Musings and Snoozes

For the love of all things pastry shaped

Well suffice to say, ow. All of the ow. I’ve had the hottest (some would say scalding) bath known to man, I’m in my pj’s, the heating is up so high that I think both Bella and Jon are panting, and I’m still in all kinds of pain.

BUT, I can cope with physical pain easier than the brain fog and the mental side of things, even more so when I know I’ve brought this on myself and that it’s worth every aching bone and dislocated joint. 

I don’t know what makes me happiest about going to Dominique Ansel – the beautiful cakes and pastries, the famous Cronut, the buzzing atmosphere, or just simply that it reminds me of so many happy memories in New York, first with Tess and then with Jon. Whatever it is, it makes me relax instantly and so I had a lovely chilled couple of hours there today. 

Of course, going the same weekend as having already been into London on the Friday was maybe not my brightest idea, and so consequently I have no one to blame but myself for the sheer amount I’ve put my body through. Now I just have to focus on getting myself to the point that I can physically get out of bed in the morning and go to work. At the moment I can’t move without some part of me seizing up or spasming, which does not bode well. 

And so I’m doing everything I can to help – I’m turning my phone off for the night,  stretching every single limb and muscle,  taking all of the medication, and hoping I have a peaceful night’s sleep, dreaming of all things Cronut shaped. 

Because sometimes, just sometimes, it’s worth the pain for something so good. 

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Bright lights and city streets

So this will either be an insightful blog post, or just inane, nonsensical ramblings, but we’ll risk it. 

Sometimes, when I’m doing well for a while, when I’ve had a couple of weeks being relatively pain free, sometimes I almost find myself thinking “well maybe the Lupus isn’t so bad, maybe I’m OK really”. Logically I know how Lupus works, and I certainly know the patterns and ebbs and flows in the symptoms, so I know it’s not that I’m cured or making a fuss over nothing, but the brain is a funny thing and I can’t help it. 

And then I feel like I do now and it all comes flooding back. 

Now I should point out that this pain is to an extent, self inflicted. But I haven’t run a marathon or climbed everest, I’ve just been into London for the evening with friends, so it’s a perfectly normal thing for a 20 something year old to do on a Friday night. Plus some of the night was spent sat in a pub, eating dinner, so it’s hardly been taxing, but it’s been enough. 

I don’t often write about my pain in the moment, it’s usual after a flare, or when dosed up and dulled down on painkillers, but I’m wide awake from the bright lights of the city and I’m too nauseous to take meds, so I thought I’d try and capture it. 

First and foremost,  my hips. They feel like someone or something is sitting on them. They’ve seized up completely and just feel….solid, like there’s no movement in them at all. It’s an odd pain, not shooting or even achey, just heavy. They hurt to touch, which is frustrating because they feel like they just need a good push to get them moving again. 

My legs are also incredibly painful. So much so that Jon just brushed my thigh slightly and I nearly screamed. They feel like a cross between having just done a really hard workout and having the flu. Instead they’ve done a bit of walking and standing. The ache is constant, with the occasional shooting pain which makes me twitch and consequently triggers more pain. I’m lying down but it doesn’t make much difference – the pain is already too far gone for anything to help. 

My knees and my ankles. My knee popped out of place on the last walk back to the train. Always unpleasant but easily fixed. It leaves it with a dull ache afterwards though, like my hips, that solid, heavy feeling. My ankles on the other hand are still in place (yay for working joints), but feel as though I’ve been walking round in six inch stilettos, not flat, comfy, walking boots. I find I have to keep moving them else they seize up, so I’m constantly twisting and turning them to relieve the pain. 

Lastly, my back and shoulders. I should know better than to carry a bag round London with me. I don’t carry a handbag at the best of times, so quite why I thought walking round with one tonight was a good idea, I don’t know. I ache so very much and can’t take even the lightest bit of pressure without yelping. Even the duvet is too much against my shoulders, which is frustrating because I’m freezing and want to cocoon myself. 

