If you don't like it, don't fucking read it.

Friday

I still can't get over the fact it's 2015 and it's nearly March.  How did that happen?  Anyway, just thought I'd do a little update for y'all.  I'm still confused by the fact people actually read this blog. I mean it's great that people do but I still find it weird that people are interested in my waffle.

Some arsehole complained to me after they read a few of my posts and said they didn't like my blog because I swear too much, my answer to that was quite simple 'Don't fucking read it then.'  No, I didn't actually say that, I just said, 'I appreciate your feedback but if you don't like it then don't read it.'

I do swear a lot but this is a blog about living with 3 chronic and painful illnesses so there are going to be times when I feel the need to swear and sometimes a good old expletive helps me to emphasise a point, especially a pain related one. Ah well, that woman can go back to reading Enid Blyton or whatever.

I've had quite an action packed couple of weeks, firstly I went to the dentist and had a filling. I was so brave, I only cried a tiny bit. I am so pathetic when it comes to the dentist, my sister in law came with me to make sure I didn't run away but I was good.  The dentist told me that as a result of Sjogrens syndrome and one of my medications I have gum disease and early signs of bone loss so that was nice.  I wasn't expecting that to be honest but I knew it would come at some point in my life.

Sjogrens is the other auto-immune disease I have which is when the immune system is a bit stupid and attacks the salivary glands and tear ducts which causes dry eyes and mouth. Other symptoms include joint pain, stiffness and swelling, muscle pain, fatigue and memory issues which Lupus can also cause so I have the double whammy.  I can't tell the difference in symptoms except when my eyes are super dry then I know it's sjogrens and not Lupus, sometimes both flare up the same time. Erm so yeah anyway as I was saying, when you have Sjogrens you are more susceptible to gum disease and tooth decay because your mouth is dry and doesn't get rid of bacteria as effectively.  I know someone else with sjogrens who doesn't have many of their own teeth left.  And the bone loss is due to steroid medication.  I've done a whole post on steroids and the awful side effects because there are so many - if you scroll down to the bottom of the blog you should see it - it's one of my most popular posts for some reason.

So after my gum disease/bone loss scare I decided I should probably have my eyes checked, partly due to having sjogrens but also because I have terrible, terrible eye sight (my prescription is +7) and I am on a drug called plaquinil which can damage the back of your eye so I should have them checked every 6 months or so. Plus I wear contacts most days and haven't had my eyes checked in over 5 years so yeah, it was time.  Thankfully all is well and my prescription remains the same which was amazing news as since the age of 3 every time I've had my eyes checked they have deteriorated so I was super happy. I got some new glasses which was a nice treat - £329 though. Never mind at least I have some nice glasses now.

I also went to see my GP as my hand keeps swelling up - here's a pic of it yesterday:

She said it's probably a repetitive strain injury from work but personally I don't think it is because it swelled up yesterday and I had a chilled day all day and haven't been at work since Sunday.  Anyway she told me to take anti-inflammatories everyday for 2 weeks and come back if it's not better.  The only problem with that is I take aspirin every day for my blood so I've already been doing what she told me to.  She also sent me for a blood test to check the amount of inflammation in my body in case it's lupus related and I have to see her in 2 weeks to discuss so we will see.  God only knows what's going on.  I don't think it's Lupus because usually it's symmetrical and I'd have pain and swelling in both hands and probably other parts of my body but I haven't so I have no idea.  I'll just have to wait and see.

Bloomin exhausting keeping on top of all the things Lupus/Sjogrens can do/does to your body!

I don't really have any other news.  Ooooh I did have my hair cut today which was nice.  Wow, I've really been looking after myself lately! My hair is a lot thinner than it used to be due to plaquinil so although I'd love to have it long I think it looks fuller when it's shorter so I got over trying to have long hair and went for the chop.  I've had really short hair before when I was on the chemo drugs but I hated it, I think it was because it was too short and the fact that it wasn't my choice but this time it was my choice so it's not so depressing.

