The Price To Pay To Be Normal For A Night…

Please excuse me from my recent absence in the world of blogging. For the past couple of weeks I’ve been battling my biggest Lupus flare to date and Jesus has knocked me for 6! I’ve been really really struggling to catch my breath.

Ever since I stuck two middle fingers up to Lupus and let my hair down at oldest friends engagement party, my body’s been irritatingly reminding that it’s Lupus infested and there are severe consequences for those who try to disobey their cruel ruler, by behaving as they once would, before the L word came into their lives.

So here it is, the price to pay for being normal for a night…

A few months ago I decided to see if the odds were in my favour, by putting booze and pills to the test at my first works do (sensible I know!) After excitedly explaining to everyone that despite my pill boxes clearly stating absolutely NO ALCOHOL I was feeling just fineeeeee on my fourth glass of Prosecco… in just a couple of hours I was paralytic and my Fiancé was called for a lift home at 8.30pm. I can’t remember the last time I had felt so bad from alcohol and it’s fair to say it almost put me off for life. Not quite, but almost…

Fast forward to 2 weeks ago when I was getting dolled up in my black bodycon to celebrate my friends engagement party, my misbehaving inner child said ‘look you’re 23 years old, if you can’t have a couple of glasses of wine and have a dance with your friends what can you do?!?’ That…is where it all went wrong.


I consumed half a bottle of Rose before we set off with our friends and I must have already been tipsy because I paid for a taxi for 3 of us whilst my Fiancé and our friend drove behind us sober with 3 spare seats!!! I felt like an idiot but I didn’t care because I felt good and I was ready to dance! After throwing some mad shapes, beautifully screaming little mix lyrics and shaking my hips to the macarana. We too18839081_10154381457416386_770649705988365159_nk a vote and decided to walk home instead of getting a taxi, which of course I said yes to because those two extra glasses of wine from the bar made me forget I even had a chronic illness! It felt so good just to behave like a normal girl in her 20s and to have a drunken laugh with my friends on the way home!

The following week I thought I had the flu. My body was in crippling pain and I’d never known chronic fatigue like it. I could feel myself falling asleep in my hand at work and trying to find the energy just to walk to the bus stop resulted in uncontrollably tears. I felt like I’d done 12 rounds with Mike Tyson and then been hit by a bus. Little did I know it was going to get a whole lot worse…

Lung inflammation is a problem I’ve been enduring with Lupus since day one but over the last 2 weeks, my lung inflammation level has been way off the scale! I’m talking about fluid filling my lungs when I breathe in, making me choke and when I lay down it feels like my lungs have completely collapsed. I just can’t seem to get any air in, making me feel extremely nauseous and light headed! Last Monday I couldn’t even walk a couple of steps or hold down a conversation, because I was just so breathless. By Tuesday I was having agonising rapid heart palpitations and it felt like my rib cage was crushing against my lungs (I was so sure they were going to burst!) By Wednesday my Lupus Consultant whacked my steroids up to my highest dose yet and booked me in for an emergency hospital appointment for this weekend. I’ve been told that I will need some lung functioning tests but whether they will happen this weekend who knows? It truly feels like I’m hanging on by a thread and right now I’m getting increasingly worried that thread is about to snap!!

It is extremely frustrating trying to slow down in a world that’s constantly speeding up!  Deep down I know that my body needs rest, but I have two jobs to manage and 7 hospital appointments to attend in the next two weeks (all for different problem areas of my body!!) I feel like I’m being dragged from pillar to post all over county and the unreliability of public transport just makes things sooooo much more stressful! I spent 4 hours in total on a bus yesterday, just getting to and from one appointment (no I’m not joking!!)

Right now I reallyyyyy need a TIMEOUT! But can I have one?!… No! Because the world keeps on turning. The world doesn’t stop for the chronically ill! Here’s to hoping that I don’t  shut down by the time I do my next blog! Anyone feel free to kidnap me and take me to sunny destination far far away… preferably with good hospital access!

Much love








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