The Heart of War

“In each of us, two natures are at war – the good and the evil. All our lives the fight goes on between them, and one of them must conquer. But in our own hands lies the power to choose – what we want most to be we are.” 
― Robert Louis Stevenson

Rare is the day when you have lupus that no part of your body is sore, aches, itches, gripes, falls out (don't worry just hair) or is exhausted simply from the walk to work.
Managing these symptoms and putting in coping mechanisms is key to maintain some semblance of normality in our chaotic world. I am yet to discover a way of describing the difference in fatigue to someone who claims 'well we all get exhausted sometimes'. In response all I can say is well, its almost paralysing. There have been moments where your legs don't feel remotely attached to your body, and someone is smothering you.  It is this happy bundle of symptoms that we have you to juggle should we be deemed fit to work and hope our current or new employer can manage our welfare needs.
It's important for what I say  from now on I try and remain dignified and diplomatic in retelling the events to come. But I feel it an important part of my story and yet again highlights the need for understanding and compassion in the workplace, so often hearing stories of how seriously ill or suffering people have been mistreated or mismanaged welfare.
After being critically ill I was back at work in 6 months, starting off a few mornings a week and building up to four days. I had held a role with as a store manager of a very well known luxury retailer for 5 years,  from launching the store, building its business reputation, and becoming an established manager within the company. With an unblemished record and barely a day off sick the company backed me all the way when I became very ill and I left the store in the capable hands of my deputy.
Unfortunately when I came back everything wasn't so simple. Barred from managers meetings and discluded from line manager visits I was told it was because they didn't want me stressed... Gradually day by day I saw 5 years of my hard work unpicked at the seams by a ruthless 22 year old determined to make me feel like something she had scraped off her shoe, whilst using my ill health for her own personal and professional gain. Armed with her new sidekick that had the warmth and sincerity of Joseph Goebbels, she launched a campaign of discreet and at times barely noticeable acts of malice to discredit my name and alter peoples perception of me from a highly competent manager, to that of incompetent cripple. If I was in with Joseph without Hitler I'd know from snide remarks the next morning they'd had a PR conference call after work recounting my every move for the day.
Faced with an area manager whose infrequent visits made an absent father look like a role model and HR department who didn't know their arse from their elbow, I was again on the front line, still battle scarred and fragile from the war I had encountered previously. I was being punished for craving to return to my normality and what I thought was my life. A lot of what I encountered could, in hindsight, be condemnable for any employer. But at the time I was ill equipped to deal with the confrontation in front  if me, massively disarmed by six months of absence, loss of self confidence and the insecurity that I was perhaps being over sensitive and imagining it all.

Despite raising my concerns with my line manager and a brief ceasefire, things soon continued as before. Decisions were made on my behalf as to what was best for me in the workplace without consultation with me or asking what I wanted or how I was feeling, Hitler continued to badmouth me and tell all sundry  'I wasn't well enough to work' and soon enough 'Claire will leave, I'll get manager and .... can be assistant manager.'
Sadly, none of this could be proved, a lot was hearsay and one persons word against another. I'd been so consumed with getting back on track and putting everything down to 'teething problems' that I didn't even think about making notes, logging emails, details and things said... That all seemed like I was to be prepared for battle beforehand, but I wasn't, I just wanted my reality back. By March 2012 I was defeated, I had to make a choice, a choice that felt cruel but necessary - having to surrender and relinquish your hard work to somebody so utterly undeserving. They say good always triumphs against evil in the end but good has a soul and a soul needs sanity to survive.
On 19th April 2012 I sat solemnly at the desk that had been mine for so many years, pen marked and chipped from hours of review and report writing, now ungraciously claimed by another, and with a broken heart wrote the email that I never thought I'd have to write. It took me over half an hour to type the eight lined paragraph that summed up with a vague dishonesty my reasons for leaving and hit send. It was heartwrenching, not because I was a shallow workaholic that loved my job, but because of the hard work and dedication that had so rapidly disintegrated to nothing. Days worked over my contract, staffing nightmares, sleepless nights, midnight finishes after events, the clichéd blood, sweat and tears. The role had defined a huge part of me for so long and was symbolic of some of my best achievements, but it was clearly the end of a chapter and a little voice in side said 'its time to go', and 4 weeks later I did such that.  On reflection, I still wouldn't change a thing, don't place any blame or negligence or seek vengeance. Yes it was very cruel and unfair what they did but it had to happen to be where I am now.