Ohmygod I do have other news - I checked how many views my blog has had and it says half a million.  I don't know if that means that many people have read my posts or if it's just people clicking on it and then obviously there are regular readers but still, half a mil?? I have no idea but last time I looked it was 30,000 and now it's 450,000.  How?? I genuinely do forget people read this, to me it's just like a little diary or a way to vent, it really does help me, especially on the really bad days where I'm in so much pain I don't know what to do with myself. I come on here, type some shite, get all my frustration out, press enter and it feels like it's gone then I get a message from someone else suffering with lupus or another painful disease and they'll say my post made them feel better or they understand how I feel and then I realise I'm not alone.... That was quite deep wasn't it? Hahaha lets all hold hands and talk about our pain and emotional turmoil. Hahaha sorry about that!

For once most of what I've had to say is positive (apart from the fact that I will probably be toothless in a few years) but hey, that's a while off yet so lets not think about that for now.

Right, I need to go to bed - I'm up at 5.30am.  It's very odd working at 7am on a Saturday, I haven't worked at the weekend since I was 17! Na-nights. I hope you all have a lovely weekend. xxx

Lupus Playin Wid Da Wrong Bitch Yo!

Can you believe it's mine and Lupus' four year anniversary today?  Four years ago today that bastard changed my life forever.  If I'd have known four years ago what I was gonna go through I'd have probably shot myself.

Since then I've endured daily agony, I've lost and gained friends, I've hit rock bottom, I've taken more medication than I wish to count, I've spent the majority of the past four years in my bed or in my flat, I've had times of absolute despair when I've sat in the bath for hours crying and wailing, wondering how much more can a person take? I've cried more tears than most people will ever cry, I've debated with God (I'm not even sure I believe in God but desperate times and all that) I've had times when I genuinely thought I'd be better off dead because at least then I wouldn't be in pain.

Lupus is evil, random and stripped me down to my very core and as a result I am a completely different person now and funnily enough, I believe I am a better person.  I feel like after all that, all the pain, heartache (sometimes literally) all the shit times like being on chemo drugs and losing a lot of my hair, being on steroids and putting on weight, being in hospital, and having to give up my job because I couldn't cope, I feel like now I am building myself back up.  I lost a lot of confidence (which people who know me will know that's not something I ever struggled with before) and I didn't really realise until recently.  There were times when I wouldn't leave the flat for weeks and the only person I'd see was Sami, there were times when I just lied in bed all day long, hardly able to move with Jeremy Kyle and Facebook for company and times when I just felt so useless - what was my purpose? What was the point of me? Somehow I got through those dark days and managed to stay relatively sane and happy thanks to my friends, family, Sami and this blog but I don't think I realised just how crap it really was.  I mean obviously I knew it was crap, but I think I coped by telling myself it wasn't as bad as it was. Now that I'm working again (and loving my job) I've really noticed the difference in myself.  It's so nice to leave the flat on a regular basis!  It's great to be told you're good at what you're doing and its been really lovely meeting lots of new people and learning new things, as a result of this my confidence has definitely grown and I no longer feel useless.

I used to dread going to social events where there would be new people because I worried about what I'd talk about - people would say 'what do you do for a living?' or 'What have you been up to' and I'd say oh you know this and that or 'I'm planning my wedding at the moment' but the reality was 'I'm unemployed, on benefits and I lie in bed all day watching shite TV.' Or 'Today I slept for 10 hours then I woke up, cried for an hour and went back to sleep.'  Imagine the look on people's faces!

So what I'm trying to say is that after those very, very bleak times and losing a sense of myself, I am clawing my way back from rock bottom.  My confidence is slowly coming back and I can really feel the difference.  And although Lupus is really fucking shit, there are some positives in that I now appreciate much more than I did before and I think I'm a happier person because you don't take so much for granted, you value your time more, you realise you're not invincible, you learn who matters and whom you matter to.  Basically you realise there's a lot to be positive about.

The last four years haven't all been doom and gloom though, I also had the best day of my life when Sami and I got married and then we had an amazing honeymoon, we've been on various amazing holidays and my best friend got married so don't get me wrong, it's not all been bad but I still think I would've shot myself four years ago if I'd have known what I was in for.

