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

Positive Vibes and Mung Beans

Wednesday 14th January 2015

Shit! It's 2015! How the hell did that happen? Well I have some very good news (makes a nice change huh?) I had a routine appointment at the Lupus Unit on Friday (it used to be at St Thomas' Hospital in London and to be honest it was a bit run down but it's moved to Guys now and it's all shiny and new) anyway, I had my appointment and the doctor told me that all my blood tests (all 16) from my last appointment have come back perfect.  Yep, perfect! No dodgy things happening whatsoever. I have a normal cell count, my organs are functioning as they should, I have no inflammation and basically, I am ALL GOOD BABY! I was quite shocked to be honest but I have been really well for ages now so I guess that's why.  Lupus is fully in remission - I kicked that shit to the curb! Faye 1-0 Lupus. Mu har har har!! 

On a less positive note, (sorry) the doctor told me to take Aspirin everyday from now on as I have a high risk of having a stroke. Nice. It's very odd to be told at 29 years old you are likely to have a stroke unless you take precautions.  But hey ho! Nowt you can do about it, just listen to the doctors and don't worry about unless it actually happens.

Ooooh I have more good news - I started a new part-time job in Waitrose a couple of weeks ago and I am absolutely LOVING it!  To be honest I've wanted to work there for a ages.  When I was full-time and struggling to cope I wanted to apply for a part time job but then I deteriorated even more and couldn't work at all.  Once I'd taken time out, my health improved drastically and I felt ready to work again so worked one day a week with my bestie but I found the travelling and 9-5.30 day took it out of me and when I was planning the wedding it was all a bit much so I decided to stop.  Once the wedding was over I felt a lot better and more able to concentrate on other things so I started working in a friend's shop which I really enjoy and I'm hoping to continue doing so but I still liked the idea of working in Waitrose - it's a ten minute walk down the road, I like shopping in there and I love food/cooking and talking to people so it's a no brainer really!

I went online before Christmas and they had a Supermarket Assistant role going for Tuesdays and Fridays working from 11am-3pm. Perfect! So after doing the online application (which involves phsychometric tests) I got through the first round and was invited to a group interview with 7 others after which we had a 1:1 interview and were told we'd be contacted within a couple of weeks.  I was also made aware there were actually 2 jobs going, the 11am-3pm one and a night shift from 12am-8am. They asked me if I'd be open to that and I said yes (thinking that if I got it, I'd do it for a while and then hopefully change my hours once I'd got my foot in the door) they also told us the contract is only 3 months which is disappointing but a jobs a job at the end of the day!  Anyway I had a call 2 days later and they said they'd given those jobs to 2 of the others but they had an opening for a job behind the counters (meat, fish, deli, cheese etc) she asked if I'd like that and obviously I said yes, the only drawback is that its working Saturday morning and Sundays but again, I wasn't going to turn it down.  

So yeah, I started a couple of weeks ago and even though I didn't get the job I applied for, I think I've ended up with a better job as I am enjoying it so much.  There is so much to learn! For the first few days I was on the Meat and Fish counter and I learnt how to gut and skin fish, I also learnt a lot about different cuts of meat and how to cook different things and I've loved chatting with customers.  I'm looking forward to getting to the point where I can recommend products and recipes.  Then the other day I moved on to the deli and cheese counter which I also enjoyed - who knew there were sooooo many cheeses and salamis?
I've been doing overtime too which is nice - they have a sheet up with any extra hours going and you can choose which days you fancy doing, which is perfect for me, because if I'm feeling tired after my weekend shifts I don't have to do any other days but if I'm feeling OK then I can stick my name down.  I feel like it's the perfect job for me and the situation I am in.  I'd love to become one of their cheese or fish specialists or an advisor but it's only a temporary contract so I don't know if that will happen. One of the managers told me they are all really happy with me and he said he knows a good'n when he sees one and I'm a good'n. So that was good to hear. And I think I'm doing well with the customers - well, one sang to me the other day! Haha! And a few others have said nice things so I think I'm doing quite well so far.  Hopefully they decide to keep me on!

Not a bad start to 2015! 

After 3 months of marriage I can't tell you the amount of times people have asked when we are going to start a family. Grrr! Personally I think it's a very rude question to ask - especially someone with health issues like me.  In January 2013 we were told not to even consider trying for a baby because I was too unwell.  I was told my risk of miscarriage was extremely high especially later on in the pregnancy (grim isn't it?) however, all is well now and I've been told I am all good to go ahead (although I am still at a higher risk of miscarriage but not as high as before). At my appointment on Friday, the doc asked me how old I am and when I said 29 he gave me a leaflet regarding pregnancy and Lupus and practically told me to go home and get on it! I explained I've just got a new job and we only live in a small flat (on the 5th floor) so it aint happening just yet and to be really honest, I don't think Sami or I are ready - we are having too much fun!  However, it's no secret that I am extremely broody and have recently taken up the habit of welling up at cute babies but I am not ready yet.  I think the plan is for me to have a permanent job then we can sell the flat and buy a small house/bigger flat and then we might think about it. But for now, it's not on the agenda. If one more person asks I don't know how polite I will be.  Oh, and, 'How's married life?' Its the same! Nothing has changed! Nothing! Apart from my surname! Oh and the fact that Sami can't run away so easily now but that's it! Lord give me strength.

In other news, Mum and I have started Yoga and Pilates.  Mum has a heart condition and you know all about me with Lupus etc so we thought it would be a good idea.  We had our first session last week and both really enjoyed it.  I think I said in a recent Facebook status that I was hoping to get all 'Zen and bendy' but the next day I was feckin banjaxed! I was stiff as a board and couldn't laugh without it hurting my 'core' haha, not quite the image I had in my head.  In my head I was all floaty and softly spoken in a pretty kaftan with weird beads around my wrist. In reality I was walking around like John Wayne and making old people noises whenever I sat down or got up.  Hmmm maybe the bendy zen will come in time.

