When I Lost You… I Found Me

On your 6 year anniversary in Paris, 5 months before your wedding day and 6 days before your surgery, is pretty much the worst time to find out that your Fiancé has been living a double life and you alone are not enough.

I’m not going to go into details of what he did to me, not because I’m protecting him or because he deserves it, but because I have more respect for myself than that. So let’s just say that I am a new fully fledged single lady, ready for the next chapter of my life.

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It was confirmed last Friday that I do have Endometriosis as expected, but my consultant was pleased to announced it had only spread to my bladder which he has removed (…no not my bladder the Endometrial tissue, calm down!!) According to my consultant I should be very happy and reassured that they have caught it early enough so it won’t affect my fertility. Sharing this news alone was obviously a kick in the teeth when things were still so raw, but if I am being completely honest,  had I have stayed in my long-term relationship, I would have ended up having children much earlier than I would have wanted. I’m only 24 years old and I haven’t seen the world yet! There are so many places I want to see, things I want to do and experiences I want to have and now I can. It’s like I’ve been given a new lease of life! I don’t have to answer to anyone and I can be as selfish as I want to be. Isn’t that what your 20s is all about?

I have been tied down since I was 18 years old and I have no idea who I am anymore. When you’ve been in a long-term relationship its easy to slip into the same routine, day in day out, ‘you’ soon becomes ‘we’ until you stop doing what you want to do for yourself and start compromising. Since when did we start accepting that it was okay to put our ambitions and dreams on hold for another person?

I have felt the healthiest I have been in years during these last 2 weeks. I can’t explain it, I just feel different. Considering the dramatic turn of life events, I had fully expected my Lupus to flare but it hasn’t and I feel great! It’s almost like a weight has been lifted and I can breathe again. I got stuck in such a bad cycle of being made to feel like I was too unwell to look after myself, but this time alone has shown me that I am more than capable and I will never let myself depend on another person unnecessarily again! I have been SO proud of myself these last two weeks, getting a flight home from Paris alone, early hours of the morning with no ticket or sense of direction… but I did it! I am so much stronger than I ever gave myself enough credit for and I’m really excited for what comes next with my new found independence and resilience.

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Until recently I never thought I had taken my friends or family for granted, but to see how much support and love I’ve been surrounded by has given me the wake up call I needed. I haven’t spent a single day alone, the kindness and care has been overwhelming. You don’t realise how many people love you until something like this happens and I vow to myself to prioritise my friends and family so much more in the future, because YOU are the people that make me happy and make me feel good about myself.

I’ve laughed more this week than I can remember having done so in years and I mean proper belly laughing. I feel changed and I like this new me much more than the old me. Carefree, fun, adventurous, passionate and independent. Now I look forward to discovering who I am and I am learning more about myself with every passing day. I LOVE the fact that my plans only go as far as my next night out. I have absolutely no idea what I’m doing, where I’m going or who with but what I do know is that there are far better things ahead than any we leave behind.

I might have lost  what I thought was a friend, my home, my belongings and routine, but what I found was MY life and I will be damned if I don’t start living and breathing it!

Stay tuned… I’m sure there will be many laugh out loud moments to come as a new singleton….xoxox










I Must Have Been A Sinner In My Past Life

If Pokemon were medical conditions I would have captured them all… or so it seems. Yes, even those ‘rare’ captures belong to me.

I have Lupus, Interstitial Cystitis, Fibromyalgia, Chronic Fatigue, Joint Hypermobility Syndrome, Bulging Discs, Sciatica,  Hip Impingement with Labral Tears, a Hiatus Hernia, I’m a Thalassaemia Carrier and I am also Anaemic. My circumstances are both genetic and environmental. Forrest Gump was right when he said ‘life is like a box of chocolates, you never know what one you gunna get!’ Because Endometriosis is a whole new chocolate they’re hoping to find in my selection box. I think it’s about time I complained to the manufactures because I ain’t enjoying the bitter chocolates I’ve selected so far…

8 hours ago I was sitting opposite my Gynaecologist who told me he’s almost certain I have Endometriosis. He told me he will perform surgery in 4 weeks time to put the diagnosis on paper and try to tackle what’s going on inside the ‘Chronicles of Nadia.’ I will be having an Laparoscopy to start with, placing a camera through my belly button into my tummy, where 2 incisions will be made on my bikini line so that they can get through to destroy or remove any endometriotic tissue. Because I like to be different, they will also be going through my urethra to see it there is tissue growing on my bladder as they believe it’s likely due to my symptoms. They may consider looking at my bowel if they see fit. All of this will be performed under a general anaesthetic… a not so fun induced loss of consciousness, but hey what did I expect, I gave up alcohol remember, duhhhh! I get my kicks from drips and morphine now.

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I couldn’t help but wonder as I was laying there being examined (with zero dignity and zero cares), is there any link between Lupus and Endometriosis? Well…

Research from the National Institute of Child Health and Human Development (NICHHD) of the National Institutes of Health (NIH) revealed that endometriosis patients are at increased risk to suffering from Lupus chronic fatigue syndrome, multiple sclerosis, underactive thyroid, and rheumatoid arthritis, compared to healthy women.

So I guess it’s more of a ‘What came first, the chicken or the egg?’ kinda question. I feel really sorry for the naive 15 year old girl that knew no better than to accept the negligent care at her old GP practice. Being put on the pill DID NOT treat the problem, it’s just hidden it for all these years until my body screamed no more!!!

My Gynaecologist asked me if I wanted to have children, something that I’ve already been concerned about since my Lupus Consultant informed me that I couldn’t try and get pregnant until I was in remission due to the risks involved. I know that Lupus may some what pose obstacles to pregnancy. I know that years ago Lupus patients were strongly advised against it. Now that they are looking into Endometriosis I understand that this may decrease my chances some what more. I genuinely explained to my Gynaecologist that I would have to be at least 30 years old before I considered having a baby regardless of my health conditions.