I wonder what the next four years will bring?  I'm not sure I want to know. All you can do when you live with a chronic illness is take one day at a time which is such a cliche but I totally get why people say stuff like that now - because it's true and it's one of the best ways to cope.

Life is good at the moment - as I said earlier, I'm really enjoying my job and working part-time enables me to maintain a good work-life balance. Everyone is so nice and I'm just loving it.  Married life is lovely and we are hoping to sell our flat and buy a little house once I know whether I have a permanent position or not as I'm only temporary at the moment but we shall see what happens!

I promise my next post will be more entertaining - I'm not on form today as I'm knackered!  I just had to mark the 4 year anniversary and it was actually quite nice to have a little think about it all and to be able to say I'm finally coming out of the other end. Lupus aint beating this bitch.

xxxx

Candy Floss Brain

8-9 May 2014

Let me start by apologising for not blogging for a long time.  I haven't really been able to due to some tragic circumstances in my family and in one of my closest friend's families.  Due to these circumstances I felt like I couldn't blog without mentioning what had happened but at the same time, I didn't feel it was my place to publicly write about so I just went for the good ol' burying my head in the sand.  I'm sorry to be cryptic (I hate that shit) but I'll have to leave it there.

Anyway I'm back now and busier than ever.  I've recently got back from my best friend's hen do which was rather awesome if I do say so myself.  We went to Brighton from Friday - Monday and basically partied for 3 days and nights.  I was knackered when we got home on Monday afternoon - I sat on the sofa and stayed there till around 10pm and I'm pretty sure I didn't move a muscle. Sami went on the stag do in Budapest and got back late Sunday night so we both just sat there hugging, completely drained.  God knows what the boys got up to in Buda - I don't even want to know.  Us girls go up to quite a lot anyway ;0)

The week leading up to the hen do was rough - I had to use my walking stick and all sorts, luckily I pulled through and was fine for the weekend.  I'm sure all the alcohol and fun helped!

I can't believe my bestest friend in the whole wide world is getting married in less than two weeks.  I'm so excited - I well up every time I think about it and she's marrying such a nice bloke.  Yeeeyyyy.  Funny how we are both getting married in the same year.  We're funny like that - we do everything together. Haha.  Aaaah so excited.

I loved the hen do and I'm so glad it all went well and my best friend had a great time but I'm glad it's over now as I can go back to concentrating on my wedding which is only 5 months away! Shit-a-brick! Planning the hen do was fun but I told her she's not allowed to get married again!  It's all back to normal now and I've finally got my wedding invites ordered today - what a long process that is! Jaysus Christ! Can't I just send out a facebook invite?  That would be so much easier.

We've finally booked our honeymoon! After months of deliberation we decided on a an amazing hotel in Mauritius.  We just couldn't decide and as a very decisive person it was driving me nuts but booking your honeymoon is a big deal and we wanted to get it right.    Sami's Mum's husband found it for us and after having a look we fell in love with it and went ahead and booked it.  Only thing is, we are flying out the day after the wedding which is a tiny bit sooner than I wanted but they only fly out on Sundays so we just went for it.  I'm sure it will be fine.

I've done so much since I last blogged but I won't bore you all with all the ins and outs but I will tell you what I've got  coming up -

We've got a wedding in France in June (can't wait) I've never been to the South of France so I'm looking forward to wine tasting and all of that (French) jazz.  The bride has arranged for all of her wedding guests to stay in a chateaux so Sami, me and our friend Tom are going for a week.  There's gonna be a pool party, bbq, pub quiz and of course the wedding so I think it's going to be brilliant.  I feel very lucky to be having two holidays this year.  Very lucky indeed.

After this wedding we have a break from weddings for 3 months which will be quite nice as we've had a wedding or a hen/stag do every month for the past 2 years, which is mental.  Sami and I are the last ones out of our immediate group of friends so by the time our wedding comes around everyone will be sick of them!  I'm certain most people are already sick of me banging on about it! I even talk to strangers about it - cabbies, people in the doctors, people on the bus, hairdressers, the old tramp down the road....ok maybe not the tramp down the road but most people I come into contact with will know all of my plans.  I'm super excited as well as super broody.  I'm not sure how much longer I can continue to feel like this - it's almost physical. Honestly, my womb actually contracts at the sight of a cute baby (only the cute ones, not the Winston Churchill looking ones) but seriously it does.  I need a pug or a baby soon.  Sami said no to both...for now.  As soon as we are in a position to sell this place and buy somewhere bigger I'm getting a pug or a brussels griffon (or both) so hopefully we can move in a year or so.  We'll see.  For now I'll just have to continue crying at One Born Every Minute and going all weird when I see a cute baby.