There's a Facebook thing going around at the moment where you change your profile pic to the first ever one you had.  Wow, I did not like doing it, it made me realise I've aged quite a bit in the last 8 years! I was like shit! I need to go get me some expensive anti-wrinkle cream that has words all over the packaging like 'amino peptide complex'.  I was feeling really shit but then I went to work and a colleague was shocked I was married and said I didn't look old enough. This made me extremely happy. Then I went to buy some wine (cos you know, I was sad about my crows feet) and the guy ID'd me.  This made me feel better and the wine became a celebratory bottle as opposed to a commiseration bottle. Perhaps I'm not so decrepit after all.

This has been quite a long post hasn't it? I hope I haven't waffled too much! I'm not at work today so thought I'd so something rather than just sit there watching Frasier.  I'm not planning on doing much else today though - I worked Saturday, Sunday, Monday and yesterday so its time to chill today.  It's quite nice now that I'm working I can relax guilt free. I always felt so bad before when I did nothing all day. I know I was ill but you still feel bad when your husband comes home knackered from working hard all day and you're there in yesterday's pyjamas with unwashed hair and all you've achieved is finishing the Sex and the City boxset (for the fiftieth time) but now I can have a day off without it being coloured in guilt.

Right now to do some hula hooping - I'm back on it after looking at old profile pics! Not only do I feel old but I also feel like a big fatty boofta. In my head I'm a 15 stone 60 year old. Hahaha. No point whinging about it - gonna go get some over-priced cream with complicated ingredients, do some hooping and get some mung beans for my post-yoga lunch tomorrow. Or Quinoa? Oh, something nutritious and weird.  And then I'm blatantly gonna be starving and binge on fried chicken and carbs! Loads of carbs! I'm really not cut out for this eat-clean shite. Eat chocolate and be happy. People on strict diets are so boring and highly annoying.  One of the those e-card things hit the nail on the head with 'No one likes a skinny, sober bitch anyway.'

On that note, I'm off.  Happy New Year to you all - I sincerely hope 2015 is a good one. xxxx

Return of the Bridezilla

Allo! 

It's me, I'm back! I've returned from wedding oblivion – you know that place brides go to be mental and not care about anyone or anything else whatsoever? Well, I made it out alive. Just.

I aint gonna deny it – I was one seriously mental bride. Well not a mental bride, but I was off my rocker for around 6 months beforehand. The wedding took over my life, it's all I thought about, talked about and dreamt about. So for all those I see a lot, I apologise. It's over now and I hope you still love me.  Poor Sami. Poor, poor Sami. I'm so surprised he was there at the end of aisle and not half way around the world screaming 'I'm freeeeee!'

Wow, all that craziness for one day. But what a day it was! I won't go on about it because less face it, other people's weddings are boring but it was lovely and a lovely experience. I loved it all and I'm so happy to be Mrs Ceyhan (pronounced Jeyhan, yep, you read that correctly a 'C' pronounced as a 'J') Some people say it's no different and technically it isn't – you're still the same annoying people but it just feels more solid now and to share the same surname makes it feel like you're even more of a team. I dunno how to explain it but basically I'm loving this marriage stuff. On honeymoon Sami and I kept saying to each other 'Dunno what everyone moans about, this marriage lark is great!' Lol! But we were on a beach in Mauritius and had only been married 5 minutes.

Right, I promise I won't go on about weddings any more, if I go on too much you have permission to punch me in my eye.

So apart from honeymooning, I haven't been up to much. We are thinking of selling the flat to buy somewhere bigger and we had an estate agent round today but nothing is actually happening just yet, we are trying to figure out our options first but it's all very exciting! It's weird – I don't feel grown up enough to be doing all these things like getting married and selling property! Selling and buying a new house is what you do in Monopoly, not in real actual life. It's madness I tell you! Madness!

Lupus wise its all the same old, same old - one day good, 4 days bad etc etc. I thank the Lord I was well on the wedding day as I had been pretty awful the few weeks before but I think it was all stress related. I've not been too bad since though, I'd say I'm better than usual but I think it's because I'm still on a high from the wedding and our honeymoon. I don't have post wedding blues or anything like that I'm just wandering around in my pink and fluffy bubble of happiness with the song 'happy' on repeat. Lol.

I have been quite bored with no wedding/honeymoon to plan though. What the frick did I do beforehand??? I really want to get a part time job but it's hard because when I feel well I'm all like ,'Yeeeeah, I can get a part-time job, it will be fine!' Then I get ill and I'm like 'What was I thinking? I can't be getting no part time job! You is crazy girlfriend!' haha. So I dunno, if I do it would only be local and maybe a couple of 4hr shifts or something. Sami reckons I just need to up my 'wife game' and start baking. I love cooking but I've never really been into baking – I'm scared I'd get too into it and we'd both end up morbidly obese. I often take things to the extreme – I'm not the kind of person to do things half heartedly, it's all or nothing! So I might have to leave the baking thing. Hmm, maybe I could just make my own bread or something? Sami would come home and there would be bread everywhere! Nope, I'll just stick with my normal cooking. 

I made a lasagne last night big enough for a family of 6, we eat half of it between us and then I wonder why I've gained weight since the wedding. Speaking of which, Sami being the wonderful man he is made it quite clear I'm not allowed to get fat or 'let myself go' now that we are married. I grassed him up to my Dad hoping he would say Sami is out of order or something along those lines but he said, 'Well, I think Sami should make you try on your wedding dress every year to be sure it still fits.' Cheeky bastards! They said they were joking but I think they kind of meant it. I told Sami he has to try his suit on every year as well and he just replied with 'At least I will get better with age, you'll just deteriorate.' Nice! 

