Keep Your Head High...

Thursday 25 April - 7am 

Feckety Feck feck! I've just woken up and Lupus has beaten me up in my sleep! I feel like shite! My eye is still gunky and manky and my body is saying, 'No, you're not getting up today'

I'm not sure who let the elephants out of the zoo to come and jump on me in the night....seriously that's how I feel.  Well maybe that is an exaggeration as I'd probably be dead if that was the case but y'know what I mean.

I'm supposed to start work at 8.30am but I just texted my boss to ask if I can come in at 9am instead as I just need to loosen up all these stiff joints before I can get up!  Gosh I'm like a 90 year old.  I woke up about 6 times to pee and about 7 times covered in sweat so on top of feeling beaten up I'm also exhausted.  My alarm went off and I woke up absolutely soaked in sweat and shivering.  Nice.  So to be frank I'm not feeling it today.

Thank feck it's my last week at work (well, full week as I'm going to do a couple of days here and there until the new person is settled in) so I just feel like I have to go in really.  I mean, its not so bad I can't move and I'm not crying with the pain but in an ideal world I'd be relaxing today. 

On the plus side I'm having my hi-lites done later so that will be nice...I mean no, I'm a natural blonde...

Can't believe I got to Thursday though. Its normally Tuesday I feel like this! So I did 3 whole days at work before lupus got me.  Woop woop 3 days! Yeah!

The BBQ didn't go ahead yesterday, the weather turned and it rained =0( my bestie just cooked indoors instead.  It was a lovely evening - nice and chilled and went home by 10.  I was in bed by 11.  Shame I didn't sleep much.

Weirdly I'm not in a bad mood.  I think I'm lucky in that sleep deprivation doesn't get to me too much.  Sami for example is a horrible mess if he doesn't sleep well,  he gets very moody and snappy and it's just awful (thankfully this doesn't happen often) but its the only time he's not nice.  Me on the other hand, I can't remember the last time I had a decent nights sleep - it just doesn't happen in between being in pain, having night sweats, peeing, not being able to get comfortable but somehow it doesn't bother me that much, don't get me wrong, I'm tired today but at least its tired in a 'normal' person way and not lupus fatigue. 

OMG those that follow this blog and those that suffer with Lupus will know what I'm talking about.  When lupus causes fatigue oh wow.  It's immense.  It's so bad that even blinking feels like an effort, even breathing. So when I'm just tired like a normal person I don't mind. 

I will say though, when people tell me they're tired it does annoy me.  I'm like, really? You're telling someone that doesn't sleep well (ever) and someone that has an illness that causes tiredness?   People need to know their audience.  I don't wanna hear you're tired, because quite frankly, I've been tired for years and you will go to sleep tonight and wake up refreshed tomorrow and I won't.  So go and tell someone that can give you sympathy cos that person aint me mate.

I love writing this blog so much, I can tell people exactly how I feel and I can get everything off my chest.  It's great, I feel so much better since I've been doing this.  It really is a form of therapy -  like a weight has been lifted and its also helped me to accept my illness....  So, Lupus, you have given me something to write about and you have given me a whole new perspective on life.  I appreciate so much more now.  I love my life and  everyone in it and strangely, I wouldn't change a thing.