  

Wednesday (I think?) 14 May 2014

Hey guys, I'm sat here writing this in a very odd position indeed - I'm sat up ultra straight with a bean bag around my neck and I'm not able to move my head left or right, not even slightly.  Basically I fell asleep on Saturday night and thought I must have slept in a funny position as when I woke up on Sunday I was in so much pain I couldn't move.  I couldn't get up and when I tried to, I screamed with pain. I was like 'Eh? What the feck have I done to myself?'  Seriously, what am I like?

I've hurt my neck by sleeping funny before and not been able to move it for a day or so but it's never hurt like this.  I literally spent most of Sunday crying in pain (oh poor me) and as someone that suffers with a lot of pain, it rarely makes me cry but this pain is ridiculous.  I felt awful all day Sunday, I didn't sleep well at all so felt like shite on Monday and today is Wednesday and I still feel like a hung-over 90 year old with a dodgy neck.  I decided the neck pain is actually a result of Lupus or fibromyalgia as its the same kind of pain I get in my elbows and knees when I have a flare up, plus I've been feeling overwhelmingly tired and like my brain isn't working properly.  Lupus brain fog is so weird - it's like your brain goes all fuzzy.  It's taking me ages to type as I keep forgetting how to spell words or what I was about to write and speaking is hard too. Once I've finished this I'm gonna take some potent pain killers and get in my bed. Wooo! Party for one!

As well as not really being able to move my head without excruciating pain, I'm also on fire.  Yep, I'm on fire.  Well my skin is so hot I reckon you could cook an egg on my chest.  Lupus is on a rampage today!

Here's me earlier on today with my microwaveable bean bag which helps the neck pain a lot - the heat is amazing although I'm still no impressed with this pain that seems to be ...I've forgotten the word I wanted to use...well it's non stop basically....that wasn't the word I wanted though. Arrrghhh! SO FRUSTRATING.


I've called the bean bag 'Billy Small Balls the Bean Bag'.  Yep it's got a name. All this medication is getting to me.

And here's me now, I've developed a rash this eveningv- it's also on my knees and my back - its just like sunburn and it fucking hurts like sunburn.

   

And here's a pic I made last year but it sums me up this week ( I thought I was so funny when I first thought of this) haha



I don't really have much else to say as I can't think....I was going to write about something but it's gone now and I've no idea what it was! Oh well.  I'll be back when I'm more with it and my brain isn't like candy floss.

 my brain

Relentless! That was the word I was after! Wahoooo Relentless!

Meh. Just Meh.

Thursday 21st November 2013

Today has been tough man. I've been in so much pain to the point where I can hardly walk. Fucking Lupus. Fucking fibromyalgia. Fucking fuck.

I woke up, got in the bath and couldn't wash my hair because I couldn't get my hands up over my head but luckily I had a hair appointment with Janet who is Sami's Mum's friend and colleague. She did some hi-lites for me and washed it afterwards (lovely) and Sami's mum (Viki) blow dried it. Viki could tell I wasn't right today so asked her husband Chris to drop me home afterwards which was nice. I got in, got straight back into my onesie and got into bed!

I'm feeling incredibly exhausted and my muscles feel like they've been pulled and torn. I cried for about an hour last night - I guess it all got a bit much. The tiredness is overwhelming sometimes and being in pain all of the time can wear you down and eventually I cracked and I cried...For absolutely ages. I had a great nights sleep though!

I was still feeling down and sorry for myself today when my best friend text me with good news to say I could go and work in her office one day a week as her assistant. We'd been talking about it for a while and she approached her boss to discuss it all and he agreed! I don't think I could manage more than one day at the moment but it will be so nice to get out of the flat for a day. Also it won't effect my benefits as I'm working less than 16 hours a week so that's an added bonus.

