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

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.

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!

#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?

The Dark Side of Chronic Illness

The Dark Side

(Shit defo been watching too much Starwars! Damn you Sami!)

This is the dark side of living with chronic illness and pain all day every fucking day. Today I am not doing good at all. I can't even be bothered to try and raise a fake smile. I can't be bothered to move any muscle let alone ones that allow you to smile. 

I'm going to write all my feelings down and share them as I know other people with a chronic illness will feel my pain and I want you to know you are not alone.  We can't all be positive all of the time and no amount of positive thinking will 'cure' us. Despite what some fucktards might believe/advocate.

All I've done today is lie in my bed crying. I feel like I'm never going to stop. Sami is trying to cheer me up but unfortunately its not working like it usually does. This makes me feel bad because all Sami wants is for me to be happy but right now I'm not and its no ones fault its just something I'm going through at the moment.

Its Father's Day today and I want to go and see my Dad but I'm in so much pain and I cannot stop this crying. I don't want him to see me like this - Sami agreed. My thumb is agony I can't even lift a cup, it feels like something is going to tear when I move it.  My arms and legs feel heavy, I'm in pain everywhere including parts of my body I didn't know were there and my head is pounding. On top of all that I feel really down and shitty. I'm even having disturbing thoughts - I'm thinking, 'How can I continue to exist like this?' 'Seriously how?' I'm also thinking, 'I can't go on like this'. I can't do it.  I've got enough tablets and alcohol to say good night forever. 

Don't worry - its not something I would actually do but these are the thoughts that are currently going through my head. I feel bad thinking it and I'd never do that to Sami or my family and friends but this is what its like to be in constant pain. You think about ways you can stop hurting and sadly that is one of the ways. Bit extreme but hey, if you haven't experienced pain like I have then you won't get it and if you have I bet you're nodding in agreement. And if you have experienced intense and relentless pain and aren't nodding in agreement please let me know your secret.

Sami said to me earlier, 'Don't worry you're new tablets will kick in soon and hopefully you'll feel better'. Perhaps he is right but the fact is, I've been in constant pain (albeit varying degrees of) every single day since December and before that I had many more bad days than good, I was just lucky to at least have SOME good days. Something that is now a distant memory. These new tablets aren't a cure - they are just supposed to make it easier to live with. So it will still be there.  I said to him most people would struggle if they felt like I did for a week. I've been like this for nearly 3 shit years and I'm only 27 - how many more years have I got to live like this? 30? 40? 50? It doesn't bear thinking about. Maybe there will be a cure in my lifetime but I'm not going to put all my energy into believing that. Especially with the pharmaceutical companies making so much money out of me and others with long term illnesses. Our pain is their gain.

I just want to be me again. The old me. The fun-loving, crazy, hyper, energetic me. The me I like. I hate this me. This me is rubbish.  All I do is whine and complain and sleep. This me is shit and miserable and just wants to lie in bed wallowing in self-pity with greasy hair (yuk). This me doesn't even like socialising. The old me LOVES to socialise and be around people (and have clean hair).  What is happening to me!? Lupus is happening to me. And Fibromyalgia is happening to me that's what's fucking happening to me. Pain and more pain. Its destroying me and right now I'm letting it.

This pain is unbearable. I think I'd rather be stabbed. How am I supposed to cope with this for the rest of my life? How is anyone? I'm living in HELL.  Is it even possible to cope with this for the rest of your life? I've even thought to myself 'Oh why can't Lupus just get on with it and attack my organs and be done with me?' Then I'd die and be pain free. How fucked up is that?

I know, its horrible and I'm sure it makes for uncomfortable reading but I said when I started this blog that it will be an honest and open account of my life with Lupus including the highs and the lows. So here I am. This is me and here are the lows.

I haven't openly expressed these thoughts to anyone. Ever. I don't want to upset people or inflict any more worry. No idea why I find it easier to write it all here for all and sundry to read! I sort of forget people are actually reading this.  It's weird because people that don't know me must feel like they do because I really do tell it like it is - no fluffiness or sugar coating here.
Its like therapy for me because I feel like I write it all down and then those thoughts are out in the world and gone from my head. Does that make sense? Probs not! But that's how I feel. I'm already starting to feel a little better. Well, I've stopped crying for the first time in hours.

I want to blame my new tablets for why I'm feeling so down but I guess I should accept that feeling down comes with the territory of living with a chronic illness (or two).

