Musings and Snoozes

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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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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I’m not doing life today. I’d love to, but I can’t

The last few days have been pretty hard. I don’t admit that easily, but I can’t deny that it’s been hard not to just want to curl up in a corner and cry. My body is horribly broken right now – my back is still playing up, my arms and legs ache, my head hasn’t stopped hurting since Thursday, my breathing is sketchy at times, my temperature goes from hypothermia to fires of hell every half and hour, and to top it all off, I’m getting a cold. That’s without taking into account the fatigue, the fuzziness, the anxiety, and the sensory overload which makes every bright light and every unexpected sound feel physically painful.

Listing them out makes me realise how hard it is to keep a track of my daily symptoms at the best of times, let alone to expect my nearest and dearest to begin to understand. So in one of my many “I can’t sleep” moments, I’ve decided I need to make more of an effort to monitor and track what’s going on with my body. I have a doctors appointment in a month and a hospital appointment in January. If I want to be able to tell them anything useful, something more than “yeh, it sucks, but I’m alright” then I have to really listen to what’s going on.

So this blog remains the same, I still plan to use it to ramble and rant and pick out tangled thoughts from my head, but it’ll also include an extra section at the bottom of each post, listing out the day’s symptoms. I hope it goes without saying that it’s not because I’m looking for sympathy, nor am I necessarily looking for advice, but I just need a place to recognise what’s normal, what’s new, what’s a pattern, and what absolutely needs bringing up with my medical specialists. And as an aside, if it helps those of you who spend time with me regularly to recognise what’s going on, then I hope that goes some way to explain my sometimes irrational behaviour or my need for space and quiet. And when I say “I’m fine”, you’ll know exactly what kind of fine I mean.

Today’s challenges: fatigue (after doing the smallest of things), back pain, shoulders aching, cold to sweating and back again, anxious, headache, face pain (sinuses I think), pain in my hands – hard to grip anything, breathlessness. 

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Pain has my body, but it doesn’t have my soul 

I don’t often do this, but I’m going to write about exactly how bad my body feels. I try to keep this blog pretty positive, and no doubt I can find some humour somewhere along the way this evening, but I haven’t felt this bad in a long time and I think sometimes therapeutically, it’s good to get it out. 

Firstly, I had approximately 3 hours sleep last night. I was tired, but not sleepy,  when I went to bed, and so consequently I lay awake for a long time. Jon was remarkably awake too for a while, so at least I had someone to talk to (other than the dog), but when my alarm went off at 6am, my mind raced through every possible way I could call in sick. I didn’t, if for no other reason than I was getting my much anticipated new laptop today and I wasn’t missing that. 

So I did survive the working day. I was my usual ten minutes late due to not being able to move too quick this morning, but spending five hours or so curled up in the warmth of the IT office meant I made it through in one piece. 

I have however spent most of the day feeling sick. The nausea is one of my most hated symptoms, if only because I know perfectly well that I won’t actually be sick, I’ll just feel sick.  And it’s horrible. It makes my head swim, and then I lose my balance and all sense of depth perception. The amount of times I nearly fell over today was borderline comical. And tomorrow I have to stand in front of a room and give training for 6 hours. God help the trainees…..! 

By the time I got home, I was fit for nothing, and that’s when the pain kicked in. My back, hips, arms, shoulders – they’re all so incredibly achey. Every now and again I get a stabbing pain in my neck or I forget momentarily and lean my elbows on my legs, causing a yelp and inevitable bruising by morning. 

More than anything, I just feel broken. Physically very broken. My head and my mood are actually remarkably good, and I’m grateful – contrary to this little ramble, I’m actually considerably better at dealing with the physical pain than the mental side of things. But walking at snails pace and having to grab hold of things to keep me upright is not a lot of fun either. 

So I’ve done the sensible thing and come to bed. It’s only half 9 and I have a million things I needed to do tonight, but I know it’s not worth it. I said I’d start looking after me, and so I am. Painkillers, pyjamas, and a heated blanket, and with any luck I’ll be at least semi functioning by morning. 

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