Its funny because Sil actually got me my first ever 'proper' job and strangely it was ten years ago exactly - 21st November 2003! She worked at RBS and had been there a few months when I mentioned I was looking for work and luckily they had an opening and I got the job. We worked together for 3 years until I moved on to work for The Dulwich Estate which is where I met Sami. We've come full circle after 10 years and we'll be working together again. I'm really looking forward to it and a bit of extra money won't go a miss. I'm starting next week! Yipeee!

I suppose today wasn't a completely shite day.

Sunday 24th November

Wow, I just read the above and I do moan a lot! But in my defence I'd had a particularly bad week.  I'm not sure what's going on but I've lost my confidence of late. I've just been feeling really low like in the obvious way with being in pain and stuff but also really low about myself. I feel like I look as shit as I feel! I've got spots which I never get, I feel fatter than usual and I just generally feel rough. Thank God I had my hair hi-lighted otherwise I'd have felt a whole lot worse. Maybe I'm just being silly I dunno. Its weird because I don't usually feel shite about myself. I mean I know I'm not the prettiest or slimmest person in the world but I'm comfortable in my (pale) skin and when I look in the mirror I'm not usually horrified by I what I see, but lately, well, I am. Ok maybe that's slightly OTT but I'm not happy.

All this wasn't helped by the fact that I went bridesmaid dress shopping on Saturday for Ela's wedding and it transpires I'm a size 14. Now, there's nothing wrong with a size 14 at all but when you look in the mirror and think of yourself as a size 12 and find out you're not, that's not good. So not only have I been feeling bigger it turns out I AM bigger. I've never been a size 14 before and when I met Sami I was a size 6! Size 6! I've put on quite a lot of weight over the years! Now I'm doubly depressed! I've got the opposite of anorexia - I see a slimmer person in the mirror!

I actually just want to hide for the whole of the winter. This is bollocks.

Monday 25th November

Omg! A month until Christmas!!!! Ahhhh!!!

I'm still feeling shit but I won't go on about it. I've decided I'm going to do something about it instead so now I'm on a diet. Yep, a shitty, boring, no fun, makes you want to cry diet. Is it just a coincidence the word die is in diet? Sigh. I had cereal for breakfast, a cuppa soup for lunch and prawn and veg stir-fry for dinner and wow I feel like I'm fecking starving!!! I like food too much!!! The aim is to lose about 20lbs and I'm going to aim for 2lbs a week as I hear that's the healthy way to do it. Although, I do wish I could just wake up skinny. And with long hair. Never mind.

I've just ordered a hula hoop as they're meant to be great for flattening the tummy area and trimming down your waist. I'm going to try and do it for ten mins every day. I'll be in body-con dresses in no time.

Did I tell you I did the lottery the other day? I genuinely thought 'this is it, I'm gonna be a millionaire!' I'm not. I didn't even get one number. I don't know why but I always think I'm going to win. Mugs game. Not doing it anymore.

Well I don't really have anything else to moan about so I'm gonna go to bed and try not to think about the biscuits in the biscuit tin or the halloumi in the fridge or the lovely salt and vinegar crisps in the cupboard. Oh no.

Na-nights Xxx

Little things mean a lot....

Saturday 19th October

I feel like all I've done since I got back from holiday is moan, moan, moan. I slept all day yesterday and felt like a whole day of my life had been wasted.  I was supposed to be meeting my mum for lunch and going to a possible wedding venue for a nose but no, I couldn't and then I had to cancel a dinner date, all because of Lupus.  So annoying.

I wonder how many days Lupus has caused me to waste? The fatigue sometimes is unreal. I couldn't physically keep my eyes open for most of yesterday. And now today I've woken up in pain.  I hate waking up in pain. Its like 'oh good morning Faye, welcome to a shit day!'

I need to not feel like this today as mine and Sami's parents are all meeting for the first time later. We're going for an engagement meal at a nice pub in Hayes. My mum and Sami's mum have met but no one else has. I'm looking forward to it so hopefully I don't feel like how I feel right now. I'm like a zombie. 