Men do though don't they? With their distinguished grey hair and more mature outlook on life . What happens to women? We grow beards and tits down to our ankles. I'm gonna start saving for surgery now.

Anyway, not sure what else there is to tell you really, I could waffle on about our wedding and honeymoon but I'm sure that's not that interesting to you so I'll spare you the boredom. Other than that nowt much else exciting is going on.

After reading loads of negative stuff lately I decided I was gonna do a post about all the best feelings in the world such as fresh bed sheets, etc but I fell asleep (damn fatigue) so I'll probably do it another day. Aahhh! It's good to be back! I've missed blogging and waffling on about my life! I'm still surprised people actually read this shite.

Right, that's it from me, have a good weekend my lovelies and I shall be back soon.

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!

A new perspective

Owwwwww! Motherfuckermotherfuckermotherfucker!!! Owwwwww!! Jesus Christ Almighty!

Yeah I'm in pain.  I woke up feeling rather good this morning (weird considering how shite I felt yesterday) anyway so I made Sami and I porridge for breakfast, did some housework and thought 'Hmm I'll go for a walk, may as well get some exercise and fresh air.'  So that's what I did and now I'm in fecking agony. 

I needed to pick something up from the post office so thought that's a good excuse for a long walk (1 hour there and back) but half way I started to hurt and by the time I got there I was a mess.  It was like my hips froze (they probably did, it's freezing out today) and I literally couldn't walk.  I stopped by a wall and tried to regain some strength (and probably looked like a right weirdo) whilst some white-van-man tried to chat me up.  He obviously didn't realise I'm a 90 year old in disguise of a 28 year old!  After a few mins I managed to walk again, I got to the post office in one piece and managed to walk back home - not really sure why I didn't just get a bus! Idiot.  I'm currently sitting on the sofa nearly in tears with the pain.  I've got pain all over my body now.  I actually can't remember the last time I could walk longer than ten minutes without being in severe pain.  I really hope its because it's cold and not because my Lupus is getting worse.  That's what I'll tell myself for now anyway.

I've got washing to hang up, ironing to do and I'd like to hoover but right now that aint happening! Grrrr.  

Lupus is so restrictive! I also really want to do that 30 day squat challenge but I'll probably do one day and be on my back for 5.  I've tried so many times to get into an exercise routine and it will all be going well for a week or 2 and then I get ill and it all goes down the pan.  Before Lupus I used to go to the gym 4 times a week and sometimes twice in one day.  Now I can just about walk up a flight of stairs!  I shouldn't bang on about it though - someone once said to me not to dwell on what life was like before Lupus.  I suppose there's no point really as I can't go back to that time.  I just have to accept that this is my life now.

Yep my life now is getting half way to the post office and needing a zimmer frame, not being able to do more than one thing a day, needing to sleep all the time, having to take shitloads of pills because if I don't I will die, whinging in a blog, sitting around in my onesie watching Jeremy Kyle instead of going to work, stuffing my face with chocolate out of boredom and then moaning about being overweight, losing weight and then having to go on a course of steroids and putting it all back on again, living with pain all the time, constantly letting my friends and family down because I'm too tired to do stuff, constantly feeling guilty, being in so much pain I have to crawl to get around the flat,....Oh how I love my new life! Yes, lets not dwell on how great my life was before!  Fucks sake.

Don't worry, I know, I'm being melodramatic - it's not all bad.  Lupus is shit, there's no denying that but I get on with it, I've turned it into something positive with this blog, I know it helps others and that makes me feel great.  It's also made me realise how much I love writing and has given me the kick up the arse I needed to write a book.  One day I will be a successful author and I will laugh  in the face of Lupus Muharharhar!!!

Lupus has also given me more confidence (in a weird way) because it's made me realise how strong I am as a person.  I never let it get me down, well, I have the odd day but overall I stay positive even though most days I am suffering with severe pain, aches, tiredness etc.  I do what I want to do now and not what people expect of me.  I live by my rules.  If it doesn't make me happy I don't do it. Simple as that.  Lupus has given me a very different perspective on life and I like my new perspective because  I am so grateful for the little things and I never take anything granted, least of all my health.

Slap me with a wet fish!

Saturday 16 November 2013

After a hellish week (I actually thought I died and woke up in hell at one point) I'm feeling loads better. I woke up on Thursday and felt great so ended up getting loads of housework done which also made me feel better and Lexie came over in the evening for dinner. All in all a good day and it felt good to be back to 'normal'.

I felt good yesterday too but decided not to do anything. I ordered a onesie on Thursday which arrived yesterday afternoon. I love it! It is seriously awesome! I bought it because apparently we have the coldest winter ever on its way and I wanted to be prepared (you can tell I was in The Cubs). I sat around in it (being fabulous) all day and in the evening Sami and I went to a pub in Wimbledon for our friend Jenny's birthday. We got home about 12.30am and I got straight back in the onesie! I'm scared I'll never take it off.

Here's me in my onesie....(it's a little bit big)


Look how happy I am

Today I'm going bridesmaid dress shopping with Ela - hopefully we'll finally find something. Its turning into a bit of a nightmare! My figure is all out of proportion and I'm very short so it hasn't been easy to find something that fits. I have big boobs and no hips! Grrr. Ela's wedding is in February so we don't have much time left.

After bridesmaid shopping I'm gonna come home and yes, get in my onesie! Thankfully I don't have plans to go out tonight - the besties gonna come round for steak and chips. Mmm steak and chips....

Sami's gone to Yeovil for a boys weekend (the boys being his house-mates from uni) so I've got the flat to myself. He goes on these boys weekends maybe 4 times a year but 2 of the lads now have babies so the weekends aren't as often as they used to be. Sometimes the wives and girlfriends go along too - usually camping which I hate!!! Why do people enjoy camping? Wtf is up with that? The last time we all went I told them its the last time. Its not for me. Anyway this time round its just the boys and they're staying at Phil's house so I'll be in bed alone tonight. Poor me.

