28 Apr 2013

We're up all night to get lucky....

Sunday 28th April 2013

Well Hello! It's been a few days...Here's what I typed on Thursday evening but didn't post...

Thursday 25th April 

Well the Lupus fatigue has hit me (after 3 good days) feck me it's awful.  I've just been to the hairdressers to have some hi-lites and a trim and oh wow I could barely sit up in the chair.  Luckily my lovely hair dressers knows all about my illness so she just said,  'Don't worry just sleep if you want to'  I actually did! I literally couldn't keep my eyes open.  And I'm struggling now so I'm going to have to leave it there and go to bed.  I can't think.

So that was Thursday - I was alright most of the day (once I got over the initial feeling like absolute shit in the morning) and then BANG! The tiredness hit me like a piano falling from the sky.  So frustrating after a good few days.

Here's my new hair do...

I got a fringe to mix it up a little while I'm trying to grow it....I'm such a poser.  Oh well one day I'll be old, grey and saggy with a face like a sack of spanners so why not??

I woke up Friday and couldn't physically get out of bed.  I was mashed up.  My whole body hurt,  I couldn't straighten my fingers or put weight on my knees and I was so tired.  I was soooo tired I even considered wetting the bed because going to the toilet was just too much of an effort....I decided not to wet the bed as thats probably not a good idea plus I'd have to clean it all up etc and that seemed like much more of an effort!

I called in sick and went back to sleep til around 2pm, thankfully I woke up I feeling a lot better.  I just needed to rest I guess. It really does make me realise I'm doing the right thing by giving up work for a while.  On Wednesday I felt so good, I thought to myself, 'What am I doing? I don't need to give up work! I'm fine!'  Then I woke up Friday unable to move and I remembered why I made that decision.

I felt so down on Friday.  I was thinking to myself I really don't deserve this shite.  I'm kind to people, I always want to help others.  I've done my fair share of good deeds - helping old ladies over the road, I give money to charity every month, I used to volunteer at a reading group for adult learners... I'm a decent person.  I just couldn't help but think it's not fair for a nice person to be in this much pain all the time...I had a proper little wallow in my self pity. But hey, I think I'm entitled to and if I didn't that would make me some kind of robot.  I don't let myself do it too often but the occasional wallow is ok.

Sami went out on Friday so I had the flat to myself, I was naughty and ordered a pizza.   I just fancied a treat after feeling so ill and It was good.  I missed Sami though.  I'm so soppy like that, I genuinely miss him loads when he's not around.  He did say to me before he went out that he felt bad leaving me when I've been home alone all day and ill.  I told him not to be silly and to go and have a good time with the boys.  I'd never want my illness to ruin Sam's plans and to be fair he doesn't go out THAT much so I wanted him to go and have a good time.

It's one of my best friend's birthdays next week and she planned a night out on Saturday. I really thought I wouldn't  be able to go but I woke up Saturday feeling completely fine.  No pain, no tiredness or anything.  I felt amazing.  So luckily I was able to make it! Yeeeey.  I had THE BEST time.  We drank cocktails and danced for hours.  It was so nice to be able to.  I felt so free.  For one evening I forgot about Lupus. Even better I've woken up today with no hangover.  RESULT.  Well I was a bit iffy this morning but after some tea and toast I was fine.  Love nights like that.

Not the best pic of me but it's the only one we have...My phone was dead so I couldn't take any....Never mind.  

We danced to this song about 8 times...My booty got a proper work out for the first time in a very long time!!!

Lupus gave me a night off and boy did I enjoy every moment...


  1. am having such a bad flare up myself, its good to know am not alone, to hear someone going through what am going through, stay strong. and thank you for this!

  2. AH Gentle hugs to you Davrell - I hope you come out the other side soon. Thanks for your message and support. x Keep smiling x