Arrrgh! I just yelped out loud in pain. My fingers hurt, I've got a pounding head, tender muscles in my arms, sharp shooting pains in my hips, shooting pains in my knees and my calves are all tight; if I stretch them it kills. Therefore today I will mostly be lying down. 

It is frustrating sometimes. I think to myself I'm young! I'm supposed to be out and about not lying in bed like an invalid. Luckily for me I'm lazy and enjoy lying down but not allll the time. Hopefully if I lie down all day I'll be well enough to go out this evening. 

I'm so lucky to have Sami. He knew I felt awful yesterday so on his way home from work he bought me a lemon tart (my fave) which really cheered me up and this morning he is going to run me a bath.

My mum showed me a song the other day called little things mean a lot by Kitty Kallen - it was my Nan and Grandad's song. I listened to it and it made me cry (in a nice way) because it made me think about mine and Sami's relationship and its true the little things do mean a lot. 

Here's the link to it if you'd like to hear it:

http://www.youtube.com/watch?v=2C7SzKv2uLU


I can't wait to marry him.

Right, baths ready....Will cath up with y'all later xxxx

Fuckyoumyalgia

Monday 10th June - evening 

After being diagnosed with another illness today it really got me thinking and I am just so incredibly lucky to have such supportive friends and family around me. And I'm lucky to have such a caring and considerate boyfriend. They all make living with this shit bearable. 

I speak to people with Lupus and other chronic illnesses who have really unsupportive boyfriends/husbands/family and I just think wow what would I do if I were them? I would not cope. 

I often think people not going through this do not understand how it feels but my loved ones try to understand and that's what's important.  And those that don't care and don't try to understand well they can just piss off because they have no place in my fabulous life.

I've just take my new tablet (I'm on 10mg of amitriptyline which is tricyclic anti-depressant - they aren't used as anti depressants anymore as they discovered they work for chronic pain and they relax the muscles) oh wow it feels wonderful! My muscles aren't hurting for the first time in like, forever! They've stopped spasming and everything.  I don't know what to do with myself. I want to jump around but I can't because I feel quite drunk. I just brushed my teeth and I had to hold on to the sink. I feel all floaty and super relaxed. Wow this is amazing. I love my life. I love my friends and my family. I love Sami and all his family and I just love everyone. I may have lupus and fuckyoumyalgia but its ok because everything else in my life is good. Good night. 

Tuesday 11 June 2013

Lol! I wrote that last night. It sounds like I'm high or something.

I have recently discovered that chronic pain is different to acute pain.  So with this fibromyalgia pain killers don't really work hence why when I had morphine a couple of weeks ago it didn't even touch the pain.  With chronic pain it comes from the brain so to treat it with anti depressants kind of makes sense because they change the way the brain sends out pain signals (basically I have a dodgy brain. Yep my brain is dodgy). Who knew?!   Another good thing about treating the pain with anti-drepressants is that Fibromyalgia can also cause depression plus living with shitty illnesses can obviously make you depressed too so hopefully by taking amitriptyline I will ward off any depression.  I kind of enjoy learning stuff like this.  When I was first diagnosed with Lupus I was obsessed with it.  I think I know much more about it than most GP's do!  So now my new obsession can be Fibromyalgia.  I'm gonna be an expert.

So after taking the tablet last night I woke up this morning and felt really spaced out. I didn't even know what day it was! I'm feeling fine now though. I am going to have to watch made in chelsea again on catch up tv as I know I had it on last night but I don't remember anything that happened! The doctor said for the first week I will feel a bit funny when I take this tablet but he said it will fine after a few days to a week. He said it will take a month before you notice any real difference with your pain. I'm hoping it does work because I'm in a lot of pain today and I mean a lot. I'm aching all over with stabbing pains, bad knee pain and I feel exhausted to the point where I can't stay awake. I need to muster up some energy from somewhere as I have got to have a shower. I hate not having a bath or shower twice a day. Its now 2pm and I'm still in bed, in my pj's. I feel manky. Plus I had bad night sweats last night. So I need to get up and sort this shit out. Right I'm gonna do it. Yep I'm doing it....