Sami and I are one of those annoying couples that do everything together but I do think its good to have time apart. The longest we've ever been apart was when Sami went to America (with the boys) for 3 weeks. I missed him so much it hurt! At the time we'd been together around 6 months and it was then I realised I wanted to marry Sami and never be away from him for that long again. And now we are getting married! Yey!

I know I keep going on about it but this onesie is so cosy. I feel so content! I'm in bed, I've got a coffee, the heating on, I'm not in pain today and I'm the comfiest person ever. #lifeisgood!

If you ever feel down just buy a onesie.

I am a little hungover today actually, although I'm not sure why as I only had 4 beers! #lightweight. Must learn to limit alcohol intake.

Right, I'm off to get washed and dressed. Bridesmaid shopping!

Sunday

Bridesmaid dress shopping wasn't successful. The nightmare continues!!! I got home and back into the onesie and Sil came round armed with wine. We drank the flat dry and didn't go to bed until around 4am. Whoopsie! Must learn to limit alcohol intake.

Needless to say I'm slightly delicate today but overall I feel fine. All I've done all day is eat. I made myself a big cooked breakfast and when Sami got home I cooked us a huge paella with chicken, chorizo and prawns. Om nom nom. Love cosy sundays and stuffing my face.

I've been thrown out of the living room and made to watch TV in the bedroom. Sami couldn't handle anymore of my shows. First I watched Come Dine With Me then strictly come dancing followed by the X-Factor and when I put I'm a celebrity get me out of here on Sami couldn't take anymore. Sunday TV is the best!!! We usually spend Sundays at Sami's Dads so wouldn't usually watch all those things. Never mind I'm sure I've watched football enough times to make it ok.

So tomorrow I have no plans. What will I do? If I'm feeling ok I might clean the inside of the oven. Its not filthy but I haven't given it a thorough clean for a few weeks. We'll see. I should get out more really but I hate the cold, It makes me hurt. That reminds me, apparently we have the worst winter ever on its way. I'm scared! I've heard we're going to have 100 days of snow and its going to be much colder than usual. I'm seriously considering hibernation - I reckon I could do it easily. I've just realised I'd already mentioned the coldest winter ever is on its way! Bloody Lupus brain fog.



I love and hate winter. I love the feeling of being cosy, I love X-mas, I love snow, I love hot chocolate and marshmallows, snuggling by the fireplace, comfort food, wearing my onesie (not sure if I've mentioned that?) But I hate how the cold affects me now. Its like it gets in my body and beats me up. Plus everyone gets colds/viruses etc so I just end up constantly ill plus my Lupus gets worse in the cold so its a good thing I enjoy snuggling up really. At least I'm not one of those people who enjoys 'doing stuff' like rock climbing and hiking and stuff. I enjoy sitting down, eating and drinking wine.



Monday

Great. I've woken up with a sore throat, massive and painful glands in my neck, my ear hurts and I'm aching all over. Obvs some kind of cold or something.  When you have Lupus and you get a virus or a cold etc it makes the Lupus flare up so not only do I have a cold to contend with I also have a flare up.

Imagine how rotten you feel when you have flu - headache, nauseous, exhausted, aches and pains etc now imagine you've also been beaten up with a baseball bat. That's my life on a daily basis. Now throw in a cold to that mix and that's my life today. At least I have my onesie. Its gonna be one of those days.

I wrote all that at about 9am this morning, fell asleep and now its 2pm! Whoooops!! I just rang my Mum and she said she too has a sore throat and has struggled to stay awake. Lexie text me earlier and said she'd been sent home from work and my friend Amy put a status on facebook saying she has a sore throat so I reckon we've all got the same bug. Even now I'm finding it hard to stay awake.  Hate feeling like this - I haven't achieved anything today. I planned to clean the oven and all sorts! By the time I've had a bath and tidied up a bit it will be time to get dinner on. What a waste of a day!

I just had a bath and for some reason came over all sorry for myself. I was laying there thinking about how often I feel unwell compared to how often I feel OK  and it suddenly hit me that I will have Lupus and all the other things I have for the rest of my life. The.Rest.Of.My.Life. I feel really sad. I used to have so much energy and be so full of life. Now I'm like an old granny that can't even stay awake a whole day. Wow my life has changed so much.

OK, someone slap me with a wet fish and tell me to get a grip! Jeez Louise I can't be going down the feeling sorry for myself road. That's not a good route to take on this journey and a miserable face doesn't suit me. Right I'm gonna get up, make a cup of tea and think about all the reasons why I'm lucky.

Hopefully tomorrow will be a better day.

Pain for company...

What the fuck Lupus? What the actual fuck!!!???

I am in so much pain. Its almost unbearable. This is my worst day for a while. I can barely move. I'm just stuck in bed with pain for company (oh gosh how melodramatic does that sound? Lol)

I was alright earlier - mood wise I mean. I was all 'think positively' etc now I'm at the end of my tether and thinking how the hell am I supposed to cope with this? Sometimes when I'm in pain it sort of comes and goes or I only feel it if I move the painful body part but on this occasion the pain has been constant since I woke up. My back is burning as a result of a lupus rash so now I've got that to contend with too. Oh and my muscles in my arms and legs are spasming violently. I just tried to film it but of course it stopped. Now I'm not filming they're back for their little rave under my skin. It looks so weird!

I'm pissed off and fed up.

Tuesday 12 November 2013

I took some tramadol and managed to fall asleep after that. I didn't even wake up to pee or with the night sweats - I haven't slept through a whole night for a very long time. Good ol' tramadol.

I woke up this morning much the same as yesterday except a little less pain but feeling very weak. I have no energy whatsoever. Sami has taken the morning off (so now I have Sami AND my mate Pain for company) to look after me as I could hardly move yesterday so didn't really eat or drink. He just ran me a bath and washed my hair for me and now I'm back in bed just lying here aching and feeling exhausted from having to get up to have a bath - sounds pathetic but its true.

