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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“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.