After I finished in my management role I worked part time in what I hoped would be a less pressured, stop gap role but which it turned out to be just like jumping from the frying pan into the fire (that's right, the universe wanted its full quoter of hits with the shit stick - 2011 and half of 2012 weren't enough) I yet again found myself at the mercy of other peoples ignorance but this time it was with twice as many colleagues in a huge international corporate machine, my name another number on the payroll sheet (and they didn't even get that right).  And so I graciously emptied my locker, walked out the door and for the first time in my life added to government unemployment statistics.  Queuing up at the job centre is one of the most heartbreaking and soul destroying things I have ever had to do in my life, despite all that I had been through with my health and fighting for my life and my space on this planet, I now had to fight for a job and for respect.

When it came to interviewing for my current job, I battled with my conscience for several days in how much back story and information I should give them in the interview. Advice told me I should wait and explain the situation once offered a role, but after the hellishness of the previous working months I hadn't anything more to lose, I decided to be totally upfront and should I be asked to explain my drop in responsibility, if they didn't value my honesty or understand my illness then it wasn't a company I was prepared to work for.
As luck would have it this was a company like no other in regards to how they considered their employees. I was brutally honest, admired for being so and my illness - as it so rightly shouldn't be - wasn't even a factor. Two days later I got the call I was hoping for, I had the job and had beaten six other people to it. Six perfectly able, fit, healthy and just as experienced people.  A year later i'm still there, I work with lovely people who seem to understand and an employer who often remind me that my welfare is 'very important to them.'

The world of work and employment is a minefield when you a have a chronic illness or disability that impacts on your working life, and finding the right company or employer is simply down to chance. 

The whole experience of getting a new job is terrifying despite all the legislation in place to protect you, you have to hope that person considering you for a job will understand and see the talented, hardworking and committed person behind the illness.  It's Russian roulette, and there's nothing worse than wholeheartedly explaining your illness to someone and you can see in their eyes they don't understand, or especially with lupus, don't believe you, as you look like everyone else.

Something blue

What is the funniest thing anyone ever told you?  Take a minute.  Think about it really hard.  Does it make you smile? even just a twitch at the corner of your mouth?  Yes. What about the time you really hurt yourself? A wince?  Now the most embarrassing moment, cringe. Then the hardest thing you’ve ever done, proudest achievement. Nice feeling. What about the saddest time in your life….

Everyone has a sad story to tell.  The problem being everyone thinks theirs is more so than the next one they hear.  So why should anyone want to bother listening to me?  That is what I have been saying to myself, my husband Mark, my mum and my friends for the whole of these past two years, burying each second of time in my brain like a camera recording.  Logging every detail for future reference and dissection at a later date, like a detective at the scene of a crime. And when I go to bed at night and the lights go off, the sound clicks on and the film begins.  Pause, rewind, replay.

For most women dreams of their wedding day have been ever present since we were old enough to put the table cloth over our heads and dance around our childhood homes humming 'here comes the bride'. It was the day that we too got to be a princess, our makeup and hair elegantly styled to perfection our prince at the other end of that aisle gazing back at us, eyes full of love.  Then we grow up and reality reminds us that it's not all a fairy tale.  Anyone who's planned a wedding will know it takes a lot of hard work, stress, tears and organisation, to get the day as close to that childhood fantasy as you possibly can.
As most people will be aware by now the preceding months to our wedding weren't exactly run of the mill. Whilst most brides were deciding on menus and going to food tastings at their chosen venues, I was debating the culinary offerings of York hospital catering and even then to what my limited appetite could tolerate. There was toast you could bounce of walls and roast dinners reminiscent of school dinners you could smell 3 corridors away, a far cry from the mini smoked salmon blinis and bucks fizz reception options at four star hotel venues.  Once back on the main ward my pre wedding food selection was a safely selected baked potato, salad and tinned salmon.. most days, for two weeks.

