Musings and Snoozes

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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Levelling Up

Well this has been one hell of a challenging week. Better than last week in that I’m slowly getting periods of feeling – not always good, admittedly, but *something* is most definitely more manageable than *nothing*. However last week I was able to hide away and deal with it, even if I was at work I could plug my headphones in and just focus on getting through. This week, in comparison, has been spent standing up in front of people and having to be functioning and coherent. I think for the most part I’ve managed to pass as a human being, but good god it’s been hard work.

Tomorrow is my next dosage change, and I’m hopeful it’ll be less drastic than the first one. My concern now is the withdrawal from the Duloxetine – now my feelings are coming back, I’m a little scared that the bad thoughts that come with withdrawal will surface, but acknowledging that is half the battle and I’m confident I can fight it, I’d just rather not have to fight in the first place.

But I’m still here, I’m still surviving each day and trying to congratulate myself on the positives, rather than mope on the negatives. I cannot put into words how incredible the amazing people in my life are being. It is not easy putting up with this, I am more than aware of that, yet they constantly check in on me and remind me I’m doing ok. And I believe them and that’s what’s keeping me going.

So tonight is self care night, before Mama’s exciting birthday celebrations tomorrow! New hair colour, bubble bath, chocolates, and my favourite music. No matter how hard this gets, I won’t lose the little things that brighten up my life ūüôā

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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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“I am because you were”¬†

I think it’s safe to say that on the surface at least, most of my tattoos are not deep and meaningful. Those who know me a bit better know that the placement of my wrist tattoo is significant, that the words on my arm are lyrics to my favourite song, and that everything else is a nod to my pagan beliefs, while being pretty in the process. But today, along with my amazing mum who got her very first tattoo for her 70th birthday, I also got my first tattoo with a real meaning.

“I am because you were”. A short and simple phrase which holds a lot of meaning, in particular to remember my Dad. I have toyed with the idea of getting something for Dad for a long time, but I didn’t want something overt, his name or his birthday for example, nor did I want to get something silly, like a snail (he was called Brian, therefore Brian the snail), so when I came across these words, they seemed perfect. Even more so in the last few weeks, as I’ve been talking to my therapist, telling them about myself, my life, and my parents. It makes me incredibly proud of who I am because of both my parents, and actually because of who I once was too. These words encompass all of that – I am because of my Dad, I am because of my Mum, and I am because of who I was and who I’ve grown to be.

And so this is for all of those things, for all of those people, but most significantly, for my lovely Dad, who (for better or worse!) played such a big part in making me who I am today. 

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Sometimes you just have to Eeyore 

I’m pretty down today. I realise I don’t often admit that. I write about the what’s and how’s and sometimes the why’s, but I rarely just say, I feel pretty sad.

Today hasn’t gone as planned. After almost a week of being pretty much bed/sofa ridden with a cold and cough, I finally started to feel a little better yesterday. My sinuses have eased so my face doesn’t feel like it’ll explode, I can breathe without choking everyone in a ten mile vicinity with olbas oil, and while I still sound like a croaky frog, the cough is tolerable. So I went to bed last night feeling pretty positive. 

7am this morning and I hadn’t slept a wink. Not because of pain, or being ill, or even anxiety. I just couldn’t get my head to shut up at all, and so by 2am I gave up and read a book until the early hours.

But that wasn’t the plan. It was a good book, but not the plan. The plan was to get up, go to Starbucks, get a few hours work done, and then come home and dial into my afternoon calls. Of course instead, my body decided that 7am was a fine time to fall asleep at last, and I’ve lost almost the entire day. I’ve done no work and missed my calls. And that makes me angry and frustrated, and more importantly a little sad. I know it’s just my sleep dep making it worse and still being ill, but it makes the “what’s the point?” thoughts creep in, closely followed by the guilt and worry that people will think I’m lazy or not good at my job.

It’ll pass, I know it will. And I’ll head to Starbucks in a bit and probably spend the early evening working from there with a coffee in hand, but I just thought it was worth writing about being sad for a change. I concentrate so hard on the physical, and even the anxiety, that sometimes I forget that this is a feeling too and if nothing else, it’s worth acknowledging. 

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The Anxiety Monster 

This afternoon is Session 1 with my new therapist. Husband jokes that I have so many doctors now that he needs a reminder list every now and again of what they all do. He’s got a point to be fair, it feels like that sometimes.

So this afternoon is Marie Claire (that’s her name, not the magazine, that confused Husband). She was recommended by my Psychiatrist, who in his own words, described her as perfect for me. I swear he had a glint in his eye when he said it, which both worries me and makes me hopeful at the same time. This afternoon will involve talking, not that the sessions with my psychiatrist didn’t, but he, by his own admission, is more about the drugs than the talking, and we’ve focused so much on baby plans that I haven’t had to delve too deeply into the realm of “so how does that make you feel?” yet. 

