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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-Now-

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!

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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/

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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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.

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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

Xoxoxo

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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.

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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!!!

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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

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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…

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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.

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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?

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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!

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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. ❤

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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).

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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.

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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

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My Cosmopolitan Interview

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Recently I was lucky enough to be interviewed about my Lupus Diagnosis by Cosmopolitan UK. Sadly my experience with my GPs appears to be a common one among us Lupus suffers, with many of us being kept in the dark and suffering alone for up to 10 years. Clearly, something needs to change! I did this article in the hopes that by raising awareness of Lupus GPs can become more aware of the rare illness and know the symptoms to look out for. Please follow the link below to read and share my story:

My Cosmopolitan Interview

 

My Diagnosis

1080946_24278190My diagnosis followed a four and a half year battle with my GPs, arguing about the state of my own sanity. I’ve been prescribed anti anxiety medication, been strongly advised to see a psychologist, whilst also having my partner reassured that he needs to accept my imbalance of  my own sanity.

But exactly how do you prove your not insane your refusing to take prescribed prescription drugs and you’re attending over 80 GP appointments within the space of one year? Exactly, good question.

I started noticing my health decline shortly after major surgery on my spine due to disc herniation and sciatica, about four and a half years ago. At first I put all my symptoms down to the stress of spinal surgery, the fatigue, joint pain and muscle aches, but as time went on I began noticing a rash over the bridge of my nose and my checks would flush as if I’d just been caught raiding the fridge on weigh day! I’d go to my GP with a list of presenting symptoms and a selection of not so flattering selfies, but they would just shake their heads and laugh and tell me I was just being overly anxious. When I demanded an explanation for the rash on my face they told me I was simply ‘hot’ at the time of the photo, I felt I was being undermined and I was made to feel like I was a hypochondriac.

In 2016 things got a lot worse. I started becoming black and blue with bruises, clumps of my hair would fall out in the shower, I could barely open my eyes due to sharp stabbing pains and it felt as if I had an elephant standing on my chest permanently. I just couldn’t breathe. Ambulances were called on numerous occasions because I experienced heart pain so bad that I thought I was having a heart attack. I just remember thinking, this is it, I’m going to die.

I started visiting the GPs more frequently after that, explaining that my rash had now spread to my whole body and I was having irregular heart beats and pains. Frustratingly my chest pains were just put down to ‘panic attacks’ from suffering with my so called ‘anxiety!’ They raised their voices at me and told me the sooner I accepted I had anxiety the better. I feel like I was fighting a losing battle!

I managed to drop 3 stone in weight in the space of 6 months, which I  raised concerns about due to my lack of crash dieting, but they just congratulated me and told me it was great before my upcoming wedding, they said I should be pleased!

Shortly after I ended up being admitted to A&E 3 times for a suspected blood clot, but I was  later discharged with no explanation and advised to go home and rest. That’s when I took to the internet against my friends and families advice and began googling my symptoms. Of course after doing a general search I had concluded that I was dying and pleaded with my fiancé to donate all my savings to animal rescue centers when I’d passed on… and then I slept on it and realised I was being a bit irrational.

After more specific search’s on the internet I stumbled a crossed the word Lupus, I demanded blood tests to be carried out which resulted in 3 POSITIVE ANA blood tests for Lupus, but STILL my GPs told me these were all false positives, despite displaying all the clinical symptoms.

Enough was enough. We decided to go private and visited the London Lupus Clinic to see a specialist Lupus Consultant. Within half an hour he diagnosed me of severe Lupus and prescribed me with a strong course of steroids and anti-malarial drugs. My consultant said he would discuss the possibility of starting me on chemotherapy drugs on my next visit.

I had been suffering for about four and a half years with life changing symptoms that significantly impacted on my ability to live a normal life and a Private Consultant had just diagnosed me within 30 minutes of seeing me. I was angry and disappointed in my GPs lack of patient care and inability to recognize when at least to refer!

I’d like to say my diagnosis has come as a shock but it hasn’t. My diagnosis sadly means that I will have to make significant changes to the way I live my life and there will be certain things that I will have to sacrifice. Unfortunately Lupus has no cure, but I won’t give up the fight.

What I’ve learnt from my Lupus diagnosis, is that you should ALWAYS ALWAYS trust your gut instinct and never let anyone tell you they know your body better than you do!

Where I found my diagnosis

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!

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