For those of you who know me, it won’t come as a shock to you that I’m not the most maternal. Maybe that’s just my age or maybe that’s just me. I know that everyone is different, everyone has different views on life, different hopes and different dreams. But I won’t apologise for wanting to live my life before having a lifelong commitment and responsibility. I’ve had to give up my late teens and early 20s to Lupus and other health related issues. I feel like I deserve to live my life and see the world before I live it for someone else.

I’ve spent the last 10 years in and out of hospital, for procedures, operations, scans, blood tests, treatments so…


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I’m just saying that for ONCE let’s prioritise the actual patients well being before focusing on future individuals!!! Let’s investigate what is wrong with ME and let’s try and fix it best we can, until cures are found.

I have to be open minded, he could come back after surgery and tell me he got it wrong, ‘leading Gynaecologist in Europe’ or not. The body is a complex thing and so is the autoimmune disease Lupus I am dealing with.

All I know is that not everything happens for a reason, sometimes we just get unlucky and the cards we are dealt seem unfair. But that’s just life unfortunately. We just have to dust ourselves off and pick ourselves up. We have to enjoy our life to the fullest way we can, with those we love.

I will keep you updated on my journey xoxoxox

Please see picture below for Endometriosis symptoms ….

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JUST JOKING… please follow the link: Endometriosis





Waking Up Without a Hangover…

I didn’t know what my New Year’s Resolution was going to be, until I was laying in a hospital trolly early hours of New Years Day.

I had four drinks in total. Three very small vodkas (carefully measured, because of the Slimming World Syn value) and one double that Mum poured me, after losing her sensibility to booze!

Throughout the evening I was getting significant heart and lung pain. I kept experiencing episodes similar to a heart attack and the tip of my right shoulder was agony. BUT it was NYE. I wanted to have fun with my friends and let my hair down. At 24 years old, I felt very deserving of a night out, so I did what I always do, push on.

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My first call of 2018 was to 999

I knew I pushed myself too far when I couldn’t even tell the ambulance crew my name or date of birth. It felt like I was having a stroke.

“Is this what fun looks like?” I remember thinking as various doctors started to prod and poke me. My stomach was churning and it took all my will power not to spew all over them!

Something had to change…

I have since learnt that mixing alcohol and Lupus medications can be fatal, so excuse me if I seem like a bore, but I value my own life way more than I value your drink.

Alcohol-medication interactions are SERIOUS. I was being naive to think that prescriptions labels which state ‘avoid alcohol’ really means ‘moderate intake’ because it doesn’t. There are no blurred lines.

A number of the strong pills I have been prescribed are metabolised in my liver, which means I absolutely should not be drinking at all. Prolonged alcohol-medication interaction causes cirrhosis (liver scarring and failure) and if I continued to drink, I would be risking my life.

Over the last couple of years, consultants have been adding new medications to the mix and I have rolled my eyes at the ‘avoid alcohol sign’ and said ‘yeah so what, I can take it!’ But the truth is, I no longer can.

I know there are those people who will judge me or think I’m being a bore, but honestly I don’t care. I don’t need a alcohol to make me feel less insecure because I am comfortable in my own skin.

There are people out there who think that they can’t have a good time on a night out without alcohol and I feel sorry for those people.

I don’t embarrass easy and I make a tit of myself daily. I love laughing and love making people laugh, so the idea of being able to remember and reminisce about what you were laughing about the night before, was appealing to me.

For my Fiancé’s 25th birthday, I had my first night out with friends since turning 18, without touching a single drop of booze and I had THE BEST night! I could really engage in the moment, I remembered everything that happened and I woke up fresh as a daisy the following morning, ready to enjoy my Sunday. Because I was sober, I knew when to take rest breaks in the night which allowed symptoms to pass and not result to A&E. I was super proud of myself.

This year I have my hen dos, wedding  and honeymoon coming up and I intend to remember and cherish every moment. If that means that I have to abstain from alcohol to prevent hospital admission, then so be it. It’s actually got to the point where I don’t enjoy it at all anymore, because I associate it with pain, illness and lack of control.

“What so you won’t even have one drink???!!!!!….” I hear you say…

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Shock horror I will actually have to socialise with people at these big events, without being under the influence!

Please please, don’t feel sorry for me. If I choose to respect my body and health more than poisoning it, then that is my choice to make.

For anyone reading this in the same position as me, battling chronic autoimmune diseases and illness, just remember… you can still enjoy yourself on a night out with a yummy “mocktail” and good friends! The people who really care about your well-being will understand, so do what you have to do and be proud of making that life choice.


Sober 33 days and counting…

Good-Bye 2017. Hello 2018!

This will be my year. How very Bridget Jones of me.

Forgive me for my optimism but actually I think I’ve earned it. This year my health plummeted, I hit an all time low. Four months ago I couldn’t even formulate a sentence when my friend came round for a cuppa tea, my Lupus and Fibromyalgia decided to set up camp in my head and the burn from their sing song round the camp fire, was more than I could bear. I was signed off work for two months and I have to admit, I think I lost myself a bit.

Thankfully though, four months on, I have retuned to Physiotherapy and I’m planning our 2018 wedding. Yes, the Christmas hustle and bustle has kind of overtaken any recent planning, but the point is, four months ago I wasn’t sure I was going to  be able to book a honeymoon, let alone attend my own wedding!