Ah that's better! I'm now nice and clean and fresh. Need to now muster up the energy to go and make some lunch. Ah really can't be bothered.

I was gonna go with my mum to her hospital appointment today but I'm just so exhausted, I literally can't do it. I feel so bad but I know she understands as she suffers with fatigue too. One of the hardest things to deal with when you have an illness is the guilt you feel when you say you'll go somewhere or do something and when it comes to the day you can't. I hate that. Luckily as I said earlier all the people in my life who matter try to understand and they never make me feel bad about it. But you can't help but feel guilty or annoyed with yourself. Just one of those things. Hopefully I'll learn to deal with it better as time goes on - I'm still quite new to all this chronic illness malarky! Stupid chronic illnesses trying to destroy me. Aint gonna happen. I'm going to embrace it, I'm going to hug it and say, 'Hey! Come on, show me what you've got!' And then I'm going to deal with everything head on, I'm going to laugh at it, smile and say, 'You will not get me down or ruin my positive attitude. You can mash up my body because that's beyond my control but you can't take away my smile or my laugh' No way.  So bring it fecking on!

Right time for lunch. 

I just had some lunch - tuna pasta with spring onion and I'm still hungry. My appetite is massive. I need to sort it out. I'm scared this new medication is going to make me gain weight (its listed as a side effect). I really don't want to gain weight! Why can't the side effects be weight loss and extreme beauty? I'm just going to have to keep an eye on what I'm eating. I've also realised the box says to avoid alcohol. Omg. This does not make me happy. I love my wine after dinner. I love cocktails on a saturday night and a glass of vino with Sunday lunch. I just love to drink! Hmmm maybe this isn't such a bad thing after all as I probably should cut down a bit. I'd just like to be able to have the occasional glass of wine but I'm not sure I can. Some people are saying its fine and others are saying no way.  Maybe I'll have a small glass of wine at home and see how it makes me feel. It will be a little experiment. 

I have officially given up my job now for good now.  I am un-employed. I just wasn't coping and I tried to stay on a couple of days a week but it did me in. I'd be on my back for 2 days afterwards so there is no point. And now that I know I have fibromyalgia too I need to relax and chill out for a bit. I'm hoping this new tablet will make a difference. My lupus is pretty much under control according to my blood work so its just getting this fibro under control and then I might have a life again. The kind of life I want. 

Its nice to know I don't have to get up for work at the moment as this morning I was a mess! So at least I can take time to adjust to my new medication, chill out get this under control and then maybe I'll be able to get a part time job and get my life back together. Woooo! That's what I'm going to keep in my mind. 

Ok I think I've waffled enough for one day. I'm going to spend the evening relaxing and watching shite on tv. Catch y'all later. Xxx

Saw this and made me laugh...

A bit like when you leave your phone at home for the day and you panic and when you get back home there are no messages or missed calls. Lol!

I'm Not a Drama Queen! Well, Maybe a Drama Princess

Here I am writing me blog from my bed again. =o( Not at work today. I woke up with the intention of going in but when I tried to move I decided gettin up wasn't a happenin today. My joints were saying (in their Samuel L Jackson voice) “Bitch! You aint going NO WHERE today! You staying in this bed and you gon' freakin chill!”

The voice of my joints - 

I woke up around 6 times in the night to go to the loo which is a bit annoying so on top of being in pain I'm knackered, oh and I've got a sore throat and a runny nose.  I've been waking up a few times to go to the toilet for the past few nights now. I'm hoping there is nothing wrong with my kidneys as the kidneys are the most commonly affected organ in lupus. Around half of people with systemic lupus will have some kind of kidney damage (usually within the first 5 years) so hopefully mine are alright. I had blood tests on Monday so they'll let me know if anything dodge is going on. Could just be a water infection.  

My doc did say a year or so ago that he believes my lupus to be confined to the joints and doesn't suspect I will have any organ involvement...I hope he's right. 

I don't have much to say today (for once) I'm just tired and fed up really. I did manage to change the duvet covers yesterday so at least I'm in a nice fresh bed. Mmmm. 