Looks like its another day spent in bed for me.

I've made a start on my book seeing as there's nothing else to do!
So far I've decided its going to be about a lonely and selfish housewife called Pixie. She gave up her high powered career (not sure exactly what she did yet) after marrying Henry. Lovely, perfect (and very rich) Henry. All she cares about is sex, shoes and shopping whilst Henry is desperate to start a family. Pixie's not keen on the idea and doesn't want to grow up (and god forbid be responsible for another human being) she just wants the lavish holidays, jimmy choos and lunches with her girls.  As a result of boredom she ends up having a string of affairs. How could she cheat on her perfect husband? is he as perfect as he seems??

That's all I'm saying for now. I just want it to be a light-hearted chick-lit book. I think writing it will prevent me from going insane! There's only so much time you can spend lying in bed in a lot of pain without feeling like you're going crazy!

I might post the first chapter here and see what you all think. I would love so much to have my own book. If I could make money from writing I would be the happiest person ever!!! I would absolutely love to be able to call myself a writer. Before becoming too ill to work I had worked full time since I was 17 and I've never loved any of my jobs. I've liked them all but never had a real passion for anything I've done. I've never really known what I want to do but when I started blogging it all clicked and thought 'I'd love to be a writer' so I'm gonna do it. I don't know why its taking me so long! Right, I'm gonna make a start right now.

Watch this space!

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

Lupus & Me/ More like My Wedding & Me...

Hi everyone,

It's been a busy few days of drinking champagne, opening cards, going out and celebrating etc - it's wonderful! I love being engaged!  It's just so happy and lovely.  I haven't even been 'lupusy' I think it's because I'm too happy!  Ooops maybe I shouldn't have said that.  Stay away Lupus! You aint welcome round here!

Lots of people are asking so now you're engaged whens the wedding?  Well to be honest I still feel a little bit shocked and I'm loving this engaged feeling so we're not in any rush but we are hoping around October next year.  Sami's sister is getting married in February so I think 8 months after her is an acceptable amount of time.  If Ela wasn't getting married then we might have even done it sooner but I'm happy to wait and we'd never steal her thunder so we'll make sure its a while afterwards.

I don't really see the point in being engaged now and waiting years to  get married...That doesn't make sense to me.  Unless we had to wait in order to save money or something but I don't think we'll need that long as we'll probably have quite a small wedding.  A few days after we got engaged I asked Sami when he'd like to get married and he said 'Well as soon as possible really as there's no reason to wait years.'  I think the tradition is to get married a year later? I'm not sure, I think that's what most people do though.  I mean we're not in any rush but I don't want to be engaged forever.

We'd like to have a low key wedding with just our nearest and dearest so it shouldn't take too long to plan - maybe I'm being naive I don't know but I'll soon find out!  We'll probably have a maximum of 70 guests and we're thinking of having the reception in a pub so we'll see.  I just want the day to be about us and our marriage - I don't want the 'wedding' to take over that.  I bet I end up with 200 people in a huge stately home!

I'm thinking of having an engagement party when we get back from holiday as mine and Sami's families don't really know each other so I thought it would be nice at the wedding if everyone has already been acquainted with one another.  Plus I want to celebrate this as much as possible! We've had such a shitey few years and now this wonderful thing is happening I want to make the most of it.  It feels so nice to be able to celebrate and have this joyful occasion in our lives.

I really can't wait to be married to Sami.  I can't believe he actually proposed to me but I have to say I'm glad he waited as now I know he is definitely ready and I'm loving how into it all he is.

Anyway I don't want this to be a wedding blog so I won't bang on about it too much and we'd also like to keep our wedding details etc quite private so hopefully I wont go on and on about stuff that no one actually cares about! Chair covers this and centre pieces that...no thanks.

So back to the real purpose of this blog - living with Lupus.  As I said earlier I've been feeling pretty well of late.  I am super tired but I haven't really been sleeping well  - I wake up about 6am everyday and think 'Wow I'm engaged!' and then I can't  get back to sleep because I'm so excited and have all these wedding ideas going round my head.  But other than being tired I'm fine.

We are going on holiday on Sunday so I've got lots to do before we go, house work, packing, insurance etc plus we have a 30th birthday party to go to on Saturday.  Can't wait for the party but we'll have to leave early as we have a 10 hour flight the next day.  Sami and I are NEVER the first to leave a party - we're usually the last! It will feel odd leaving early but needs must and all that.

I cannot wait for our holiday - the sun can be a trigger for Lupus so I'll obviously have to be careful but I'm not massively into sunbathing anyway so I'll probably sit in the shade with my book.  I'll come back white and Sami will be all tanned - jealous? me? Never.  I've got Irish skin so even if I didn't spend most of the time in the shade I'll still come back white with a hint of pink.  Sami gets a lovely colour but his Dad is Turkish so maybe that helps!

When we booked this holiday I had no idea we'd be engaged so now I call it our 'engagement moon' God knows where we'll go on our honey moon now that we are going to the Maldives...I think I'd like to stay in a log cabin somewhere with a cosy fire place.  Sorry, I'm going on about weddings and shit again aren't I? I can't help it - it's all I think about.  I didn't blog for ages because I can't think of anything else to talk about or say other than my engagement! OUR engagement - must get into the habit of saying we and our - I keep saying I'm engaged instead of we're engaged.

I bought Sami grand theft Auto the other day - I think I may come to regret that as its been played rather a lot lately he even jokingly suggested he bring it with him to The Maldives. Well I hope it was a joke....

I had better go and get on with all my chores.  I probably won't do another post now until after the holiday so keep well and I look forward to updating you all once I'm back.