This year has seen some incredible highs, as well as dramatic lows. So as I write my last page of 2017, I thought I would share some of those moments with you as I take a big leap into 2018 and firmly close that 2017 door…


10th of February Following my mum getting the all clear from Cancer we decided it was time to focus on the future and add a new addition to the family! With a visit to the RSCPA we came back with a stray street dog, all the way from Portugal! What the RSPCA failed to tell us, was what her breed was and so we landed ourselves with a …’Podenco!’ If anyone knows what they are, you will surely be laughing at us, because these are NOT a domesticated breed or lap dog of any kind. It wouldn’t be abnormal to find them sitting on the dining room table, thinking they are the Alpha whilst us humans are their pack! Cady’s presence has brought a lot of laughter to my dark days and I couldn’t imagine my life without her now.

28th of FebruaryI was finally diagnosed with severe Lupus at the London Lupus Clinic. After being told my by old appalling GP surgery (for four years) that I was making up an illness in my head! I remember crying when my Professor broke the news to me, because it was a relief to hear that I wasn’t going insane and someone could put a  ‘name to an ugly face!’ 

27th of June – My birthday! We went to London for my follow up appointment (what a way to celebrate!!) My Professor told me the medication I was on was not controlling my Lupus and so he started me on hard core drugs. From then on it felt like I developed any illness known to mankind that I came into close contact with. My immunosuppressant drugs were hitting me full pelt. Thank god the Black Plague wasn’t going round, otherwise I wouldn’t be here to tell the tale…

15th of August – My health took a turn for the worst. My Professor told me that I had severe Fibromyalgia as well as Lupus (which is typically found in 20% of Lupus patients).  I remember thinking, this can’t get any worse. During my two months off work they tested me for Neurolupus and Multiple Sclerosis via a PET Scan. They determined that I was in a massive flare up and predicted that the next 6 months would be hard for me.

27th of October We handed in our notice of marriage! I gave Dave the last chance to escape a lifetime of marriage with me and thankfully, despite all the cr*p he has put up with this year, he still wanted to go ahead with making me his wife. Making me the happiest girl alive. Dave has been my rock through the most draining and challenging year of my life and I don’t think I would have made it to the end of 2017 without him.

5 things I’ve learnt this year…

  • How to say NO for my bodies sake and to stop pushing myself too far
  • Who I can rely on to be there for me when I need them most 
  • How much planning, time and work goes into writing a book!
  • How much I love my colleagues. They are amazing and I wouldn’t swap for the world
  • You cannot control or predict the course of your illness. You just have to go with it and hope for the best!

4 things I’m proud of this year…

  • For never giving up
  • Losing half a stone (despite steroid weight challenges)
  • My blog! – I can’t believe over 7,200 people have viewed my page!
  • My partner Dave – I don’t care how mushy this sounds, he is my WORLD. Day in day out of 2017, whatever has come our way, it’s him who has got me through it all, grounded me and willed me to carry on. I can’t wait to be your wife. Thank you for being you.

5 goals of 2018… 

  • Attempt to finish a first draft of my book or finish a significant portion
  • Go to the gym regularly, to get fitter and stronger, for both my health and my wedding!
  • To grow, to be kinder and wiser
  • To stop stressing or worrying about the little things – it’s only a wedding seating plan it’s not life or death!!
  • To live – to stop fearing my condition and not let it hold me back


This year has truly given me a lot to reflect on. It’s been an emotional rollercoaster and to be quite honest, I’m glad we’re arriving at the new destination of 2018! I will start and end the year with a different surname, how crazy is that!!! I have SO much to look forward to in 2018 and that makes me very excited! Thank you to everyone who has made my 2017. To old and new friends!

I hope you all have a very Happy and Healthy New Year! Now hurry up and put on your party shoes …before the booze sells out in Tesco! Have a magical night! xxxxxxx





“The best way to spread Christmas Cheer, is singing loud for all to hear!”

Resisting the urge to answer the office phone with ‘Buddy the elf, what’s your favourite colour?’… is extremely hard right now! Especially as we’ve just hit December 1st.


That means that all you Grinch’s can stop rolling your eyes, because I am officially allowed to be excited and you are officially expected to stop being so bloody grumpy.

I have my Mother to thank for the Christmas fanatic that I am, and yes, while I understanding it can be mildly irritating for others at times (who spot my Christmas socks being worn in October)… I do have my reasons for cherishing and celebrating this time of year so ‘outrageously.’

To me, Christmas is so much more than presents or food. It’s a time to reflect on every challenge and obstacle I have overcome this year. It’s a time to recognise that no matter what new diagnosis they throw at me, it will not define or control me. It’s a time to be grateful and thankful for all the loved ones, who have stood by me in the face of fear and the unknown this year. It’s a time to notice that however consuming your problems may be, there will always be others less fortunate than you.

For those of us who have spent 95% of the year being unwell, or being finically unstable, for those of us who has lost people that we love, for those of us who have not been able to engage in everyday thrills that others take for granted… Christmas is for us! Christmas is inclusive, no matter how rich or poor, healthy or unwell you are. Christmas allows us all to engage in the festive magic and to be surrounded by the people we love, to escape our everyday life stresses. Christmas is a time to laugh at Dad for impersonating Elf, going up the escalators in the shopping mall. Christmas is a time for Grandma to ask if it’s okay to give you meat gravy (‘because it’s only a few spoonful’s’)… even though you are vegetarian!

Of course Christmas is also an amazing time, because almost everything is covered in sparkle and glitter (being the magpie that I am!)


I know I’m a sucker for goodwill gestures and sharing festive cheer, but wouldn’t the world be a much happier and kinder place to live in, if everyday was like Christmas?! This time of year is a distraction from all the pain endured daily. It’s filled with anticipation and expectation for a healthier and happier new year.