I just spoke to my Mum to let her know I'm not up to coming to see Dad and she said its fine and to just accept that I'm having a bad day, have it, embrace it and wake up tomorrow in the hope it will be a better day than yesterday. I think that was good advice.

So here I am embracing the shitness. I'm going to eat a whole bar of chocolate and have a glass of red. I'm not supposed to but I don't give a flying shit. Times like these you need a glass of good quality (strong) wine. The only thing is, that involves getting up out of my pit. Ok I'm gonna do it because I'm embracing the shitness.

To anyone reading this feeling the same way, please feel free to send me a message or add me on facebook. I'm a good listener (as well as talker!) Or maybe try out what I've done and put to pen to paper. Its very therapeutic, almost like letting go of your emotions. I genuinely feel a little bit better. No one should feel alone during times like these.

Right where is that chocolate.....

Monday 17th June 2013 

That was yesterday. I ended up eating three big bars of chocolate which is so unlike me. I'm usually quite controlled when it comes to my diet. Oh well when you're depressed it has to be done.

I'm feeling pretty much the same as yesterday.... I've spent most of the morning crying. I'm not even dressed yet and its nearly 2pm. The flat needs hoovering, I've got ironing to do and I can't be bothered to move. I have no motivation whatsoever and I'm in a lot of pain so that's not helping.

I spoke to my Mum and she said its ok to wallow for a few days but only a few days. Weeks and months, No but a few days Yes. She said it wouldn't be normal if I didn't wallow occasionally with the amount I've got to cope with. She said we can't all cope all the time. Right now I'm really not coping. I admit it. I've decided I'm going to call my doctor and ask to be referred for some counselling. I've never had counselling before and it might not be for me but I'm going to give it a go. What have I got to lose? I've already lost my sanity!

So today I am going to allow myself to wallow. I'm going to have a bath, put some clean pj's on and then I'm going to get back in my bed and stay here for the foreseeable.

Is there a light at the end of this tunnel?

Hey everyone,

Well its a been a mixed few days since Wednesday. I spent most of Thursday on the sofa wearing my pj's feeling sorry for myself. Lexie came round in the evening armed with a whole load of chocolate and we sat and ate our way through most of it! I really fancied a glass of red wine but under docs orders I'm not allowed until I've been on this new medication for a couple of weeks so I was a good girl. 

I had a rough nights sleep - y'know the usual, night sweats and nightmares but surprisingly and oddly on Friday I felt fine. Not a lot of pain and I wasn't exhausted. I had a walk down into Beckenham and got myself a new hair dryer (I have the worst luck with these, I think I've had about 5 this year) and in the evening Sami and I went to our friends Matt and Jen's engagement party at a pub over in wimbledon. By the evening I was feeling a bit tired and as Sami didn't want to drive to Wimbledon I wasn't looking forward to the 20 min walk to the station and the hour long train rides to get there but it wasn't too bad. The pub was really nice and they had a bbq so we got some burgers and chatted with everyone there - we know most of them so that was nice. I did have a shandy but nothing else. We left about 10.30 which is so unlike us - we are usually the last ones standing but I didn't wanna be on the trains too late plus I was knackered and people were starting to get drunk which I wasn't feeling so off we went. Woke up Saturday feeling like I had the worst hangover ever! Pounding head, nausea plus aching all over. I thought what the feck? Did I get run over by a combine harvester last night???!! So Saturday was spent lying on the sofa in my pj's. Sami cooked us a nice curry and I was made to watch starwars. Sami is obsessed with getting me to watch It so I've finally agreed (only took him 6yrs). 

This ran me over in my sleep....I'm not sure which is worse this or Starwars?

Today I'm feeling like absolute shit. I am in a lot of pain and I feel really, really low. Another day on the sofa it is then. Well, I'm going to go and see my Dad as its Father's Day and Sami wants to take his Dad and Christine out for dinner so I might go along depending on how I'm feeling. Its days like today that make you think how lucky you are. I've been blessed with a wonderful Dad. He did so much for us growing up and he always had time for us. He'd never say go away I'm busy. He worked hard to provide for us and he'd spoil us when he could.  He is a great Dad. My Mum is amazing too she is such a great role model, she always worked so hard, managed to keep a lovely clean home and never complains. I am very lucky.