#nofilter

Thursday 12 September 2013

......Continued from yesterday

I've had to give in and take steroids because this flare is too much, its strong and relentless in its quest to destroy my day and my life.

For those of you with Lupus you'll understand why I hate the fact that I've had to go back on the steroids and for those that don't understand, I shall explain...I do actually have a post titled 'Steroids' which goes into their side effects a lot more than I will now but basically they are evil and must have been created by the devil himself. They help with flares and get them under control quite quickly but they mash you up in other ways.  They cause havoc with moods (I've been known to get a bit 'hulky')

they give you the appetite of a beast and just because you're not fat enough from all the beast like eating, they also make you retain fluid and where does this fluid hang out? Well your once slim face and belly so you look like a bloated mess.  Oh and there's more, they cause heart palpitations, insomnia, nightmares and if you are unfortunate enough to have to take them long-term, they can also cause osteoporosis and obesity and we all know the separate issues obesity causes. So, to sum them up they're bloody awful but at this moment in time, I've decided the flare is worse than all of the above and hopefully I'll only need to take them for a week but I'm still not happy. If steroids were a person I'd beat them up. And then I'd hug them.

Today the pain has been awful. Its been the worst day I've had since I gave up working. I am in so much pain I literally haven't been able to think. The only thoughts I've had are, 'ouch' and 'fuck!' I've slept a lot of the day but I'm sure I was dreaming I was in pain so I don't feel like I've had a break. The pain has varied from short, sharp stabbing pains (the kind that makes you yelp out loud) to just general aches but my WHOLE body aches. Literally from my head to the tips of my toes. The worst pain, randomly, is coming from just below my shins so walking is quite the challenge. Hence why I've been lying down all day! 

I seriously hope tomorrow is a better day - this pain is intense! I can't believe what I am going through. I actually can't.  On a scale of one to ten, one being standing on a piece of Lego and ten being ohmygod I've lost a limb and my heads fallen off, I'd say I'm at a seven today.  

I think the fact that the pain lasts all day long probably makes it feel worse than it really is, I don't know. Sometimes I'm in agony for weeks; you just don't know how long a bad day will last which also makes it difficult to cope with. 

People often ask me how I cope. The truth is, sometimes I don't cope. I have days when I cry and wail and wish it wasn't happening and I say things like 'Kill me! Someone just friggin' shoot me!' But strangely, sometimes when I'm at my most unwell is when I'm also at my most positive. Today for example, I haven't cried or Why Me'd or anything. I've just had a laugh taking the piss out of daytime TV, eating chocolate and although I've had a whinge on my blog, I'd say I'm generally in a good state of mind. How? I have no idea.  I wish I could tell you its down to this magic potion or a tablet but its not. I am fully aware of the shitness my illness brings to my life but I also have a lot to be grateful for and I guess I must just focus on those more than the pain etc of lupus/fibromyalgia.

I say this kind of shit to myself all the time:

I am a bit pissed off today but only because I like to get out and I've been stuck in the flat for 2 whole days.. and its a mess. I love it when its all clean and dust free and I can go for a walk. Obviously lying down all day gets a bit boring and I get that guilt feeling for sitting on my arse all day. But as I was writing that I said to myself, 'Well tomorrow is a new day and you might be able to get out and about.' That's what I do, if I feel or say anything negative I then say something positive to myself i.e. 'Urgh I'm in so much pain and today is really crap.' Then I'll say 'But tomorrow I will go for a walk and see my Mum' or, 'But there's a new episode of The Big Bang Theory on later' and I feel slightly happier because I have something to look forward to. I guess I am lucky I have a positive demeanour and outlook and perhaps that's what it is that keeps me going. 

Pain does wear you down and I think I lost a little part of me over the past year but I'm starting to come out of the other side now and I'm learning how to cope better. I feel more like me again. The good me that is, not the worn down, deflated and rubbish version I had started to become. For some odd reason I feel a lot more confident as well, like much more comfortable in my skin and with who I am. Its weird. I think I've got my mojo back. Lupus did wear me down but I've come back stronger. Lupus O-2 Faye. 

Mu har har har!! If Lupus was a person I would look at it, do a little dance, put my middle finger up and in a Chinese accent say, 'Fuck you, Mother fucka!' Then I'd walk away with my held high and leave it standing there feeling like a wanker. Lupus would feel embarrassed. Then I'd blatantly have to lie down because all that dancing knackered me out.

I'm a bit waffley today. I'm literally just writing as I'm thinking so this is probably a bit all over the place today - plus this is my second blog of the day?? What am I doing? Just think of it as being inside my head. You are actually in my head right now. 

I usually write all my shite and proof read and edit it but I'm just gonna post this one. Its like its raw. #nofilter  

I've taken a lot of pain relief today which might go someway to explaining why I'm sounding a bit crazier than usual. Hmm co-codomol and tamadol is the  good stuff.  I've heard weed helps chronic pain sufferers. Lol smoke some chronic for the chronic pain. Not sure how I feel about that. Maybe I'll give it a go and see! Or maybe not. I don't wanna be addicted plus I'm unemployed. I'm not sure I should be spending my benefits on drugs.  Anyway, I think I'm going to go to bed now. I'm not even making much sense at the moment. 

G'night my loves. Xx 
Please feel free to send me a message if you ever have any questions or if you just need someone to talk to.  I like helping people. Xx

Today.....

The good news is I'm feeling slightly better, I'm still in pain but it's not as bad.  Hopefully I'll continue to improve as the day goes on.  

Sami was so sweet this morning and brought me a cup of tea in bed on his way out to work,  I even had to do a Facebook status about it because I thought it was so lovely.  It's the little things in life that make a big difference.  I feel all emotional this morning! How weird, someone come and slap me with a wet fish!