As the year draws to a close and you come together with your loved ones, ask yourself…could you have got through it, without those sitting opposite you? Because I know I couldn’t have. So forgive me, if I enjoy spoiling people with gifts and writing sentimental cards. Forgive me, if my reindeer antlers hit you in the face or I turn my home into Santa’s grotto, because this year…has been a truly emotional one for me and I’ve decided that it is OKAY for me to let my hair down and enjoy myself (even if that means I go bloody crazy with the festive activities!)


Anyway I must be getting off because my schedule is looking pretty hectic tomorrow…


I bet you wish you knew what I had planned for Sunday haha!…

Enjoy the festive season boys and girls! xxxx

What Do You Mean It’s Spread To My Brain?

Thank God for modern technology… because who knows what language I would be writing in, if I was left to my own devices of using the keyboard and my uncontrollable shaky hands. Although every cloud has a silver lining though right? It’s so much quicker to blog using a microphone as opposed to typing. To be honest, I was getting pretty fed up with the use of auto predictive text anyway and having to correct/explain why I’m in ‘ducking hell.’

As a blogger I feel it’s important to be open and honest with your audience as much as possible, but I also feel it is equally as important not to cause any unnecessary panic or worry for my loved ones , which is why I have not opened up until now about the progression of my condition.

As a Psychology graduate the brain and illness has always been an interest of mine but never did I think my own brain would be under the limelight. Placed under scrutiny and analysis. How very wrong was I … it all started with…

‘Dave WAKE UP! I think I’ve just had a seizure in my sleep…have I wet the bed?!’ …

-About a month and a half ago-

I was sat opposite my Rheumatologist feeling like a ghost of my former self. I explained a number of multiple new and worsening symptoms I was experiencing such as restless legs, fatigue, vision problems, numbness and tingling, muscle spasms, mobility problems, coordination problems, tremor, widespread pain over the body with ice and burning sensations, problems with thinking, learning and planning, depression and anxiety, bladder problems, bowel problems, speech and swallowing difficulties, crawling over skin/pulsing sensation over legs, migraines and headaches, heat sensitivity, hallucinations, freezing cold/wet leg sensations and tight chest. My Rheumatologist told me that he was going to immediately refer me to a Neurologist and told me that I would need a brain and spinal scan within the next two weeks.

As I had recently been diagnosed with Fibromyalgia as well as Lupus I knew my body was under a lot of stress, but I didn’t realise quite how much stress until I met with my Neurologist to discuss my results.

– 5 days ago –

My Neurologist informed me that we have to do further neurological tests including a SPECT scan of my brain and Evoked Potentials of my visuals, upper and lower limbs. The SPECT scan I am told, will look at bloodflow to my brain and identify any abnormalities, whilst Evoked Potential tests will include using electrical impulses to cause shocks to my body, to see how long it takes to reach my brain. I asked him what he was testing for and that’s when he said…

‘I’m sorry, but I’m almost certain you have Neuro Lupus, it means your lupus has spread to your brain and central nervous system and I believe that can account for all of your symptoms.’

‘But I’m getting married in 10 months , we’re about to book a honeymoon, what should we do?!’ I replied, trying to steady my voice. ‘Well’ he said…’I would hold off on booking your honeymoon just for now, but in 2 months time we’ll know exactly what we’re dealing with.’

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My Neurologist advised me to research ‘Neuro Lupus’ so that I would be aware of what that to expect. After I read the first 3 lines ‘…Migraines, seizures, strokes, psychotic illness, inflammation of the spinal cord or brain’s blood vessels, paralysis, coma…’ I stopped reading and contemplated on how on earth he thought this was helpful?

Humour me … but can’t help but feel frustrated at the timing of this all …if only this happened a few years ago when I was doing my Psychology dissertation I could have used myself as a psychology subject! Pretty sure I would have got a 1st for originality ay?! However, life as I have learnt is never convenient. 10 months before my wedding is when my body decides to start shutting down. You can only imagine the immense pressure that puts on both myself and my fiancé. Particularly when suppliers are demanding on decisions to be made and I can’t even decide on how safest to make a cuppa tea without dropping the kettle, singeing my skin and giving our kitchen floor a new makeover! Jeez and to think just a couple of months ago, being on steroids and fitting in to my wedding dress was the main concern of my worries!


Thankfully we have a great support network around us which really helps. In fact I’ve been really overwhelmed with the support of some very special family, friends and colleagues. I’m so grateful to those people around me who have kept me grounded, whilst I am literally losing my mind!

Unfortunately now it seems we play a waiting game, waiting for these next tests and waiting for more results. I fear the more that time goes on, the more of myself I lose to Lupus. It truly is a continual battle, but I feel lucky to have a strong army by my side!

Thanks for reading all, I will keep you posted, Much love xoxoxox


For more info on Neuro Lupus and CNS involvement: http://www.lupusuk.org.uk/medical/gp-guide/clinical-aspects-of-lupus/cns-involvement/


















The Price To Pay To Be Normal For A Night…

Please excuse me from my recent absence in the world of blogging. For the past couple of weeks I’ve been battling my biggest Lupus flare to date and Jesus has knocked me for 6! I’ve been really really struggling to catch my breath.

Ever since I stuck two middle fingers up to Lupus and let my hair down at oldest friends engagement party, my body’s been irritatingly reminding that it’s Lupus infested and there are severe consequences for those who try to disobey their cruel ruler, by behaving as they once would, before the L word came into their lives.

