Musings and Snoozes

Still alive….just!

Well there’s nothing like being sick as a dog to make you remember you should update your blog more often. 

I’m actually a little bit pissy. I spent such a beautiful weekend at such a beautiful wedding, one which I purposely took an entire week off work for to make sure that I looked after myself and didn’t make myself sick. And it all went well until Wednesday morning, when out of absolutely nowhere, my body decided to hate me and essentially turn itself inside out. I will spare you all the details (poor mama and husband witnessed it) but I don’t think I’ve actually been that ill in a very long time, if ever. Talking about it with husband last night and I realised just how little of Wednesday night I remember – turns out I was pretty out of it and only really remember coming round again in the shower. It’s been an unpleasant couple of days. 

I’m doing better now, just extremely tired and quite dizzy and wobbly. There’s very little I fancy eating yet, so I’m living on jelly and vimto lollies until my appetite comes back. On the plus side, I have high hopes for being a size 8 by Monday. Every cloud and all that…. 

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Breathe and Accept

I keep telling everyone that I probably can’t use jet lag as an excuse for being so exhausted now, since I arrived back nearly 5 whole days ago, but what I keep forgetting is just how much the Lupus etc plays a part. Just like having a simple cold, or doing one too many things at a weekend, the after effects can stay for several days after. 

So I confess, I’m shattered. And this isn’t a request for sympathy, more a reminder to myself that it’s normal for me to feel like this. It’s expected that an 18 hour journey, plus time difference thrown in too, will knock me for six a bit. Not to mention lugging two suitcases (*cough* shopaholic *cough*). Normal people get jet lag, so it’s no surprise that 5 days later, I’m not back at my best. 

Not that that helps when I have my final essay of the year to be writing, work to catch up on, friends to see, and a pooch to look after. Oh and a husband who probably deserves more than just the flailing and mumbling in his general direction that he’s been getting this week. But maybe it would help if I let go of the guilt that goes with feeling like this. That feeling of ‘I’ve just come back from an amazing holiday, I’m all refreshed and happy, but oh dear god why do I need to sleep so much?’ If I can really focus on allowing myself to accept that this is OK, then I can almost guarantee I’ll find the tiredness improves dramatically.

So baby steps. Allowing myself to feel is one. Accepting it’s ok is another. And the biggest step of all to me today – I parked in the disabled spaces at work this morning. I *never* do that. After all, my car is so recognisable that everyone knows it’s me who’s parked there, and while I’m happy to talk about my various illnesses, admitting to the word disability and everything that comes with it is extremely hard for me. But I needed it, and that one little thing made such a difference to getting through my day. 

So I’m OK. I’m happy. I’m still refreshed. I’m just really bloody tired with it. And I still don’t want to write my essay….! 

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The Girl with the Clockwork Heart

I am sat here, munching on pretzels and Nutella, admiring my tattoo, and generally just being happy in my own skin. It’s a good feeling. One I haven’t felt for a while. They say a change is as good as a rest and it’s true. I feel just like I did when I came over here last time – like I have a renewed sense of being, as if I’m made of clockwork and someone has wound me back up again to start afresh. I love it. 

So where to start with my travels. I spent the whole of last week in New York with Max, her son and his girlfriend, and I still love the place just as much as I always have. I got thinking about why, and I came to the slightly odd conclusion that New York is an Introvert’s paradise. Bear with me here. When I think about how I go about my day in New York (the non-touristy ones, the shopping, coffee and mooching type days), what I love is that I can keep myself to myself, I can sit in a coffee shop and read book for hours just like everyone else in there, but at the same time, I can make little connections with people. More so than in England I find, although I’m well aware that the accent in a foreign country helps, but somehow I just find it so much easier to make friends here, to talk to people, to find out little thing about their lives, insights into their stories. I love it. 

So my week in New York was followed by a complete contrast, staying with a friend in Massachusetts. It was exactly what I needed after the frenetic city. I have been thoroughly spoilt, thoroughly looked after, I have made new friends, caught up with old ones, and found a whole new part of the country to fall in love with. Not to mention gained yet another new piece of beautiful artwork on my leg, so just like last year, I have a memento of my travels and a reminder of this feeling. 