Aside from the food there was still a whole wedding to organise. Despite eye rolling from the nurses and funny looks from other colourful characters on the ward, seven weeks before my wedding I was sat upright in bed, oxygen tube in my nose, be-dongled laptop on my knee and was tap tapping emails to florists and ordering shoe stretchers off Ebay to widen a slightly too tight pair of bridesmaid shoes. All the while contending with those pitiful looks and barely veiled mournful thoughts of the other patients, 'she's kidding herself, look at the state of her she'll never be well enough'  and counteracting them defensively with my very own bold, grand statements of ''i'm getting married soon - look at this picture of my dress!''
But why would these five strangers I shared the 25feet by 15feet four walls be convinced otherwise, the evidence was pretty much stacked against me and I looked a sorrowful sight. My hair at this point was half its normal curly wiry thickness, wisps sparsely hiding terrifyingly bald sections, my face still like a beach ball and a stomach and ribcage full of nephrotic fluid to match. My legs were like tree trunks that if you pressed and would leave an imprint and felt not too dissimilar to a memory foam mattress. But what other choice did I have? Cancel the wedding and suffer through this with no end point?
To cancel a day I'd been looking forward to my whole life would have been a decision crueller than what this disease had put me through already that year. My heart was broken enough, this illness unveiled more and more of it its hideous secrets as we approached 10th June, piece by piece it was shattering every expectation of what it should have been like to be an excited bride to be. Every little moment, from not being able to wear my engagement ring due to my fingers being swollen to considering a cheap alternative to my already chosen and paid for dream wedding dress for one that may fit my grotesque body, was a little tear in a page of my storybook wedding. To this day it leaves a little hole in my heart that I didn't get to embrace the pre wedding joyfulness most do.

While other brides were worry if they'd lost enough weight to fit into their dress or if everyone has RSVP'd, all I wanted for my wedding day was my hair. You can judge me as you wish at this seemingly shallow request,  but can you imagine what it feels like being terrified your wedding photos would be a lifelong reminder of the sickness that haunted me in that moment?  That every time I opened that album I would be heartbroken once more at the image of the person staring back at me. I felt it was trivial request for all that I had already endured and so I prayed every night that it wouldn't all go and then worried all day what I was going to do with what was left!

With all brides I have known since, I smile and feel the excitement and happiness of their big day for them but I envy the innocence and carefree fulfilment of preparing for their big day. I envy the trivial wedding woes of family disagreements and disorganised suit hire companies. It's something I never had and will never get back. I'll never forget back the fact my dress was 2 sizes too big as after the fluid drained away, you saw the true toll the illness and chemotherapy had taken on my body. I'll never forget that I never really had a proper hen weekend, that despite appearances I actually still felt pretty sick and shaky and was rattling with medication on our wedding day, then for our beautiful honeymoon we'd spent a twelve months paying for postponed in year that we perhaps deserved a holiday the most.
But never for one moment despite all my worries, fears, selfish anxieties and ambiguity about the wedding taking place, did I ever doubt I would make it to this day, that this would be the best and most happiest day of my life, that despite the far from fairy story embarkation of these would be nuptials,  we would have a storybook ending and I would marry this wonderful man.

Most know that this chapter of the story has a happy ending, that thanks to some very clever (expensive agh!!) hair extensions and hairdressing wizardry to hide the areas on my head feeling the cold breeze nor than others - nobody could tell I was having more issues than Wayne Rooney before his hair transplant.

But also thanks to some very clever doctors, I was alive and well.

The Wolf and the Butterfly.

