am calling this progress.

So there we go, that’s pretty much where we’re at now. It’s been quite the disruptive rollercoaster of a time the last few weeks or so, but I haven’t once questioned or regretted what I’m doing, and that to me was the point of writing all this. I want to know when it all becomes too much, when I’m putting myself at too much risk doing this, and when I have to make the decision to try other options. If I don’t take time to reflect then I will carry on regardless, so it feels good to check in and to know that, despite all the chaos described above, we’re still on the right track, still heading in the right direction, and still getting one step closer to Project Baby.

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The Nazis Had Pancakes (and other such tales of drug induced sleep)

Day four of the new dosage and the “meh” has hit. At least I knew to expect it this time round, and I have the bonus of knowing that it should start to ease in a week or so. It does feel a bit like a step backwards, but I survived the first change, so I can survive this one too.

There are some positives to be had though. For a start, I’m writing even more than usual because it helps me stay connected to things, and stops me from just withdrawing into my own head and staring blankly into space. So my colourful handwritten journal that I have is looking particularly full and bright at the moment. Secondly, and more amusingly, my already strange and wonderful dreams have reached new levels of bizarre. The other night I dreamt that I’d been captured by Nazis during, what I think was supposed to be, the second world war. But it wasn’t as terrifying and doom and gloom as it could be, because fear not, the Nazis had pancakes, so that was ok. Honestly, I don’t know what that says about my headspace right now, but I’ll be sure to share with the psychiatrist!

So I’m taking the creative wins where I can. There are short stories a-plenty to be taken from my dreams alone at the moment (although maybe not the Nazi one), and trying to keep track of my moods and mind keeps me in coloured pens and paper diaries. And the anxiety is still at bay, mostly because of the not feeling anything at all, but still, I suppose it’s a break from the noise in my head, albeit not a particularly welcome one.

My strategy so far has been to take things pretty much day by day – hour by hour sometimes – because honestly, the thought of making plans is quite terrifying. I couldn’t tell you why, it’s certainly not because of the suicidal thoughts that I feared might come up because of the duloxetine, there’s just something that makes my chest tighten and makes me want to run away at the thought of making plans. But interestingly today, I’ve realised that medium term plans are ok. Long term plans aren’t tangible enough and so while they don’t scare me, they’re nothing to hang on to either, and the short term plans, as I say, are too much for my head to contend with at the moment, but medium term seems to work.

So with that in mind, I’m finally thinking about finding somewhere new to live (with husband I should add, that sounded a bit like I was leaving him behind!) and also booking the holiday we’ve been talking about for months and doing nothing about. Having those to cling onto, to know they’re not too far away, yet far enough that I should be back on an even keel by then, is really helping.

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It’s the noise that makes me human

So, things aren’t good. Well actually things aren’t anything, certainly not feelings wise. The numbness is pretty overwhelming and I’m having to fight hard to stay afloat.

I saw my psychologist this evening. For the first time I didn’t want to go, because I knew she wouldn’t have a magic answer for me. We know the drugs are making me like this, we know the drugs are necessary – what else is there to say?

Well, a lot actually. She can’t magically fix it, of course, but she can put into perspective quite how big a thing this is that I’m dealing with, and therefore that it’s ok not to be ok. She told me that normally when they switch patients drugs as drastically as this, they bring them in as inpatients to monitor and support them, so the fact that I’m doing this in the real world, so to speak, and still getting up in the morning and going to work is actually pretty amazing. I need to remember that. She suggested I take a few days out to look after myself, that there’s only so far I can push through, so I need to figure out what I can do. I have of course picked the worst possible timing for this, given that I have to physically be in the office most days for the next couple of weeks, but I will figure out how to work around that and make sure that my health comes first.

When I first started seeing my various doctors and therapists, I told them I just wanted the noise and the chatter in my head to stop. I just needed the anxiety to shut up and let me get on with life. Of course now it’s well and truly shut up and I want nothing more than to have that chatter back. Not all of it, but just something, anything, instead of this nothingness. So that’s the long term goal we’ve set – to find that balance between chatter and nothing. It will be a pretty long path to get there I think, with drug changes to consider and work with or around, but it’s nice to have a goal. And if there’s one thing this is teaching me, it’s that we all need a certain amount of chatter and focused anxiety to function, because the alternative is quite frankly, pretty depressing.

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She’s strong but she’s exhausted

I promised myself I’d blog and keep track of the new and scary meds, but I didn’t realise how exhausted I’d be. So I don’t promise this will be the most coherent post, but I’ll try.