The temperature itself is an issue at the best of times, but having frozen in the snow one minute, and sweated to death on a rush hour tube the next, my muscles have contracted and relaxed so much that they can’t stop spasming even now. Tomorrow I will wake up stiff all over, and it will take me a long time before I’m able to face the pain enough to get out of bed. I can only hope that the nausea has died down enough to allow for painkillers, which can at least then kick in to allow me to move. 

But, painful, horrible, frustrating, and everything else thought it may be, it’s absolutely worth it to have had such a fun night. I won’t say I wouldn’t change it because clearly that’s a lie, I’d rather not be in pain, but I will not let it stop me doing things and living as normal a life as possible. And if nothing else, odd though it may be, sometimes the physical pain is a good reminder that it’s not all in my head and actually, after the last couple of mentally hard weeks, the physical pain is an almost welcome relief. 

So know that I don’t write this blog for sympathy or for any kind of woe is me reason. It just does me good to explain how my body physically feels at times like these, to both remind me that it’s real and to focus my mind. I might not feel better, but I do feel a slight relief, and really, that’s enough for now. 

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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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Her mind is like a hurricane 

So it’s 5am and I haven’t really slept. My head will just not shut up, no matter how hard I try. The dog kindly started crying at about 3.30, having clearly decided she must desperately pee that very second, and then to top it off, having merrily proclaimed yesterday that my tooth was fine, it’s now making me want to cut off the side of my face again. Apart from all that, I got this. 

So I can’t do a lot about the last two – I’ve finally warmed up with the help of a hot shower after standing in the freezing cold with the dog, and I’ve doused my tooth in so many forms of ibuprofen that I expect to be cured any moment now – but I can try and pick out the thoughts that are buzzing round my head. Annoyingly, they’re not even all bad thoughts. I’m not awake because I’m worrying about anything in particular, though of course once my mind wanders, I can always find something to worry about, but really it’s just too much going on.  

So let’s start with the best bit. I booked flights for my New York / Boston trip next year. I am beyond excited about this, not least because this trip will involve so many friends in both places. Plus of course, New York 🙂

In equally good, if not interestingly timed news, something I thought may never happen at work, may well indeed now actually happen. I can’t really say much more than that, and I don’t actually know all that much, but it’s an opportunity I wasn’t expecting! 

Studying also went remarkably well today. I’ve broken the back of what I needed to, and while I still have my assignment to write, I have all the ideas there on paper. Of course some of these ideas are still bouncing round my head now, and really, 5am is not the optimum time to be thinking about collaborative leadership models. 

And the rest? Well the rest is just a never ending list of things I need to do, things I want to do, conversations I want to have, conversations I don’t want to have. The list goes on. All with the delightful background of the dog having decided she’s awake and therefore it’s breakfast time, and a tooth that makes me want to consider the kindest way to be put down. Hard life doesn’t even begin to cover it, as pooch will of course tell you if you so much as ask. 

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I’m not one to exaggerate but….

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Never mind my autobiography, it’s been the story of my weekend. I had so many plans and they were all foiled by the fact that I could no longer stand up by lunchtime yesterday. Given that I’d only been up since 11ish, it didn’t bode well. Skip forward 4 hours and I find myself waking up slightly disorientated, having only gone for a quick lie down. Oops.

I know I have to accept that days like this happen, but it never gets any less frustrating. When the pain and fatigue hit at the same time it’s crippling – one or the other is tolerable, but together, nope, life has to stop. The saving grace was that I did feel *slightly* better when I woke up, or at least slightly more awake, if not in just as much pain. I did however manage to brave the supermarket with Jon – even I felt it was harsh to make him go by himself – and so I felt sufficiently smug when I came home to collapse on the sofa. I decided to watch the England game (something I don’t think I’ve done since Dad was around) and fully enjoyed shouting profanities at the TV while Jon was safely in the kitchen, making my dinner – I’m sure we got the gender roles mixed up somewhere along the way, but I’m forever grateful for it!