Getting into our 30's we are all starting to notice those differences that define us as 'a little bit older', like those few grey hairs we get irritated at for a split second when brushing them away from your face and behind your ears. But as I look in the mirror each morning I can't help but notice the subtle changes that identify more than just the framework of my 31 years on this planet.  They are changes that only I really see, the shifting face of this illness penetrating through the thin layers of my features and announcing its presence.
It's in the dullness of my eyes, not as bright and open as they once were, the heavy and pronounced bags underneath that even the most expensive make up products battle to hide - a heavy tiredness buried deep that all the sleep in the world could not fix, a speckling of blotchy purple redness sits often very indistinctly in a horizontal smear cheek to cheek via my nose, often mistook as a blush of embarrassment or warmth of the room and only I really knowing what it dictates.  Along with a just off natural paleness, a slightly rounded jawline and the aforementioned peppering of red and purple continuing on my upper right arm, only an astute eye would carefully piece together the jigsaw of these imperfections and come to the conclusion that not all was as it first seemed.
In my own analysis, a person with Lupus has potentially 3 faces. In the forefront is the image of the person they were before chronic illness, the face that isn't slightly rounded from steroid use, the lines around the eyes and forehead that tell the tales of countless painful nights of lost sleep and tightened expressions of discomfort.  This is the face you remember well, long for the most and regret not appreciating more at the time. This is the face of youth, of eccentric, tipsy and happy smiling faces imprinted on photographic paper from the past, the face of freedom and ability to stand in the summer sunshine for hours and alas the face of ignorance of what is yet to come.  Now it is merely mask, a foundation that bears the marks of your experiences and the features of the new faces trespassing through.
The second face reveals the truth and reality of your life as it is now.  A striking resemblance to the former you, it confesses the abrupt authenticity and imprints of your illness and your resilience in return.  Like battle scars embedded in your skin, they routinely remind you of the trauma that you have faced and the likelihood of its recurrence.  This is the true face of Lupus, like a tamed wolf it can be controlled by outside forces for a while, but it is still wild and free at heart and has the power and ferocity of mother nature to resume its former identity, attack and ravage without warning.
The 3rd face is not so much of a visual form returned to you from a reflection, but an eventual state of mind built from your experiences. Not everyone will encounter this face, not everyone will choose to enter this world of conclusion, understanding and acceptance.  It involves total resolution that you are not going down with out a fight,  turning and facing the wolf in the eye all the while scared beyond belief at what he might do next. He is tranquil as a pup when relaxed, but a killer when aggravated and all the time you know full well that previously he had a head start and attacked not out of nowhere.  Unlikely again though, you see the wolf will always have the control and pull and snarl, but now you have the leash. The 3rd face is of course that of the butterfly. Despite being synonymous with the malar rash that affects our beauty at skin depth,  it represents the beauty and serenity of our minds and body post war. Our bodies delicate still, but as person freer and enlightened and accepting of our own fragility.

Once engaged in the world of blogging, social media, networks that are associated with lupus, talking and reading the posts of other sufferers and their families, never has it been more apparent how prevalent these creatures are closely associated with the disease. To a newer or more innocent eye, the use and comparison of this imagery and affiliation to the disease could seem oddly peculiar.  To us it's a platform or metaphor to describe the complication and unpredictability of our illness, it helps us categorise and make sense of what we encounter in our daily life.
Basic research via your Google search bar would teach you that the term Lupus is the medieval Latin word for Wolf, and the connection to illness and disease first recorded by a 13th century physician to describe facial sores and scarring that resembled a wolfs bite - assumed to be Discoid lupus variant - now the term is used to describe all types of the disease. The butterfly is of course as I have already mentioned rooted from the Malar rash so many of us suffer with. Little imprints of red and pink brought on by stress, sun exposure, illness or flare or just because it can, often little butterfly kisses or sore red marks it's often the only visible sign of this invisible illness that tells a misinformed public that we are different.
The theory of evolution instructs us that of course a butterfly would not win a battle against a wolf. So obvious the vast divide in physical strength and presence between the two, it would only take one swipe of a paw to flatten the colourful Papilion. But the butterfly is quicker in speed and thought, at the warning of an attack the butterfly can reach deep inside for all it's strength, flutter high into the sky, stretch its wings and rest until the ground is safe again.

How the other half live.....

" I think that it is important to think of pain as your common enemy, not as a part of your wife or baggage that comes with her. It is something outside of both of you that impacts both of you and that can kill your marriage." Pete Beisner - 23 Tips for men on supporting a partner  with chronic pain.

As that cold breeze we've all noticed the past week blows in my sleepy, pale face on the walk to work it's a impending reminder that the season we chronically ill and immune suppressed dread the most, is almost upon us.
It's starts with our annual flu jab, hoarded in like cattle on Saturday morning as not to disrupt the 'normal' sick peoples appointments midweek, stabbed in the arm then sent on our way to feel lousy for a few days, then ends 5 months later rearing our pasty yet red nosed faces from under the duvet, recovering from our 6th or 7th virus, cold or stomach bug of the season.
Not quite in hibernation mode yet, like a human barometer, my body is already predicting the warning signs of the wintery months to come, the needle pointing decidedly firm at 'unsettled' with my chest a little tight, my throat sore and my body aching and creaking like an old boat. (Much more than usual anyway). Week by week I descend into the unknown, a multitude of germs squeaking with joy at the presence of my shitty immune system, my body the host for their two week caribbean holiday complete with pool party.
While the pressure in the weather changes, so does the pressure in our household and in our relationship. With winter,  comes the period where I am at my upmost reliant on the wonderful SuperMark. It coincides with the exact same moment in space and time that Mark worries most about me and the potential outcome of me becoming ill with the simplest of ailments.