My plan for today is to clean the manky bathroom, change the duvet covers and hoover.  To a normal person that doesn't sound like a lot but to me that is a lot, I'll need a 20 minute nap after each chore.  I could ask Sami to do it but he doesn't get home from work until around 7pm and by then he's knackered.  At the weekend he helps out and when I'm poorly he does the washing up but now I'm not working I do the majority of the housework (when I'm well).  We have quite traditional roles really.  Oooh he ironed some shirts the other day - Sami NEVER irons! But to me (and this may sound controversial) I think its right that he doesn't.  Even when I was working full time I was responsible for all the ironing.  Sami wouldn't ask me to change a tyre or go out and fix the leaking roof on the garage and I wouldn't ask him to do the ironing.  It's just the way we are which might be a bit backwards but it works for us.  I'd love to be a proper little 1950's housewife!  Bit sad really that my only ambition in life is to be a housewife and have lots of kids! And a pug.

I've been using Estee Lauder Night Repair Serum for the past month and I must say it is seriously amazing.  I'm only 27 (and 11 months) so I don't have loads of wrinkles or anything but my eyes were starting to get a bit wrinkly and since I've been using the serum I have noticed a difference and my skin just looks better in general.  It's amazing and I highly recommend it.  It's pricey at about £45 but it works.  I love everything Estee Lauder, their foundations are exceptional and their mascara does what it says it does.  Just thought I'd let y'all know!

Ok, I had better  get some breakfast and start my chores.  Wow, I must be feeling better as yesterday I couldn't even conjure up the energy to go and make a bit of a toast!  Bad times.  I must not overdo it today though as I need to be feeling good tomorrow - it's mine and Sami's anniversary.  6 years he has put up with me for! We are going to go out for dinner somewhere nice, not sure where yet as it will probably depend on how I'm feeling and if I'm feeling really bad we will postpone until next week and the week after that we are off on our hols to The Maldives!!!! OMG its finally nearly here.  I am beyond excited.  Its so lovely to have something to look forward to.

Right I really must get going now.

Catch y'all laters xxxx

This hammock has my name on it......

Guilty Pleasures....

Friday 6 September 2013

Doctor says to me recently, 'Faye you are so lucky not to have the lupus butterfly rash on your face.' 
I replied through gritted teeth, 'Yep! I'm soooo lucky to have lupus but not the rash. Lupus is wonderful.'

What I should have said is, 'And YOU'RE so lucky I don't throat punch you.'

Don't you just love doctors? I could dedicate a blog solely to the idiotic things doctors say.

For those non-lupies who aren't aware, the lupus butterfly rash (or Malar Rash) is a very common symptom of Lupus and is a rash across the nose and cheeks that can resemble the outline of a butterfly.  I think about 80% of people with Lupus have it during a flare up or at some point in their lupus life.  I guess I am fortunate not to have it but at the same time I suffer like hell so wouldn't really count myself as lucky.

Anyway so yesterday started off good then went from bad to worse. The day turned on me like some kind of evil traitor.  By 8pm I was knackered and felt like the walking dead. By 9pm I was ready to commit suicide. Ok, maybe not that bad but I felt pretty dire. 

After dinner I felt really sick, like to the point where my mouth was watering; my body was preparing itself for vomiting... I was trying to watch New Girl but all I could think was 'I need to puke. I need to puke. I need to puke' I think I eat too fast because I was so hungry. And I won't lie, I am greedy.  When the sick feeling finally subsided I began to ache and the aching progressed into quite severe muscle and joint pain until I was unable to straighten my arms out. I was in agony but s'my fault for over-doing it - you'd think I'd learn by now wouldn't you? Nope. I did so much housework and I shouldn't have. Naughty Faye. Clean things make me happy though, dust and dirt makes me sad. Poor Faye. 

Today I am feeling quite awful (muscles are burning, I feel so stiff its like rigor mortis is setting in and I'm soooo, so, so tired. Maybe I am actually dead) so I shall therefore mostly be doing Jack Diddly Squit - I've only been out of bed for 2 days this week! I am going to relax allllll day long with chocolate and daytime TV. Although, I really can't stand the amateur hosts/TV presenters daytime TV chunders out.  Where do they find these halfwits?

Oh gosh, there's a new programme on at the moment with Jane McDonald or Jane McHair as I like to call her (have you seen the hairstyles on it? Wow. I want to ask her if she's aware the 1960's puked up on her head) well she goes around to different work places surprising employees (who have been selected by their boss) with a makeover and slap-up meal. Nice idea but its absolute junk. Firstly, Jane McHair is seriously lacking charisma and secondly, what about the other poor sods in the office who weren't chosen? Talk about cause beef in the office. I feel sorry for the sados who didn't quite make the cut whilst Betty O'Igivethebossblowjobs gets picked and has a lovely day off.  
It winds me up, yet I've watched it 3 times this week. I just can't keep my eyes off Jane's head. If you don't know who she is here is a pic for you:

This is my life now; Lupus flare ups and trying to dodge the worst daytime TV shows, or watching them and ripping the shit out of them. 

Dinner Date is another fave one of mine to rip the shite out of (in between all the cringing and hiding behind my hands). If you've never seen it, I suggest you watch it. Its hilarious - not because its supposed to be though. Its basically about 3 desperate people (either desperate to be on TV, desperate for a shag or desperate for a life partner. Or all of the above) who cook dinner for 1 person (this person goes to all 3 people's homes for a dinner date. The cooks try to impress their date in order to be chosen to go to a posh restaurant for the next date where the women all obviously want a husband to fertilise their depleting eggs and the men just want to get their leg over.  
Amidst all the desperation you also have a nice mix of awkward silences, kitchen novices and cringe worthy flirting. Amazing. Even Sami watches it and takes the piss with me. He never watches 'girly' programmes but this one is an exception. 