Today has been much better, although I didn’t make it to the gym as planned, which is kind of a shame given the sheer amount of food I’ve eaten today. Mum treated us to lunch and I was so excited by the amount of gluten free choice on the menu that I *had* to eat it all, obviously. Suffice to say there was a small food coma….

So here I am, back on the sofa, BUT I’ve redyed my hair (pinky/purple now), been out for lunch, done a small amount of laundry, and I’ll do some yoga before bed, which isn’t bad for someone who couldn’t stand up yesterday. I have to take these little victories where I can, so despite my frustrations, I’m proud of me today.

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The good, the bad, and the oops I did too much

So in all honesty, today has not been a good day. I am pretty much crippled with pain, meds aren’t even touching it, and consequently I’m pissy and miserable. BUT, I had such an amazing time yesterday that it was completely worth it – eight of us, four convertibles, Malvern Hills – absolute perfection.

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So instead of moping, it got me thinking about all the little moments that just make life good. So often it’s not the big things that make a difference, but all those everyday moments of bliss that keep us going. So here’s my list of life’s little pleasures:

*The feel of fresh bedsheets

*Closing my eyes under the shower and letting the water wash over me

*The first sip of hot coffee in a morning

*Being surrounded by friends that make me so at ease that I can’t help but smile just looking at them

*Fairy lights at dusk

*Driving my car with the music up, the roof down, and no clear destination

*My hair being stroked

*Fresh ink on my skin

*Sitting outside during a summer storm

*When someone tells me something made them think of me

*Listening to music through headphones and losing myself a little

*The smell of incense burning

*Watching the dog dream and let out a little bark in her sleep

*Falling in love with new people

If I can do or feel at least one of these every day then things are never as bad as they seem. So I’m off to burn some incense and put my headphones in. The pain, no matter how bad it is, will always come second to this list.

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My body is a charm bracelet, my tattoos are my charms

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I’ve written before about my love of getting tattooed, but yesterday I decided to write about it as it was happening – from killing time in the car beforehand (because for once in my life I was early), how it feels when I’m being inked, to the spike and crash afterwards. It’s an experience I love, and one which never ceases to amaze me because of just how good it makes me feel. So I’ve done a lot of writing over the last 24 hours and here is just an insight into how the tattoo process works for me.

Shockingly, I’m 20 minutes early. For a girl who’s likely to be late to her own funeral, this is nothing short of a miracle. Still, it’s a nice day so I’m sat in the car with the roof down, soaking up some much-needed Vitamin D. God I’ve missed sunshine, roll on Summer…! I’m so excited to finally be getting more of this design done. I knew when I got the initial flowers last year that I wanted to make this into a big piece, but I thought it would just stay as an idea that I’d never get round to going through with (story of my life). But no, here I am, about to go and see how much Emzie can get done in an hour. There will be significantly more swirls at the end of it, that’s for sure 🙂

Even now I find it hard to explain how good it feels when the needle is on my skin. It quite literally puts me in a trance-like state that relaxes me instantly. Everything else just fades away and I’m completely calm. For someone who is almost constantly in pain/anxious/tired to the point of exhaustion, I can’t tell you how amazing that feeling is. Meditation and mindfulness go so far, and there are other, not so safe, not so legal ways to feel this good, but to get something so beautiful as the art on my skin at the end of it as well makes it my favourite way to relax. 

Sat in Starbucks topping up my sugar levels now, like I ever need an excuse for coffee and cake, but shh. Jon’s coming to meet me in a bit, but I’ll take this chance to try and explain all the post-ink endorphin fueled adrenaline that’s running through me right now. Firstly, and most importantly, I’m not in any pain. Not just no tattoo pain, but no pain whatsoever. I forget how strange this feels and I honestly don’t think I can even begin to explain it to someone who spends the majority of their life pain free anyway, but for me, it’s pretty damn incredible. It doesn’t last, it’s usually about 2 or 3 hours tops, but I plan on enjoying every minute of it in the meantime. The temptation is to go and do all the things that pain stops me doing, but sadly the after effects are still the same and once this wears off, I’ll be back to where I was before, only worse off if I go and run a marathon or some such crazy. But I can enjoy just sitting here and feeling normal, walking up the stairs and not hurting when I get to the top, holding my coffee cup without my wrist complaining. They may be little things, but it’s the little things you miss when they’re taken away, trust me. Anyway, endorphins, happy face, I am enjoying this, regardless of the strange looks I might get for grinning into my coffee cup 🙂