I’m on day three now, and I’d hoped that the effects might take a little longer to materialise – y’know, maybe a few days grace or something. But no, yesterday they hit and they hit hard. I am physically exhausted and mentally meh, and the two together are really hard to fight. But I am fighting it, with the help of some really awesome people. It would be easy to just hide away, and if I’m honest that’s all I want to do – it’s less tiring that way, but there are too many important people around to do that, including myself. And that helps massively, because it reminds me that this is temporary, all feelings, or lack thereof, are temporary and it’ll get easier once the meds have all settled down. It’s just the next couple of months I have to get through first.

But I’m a fighter, everyone tells me that and I think I believe them, so day three, things are tricksy, things will likely get tricksier, but I got this, and so long as I remember why I’m doing this, I know it’ll be alright in the end.

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A whole new meaning to “baby brain”

Courage

It’s taken me a while to reach the point where I can talk about this and try and organise my thoughts enough to get everything down on metaphorical paper. All of this has been swimming around for the last few weeks, but I think I’m about there to be able to make sense of it all now.

For the last year or so I’ve been thinking about children. Having them I mean. We’d pretty much decided that we wouldn’t have any, that it would be too much for my already slightly broken body to deal with, that the risks were too many, and that mentally I wasn’t prepared to go through it. But the body is a funny thing, it doesn’t listen to rationale, and I’m a firm believer that my ovaries have a mind of their own. And so tentatively, my friends and families’ reminders that I wouldn’t be alone, and that I have an incredible support network (both medically and family wise) started to seep in, until one weekend in Newcastle, ten minutes before we were due to go out, I decided to spring on poor unsuspecting husband that I wanted children. Well done there Lizard. Suffice to say, we didn’t exactly have much of a chance to talk about it, so he tried not to look too scared, while I reassured him I didn’t mean that very minute.

Fast forward several weeks and my head is swimming with decisions and information and studies and research and fear and excitement.

One huge plus point to come out of my anxiety and depression is that I’m seeing a Psychiatrist. After 15 years of essentially dealing with this by myself, I am finally getting some help. And what’s even better is because my Psychiatrist manages my medication, he is in the best possible place to help me work out the what to do regarding my current medications and future options regarding pregnancy. Because it turns out it’s hella complicated. Mostly because I’m on a very weird combination of drugs for the fibromyalgia and autoimmune, some of which, Duloxetine in particular, hasn’t had a lot of research done on it in terms of effects on pregnancy. Which makes it a very scary thing. I’ve had my GP, my Rheumatologist and my Psychiatrist all contacting various health authorities etc to get as much information as possible, and what it essentially boils down to is “we’re not sure”.

Now at this point the obvious answer is to come off said medication and switch to something different. But that’s not so simple either. The withdrawal from Duloxetine is incredibly horrible. I know this both from the look my Dr gave me when we talked about it, and from the times I’ve forgotten to pick up my prescription or, for example, the time I went to the US for a week and forgot to take my meds with me (well done again there Lizard). What’s worse is that there is no finite time for how long withdrawal will last. My Dr’s words were “in some people it’s a couple of weeks, others it’s months, and others……well sometimes it never goes away”. Yay. To give you an idea, just some of the things it causes are intense pins and needles in my lower arms and legs, which in turn causes a kind of strange weakness that makes me fall over and drop things, dizziness, nausea, paranoia, depression, self harm tendencies, and suicidal thoughts. The majority of which I am or have been prone to at the best of times, without this!

So here I am, essentially faced with the choice of stay on the medication and hope that the risks to the baby are indeed unfounded and minimal, or come off the medication and be such a miserable, broken, semi-suicidal delight that the chances of being in any kind of state to make a baby is slim to none! What a prospect eh?

However, awful as it sounds, there is hope. I have never had as much medical support as I do now (thanks Private Health Insurance), and together we are determined to make this work. Plenty of people with my condition, or indeed any condition that Duloxetine treats, have gone on to have a healthy and happy family so this is possible. It’s going to take some careful experimenting with dosages and drugs, there are undoubtedly going to be some scary moments when the experimenting isn’t working, and I am going to have to really learn to look after myself and be completely honest about how I’m feeling – no more, “yeh, I’m fine”. But despite all of this, I am incredibly excited. I never thought I’d reach this point and to have such a purpose at the end of it all is the scariest and most exciting motivation in the world.

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