So, those are my guilty pleasures. As well as shitey magazines with stories like 'I grew a new head and it gave birth.' I also secretly enjoy buying expensive make-up I don't need that won't, despite what it says, give me a new face and eating cheese straight from the packet. On its own. No crackers, bread, nothing. Just a lump of cheese. Oooh and I enjoy cereal for dinner sometimes.

So I'm not sure where I was going with any of this? I've just ended up going off on a bit of a tangent...erm yeah so today I'm going to watch and read shite, avoid McHair if I can and try and refrain from buying Chanel foundation that claims to be a face transplant in a bottle. 

I might just go into a pain killer haze and that way I won't care what's on TV. Maybe I should take painkillers in order to stomach the daytime bile inducing poppycock? Either way we'll all be winners. #winning

Now, where did I leave my tramadol?

TGIF - Thank God (AKA Morgan Freeman) I'm Fabulous

Thursday 27 June - 1am

Here I am at 1am lying in bed with a seriously dodgy stomach. I'm scared to go to sleep in case (God forbid it) I accidentally 'shart'. The shame of it. Can you imagine actually shitting the bed? Ah man, I just want to be normal. 

My new tablets (amitriptyline) have given me the worst constipation ever so I resorted to desperate measures and took a load of laxatives the day before yesterday. Nothing happened. I took some again yesterday and NOTHING. So I just took another load again tonight and now I'm scared. Really scared. I'm scared to move or  laugh. I thought I'd take my mind off it by blogging. I'm not sure you want to read about this but hey, its relative as its about the side effects of my meds - I'm not just some random girl talking about sharting for the hell of it. This is my life right now. This is serious.  Lupus aint fun man.

I've had a rough day today. I've mostly been in bed in a lot of pain feeling extremely weak and totally sorry for myself. Poor, poor me.  The pain hasn't been all over my body, just in my hands but its been intense, like nerve pain. I was crying at one point which is not something I usually do. I finally managed to conjure up a tiny amount of energy to have a bath at about 3pm, got back in my pj's and mixed it up a bit by lying on the sofa in the living room instead of going back to bed (highlight of my day that was) and that's pretty much where I stayed.

I found out Sinead O'connor has fibromaylgia - apparently she gave up working for years because of it. Also, Morgan Freeman has it too. I was like, wow! God has fibromyalgia.  
I don't know why but I always see Morgan Freeman as God. Maybe because he plays God in quite a few movies? I'm not sure. Is that weird? 

Sami's mum had an operation today to correct some previous surgery so I suggested to her husband if she has to stay in overnight we can go to Pizza Express for dinner rather than him be home alone but luckily Viki was allowed home. So hopefully she will recover nice and quickly and be back to her fittest self in no time. 

I had my hair cut yesterday which was a nice treat, courtesy of my lovely Mummy. She treated us both and I must say, I'm rather pleased with the result! Feel like I haven't had decent hair for aaaagges. I also had it coloured the day before courtesy of Sami's mums friend and ex colleague, Janet. She did some lovely hi-lites for me and for a very good discounted rate. I am very pleased indeed.  And here's a nice selfie for y'all...for some reason this light makes my roots look darker than they actually are..

Prior to having my hair cut I went to see my GP to discuss how low I've been feeling recently and she has referred me for some counselling so I should hear back soon. She also explained to me that fibromyalgia can cause a chemical imbalance in the brain thus causing depression (yeah I just used the word 'thus') which I found interesting. She also said that perhaps I should be on an anti-depressant. Like a proper one not the one that I'm on to relax my muscles. I understand her reasoning but I'd much rather try alternatives first as opposed to swallowing even more tablets - who knows what they do to our bodies?? We'll see what happens. It was nice to go and have a chat with someone who took the time to listen to what I had to say. 

I haven't been feeling too bad this week, I feel down with all the pain etc but in a 'normal' way not in a 'Ohmygod what will kill me quickest - jumping out the window or putting my head in the oven?' Kind of way. So I would say its been a good week!

I'm so glad tomorrow is Friday. I know I don't work anymore so everyday should feel like the weekend but Fridays are just great. Everyone's happy. 

This weekend my plans are to go out on Saturday night and the rest of the time I'll be chilling and moaning about my life! I'm seeing my bestie for lunch tomorrow before she heads off on holiday and that's it. I was supposed to go to a charity gig for the meningitis trust at my old school tomorrow but I've been feeling crap all week so decided I should leave it. Its for an old school friend who is in a band (Urban Prophecies) sadly his daughter contracted meningitis and had to have her legs amputated - I'm happy to say that she got through it and is one of the most inspiring and beautiful little girls ever. So as I'm not attending I shall make a donation to the trust anyway.  

Here is a link to their song for the Meningitis Trust....http://www.youtube.com/watch?v=EDc8FahNOM4 

Going to have a girly one on Saturday (hopefully I'll be able to) and head out to a Turkish restaurant. I'm really looking forward to it.  No idea what to wear as the sun has caused me some troublesome symptoms such as a rash all over my legs. If you are not aware, most people with Lupus are sun sensitive. The suns UVA and UVB rays can cause Lupus to flare. People get different symptoms such as skin rashes, dizziness, fatigue, nausea, joint pain and some people's lupus can flare up so bad they can become seriously ill with organ involvement. 

I have never really had any adverse effects from the sun but the past few days I have noticed I feel a lot worse if I've been out for a while. I get home and feel like absolute shit, much worse than when I went out. I feel sick, dizzy, really tired and weak - I couldn't even cook Sami dinner yesterday. I couldn't even open a bottle of water - I was a state! Also, my skin itches like a bitch and my legs are bright red.  I'm going to have to get into the habit of covering up and wearing factor 50. Fun times. Maybe I'll get a sun umbrella and walk around like I'm Joan Collins. 

Right, I'm going to try to sleep now. Wish me luck! Poor Sami. Its him you should feel sorry for - he has to put up with me!

G'night. Xxxx