First battle though is leaving the house. As in physically putting my hand on the door handle, opening the door, and leaving. I’m working from home today, due to sniffles and snot and ickiness, that I don’t really want to share with the office, and that, for some reason, psychologically makes going out very hard. I have yet to figure out what is so hard about it, or why, when I happily leave the house for work every morning, should it become difficult now. Because it’s not the seeing Marie Claire that’s bothering me (nervous though I may be), nor is it the driving there (driving relaxes me). It’s cold outside, which obviously I don’t enjoy, but that doesn’t scare me. So it’s irrational for sure, but I’d like to know what exactly I’m being irrational about.

So that’s today’s first battle. Putting on my shoes and my coat, grabbing my bag, picking up my keys, and standing at the front door for a good ten minutes convincing myself to just leave (while the dog tries to decipher whether this means she’s coming or not. She’s not). On the plus side, it makes the thought of talking about my deep and innermost feelings seem a positive delight in comparison. There’s always a silver lining. 

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My New Year’s Resolution? To Be More Selfish¬†

Sometimes it takes a group of people, sometimes it’s family, sometimes it’s friends, sometimes it’s just one person, and sometimes it’s unexpected, but whatever it is, it can be enough to make you rethink the way you see things.

I spent a huge amount of last year feeling guilty. I hadn’t realised just how much until I started having to talk about it, and hearing, what I’m now beginning to see as rational and reasonable responses that a) it’s not really my fault, and b) why would I put so much time and energy into worrying about things and people who make me feel this way. But that alone is a hard thing to type. I want to make excuses, to say “oh yeh, but they don’t mean it”, and “it’s just one of those things, I can’t really change it”. But I have to fight that and I have to stop. I have never been more aware of how important it is to look after myself and to not only be kind to myself, but to actively stop hurting myself – to stop putting myself through it because I believe I haven’t tried enough, that I haven’t met other’s expectations, that somehow I’ve failed.

Because I haven’t failed. I get up every single morning feeling how most of you are probably feeling this morning after a good New Year’s Eve – tired, achey, nauseous, like you need a week’s worth of sleep to recover, that every single slightly too loud sound or too bright light physically hurts. That is my normality. That is my good day. When I don’t feel as though I’ve been struck down by full on flu, that is a good day. When I can sit in my car for half an hour and not get to my destination and feel like someone’s punched me in the back and the hips, and that really I need to close my eyes to recover, that is a good day. Sometimes I push through my bad days, sometimes because I need to, sometimes because I feel too damn guilty not to, and sometimes, at the worst of times, because someone says “come on, it can’t be that bad”.

But I’m done with that. So in all honesty, my New Year’s Resolution for 2018 is merely to be more selfish. Not to the detriment of others, obviously, but always to the benefit of my health, both physical and mental. So this is my New Year’s warning – I need this year for me, I need to get back to some sort of recovery, and most of all, I need the support of those around me to do it, to know that they’re on my side. I miss who I used to be, back before I was sick, but I’m excited about who I could be again. I won’t always be the same, I can’t be the same, so there’s is nothing to do but to accept that, to put the pieces back as best I can, and embrace whatever comes out the other side. And to those who are still there with me, know that you are worth the moon and the stars to me.  

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When you can’t ‘Just Keep Swimming’¬†


I admit it. I am thoroughly fed up. I spend so much time and effort keeping my head above water, but right now, I don’t have the energy to do it, so I’m just going to let the water take me for a while and have a moan.

It’s Christmas. For anyone who spends even five minutes with me in December, you will know that this is my absolute favourite time of year – the lights, the music, the presents. Sadly, it’s also stressful and busy and overwhelming at times too, and as a consequence, I’m sicker than I’ve been for a while. And I hate it. 

For the third night in a row, it’s 4am and I haven’t slept. I am so so tired, but my body just won’t cooperate. Tomorrow I will be exhausted and have to make choices between things like showering and packing for new years, getting dressed or making breakfast. If I don’t eat something, I can’t take my meds and then nausea will kick in, but the very effort of eating something will make me feel sick anyway. On the bright side, I bought anti-nausea lollipops from Not Another Bunch of Flowers, and they’re amazing, so providing my achey fingers will cooperate and unwrap one, at least they’ll help.

Most of all, I’m just angry that my body can do this, that it can take a perfectly lovely time of year and just break. I haven’t been able to see friends, to go on my planned trip to the zoo, or even do much more than get from bed to sofa most days, which in turn just feeds my guilt and anxiety. I can’t help but worry about being judged, despite knowing that anyone who is judging me doesn’t deserve to be in my life anyway, but the irrational anxiety takes over, and really, that’s not how I intended to spend my Christmas break. 

But it will end, it always does. If my body could just handily reset at the start of 2018, that would be great. This definitely isn’t how I want to be going into a new year, especially one that I’m excited and optimistic about. But I’m grateful, even in the midst of a flare and feeling down, I am incredibly grateful for how well loved and looked after I am – all the people who do so much to help me on a practical basis, who kept me stocked in blankets and fluffy socks and hot water bottles, and those who message me each day to check how I am. It means the world to me. This can be a very lonely, guilt-ridden illness at times, but every time I think I might sink, someone amazing comes and pulls me back out of the water, wraps me in a warm blanket and tells me it’ll all be ok, and I wouldn’t change that feeling for the world ‚̧ԳŹ

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A whole new meaning to “baby brain”

CourageIt’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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