That made me go all teary.  I'm feeling so low and I don't really feel like seeing anyone which is unlike me. I want to hide under the covers away from the world. I'm struggling to see the light at the end of the long, dark tunnel at the moment.  I guess I'm not coping as well as I normally do. I think its because the pain has been so bad. Worse than usual and when you're in so much pain its hard to imagine or remember what its like not to be in pain and you feel like its going to last forever. It takes its toll mentally as well as physically.  Someone slap me with a wet fish!!! I need to get out of this frame of mind and sort myself out. I'm  not sure how?!  I think counselling might be necessary now. I'm finding it harder and harder to cope and the more I struggle the more down I feel.  Gosh today is not a good day! Let's hope I wake up in a better frame of mind tomorrow. Jesus I hope so! I've cried far too much already today. 

I shouldn't really complain. I have a friend in Australia who has Lupus and its attacking her brain. 3 areas showed up with inflammation. She is currently being looked after in hospital and she said she might not leave. I told her she can't give up as we need to go to Vegas when she is better so she said she won't. Its awful what this Lupus can do. She's only just turned 30. I hope and pray everyday that she will recover. She's so beautiful and has her whole life ahead of her. Keep strong Lisa!!

So you know I was diagnosed with Fibromyalgia on Monday? Well someone (somewhat controversially) has suggested that Fibromyalgia doesn't actually exist and its Lupus attacking the brain. With fibro the brain sends out pain signals to the muscles, other symptoms include anxiety, depression, memory loss, fatigue, night sweats and aches and pains - these are some of the same symptoms as Lupus. When I was diagnosed I initially thought that Lupus caused me to have fibro because I'm always in pain and it might have scrambled my brain and caused it to go all weird. But then I thought how comes fibro has all the same symptoms as lupus? Is it not just lupus? However, lupus shows up in blood tests but fibro doesn't and people can be diagnosed with just fibro and not Lupus. But this person was saying to me that its a misdiagnosis of Lupus. I said but Lupus would show in tests and this person told me that if Lupus is attacking the brain then it doesn't show up in
tests but would show up in an MRS scan. I find this interesting and will certainly speak with my rheumatologist about this. I'm not saying this person is definitely right but I think its food for thought.

Well I'm going to peel myself out of bed, have a bath and go and see my Daddy. Catch ya laters. X

Chocolate is good but shoes are fat free!

So not feeling positive today. In fact I'm feeling like shit. I'm pissed off, I'm bored, I'm in pain and I'm fed up. This is complete and utter hairy bollocks. 

I can't believe I've got to wake up everyday and cope with some form of pain. Today its pretty much all over. My whole body is aching, I've got shooting pains in my hands and feet and my thigh muscles are spasming. Plus I feel exhausted. The pain is really bad today, it's the sort of pain that makes you say, 'Oooooowwwwww' out loud. So I'm lying in bed, holding back tears and saying 'Owwwwwww!' Every few mins. If anyone could see me they'd think I'm nuts. 

The worst thing is, this pain is coming from my brain. My own brain is making me believe I'm in pain and I can't control it. So frustrating. I just feel so weak. I'm still getting my head around all this fibromyalgia stuff. Wtf? I now have this as well as everything else! I thought it was hard enough without adding this to the mix of shit! 

I've just eaten a family sized bag of maltesers after eating super healthy all week. Oh well sod it. I'm sad and in pain and I'll eat a whole load of chocolate if I want to. Lord knows if anyone needs to comfort eat right now its me. Highlight of my day that is. 

Well the highlight of my day has changed! I am now the proud owner of a pair of Christian Louboutin heels! My lovely friend Becca just called me to say she's at a sample sale and asked if I wanted a pair.  Ermm hell yeah! She's picked me up a pair of black Louboutins at a fraction of the usual price....these are now mine...all mine!

Not that I have money to spend on designer shoes but I'm going to put a whole load of clothes and shoes on ebay to make up for it. I can't wait to collect them and wear them alllll the time! I'm gonna hoover in them, take the rubbish out in them, hell I'm even gonna wear them to bed! I mean, that is where I spend most of my time so I might as well! Aaaaahhhh I have Louboutins!!! Woooo! This has made me smile even more than the huge bag of maltesers I eat earlier.   Chocolate is good but shoes are fat freeeee!

