So with glad tidings and yet again with lightning speed the wonder that is Christmas Eve is upon us. Working in retail the opportunity to feel 'Christmassy' and enjoy the build up to Christmas is slightly stunted by the onslaught of crazy Christmas shoppers, bargain hunters, sale preparation and the woes of those less organised customers whose requests, reasonable or otherwise, we attempt to resolve, because after all, it's Christmas. It has meant, unfortunately, that the whole 'getting in the Christmas spirit' has been very literal its meaning, with and hour spent in the pub round the corner from work. Never the less, my Christmas tidings are from the heart as well as a third of a bottle of Merlot.
I'm keeping this short and sweet with just a few thank you's and wishes both for the year past and the year to come. I'm thankful that I have spent another beautiful year (my 3rd at that) as Mrs Boardman, it is yet to lose it's charm and I doubt it ever will, I am blessed that this year we have survived unscathed and I have managed another year without any hospital stays. This year has brought me a goddaughter who is too beautiful to mention and who emits the warm and generous nature of her mother, one of my best friends in the world. This year has also given me yet another amazing nephew who is truly gorgeous and full of hugs waiting to be given and of course the news that my condition is extremely stable and as healthy as I could possibly be.
I wish lots of love to all my friends, many of whom have created families of there own this year, to my family who yet again have provided lots of love and support despite having their own own lives to lead and problems to solve and of course, last but not least, to my adoring, faithful, hardworking and loving husband who's actions in our days spent together are the true embodiment of those vows spoken two and and a half years ago. A Merry Christmas from me, two glasses of wine and a cheeky rum and coke.
Tuesday 24 December 2013
Sunday 15 December 2013
Christmas Spirit
As we race towards Christmas with the speed and energy of a Meatloaf power ballad i'm confronted by the fact I've survived another year on this planet and moreso in the best (as far as i'm limited) of health and stress free in a long time.
When you go through a traumatic illness, accident or life changing experience I like to say that it opens your eyes to the truth of what people go through, makes you a far less selfish person but of course I can only speak for myself.
I'm astounded at how easily I notice the shadows of hurt flickering behind peoples eyes. Sad stories playing on loop and transmitting silently to another through tone of voice, eye contact or a subtle smile that doesn't quite break across the cheeks.
Everybody has a sad tale to tell, some more than others. But those who have encountered utter pain need not speak a word, you will be read and understood.
Since my immune system has gone haywire, you'd hazard a guess that with nearly 4 years of regular hospital visits, stays and appointments I would be immune to the routine of going for my consultations and would treat it with the nonchalance of fern cotton presenting Glasto. But no, far from a party in the mud and more like going back 18 years to the night before your A level results (or BTEC advanced if you were anything like me and found academia like wading through a swamp)
The trouble with me is that I have an overwhelming desire to care far too much about everything. Despite my husbands demands that I should 'not give a shiny what's sometimes i'm afraid it's just built in. So with a looming hospital appointments this week, my overactive imagination steps in and that suppressed but ever present thought of 'what if something isn't ok this time' starts doing it's little dance around my brain. I ask for those that can see those invisible signs, just to smile and reconsider your actions, don't say those words of contempt, push past me in the busy shops or judge me because I'm a little bit quieter and more tired. It makes my day that little easier, you should know. You've been there too.
When you go through a traumatic illness, accident or life changing experience I like to say that it opens your eyes to the truth of what people go through, makes you a far less selfish person but of course I can only speak for myself.
I'm astounded at how easily I notice the shadows of hurt flickering behind peoples eyes. Sad stories playing on loop and transmitting silently to another through tone of voice, eye contact or a subtle smile that doesn't quite break across the cheeks.
Everybody has a sad tale to tell, some more than others. But those who have encountered utter pain need not speak a word, you will be read and understood.
