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