Musings and Snoozes

Bright lights and city streets

on February 11, 2017

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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