So here it is, the price to pay for being normal for a night…

A few months ago I decided to see if the odds were in my favour, by putting booze and pills to the test at my first works do (sensible I know!) After excitedly explaining to everyone that despite my pill boxes clearly stating absolutely NO ALCOHOL I was feeling just fineeeeee on my fourth glass of Prosecco… in just a couple of hours I was paralytic and my Fiancé was called for a lift home at 8.30pm. I can’t remember the last time I had felt so bad from alcohol and it’s fair to say it almost put me off for life. Not quite, but almost…

Fast forward to 2 weeks ago when I was getting dolled up in my black bodycon to celebrate my friends engagement party, my misbehaving inner child said ‘look you’re 23 years old, if you can’t have a couple of glasses of wine and have a dance with your friends what can you do?!?’ That…is where it all went wrong.


I consumed half a bottle of Rose before we set off with our friends and I must have already been tipsy because I paid for a taxi for 3 of us whilst my Fiancé and our friend drove behind us sober with 3 spare seats!!! I felt like an idiot but I didn’t care because I felt good and I was ready to dance! After throwing some mad shapes, beautifully screaming little mix lyrics and shaking my hips to the macarana. We too18839081_10154381457416386_770649705988365159_nk a vote and decided to walk home instead of getting a taxi, which of course I said yes to because those two extra glasses of wine from the bar made me forget I even had a chronic illness! It felt so good just to behave like a normal girl in her 20s and to have a drunken laugh with my friends on the way home!

The following week I thought I had the flu. My body was in crippling pain and I’d never known chronic fatigue like it. I could feel myself falling asleep in my hand at work and trying to find the energy just to walk to the bus stop resulted in uncontrollably tears. I felt like I’d done 12 rounds with Mike Tyson and then been hit by a bus. Little did I know it was going to get a whole lot worse…

Lung inflammation is a problem I’ve been enduring with Lupus since day one but over the last 2 weeks, my lung inflammation level has been way off the scale! I’m talking about fluid filling my lungs when I breathe in, making me choke and when I lay down it feels like my lungs have completely collapsed. I just can’t seem to get any air in, making me feel extremely nauseous and light headed! Last Monday I couldn’t even walk a couple of steps or hold down a conversation, because I was just so breathless. By Tuesday I was having agonising rapid heart palpitations and it felt like my rib cage was crushing against my lungs (I was so sure they were going to burst!) By Wednesday my Lupus Consultant whacked my steroids up to my highest dose yet and booked me in for an emergency hospital appointment for this weekend. I’ve been told that I will need some lung functioning tests but whether they will happen this weekend who knows? It truly feels like I’m hanging on by a thread and right now I’m getting increasingly worried that thread is about to snap!!

It is extremely frustrating trying to slow down in a world that’s constantly speeding up!  Deep down I know that my body needs rest, but I have two jobs to manage and 7 hospital appointments to attend in the next two weeks (all for different problem areas of my body!!) I feel like I’m being dragged from pillar to post all over county and the unreliability of public transport just makes things sooooo much more stressful! I spent 4 hours in total on a bus yesterday, just getting to and from one appointment (no I’m not joking!!)

Right now I reallyyyyy need a TIMEOUT! But can I have one?!… No! Because the world keeps on turning. The world doesn’t stop for the chronically ill! Here’s to hoping that I don’t  shut down by the time I do my next blog! Anyone feel free to kidnap me and take me to sunny destination far far away… preferably with good hospital access!

Much love







I Rattle When I Walk…

I’m pretty sure alone, I keep my local pharmacy in business. Think I’m exaggerating?… Look at the picture below. This is just an example of me picking up my monthly meds, in fact, some of these supplies don’t even last a month.


23 is the daily number of tablets I take and yet, I’m sitting here with a leaflet about a new drug ‘Azathioprine’ and ice packs on my swollen joints that are preventing me from walking today. Azathioprine I’m told is an alternative to the chemotherapy drug Methotrexate, which my consultant is reluctant to put me, due to the fact  that if I accidentally became pregnant… I would have no choice but to terminate the baby. However, scary thing is, my blood count might mean I have no choice but to start taking methotrexate. On the bright side, I know I’m no where near ready to be popping out a family anytime soon, so we won’t need to cross that bridge for a while (I mean, we’ve not even made it down the aisle yet… jeez hold your horses!)

At my recent Lupus consultation the nurse made a joke that my blood test request form was more like a shopping list, due to 10-15 items being ticked out of a possible 20! After taking the first 10 tubes of blood from me, with the nurse chuckling “only 1 more litre of blood to go”… I couldn’t help myself think, thank god my other half doesn’t have Lupus, he would have been passed out on the floor by now! Trying to convince him just to have 2 jabs for Mexico and an annual flu vaccination was a seemingly impossible task… (he had to have a lie down for a good 15 minutes between injections before we could continue and he almost broke my hand in the process from squeezing it too hard!)

Due to the amount of medications you are on, it is important when you have Lupus to have regular blood tests to check these medications aren’t detrimental to you in anyway and to also monitor your organs functioning levels. These blood tests could be as regular as every 2 weeks for the first 3 months, so if you’ve got a phobia of needles it’s time to contact a hypnotist now!!!


At a Support Group for Young People with Lupus, I recently attended in London, I also found out that due to our Lupus and being on a concoction of pills, we should NEVER have any live vaccinations! I actually remembering arguing with my old GP  about this who insisted I have one done and I got extremely ill as a result (grrrrrrr!). So if you have Lupus and you’re travelling to any exotic destinations which require jabs, make sure speak to your Lupus consultant, rheumatologist or Lupus nurse about this, because chances our your General Practitioner and local nurse won’t have a clue and will give you false information! Always make sure you ask your specialist to write a letter to your GP  explaining what jabs you can and can’t have, with a list of medications you are currently on. In high risk countries you may be required to stop your medications for a few months before just to have the required vaccination.