And I want to remember this feeling. I need to. It’s one of such utter contentment and comfort in my own skin that I have to remember how it feels and maybe, just maybe, take it home with me. 

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Being an ostrich only works for a while 

I confess, I’ve been hiding a little. Being an ostrich as one of my best friends would say. Sometimes it’s nice to stick your head in the sand and wait until it all goes away. Only it doesn’t, obviously (go away I mean). We actually have to do something to make it go away. I’m working on learning that one. But here I am, out the other side, having done the thing, and so I finally feel I can come back to writing. 

Which is ironic, since it was writing that led me to ostrich in the first place. More specifically essay writing and studying. 

I’m not big on regrets, so this is not one of them. But I do like to be a little Pollyanna about it and figure out what I’ve learned and what I’ll do differently in the future. Like for example, possibly not deciding that as the least disciplined person I know, signing up for a Masters while working full time (in what is currently 2 job roles, or at least one and half), while also trying to manage various chronic illnesses, is a good idea. It’s not. But, I can now tell you everything I know I don’t want out of learning, and a little bit of what I do want.

So firstly, whoever said “I like learning, but I don’t like studying” was so so right. I adore learning. I am always learning. I work in Learning & Development for goodness sake, but I do not like studying. Which I feel I should clarify a bit, as I’m not sure that anyone likes studying as such, but it’s not the effort of studying I’m against, it’s the way studying takes place I guess. Sixteen year old me famously moaned that I thoroughly enjoyed reading Lord of the Flies for English Lit. What I didn’t enjoy was analysing the 17 different meanings to be found in the first sentence of chapter 6. Which is not to say I didn’t learn a lot. I did. But studying and repeating it back parrot fashion was not my thing. Turns out it still isn’t.  

When I think about learning and how I learn, one thing stands out – I learn from people. Which is an awesome thing when you consider that both in my working environment and my personal life, I have so many opportunities to learn from some amazing people. So I would much rather be this way, but it’s less useful when you’re studying from a distance. As helpful and as lovely as my tutor is, I don’t know her, I don’t even really know her specialties and what her focus is, and coupled with the whole thing relying on my pro-activeness and self discipline, it makes it extremely hard. 

But not impossible. I feel I should add this. I’m an adaptable creature and I honestly believe that if I were as inspired as I’d hoped to be by the content of what I’m studying, I could make it work. But the two together? Well I think I may have to admit defeat, for now at least. I hadn’t realised just how much of my time has been spent either worrying about it or trying to pretend it didn’t exist, to the point that it’s coloured everything and I have to acknowledge I’m unhappy. 

And actually that’s ok – it’s a relief to have figured it out. From a practical view, providing I pass the year (which I am on track to do), I still get a qualification, and a 5 more years to decide if I want to pursue anything else with the OU. And who knows what can happen in 5 years! And from a personal point of view, I’m a little bit surer about what I want from life (as well as what I don’t want), where I want to be, and how I’m going to get there by making it work for me. 

Of course if I could also learn how not to ostrich, that’d be great, but I don’t think they offer a Masters in that. 

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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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“I’m fine” and what it really means

Everything is relative, right? We’re all different and we all have different ideals, limits, boundaries. My hair, for instance, is quite boring at the moment as far as I’m concerned, but to others it’s still quirky and I still get told I’m daring and/or brave about a hundred times a day. It’s all relative depending on your idea of “normal”. (As an FYI, my hair is blonde and red atm). 

And so that brings me to “I’m fine”. I’ve had several conversations over the last few days about what is normal for me compared to other people. Jon, for one, is a great example of the difference in what we’ll put up with – more than ten minutes to get to sleep and/or a bad night and he’s quite possibly the pissiest man alive. I, on the other hand, haven’t had a restful night’s sleep since the doctor gave me emergency Tamazapan a couple of years ago because I actually didn’t sleep for more than an hour a night for three months. I’m used to it now – I don’t like it, and I am so very envious of those of you who go to sleep and feel rested in the morning (don’t ever take that for granted people), but it’s normal for me now and therefore providing I have had some sleep, I’m fine. 

Today is definitely an “I’m fine” sort of day. Ok, my pain is a little higher than I’d like, my wrist keeps dislocating, and I’m sleepy, but that’s ok. It’s all just stuff that’s normal for me, I’m used to it, I can manage it quite easily by taking care of myself and listening to my body, and therefore I am actually fine. It’s not a cry for help or a “my life is so hard compared to yours”, it’s just – to use my most hated American phrase – it is what it is. 