Not sure what to do with myself. I'm looking around thinking, 'Ooh I could clean the bathroom cabinet or, 'I could do the huge pile of ironing'. 
I need to stop and learn to relax! I just feel guilty lying here doing nothing. I know I'm unwell and need to rest but its hard to accept, especially as I'm only in my 20's. I feel like I should be having the time of my life not lying in bed like an empty shell. 

Do you know I'm typing this out on my phone then I'm gonna copy and paste into my blog. I couldn't be bothered to go to the next room to get the laptop. It will use too much of my precious energy! Sounds so bad to a normal person but I bet my fellow lupies are nodding and agreeing with this! You know what its like. 

I'm ashamed to admit this but sometimes I even consider wetting the bed (don't worry I've never actually done it) but when you're in bed, sooooo exhausted and in agony you just can't be bothered to move and you're desperate for a wee you lie there and for a few mad seconds you think, 'I could just wee here?' 

I was talking about this with a fellow lupie yesterday - she brought it up and I was like, oh my god, yes! I do the same thing! That is how exhausted lupus can make you feel. 

I don't know why lupus causes such bad fatigue. I don't think the experts even know so I can't shed any light on that one!

Writing this has worn me out! Back to sleep for me. At least in my dreams I am pain free. Oh wow how dramatic does that sound!?! It wasn't supposed to! I'm not that much of a drama queen. I'm more of a drama princess. Ooh I like that one!

Right as I'm starting to waffle its time for me to call it a day. Na-nights my lovely readers. Hope you all have a great day. Xxxx

Evil Fairies

Saturday 6 April 2013

Well today has been a load of cockwaffle.

Was fine all day at work yesterday until around 4pm when I got a searing pain across the front of my head.  I thought I was going to have to go home but as I only had an hour left I thought I'd just power through like the superwoman that I am.  Or maybe I'm just a twat.

Got home and had a nice chilled evening with Sami, we had an amazing rack of lamb with a pea and mint stuffing, potatoes and veg and a glass or two of rouge.  It was lovely.  We were boring and went to bed early as we both felt knackered.

Woke up this morning, felt fine - I was like 'YES! I feel normal!  So I made us breakfast - poached eggs on English muffins, mmmmmmmmm, radio full blast, singing and dancing round the kitchen...Then I was done for the day.  All my energy was zapped out of me by the evil energy stealing fairies. Bitches they are.

I had no choice but to get back into bed (about an hour after getting out of it).  I put the telly on and within 2 minutes I was fast asleep, dribbling all over the pillow.  This was at about 2pm.  I woke up about 4 hours later, had dinner and fell asleep again, its now 11pm and I'm just awake enough to write this but the old lupus aches are coming on now.  I feel like I've done a 20 mile run. Not that I've ever ran 20 miles in my life.

Brain is not functioning today.  I ran Sami a bath after cooking breakfast and for some mad reason I pulled the plug out.  Sami said that's the definition of mean - enticing him with a nice warm bath then he gets the bathroom and its empty!  I felt terrible! I said, 'Sorry, brain not on today'. Bloody lupus brain fog.

Sami is the best though, he cooked us dinner and has made me eat chocolate to cheer me up.  Even though he has man-flu.  He is an actual real life Angel.  Mmmm Cadbury Creme Egg....I would marry one of these bad boys....

So another Saturday has been spent lying in bed too exhausted to move.  I'll go to work on Monday and they'll say, 'Hey Faye, how was your weekend' and I'll be like,  'Yeah I spent it in bed'.  God I cannot wait to leave and get some kind of life back.  All I do at the moment is go to work, come home and sleep then at the weekends the week at work has done me in so I spend those sleeping too, then I get my energy back and its time for work again.

I was supposed to see my Friend Lexie this evening but I had to cancel as I haven't been able to stay awake for more than half an hour.  II'm like some sort of narcoleptic.  

I also had an offer to go out to a few bars with a couple of friends but again I had to say no because I'm not bloody well enough.   This hurts me a lot because I love getting all dressed up and having a good night out.

This really does suck arse.  Big, fat, hairy, old man arses.

Here I am - 'wallowing' in one of my rare awake moments.  No smiles today.  Fed up and bored of it all now.