One of the most difficult things about taking a large quantity of pills on a daily basis with Lupus, is that many people get ‘brain fog.’ Brain fog is where you start acting like you have Alzheimer’s because you can’t remember what you’re doing or what you’ve just done. On numerous occasions I’ve turned to my partner and said “What date is that event again?” he’s replied and then two seconds later…. “What date is that event again?” I have completely forgotten that I’d just asked that exact same question and quite often my partner tells me I have an attention span of a goldfish! I’m pretty sure he feels like he’s living with ‘Dory’ from Finding Nemo half the time and although that sounds amusing I can assure you it’s not when you can’t remember whether you’ve just taken your pills or not! giphy

I’ve lost count on the number of times I’ve had to call NHS 111 to explain that I think I’ve taken an unintentional overdose because I can’t remember what pills I’ve taken… interesting conversation to have as you can imagine!!! Despite numerous people telling I would benefit from a weekly pill pot, I am yet to find one big enough for people with Lupus!

Although it might be really daunting staring at the numerous pill bottles on your shelves and wondering how on earth you don’t rattle when you walk… it’s good to know that although Lupus is a really rare condition without a cure, we do have numerous ‘options’ when it comes to finding a suitable medications to manage your condition. It’s just a case of trail and error! It is important however to remember that medications such as Hydroxychloroquine can take up to 6 months to get into your system. So hang in there!

It’s also worth noting that although you didn’t hear this from me… from my experience, being on a significant number of medications means your nights out cost significantly less, because you are pretty much wasted from the first ‘Cosmopolitan or Sex on The Beach’ you indulge in! Enjoy! xoxoxx


The Wolf in Me… Hear us Howl on World Lupus Day.

What kind of Lupus blogger would I be if I didn’t do a blog about World Lupus Day?!… Exactly! So here’s my two pennies worth…


Did you know that the word “Lupus” is the Latin word for “Wolf?” Back in the 1200s the term Lupus was coined by physician Rogerius who used it to describe the erosive facial lesions. One theory says that the Lupus facial rash resembles the bite marks of a wolf attack, whilst the other theory argues that the frightening facial marks which emerge with Lupus, were similar to the distinctive marks on the wolves faces themselves! Personally, I’m not sure which version we are supposed to find more appealing? We either look like Wolves ourselves or we look like we’ve been attacked by Wolves? Hmmmm…

How about a new theory all together in aid of World Lupus Day?….

I believe that the word “Lupus” meaning “Wolf”,  connotes the Spiritual animal of those of us diagnosed. Think I’m going crazy? How many of you with Lupus has ever felt like a ‘lone wolf?’ Utterly alone with your disease, with no chance of gaining relational support from anyone within the same postcode area as you. “Lone wolves” must learn to fend for themselves, without any help from affiliating social groups, ultimately demanding that they must become stronger to survive. Sound familiar? After your diagnosis, you’re sent off into the unknown with a long prescription of multiple drugs that may or may not work and told not to Google “Lupus” because it will scare you shitless. After comprehending that your extremely rare condition means that your immune system is trying to destroy your vital organs, joints and tissues, you’re left with no one to turn to but the man in the moon (which you WILL do because of the insomnia that comes with Lupus…howlllllll!)

However wolves are also extremely strong by nature and as Lupus suffers, this resonates with us too. We spend everyday of our lives fighting a seemingly impossible fight, but we never give up! We become more resilient in the face of all our problems and continue to show strength and determination to fight for a cure we are yet to receive. We to have a wild thirst and deep desire for freedom from this curse.

Wolves have powerful instincts too and can sense when they are being misguided by someone they do not trust. We are prompted by our warning signals deep within that tell us we should trust our own intuition instead of relying on other medical professionals who seemingly keep missing ALL the warning signs of Lupus, leading us to an average of 7.5 years to get diagnosis… that’s crazy!  Thankfully my instincts proved better than the 10 GPS and specialised Rheumatologist I saw, who all tried to convince me I didn’t have Lupus! If that’s not good instincts that I don’t know what is?! And I didn’t even need a medical degree to conclude that diagnosis!! NEVER let a GP deter you away from your own instincts, you know your body better than they do.

We are also similar to wolves in our loyalty toward any other Lupus sufferer we come across. Whether we’ve reached out to people online or met them in a support group, we our all bound by Lupus and share an unspoken bond that unites us in our fears and troubles. We understand each other in a way that our families and friends cannot and we can share our experiences with one an other.


So today on World Lupus Day we will stand strong together and howl for justice for this cruel, disabling disease we are faced with! You will not own us Lupus, we will own YOU!

In Sickness and In Health?

Okay, so you have Lupus. Now you want to know how you manage to maintain a healthy relationship with your loved one, when you can barely manage to maintain a healthy relationship with yourself? Research findings have suggest that the divorce rate among those who are suffering with a chronic illness is a staggering 75%!!! As if losing yourself to an chronic disease isn’t bad enough, statistics are suggesting you’re also likely to lose your partner as well?!

Being engaged and having a personal experience of suffering from Lupus myself, I can completely understand these statistics and let me tell you why.

Chronic illness will shift the balance of a relationship… expectations of your partner may increase due to your inability to carry on doing tasks you usually engaged in such as household duties and your own self care. After a while you will start to feel more like a ‘patient’ whilst your partner resigns to becoming a ‘carer’ (minus the benefits of a wage…plus having to deal with a more vocal and honest patient than most!!) The more duties your partner has to take on, the greater the imbalance.

Suffering with a chronic illness myself and having a list of extensive daily demands of my partner, it’s easy for me to understand why people have fears of installing anger and resentment in their partners. Honeyyyyy, I know you’ve just worked 9-5 but please can you do the food shopping, cook me dinner, clean the house, get my pills, empty the bins and shower me?!… And no, those of you with dirty minds I don’t mean shower me in a fun or rewarding way ;)… I mean I can’t move my wrists or body to wash my hair kind of way… (we’ll get back to the fun a little bit later…) Is there any wonder why you cause them to snap or be irritable with you?