For the next 5 months our priorities change dramatically and the nuptial promises of 'In sickness and in health' are used to the fullest capacity.  Already the bathroom is overdue a wipe and the washbasket bursting at the seams, all because I have felt a little rubbish this past week and my day off will simply be to lay on the couch and rest. The limited time Mark has after work is spent making sure we eat and that the kitchen doesn't start to resemble something like one of those scruffy eccentrics they feature on channel 4 TV programmes.
But living with somebody like me takes a lot more than just being prepared to take on the household chores when I'm sick.  With the latest virus taking host, the equal partnership of our marriage becomes very one sided, with each frosty day the increasing fear of antibiotics goes hand in hand with me having to rely on Mark to do everything whilst feeling helpless and guilty for not functioning properly... I call it the chronic guilt.   A burden we chronically ill drag around with us every day like a misbehaving child in full tantrum mode, reminding you that you always need help, embarrassing you in public places and often getting looks of misplaced sympathy or disapproval at your inability to cope.

It's true to say that going through a traumatic experience as a couple can make or break the relationship. As the other half of a lupus sufferer it's the one perspective that's difficult to understand for us. Swamped with our own anxieties and pain, we are often the most selfish half of the relationship, and that is presuming the relationship is on steady ground. It's so easy to become so self involved with your own misfortune that you disregard the view from the other side of the bridge, slipping into a destructive  routine of him giving and you taking.  Surely it's important to remember that you mustn't take all this extra care, support and attention given as expected?  If asked to describe how Mark copes with my illness and why he didn't run a mile while he had the chance, I wouldn't know where to begin and would probably trivialise the question by saying something sarcastic like 'he's a glutton for punishment.'

Setting aside my fear about the future, I do feel an incredible sadness that the life we initially hoped for together has inevitably changed, that the life he is tied to with me, is of far less a quality than what he truly deserves.  I do not wish upon him the constant fear or worry that my condition could change at any time,  the expectation to rely on him more and more as I get older, far more than the promise of a wedding vow.

O ye of little faith

" If you possess a strong belief in God and also endure a chronic illness, you probably have struggled with your faith. Why hasn’t God made you well? Without doubt you have prayed for just such a miracle, as have friends and family. The fact that your physical pain remains month after month -- or even year after year -- may well have caused you heavy discouragement.  It is easy to assume that if one seeks to live by God’s will and loves Him, God will always relieve that one’s physical suffering. Yet, there you are -- or someone you know and love -- still bound by pain, disease or disability. Does the lack of physical relief mean that there is something wrong spiritually?" - Cecil Maranville, Meaningful Hope for Christians for Chronic illness.

After my first week's rest during a recent fortnight of annual leave from work, I found myself considerably rested, (a great honour from lupus and his little achey fatigue buddies) dressed,breakfasted, medicated and half way to the local swimming pool at 9am on a Sunday morning. As I reached the corner of the road to my destination I paused for a split second and watched as families happily entered the church situated next door, I watched their  faces as they wholeheartedly and without any doubt made their way through the welcoming arched wooden doorway, eager to show their faith and belief. Not for the first time since I have been ill,  I felt a very natural instinct follow the crowd and enter the calm tranquillity even most  atheists couldn't deny exists within a church building.
Within 2 minutes that intention is gone and I am back to my original plan of pacing up the road to swim 15 lengths and burn off the previous nights spicy beef and noodles (homemade of course).

The trouble is, I feel conflicted. On one hand I feel like going through those doors would give me comfort and reassurance for the path in life I now find myself on, give me opportunity to say 'hey thanks, I owe you one, I'm still here' and offer me momentary solitude to consider all the additional thoughts and adaptations I now have to integrate into this alien and unexpected lifestyle
But on the other I hand I feel I would want answers,  and like the eternal cliche I'd want to know ' So why me then?  What was the point? I was fine with the way things were' and so the doubt comes in.