Sami is so sweet he was just telling me about what he learnt about fibromyalgia today and he said he liked my blog post yesterday. He supports me so much. He's always researching things for me, encouraging me to rest and eat well and he always reminds me to take my medication which at the moment is a god send because I have no idea what's going on. The amitriptyline has really effed me up! I feel so spaced out and floaty all the time. You know when you first wake up and you feel a bit hazy? Well I feel like that all day. I am so glad  don't have a job anymore otherwise I'd be screwed. I'm not even sure I should be left on my own at the moment. This is weird. The doc said I should only feel like this for around a week. I hope he's right!

My old boss sent me a nice message today saying that he can't believe I've added a new illness to my list. He said he doesn't know how I cope. A lot of people say that and I never know how to respond because I don't know myself. I guess chocolate and new shoes help! 

Right time for me to take some more amitriptyline or as like to call it - amitrippingout and erm probs just sit on the sofa like a spaced out weirdo. 

This is what my brain is like at the moment....

Let's hope tomorrow is a better day!

'If you were a horse they'd have you put down'

Monday 10th June 2013

I had my long awaited appointment at the Lupus unit at St Thomas' Hospital in London today (where I'm treated for my Lupus).  I was really looking forward to it as I was hoping the professor and I would discuss a new medication regime as I've been so unwell lately and thought my medication must not be working.  Well  it turns out it's not the medication that's wrong.  It's my brain.  Yep my brain is officially dodgy.

I was diagnosed today with Fibromyalgia.  I've long suspected I could have this but have never been formally diagnosed until today.  So I can add that to my ever increasing list of shitey illnesses.  If you are not aware, Fibromyalgia is an illness whereby the brain goes a bit weird and sends out pain signals to your fibrous tissues causing widespread (and sometimes severe pain) all over your body.  Other symptoms include extreme tiredness, IBS, memory problems, dizziness, sleep problems and headaches, all of which I have been experiencing for the past 6 months.  I've put a link below for more information....

http://www.nhs.uk/Conditions/Fibromyalgia/Pages/Symptoms.aspx

So there you have it, I now have Systemic Lupus, Sjogrens Syndrome, APS AND Fibromyalgia.  There is no cure and its a life long thing.  Apparently to reduce the pain you have to reduce stress where possible, pace yourself and learn ways to relax, oh and do exercise (when you're not in severe pain) so I need to figure out how to relax as I'm not really sure I know how...

The doctor has prescribed me with an anti-depressant (a low dose) which has been proven to help your brain stop sending out random pain signals.  So I'm hoping this will provide some relief.  In a way I'm glad as at least all the pain etc isn't being caused by really active Lupus as when Lupus is active it can be dangerous and even fatal in that it can start attacking your organs so at least with this fibromyalgia business it doesn't cause any actual damage, it's just a bastard to live with.  So although it's shit to be diagnosed with an additional illness on top of everything else its good to know so that I can manage it, learn to deal with it and hopefully get it under control and kick it's fucking arse into oblivion .

Living with daily pain is hard work, its mentally challenging as well as physically because you got to try and keep your shit together otherwise you will just fall apart and its not nice for those around you to see.  I really hope I don't go down the depression route because its so easy when you live with chronic illness but somehow I've managed to keep my head above water so I just hope and pray I stay that way.

I dread the day I have a lupus flare up and a fibro flare up! Look at me already nicknaming it 'Fibro' it's like we go way back.  I think I need to give it a new name like fuckromyalgia or something.  It doesn't deserve a nice nickname.

As my charming Dad once put it 'If you were a horse darling, they'd have you put down.'  Gotta love him.

My mum came with me to the appointment today which was nice then we went to a couple of shops and she bought me a couple of nice tops and nice new dress so that cheered me up.  I got a new dress to wear on Friday (Sami's uni mate Matt and his fiance Jen are having an engagement party) so I'm looking forward to that.  Its nice having something to celebrate.  The only  thing I'm worried about is when I meet new people and get asked 'So what do you do for a living?'  I mean how am I supposed to reply to that? No one wants to hear well actually I spend most of my time crying in bed with severe pain from Lupus, Sjogrens and Fibromyalgia and my brain doesn't work! LOL! So I said to Sami I need to come up with something really obscure.  I think one suggestion was to say I'm a proctologist (thats an arse doctor to you and me) so if any of you have any better suggestions please let me know! I might say I'm a neurosurgeon. Although I don't think anyone would believe me with my ditzy personality!  So that's something I need to think about.

Right I'm going to go and have a bath and attempt this relaxation business....hopefully with my new tablets I'll be able to get a decent nights sleep and not wake up like a zombie.