One of the things I’ve learnt living with Lupus and being in a relationship, is that you have to be completely comfortable with having no dignity. There’s no room for being self conscious when your 24 year old partner is going to be seeing you exposed in the shower on a daily basis, hairy legs and all!  When your need for help with self care increases…. your self-esteem and confidence decreases. If I could ask my partner to help me with my make-up in the mornings I would, but as camp as he can be at times, he’s not a qualified beautician and I’m not sure ‘clown’ is how I wish to be identified at work!

I think as people get older they become more comfortable in their own skin and care less about what other people think of them and although my thinking is heading that way, I’m still young and living in a world of competing women for on fleek eyebrows! I DO have concerns and insecurities…Will he still love me if I’m bald on our Wedding Day? Will he still love him if steroids make me fat?  Will he still love me if we have to continuously cancel to pre-arranged plans with his friends? Will he still love me if he can’t go to the football because he has to look after me when I’m sick? Of course I  get scared that he’ll resent me for not being the person he fell in love with over 5 years ago, of course I’ll be paranoid that I can’t complete with that women sliding down a pole on his stag do! But one thing I’m not scared of, is having to worry about any other women loving him or admiring him more than I do, because quite frankly, his kindness allows me to have a life and he is my entire world.

Now, earlier I mentioned a certain type of fun that couples may experience together and I know you’re all dying to know… can I still have fun when living with a chronic autoimmune disease?! Of course I can… but that doesn’t mean at times it comes without great difficulty. Those of you with chronic illnesses will understand me why I say that experimenting with Karma Sutra may require you to take it easy for the next few days or book some time off work… just don’t tell your boss what your annual leave plans were!! Mostly it’s about timing and patience and taking advantage of a good day! Hell I don’t care if you’re winning on FIFA… it’s now or never!


Communication is key

It is vital that you communicate with your partner if either of you are living with a chronic illness, you need to learn to respect each others emotions and feelings no matter how difficult they may be to hear. Understand that your feelings of anger and frustration are not a reflection of the person you love but the condition they are living with. They are not their illness and they feel just as cheated by their condition as you do. Likewise your partner needs you to understand that they feel overwhelmed by their new found responsibilities. They may get things wrong but they are trying to do their very best for you and sometimes they get tired too.

You need to be surrounded by patient people who understand you have a lot going on and a lot to deal with. There’s probably going to be times were you let the people you love down and they need to be okay with that.  Being accepting of someone who is placed in uncontrollable and unpredictable circumstances is the foundation for healthy relationships with someone who has Lupus. Understand that no matter what Lupus may take away from you both, it can never steal your love. That is entirely up to you.

You can both still be the couple you once were, you just need to some make adaptations to your life, be patient and kind with one an another. I truly believe that couples experiencing life changing chronic diseases at such a young age are strong than most…remember what doesn’t kill you makes you stronger! Cliché I know (sorry!!)

With that being said we will see you at the altar of August next year, please be prepared for lots of  blubbering, soppy romance, terrible speech’s and LOADS love and laughter!xoxoxoxoxox

Dave – thank you for everything. ❤


13 Reasons Why… you won’t want to read this blog.

Could your ‘unfriending’ or ‘ghosting’ kill someone?

Recently I subscribed to Netflix and watched the series that’s got everyone talking ’13 Reasons Why.’ If you haven’t seen it, then you need to subscribe to one months free Netflix subscription and watch it (see no excuses!) Because I can guarantee it will be the best thing you ever did… (I apologise in advance for the binge watching you will do. This seriously is addictive).


Check out the trailer >> 13 Reasons Why Trailer
For those of you who haven’t seen it yet *spoiler alert* it is about 17 year old Hannah Baker who commits suicide following a series of events, which are known as the 13 reasons that led her to take her own life. Before Hannah commits suicide she records 13 cassette tapes. Each tape is dedicated to an individual in her life that has let her down or hurt her in someway, which ultimately contributes to her death. Before taking her life, Hannah leaves the cassette tapes in a shoebox on the doorstep of a trusted friend who is left with instructions to pass the tapes to first person on her list. Each person on Hannah’s list will hear a story about themselves on the tapes and the 12 other people that led to her death. After listening to all 13 “reasons,” the individual will be instructed to anonymously leave the tapes on the door step of the second person on the list… and so the cycle continues.

 The tapes begin with a chilling opening …“I’m about to tell you the story of my life – more specifically, why my life ended. And if you’re listening to this tape, you’re one of the reasons why.’

Within the tapes lies people’s darkest secrets and insecurities. It exposes all 13 people for everything they truly are, despite the façade the rest of the world believe.  With many twists and turns this mystery is highly unpredictable and utterly heartbreaking. It highlights the gravity of mental health issues and bullying. You may think that prior to clicking play you’re as innocent as they come, but I guarantee by the subtitles you’ll feel a tinge of guilt from being an active participant in this cruel world. From everything you did or didn’t do.

Think you couldn’t be held responsible for someone’s suicide? Let me put it to you… have you every done something or said something that could hurt someone’s feelings? Has your behaviour ever intended to hurt some one physically or mentally? Have you ever used social media as a platform to emotionally bully someone? Honestly, I think we all have. From ‘unfriending’ to ‘ghosting,’ to sharing mean quotes and writing nasty captions, from turning a blind eye to someone experiencing name calling or simply being a bystander…at some point in our lives, we have all been guilty. Maybe you think it’s a bit far fetched, that an unfriending could lead to a suicide? But how much do you REALLY know about what’s going on in other peoples lives? What other shit they are dealing with? Maybe they already have a mental health issue which they are keeping under wraps? Maybe they have a chronic illness that defeats them day in day out and they just want the clocks to stop? Maybe just maybe you might end up tipping them over the edge?