It's a question I've considered so often since, if God exists why would he make me suffer like I did, put me through 6 months of torture, terrified of going to sleep in case I didn't wake up and scar my body from knee to ribcage, something I have to see every day in  the mirror, a remorseless reminder of the whole period. And then the table turns again.. Why am I still here? There was a day in April 2011 where my body completely shut down, my kidneys barely functioning and the fluid on my lungs causing heart failure, strapped up to machines and wires in every possible vein and artery when something or somebody decided 'not yet'.
Was it all those prayers mum kept telling me people we're saying for me? The congregation of my Mother in laws church in Skelmersdale who we're told to keep me in their daily prayers? Or my own strength of mind? the actions of quick thinking critical care staff? The decisions of my consultant and the right medication?

If it was the latter, why do I still want answers?

It may be human nature, it it may just be me, but I still question why and feel like over 2 years on I'm sat on the fence - the church fence that is.
Common sense and the facts of science and evolution make me highly critical and very unaccepting of the Bible and what it tells you to believe. It's validity is null and void to me and always has been, never a regular church goer and irritated by those who knock at your door eager to preach and convert I still keep a very open mind. Never one to dismiss something or someone at first glance, I still feel a sense of a bigger meaning to life, a plan and that there are more answers out there for everyone. Is this a type of faith? or something we have that as humans, don't fully understand and so seek answers to fulfil a spiritual void in our lives.

It's amazing the thoughts and questions that occur to you when you go through a life changing experience or serious illness. For me, everything I once had faith in has gone through a massive metamorphis. Aside from the basic skills we learn as a child, language, walking, reading. I feel like I have had to relearn nearly everything in my life and by default meaning I needed to have utmost faith in myself. After 6 months not working and reliant on my family and Mark for the simplest of things, I had to learn how to be around people again and multitask, learn how to admit defeat when tired, not to worry about the small things, still learning not to feel guilty about not being as strong, healthy or fast paced as everyone around me.
The presence of a chapel and Chaplin in every hospital is an advocacy for faith as a coping mechanism during serious illness. A necessity for the chronically ill and their families whom need ability to seek sanctuary and prayer during difficult times.  The occasions I was wheeled past that chapel at York hospital I felt nothing but resentment at that time, it was a place to direct my anger compiled with guilt for all those that I was told had said a prayer for me.  Could it be I do really believe deep down inside? The fact that I resented the chapel and what it represented surely meant there had to have been something tucked away somewhere and I would have gone down a whole other route.
So is faith just a way of providing ourselves with comfort?  We perhaps seek comfort from religion as a way of giving us hope that things will get better in the end, but how does that give us relief in the mean time..?  Is what we are doing just procrastinating and filling our time with perhaps misplaced hope until we come out of the bad times and then exclaim 'my faith got me through'.  Did it? Or was it a channel ( like many others, counselling, exercise, holidays) that was cathartic to your needs, frustrations and sadness at the situation. Why should it be proclaimed above all else as the perfect ointment to heal all manner of human ailments and illness..?

One thing I am certain of is that it wasn't religious faith that helped me cope through those awful months, but a belief in myself and a stubborn determination that I was going to get better and get married. It was this and the love of my family and beautiful friends that got me through the gates and halfway to the finish line, and are still keeping me on track today.  And for that reason only when I have reason to be in a holy place... I will light a candle and say 'Thanks'.

For I long to see you, that I may impart to you some spiritual gift to strengthen you— that is, that we may be mutually encouraged by each other's faith, both yours and mine. - ROMANS 1: 11-12

