Musings and Snoozes

Somewhere between stubborn and organised

There’s a lot to be said for being surrounded by people who, even if they can’t know how you feel, do what they can to empathise and learn how to help. I’m incredibly lucky to have several people who I know I can go to when one or other of my illnesses gets bad, and honestly when one of them says “I was looking up X on the internet…..” my heart melts a little.

I’ve been so overwhelmed by my up and down mental health over the last few months that my physical health has taken a bit of a backseat. Which is not a complaint – being depressed *and* in the middle of a Flare is not something I relish – but it means that when one of my other illnesses does start to play up, I find I’ve almost forgotten how to deal with it. The pain and fatigue are there every day, so it’s not like it ever truly goes away, but it has been pretty manageable for the last few months, so much so that when my body started really letting me know how it felt this last week or so, it came as a bit of a shock. Getting out of bed this morning, my back, shoulders, and hips just refused to work properly – this hasn’t happened for a while, and I can safely say I haven’t missed it! With some gentle stretching and a handful of pain meds it eased up enough to be only mildly inconvenient and I could get on with my day.

I’m pretty sure I can avoid a full on Flare if I’m careful. And I need to be careful – I’ve got a four day work trip starting on Monday, so any kind of flare up can absolutely do one. So I’m in battery saver mode now. Just like when your phone turns off all the non-essential functions and conserves what little energy is left, this is exactly what I’m doing. Admittedly one of my non-negotiable, critical tasks today was to head to Dominique Ansel to get Cronuts, BUT, that’s all I went for – instead of spending the day in London like I’d originally planned, I came back as soon as I’d had some proper food for lunch and had my Cronuts safely in my hands. I also have an entire bag of goodies for a perfectly pampered evening – beautiful smelling bath bubbles, three different hair dyes (because decision making is not my strong point), a face mask, and clean pyjamas. Bliss.

Tomorrow I need to pack and locate my passport (it’s around somewhere……), ready to leave for Budapest on Monday evening. Travelling is always incredibly tiring, and travelling for work even more so, so I’ve done everything I can to make it as easy as possible. I don’t want to have to wait around for my bags, so I’m only taking hand luggage. This is fine, but when I have to remember to take out my laptop and my millions of clear plastic bottles of make up and shampoo at Security (as well as taking off my boots and jacket of course), I always end up trying to gather everything up at the other end, and awkwardly holding at least five different things, half of which are too heavy, and before I’ve even got on the plane, I’m feeling it. I am determined to be super organised this time and make it easier on myself – I’ve made sure I have everything I need today, as opposed to at 7pm tomorrow when all the shops are shut and I’ve run out of time. I want to be able to sleep well tomorrow night, not lie awake thinking about all the things that I should have done and what I’m going to do about the things I haven’t. I want to wake up on Monday morning, grab my already packed bags, head to the office and calmly get my taxi to the airport. An alien prospect to me – I am the least organised, most anxious person 99% of the time – but just this one time, it would be nice to feel smugly in control. I’ll be sure to report back how it goes……!

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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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I don’t know what grey is, I never did

So I should probably check back in here with an update. I’m now fully off the Duloxetine and fully on the Imipramine. It’s quite the headfuck if I’m honest, but I’m neither suicidal nor shaking like a leaf 24/7, both of which I had been expecting, so I’ll take that as a win for now.

What I am however, is hot and cold. Literally and figuratively. I am almost sick or blacking out at least once a day from not being able to control my body temperature, and I go from in love with the world and all its crazy beauty, to deep despair and sadness in the space of a moment. Don’t get me wrong, I will take this any day over the blank nothingness I had before, but christ it’s tiring.

The next step now is to figure out how much is drug induced and which bits the Duloxetine has been fixing that the Imipramine now isn’t. Ups and downs, highs and lows, and generally being a walking contradiction is nothing new to me, and as mum as I have said before, is definitely something we can blame Dad for! It’s uncomfortable though – sessions with my psychologist are going well, but by well I mean she’s making me talk about things I don’t want to talk about. Right at the beginning, she described my mind as being like the Princess and the Pea. There’s one rational, fixable issue there – the pea – but it’s been buried so far under the irrational, that it’s all spiralled a bit out of control. To get the pea we have to slowly peel away all those other layers, but I don’t like it!

So right now we’re at the first few layers, and quite frankly I’m good to stay there for a bit. It’s progress enough while I get used to all the chemical changes going on in my head. All I have to hope in the meantime is that my sad, mopey days can be got through, and that my crazy highs don’t involve believing I can fly or impulsively spending all the money I possess on buying a goat farm or some such. Because obviously a goat farm is always an option. Watch this space….

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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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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 🙂

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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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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 ❤️

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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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Sniffle sniffle cough splutter 

You’d think that for someone who is ill literally every single day, I’d be better at dealing with having a cold. But no, I have spent the day feeling quite sorry for myself at times, and wishing I could stop coughing myself into a headache. 

But to avoid a full on mope, which ultimately makes me feel worse, I have taken little steps to brighten up my day. So here’s my list of how to survive being extra sick on top of normal chronic sick:

  1. Have a bath. Fill it with lovely smelling bubbles and enjoy the heat working its way into your aching muscles.
  2. Read a good book. This one depends on how much concentration I can manage – fatigue is bad enough at the best of times, but worse when extra sick – so a book with short sections or chapters is good. 
  3. Sleep under your favourite blanket. It helps relax and sends you to sleep quicker. 
  4. Have a good cry. This might sound counterproductive, but it’s good to get it all out when you’re feeling bad. Bottling up tears as well as snot never does anyone any good. 
  5. Make yourself pretty. Wallowing in your own filth is tempting, especially when fatigue is so high, but clean hair, eye liner, and proper clothes (or your best pyjamas) really helps. 
  6. Hug a pet. Whether they enjoy this or not. Suffice to say Bella doesn’t, but it’s the price she pays for being able to sleep on the bed all day with me. 
  7. Finally, have little things to look forward to. I know I’m going to be sick for a few days now, but if I think about it like that it gets me down. Instead I’ve put some dye in my hair tonight so I know I’ll wake up with new bright hair tomorrow, I’ve bought food and drink I know I’ll look forward to having in the morning, and I’ve finally brought the decorations down from upstairs so I know that the tree *will* be decorated eventually.

Of course copious amounts of chocolate also helps, but that one goes without saying, right?

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