But they look normal right? They engage in social media and turn up to parties… So did Hannah Baker. She’s dead now.


Something needs to change. We’ve become a nation of bullies and bystanders. We live in a world that allows us to sit behind screens, at the comfort of our own homes and attack others… because we don’t like something that they’ve done or because we don’t like the person that they are anymore? If we continue to fuel the cycle of hate, we will continue to fuel the cycle of suicide. Maybe we should be less concerned with pointing the finger at someone else and start pointing the finger at ourselves. What could we have done? What part did we play? We need to start taking responsibility for ourselves, because I assure you none of us are guilt-free.

Don’t be someone’s reason why.

Our fellow Lupus sufferer Selena Gomez supports for 13 Reasons Why

MIND – Mental Health Charity

Papyrus – Prevention of Young Suicide

From Ross Geller to Phoebe Buffay…

Me a stress head?! …Neverrrr! Okay, so I can see those of you who know me rolling your eyes and prior to my Lupus diagnosis, you wouldn’t be wrong. Because let’s face it, someone who can over analyse the unpredictability of the future, over exaggerate the importance of issues in the present, whilst carrying the weight of worries from the past, sounds like a pretty damn stressy person to me. Maybe I was just so busy popping 100s of various pills for my undiagnosed symptoms that somewhere along the line I forgot to taimfineke my daily dose of ‘chill pill.’

I was  third time divorcee Ross Geller and if someone ate my left over Thanksgiving turkey sandwich after I had LABELLED IT!… Then shit would hit the fan. Trying to juggle three jobs with a normal body would be pretty hectic, but add in an undiagnosed chronic illness and I was in quick sand.

So what happens to a borderline Britany Spears 07′ with a Lupus diagnosis on the horizon? Well…I guess there’s no need to shave your head, because let’s face it, it’s probably going to fall out sooner or later? So maybe it’s time to focus your energy on things that you can control… like your outlook on life? Your mental well-being?

A few weeks ago I took the plunge… I opened my web browser and googled meditation classes near me. Scrolled down to ‘I’m attending,’…click. Crap! I raced to the wardrobe (in the way that a chronically ill person would ‘race’ anyway…). What do meditators wear?!? I don’t have anything that looks half spiritual!! Naturally I started throwing clothes out my wardrobe like a maniac, until I resigned myself to the fact that I was just not cool enough to own clothes that make me look ‘at one with the universe,’ so sweatpants were going to have to do.

After pacing to and from the doorway a millions times and convincing myself that this was a terrible idea, a kind lady approached me and pointed up the stairs, ‘come dear join us in  Sahaja Yoga.’

Of course I stuck out like a sore thumb, but unlike secondary school, no one made me feel that way. The room smelt of incense and the walls were covered with beautifully coloured deep red material with gold lacing. At the front of the class was a large photo of a lady who I can only describe as looking like a Buddha. I took a seat at the back of the class and mirrored the instructors movements… ‘ommmmmmm.’ Okay, I’m not going to lie. There were a few occasions where I had to really really bite my tounge to stop me screaming in  hysterics , but once I was in the zone, I was in the zone.

Engaging in mindfulness has been one of the most positive experiences I’ve had since being diagnosed with Lupus. I would 100% recommend it to anyone finding themselves in a similar situation as me. In a world filled with so much pain and uncertainty, mindfulness can help you completely lose yourself and escape your daily stresses.

For me, being diagnosed with Lupus really changed my outlook on life. There is ultimately going to be a lot of things in my life that I can’t control and I’m so mentally and physically exhausted with battling this illness, that I don’t have time to worry about anything else other than enjoying my life. So what if the car in front takes too long to accelerate when the lights turn green? So what if someone takes to long to process your order at the till? Does it REALLY matter if not everyone likes you? No.  You might not be everyone’s cuppa tea but I’m sure you’re someone’s Cappuccino! I’ve learnt that life is to short to be anything than honest or anyone other than you.

Unlike Ross Geller, I don’t hang around with Skeletons anymore, I’m having way to much fun hanging out with a amazing team of therapists on a daily basis and singing smelly cat



Wearing a name badge on your first day

Will inbetweeners

I’ve been re-writing the introduction of my first blog for the past half hour, trying and miserably failing, to get it to sound less like Will McKenzie’s first day of school, ‘My Name is Will, Stop Me And Say Hello!’ So without further a due here we go…

My name is Nadia and I’m still in the younger years of my twenties (just!). I’ve recently been diagnosed with Systemic Lupus Erythematosus (SLE), which in human language means my whacky immune system has decided that it would rather attack my organs and healthy tissue, as opposed to wasting it’s time combating my foreign invaders (i.e. illnesses) like it’s supposed to do (all fun and games I know!) Somewhere along the line my body decided to reprogram itself and with that GPs questioned my own sanity and tattooed anxiety across my head (not literally but you get the picture!)

I decided to start this blog because Lupus is currently classified as a rare chronic autoimmune disease, due to there only being a small population of us diagnosed worldwide, yay!… Meaning it is heavily under researched, urgh! Unfortunately it takes the average person approximately 7-10 years to be diagnosed, so I’m hoping that my blog with help raise awareness of Lupus and inspire those of you suffering in silence to speak up and know you are not alone! There may be no cure for Lupus, but fear not, we will continue to fight together!

What can you expect from my blog? Well I intend to be open and honest about my experiences of living with Lupus and the daily struggles I face. I’ll also be talking about other various aspects of my life including my obsession my four legged friends, planning our wedding next year, travel and other random stuff!