28 May 2013

Lupus is a Douche

Tuesday 28 May 2013

Well hello, Its been a while! I've been a very busy lady and when I've not been busy I've been asleep. 

I started to feel a lot better on Friday after a week from hell. I woke up feeling a bit ropey but as the day went on I started feeling more human. We went to see my mum and dad for a bit and then we came home and had an early night. (Wow we know how to live) I'd been worrying all week about Saturday as I'd bought Sami tickets to see Muse at the Emirates Stadium and I didn't want to let him down. Luckily I was feeling good enough on Saturday and boy did we have a good time. Muse were incredible. We got really close and jumped around to every song. Sami was so cute, he got all excited to be on the Arsenal pitch. Randomly his cousin Tim, Josephine and Maddie were there too so it was nice to see them.  I paid for it the next day. And the next day. And today. Lupus is punishing me for having a good time.   I always feel like shite if I over-do it.  But sometimes it's worth it.
If you don't know any muse songs click the link below... one of my faves 

Muse - Madness 

Sami right on the middle of the pitch....

Cousin  Tim, Sami and my eyes...

I was naughty and smuggled in some Vodka in a suntan lotion bottle...shame the vodka tasted like suntan lotion and we couldn't drink it!

I woke up on Sunday and my first thought was, 'What the fuck happened to me?' I was aching from head to foot complete with stabbing pains and muscle spasms. I stayed in bed most of the day and then Sami and I went round to his mums for roast beef. Ela was looking after little Em-J so we got to see him too (Sami's nephew). I felt a bit bad because I just wasn't with it. The lupus brain fog has been really bad of late. I feel really hazy and like I can't think clearly. Its really weird and hard to explain to those who don't suffer from it but its very frustrating when you're mid-sentence and you can't find the word you're looking for. I also have this thing where I don't know what's real and what's not. Like, I'm not sure if something was a dream or real. I hate brain fog. 

Yesterday was nice, Sami and I went round to his Dad's for a bit of a family get together and we also met baby Eva. She's Sami's Dad's partner's (Christine) granddaughter. She's lovely. Only a month old. But again I wasn't really on the planet. I just sort of sat there spaced out. I was in a lot of pain yesterday, Sami even had to wash my hair for me but I didn't want to miss out on meeting the baby. We came home about 7.30pm and I got into bed, fully clothed and fell asleep within seconds. I was exhausted. Sami woke me up to take my contact lenses out and I got back into bed. I couldn't really sleep though as I was in so much pain. My whole body was hurting. When I did get to sleep, I woke up covered in sweat about 5 times so I've woken up today feeling completely exhausted. 

I've decided I might have to give in and get a walking stick, I think it would make my life easier on the bad days.  So I'm thinking I might get one like this....

I feel like lupus has got a lot worse for me recently. Not only have I been flaring for a long time but the pain seems a lot worse and instead of being a few body parts its alllll over. Literally from head to toe. Last week was my worst week ever and this week doesn't feel much better. I'm actually not sure what to do. I've even considered going to hospital as the morphine I was prescribed last week doesn't take the pain away. It took the edge off slightly but it just felt like I'd taken a paracetamol. So I don't know, I'm not sure what they can do at hospital but maybe they can give me something stronger. I'll see how I'm feeling later. 

I should be taking steroids but I've decided I'm not going to, they haven't had the desired effect of stopping this flare up and they've made my face all puffy and fat and double chinny. I've also gained 7lbs and I aint happy.  I feel like a beached whale. Some say they are satan's tic tacs.  I admit I am very into my appearance so for me to gain weight and acquire a fat steroid face is quite traumatic. I feel like I want to hide under the covers and not come out until the extra pounds have gone. Its making me really sad. Sometimes I don't mind and I think there are more important things to think about and other times I feel devastated and really shitty.  Unfortunately its the latter on this occasion.

I'm writing this in bed, I've had a bath and that helped a bit but I'm probably going to stay in bed all day today. I've got so much to do around the flat but I don't have the energy. This also makes me feel sad. Lupus really is a douche. 

Its raining heavily so I'm going to take some morphine, put come clean pj's on and listen to the rain. Hopefully I'll wake up later feeling a lot better (and a stone lighter) lols.

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