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

Meh. Just Meh.

Thursday 21st November 2013

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

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

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

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

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

I suppose today wasn't a completely shite day.

Sunday 24th November

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

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

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

Monday 25th November

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

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

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

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

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

Na-nights Xxx

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 

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

Fuckyoumyalgia

Monday 10th June - evening 

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

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

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

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

Tuesday 11 June 2013

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

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

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

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

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

Right time for lunch. 

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

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

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

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

Saw this and made me laugh...

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

'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.