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

#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......