Lonely are the brave

There is just a brief period of time just once a week that I cherish so gratefully, a time where I feel I am completely in control and that powerlessness fades for just 20 minutes. 20 minutes that are completely mine.  On a weekend  morning when the normal world snoozes, I leave home down our sleepy cul de sac and up the lane to work. It's a time of day that you share only with the paperboy and early morning dog walker's. The world is silent and I am alone. In the best way possible.
Several things remain true to Claire pre 2011.
1. I still get annoyed by people who come along and press the button at pedestrian crossings when you've been stood there for ages, and clearly already pushed it.
2. I'm impatient when I'm hungry, ovens don't work fast enough when my belly's rumbling.
3. I'm still convinced Mark got a pay off by my family to marry me, funded by some hidden
secret fortune.
4. Saturday dinner always has to be something nice to look forward too. I do not like salad and baked potato on a Saturday.
5. I  am like an elephant - not in the overeating wibbly belly sense (well maybe a little after last nights curry) - but that I never forget, especially faces.
6. I have three personalities, One a confident manager, can talk to a customer at work about anything and everything, another a quiet, slightly introverted in new or unfamiliar company, often mistaken as rude or standoffish and the last is the real me, the face my true friends see, loyal and generous to a fault and constantly wanting to try and make everyone happy.
I am not the same person I once was, remnants and flickers remain but nearly everything has changed and shifted and to be brutally honest not always for the better. Finding a role for myself in this whole new and unusual world that is completely entangled with mazes, riddles, false starts and dead ends is proving a battle far greater for my state of mind than 6 months of isolation and chemotherapy.  I felt like I was on route down this straight road with signs in the distance directing me right ahead, now I feel I've been pushed down a side road, done a U turn and been redirected the long way round through back roads.
Sometimes I feel like I'm being punished, not for any wrong doing but for the choices I've had no alternative but to make since I got very ill. Either through recommendations from doctors or by my hand being forced in certain circumstances, not one of the decisions I've made have been deep down heart and soul what I have wanted to do. It makes for a lonely existence not having the choices and options other people do so easily take for granted, I admire endlessly the positivity of those individuals that are sicker or less fortunate, I imagine their distaste at my self indulgent moaning at circumstances that to them, must seem trivial. 
But yet to me it feels like a hole, a missing piece of the puzzle and my sense of isolation is just the result of the powerlessness you feel when you are at the mercy of your own body's ineffectiveness.
There was a time 3 years ago when as arrogant as it sounds, I felt like I was on top of the world. Proud of my achievements, a wonderful partner, family and a job that I felt I was well respected and admired in. How rapidly, by a twist of circumstance, I discovered that most of it can all come undone. With the exception of my family and Mark it all fast became worthless and unrecognisable, with me in turn not recognising myself. From the outside everything seemed fine and with life as we know it carried on.  But in reality I struggled to identify with nearly everything I once knew and still to this very day trying to find a place in this whole new world.

State of mind

Today I am more tired than tired. The overwhelming desire to go home and sleep only defeated by the fact I have nobody to replace me at work due to the other manager being in holiday and the fact I am a stubborn arsehole and probably wouldn't let work down anyway.  Like clockwork when I am in charge and have loads to do, I am ill again with a cold and have two more days before I can rest. The rotten irony of this situation is fast becoming normality, along with having sick bugs or other viral nasties when I do actually have some time off to recharge my fizzling lupus batteries. This in turn spoiling any niceties or escapism that I had planned.
The thing with lupus is, no matter how hard you try not to let it control your life - retaining some semblance of normality outside of blood tests, hospital appointments and 12 tablets a day - it still always seems to have it's way.  Like a viscious circle you always end up back where you started. It's like groundhog day just without the eccentric antics of Bill Murray and that cute beaver thing.
You can ask my long suffering husband, I'm probably the most stubborn person you can meet - a trait that I no doubt inherited from my mother (I love you mum) -  adamant not to be defeated or told what to do by anyone, never mind submit to an illness that thinks it's ok to try and bump me off 5 months before I get married.
My greatest fear when it comes to my health, are the potential consequences of my unwillingness to relent to the sneaky hidden agenda of my illness. Everyday I live with the thought of am I doing too much? If I do 5 days at work is that going to make me tired? If I get too stressed is that going to cause problems with my blood pressure?? Then problems again with my heart?
But what is the alternative, am I supposed to hide away, rot in my own self pity? Or carry on, even if life is that bit harder.
The way I see it is you can go down one of two paths. You can follow the easy path but walk in the dark or you can follow the hard path, with sharp bends and steep hills but is well lit so you can see ahead.
It's so easy for me to say isn't it? I recovered well and finally have a job where I'm neither made to feel like an incapable imbecile nor treated like a nobody because of illness. I'm not reliant on battling the benefits system and have a wonderful supportive family. Some people aren't so lucky, and in this situation do they have the right to feel more defeated and take the easier option?
If you don't have that support network I can see how easy it can be to slip into that negative state of mind and use your illness to blame everything that has gone wrong or a reason not to try something new. God knows I've done it! But there comes a point where you realise that life just continues on, people will get up and go to work, cars will be washed, dogs walked and the world carries on turning, it's a simple choice. Go with it and try or get left behind. You don't have to run a marathon or jump out of an aeroplane, it's changing a thought pattern and then doing, instead of just wishing.
I have lupus, it doesn't have me.