So if I say I’m fine, know that I likely am, and that while I don’t require anything out of the ordinary, gentle hugs and pats on the head go a long way. Coffee is also gratefully received. Obviously. 


If I promise not to kill you, can I have a hug? 

So I’m pretty sure this is the worst case of PMT I’ve had for a long time. Possibly since I famously threw a steel boned corset at my poor mum in an angry rage. Or the time I cried because the freezer door wouldn’t shut properly. 

In the last 24 hours I have cried for no reason, I have gotten angry at the world, and I woke up with a horrific migraine. Pissy doesn’t even cover it. Between the physical pain of the migraine and the fact that I probably shouldn’t be around other humans right now, I decided to do us all a kindness and take the day off work. 

So I’ve slept. A lot. Until I woke up around 3pm in a slight panic that I had to make it to the hospital by 3.45. I made it, just and actually it went well – my consultant is pleased with me and doesn’t want to see me again for a year. 

So I have treated myself to some celebratory chicken nuggets (because obv), picked up my 300 prescriptions (including the pill, which I’m hoping will put a stop to all this PMT shit from next month), and also topped up the chocolate milk. Now I just need to try not to kill the world or burst into tears at any given moment, and I think we might be safe to go back to work in the morning.

All hugs and gentle pats on the head are gratefully received.  

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Sky high and sleepy

I am currently 37,000 feet in the air, on my way back from Sweden. I am absolutely shattered, I ache from head to toe, and I want nothing more than a scalding hot shower and to curl up in bed. Just another hour to go, a short taxi ride home, and then I’m done.

Despite the tiredness, it’s been a good couple of days. A nice mix of productive and fun – I’ve been away with one of my favourite colleagues who I always have a good natter and catch up with, and we got what we wanted from it, so I can at least go back to work on Monday with what I need. I got to catch up with some Swedish colleagues I rarely see as well, which is always a nice bonus. Oh and I’ve come back with the obligatory shit tonne of salted liquorice, so all is right with the world. 

I like the travel, I like getting out of the office and seeing people face to face, when normally we only ever talk via tcon. People underestimate what a difference it can make to actually get together for a day and share ideas. Even I have to confess to having a different view of a couple of people I normally only talk to by phone now. But it’s hard on me though, physically. Hanging around the airport, queuing to board the plane, carrying my laptop etc. I mostly make it work for me – I’m careful how much I bring, I made work give me a tiny, very lightweight laptop, I always leave plenty of time to be where I need – but somethings I just can’t control. Early starts, long meetings, late flights – they all add up by the end of the day, and by this point, I’m done for.

But I wouldn’t change it. The good outweighs the bad, and I’m mostly travelling with people who know about my lupus and all it’s quirks, so I don’t have to feel too pressured to put on a brave face. And I’m determined not to let it stop me doing everything I want, and I sure as hell won’t let it stop my career. All I ask is that there’s a bed and a hug at the end of it all. If I have that then I have enough to keep me kicking arse all over the world. 

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Last minute panic… Again! 

One day. One day I won’t leave everything to the last minute. It is 8pm, I have an application to submit, a passport to find, a suitcase to pack, and a meeting to prep for. What am I doing? I’m sat on the sofa watching Saturday’s episode of The Voice. 

I know I’m never going to change. I’ve been this way since I can remember – school, uni, work – and at nearly 30, I’m probably not going to magically become organised. But sometimes, just sometimes, I’d really like to be that girl that has everything under control, who knows where everything is, and who isn’t rushing round like a mad woman at the last minute. I’ve tried all sorts of things over the years – lists, plans, schedules, stern talking tos – but none of them quite seem to work. I don’t know whether it’s pure lack of willpower or if I’m genuinely hard wired to be like this. 

It does have it’s advantages though. I am pretty damn good under pressure, I can wing almost anything at the last minute, and for the most part “it’ll all be fine” has got me through every difficult situation I find myself in. And so that’s what I’ll focus on – one way or another I’ll be on that plane tomorrow, notes written, passport found, and application submitted. Probably. It’ll all be fine, right? 

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