Feelings and emotions aside, the tattoo itself looks fab. I am so very lucky to be able to go to Emzie and just say “hey, more swirls and some little flowers please” and for her to just know what I see in my mind.
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She’s even drawn a mini lotus flower which I wanted but actually forgot to mention, so by pure luck it’s perfect. In an hour we’ve done the whole top half of my arm – pretty damn impressive. So I’ve still got the bottom half to join it up completely with my forearm piece, and then we’ll go back and fill in some of the gaps round the back of my arm as well. I’ve kept the same colours as my shoulder pieces, and I’m glad – I was undecided about whether to just make the rest of it black and white, but actually the splashes of colour work really well.
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We got very excited about watercolour tattoos too, so they might be next on the list because the pink would look amazing. I’ll just add it to everything else I want done….

And so comes the crashing. So so tired that I can barely keep my eyes open. The plus side for me is that it’s actual sleepiness, rather than just pointless fatigue, meaning that sleep should be pretty easy tonight, which’ll make a nice change. My body sort of goes into shutdown at this point – everything slows down and I get drowsy, like taking too much Piraton as a kid! It’s a nice feeling, so long as I don’t actually want to get anything done of course, but then it’s Saturday night and nothing ever needs doing on a Saturday night. I’ve made myself a nice blanket nest on the sofa, we’re watching films that I don’t need to think about, and I can happily drift in and out of consciousness for a while, dreaming about my beautifully decorated skin. 

Which brings us back up to the now – Sunday afternoon – the pain of the tattoo itself is of course kicking in, but that’s ok, nothing that large amounts of cocoa butter won’t fix! And it’s not a patch on the pain felt after getting my shoulders and side done, thankfully! I joke with Emzie that I’m so calm when being tattooed now because nothing will ever feel as painful as my side did, but it’s probably true. Even I struggled to find my inner calm there! So I shall continue to spend the rest of the day looking at my arm and grinning, while planning the three hundred other tattoos I still want and wondering at which point I’m going to win the lottery and be able to get them all done!

But there we go, a little insight into why I love being tattooed so much. It’s not for everyone, and I don’t expect everybody to understand, but it’s a massively important part of my life and on the really hard, pain-filled days, it’s the little things like this that keep me going.

 

 

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A picture tells a thousand words

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I’ve been undecided for quite a while about posting this picture, but given the quite frankly shitty couple of days I’ve just had, it seems appropriate.

I’ve spent the last two days or so in bed, essentially comatose. Today I didn’t even know what day it was and so consequently missed my physio appointment completely. Oops. The pain yesterday meant I couldn’t stand up for more than about 10 minutes without being in agony, and today I’ve spent most of the time battling temperature issues, an ankle that won’t function properly and essentially back and neck pain that looks like the above picture.

But I look perfectly well. My back doesn’t look like that picture, you can’t see that my brain is having trouble processing what you’re saying, or that the lights and the noise around me are physically hurting. Tomorrow I will go back to work and look perfectly ok, and I will have no idea how to answer when people say “Oh what was wrong? Are you better now?” I’m not better, or rather I’m not recovered. Relatively speaking I’m better than yesterday, but I’m pretty sure that if anyone else felt like this, they wouldn’t be considering themselves “better”.

Don’t get me wrong, this is not a mope, I’m not even feeling particularly down, I’m just acutely aware that no matter how hard I try, no matter how I attempt to explain the pain, I will never quite manage to get across just quite what it feels like to look this healthy on the outside and be so ill on the inside.

So the picture may not be pleasant, it’s probably not for the squeamish, but it’s a pretty accurate representation of what my body feels like. Just because you can’t see something doesn’t mean it’s not there. And after all, they do say a picture tells a thousand words.

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