Since my immune system has gone haywire, you'd hazard a guess that with nearly 4 years of regular hospital visits, stays and appointments I would be immune to the routine of going for my consultations and would treat it with the nonchalance of fern cotton presenting Glasto. But no, far from a party in the mud and more like going back 18 years to the night before your A level results (or BTEC advanced if you were anything like me and found academia like wading through a swamp)
The trouble with me is that I have an overwhelming desire to care far too much about everything. Despite my husbands demands that I should 'not give a shiny what's sometimes i'm afraid it's just built in. So with a looming hospital appointments this week, my overactive imagination steps in and that suppressed but ever present thought of 'what if something isn't ok this time' starts doing it's little dance around my brain. I ask for those that can see those invisible signs, just to smile and reconsider your actions, don't say those words of contempt, push past me in the busy shops or judge me because I'm a little bit quieter and more tired. It makes my day that little easier, you should know. You've been there too.
Thursday 28 November 2013
Everybody needs a hero
Today I'm going to tell you a tall tale about a little known superhero, although the tale isn't tall it is certainly true and worthy of a place on every comic book shop display shelf. It's a triumphant story of true love beating all the odds, tears, happiness and playing guitar down the phone. What is most exciting is that the story is only in it's first few chapters, what is yet to come for our hero and what monsters will he have to defeat to defend his one and only true love?
I am of course lovingly referring to the very handsome curly haired blue eyed boy that is Mark, my wonderful husband and often referred to as SuperMark.
Wednesday 20 November 2013
I wish I had a time machine
Dear Claire,
If I start by rewinding back to this time five years ago, we are back in a year that seems so alien rolling off the tongue now we are in the millennial teens of 2013, we are hopping back to 2008 with a pointers inspired by the great unknowable power of hindsight.
You have a lovely little flat of your own, a very nice young man indeed, despite the sarcasm and lack of housekeeping skills (don't worry, plenty of time to sort that out later) and a great job you've had for just over a year.. and isn't that good? It's been an incredible year for you, you've worked very hard and you should be very proud of yourself.
Just eighteen months ago you were working in a shoe shop run by a gambler and living in a cold damp house with a promiscuous irishman, his gay brother and a hippy loner from new zealand.
In ten days time you move in with the love of your life and as fate would have it just to make it that touch more romantic, just in time for Christmas. Don't get too excited, there isn't a diamond ring in your Christmas cracker this year (it's a pink nintendo DS) but just hold your horses, all good things come to those who wait. This one's a keeper, he just likes to bide his time (with everything) very annoying and frustrating right now but it's something that you will love very much.
One thing you will have noticed by now is the joint pain, the endless pounding in your fingers and inability to straighten your left arm without a shock of white pain down it. Yeah, that's not normal and it's not just arthritis, you should go the doctors for them to keep an eye on it, there's probably not much they can do right now and be prepared for them to not believe you that much, as blood tests at this stage will not really show that much to build a case, but at least if you are repetitive in your visits you might get an answer sooner than I did.
My advice for the next few months is to gain a bit of perspective with work and ask those above to help, you've just done 12 days in a row without a day off correct? that is not acceptable and you have absolutely no idea the strain you will put on your body as you continue to do this for another year. Stop. Now. You will find the act of separating the two an arduous task, as you always want to do the best for everyone, including the people who pay your wages, but you're forgetting one vitally important thing. You have completely forsaken yourself. Be selfish, rota days off and book holiday time, negotiate for staff, delegate tasks and stop doing everything yourself. It is a shop, the staff will cope and the business will continue to run.. and we'll leave that part just there.
If I start by rewinding back to this time five years ago, we are back in a year that seems so alien rolling off the tongue now we are in the millennial teens of 2013, we are hopping back to 2008 with a pointers inspired by the great unknowable power of hindsight.
You have a lovely little flat of your own, a very nice young man indeed, despite the sarcasm and lack of housekeeping skills (don't worry, plenty of time to sort that out later) and a great job you've had for just over a year.. and isn't that good? It's been an incredible year for you, you've worked very hard and you should be very proud of yourself.
Just eighteen months ago you were working in a shoe shop run by a gambler and living in a cold damp house with a promiscuous irishman, his gay brother and a hippy loner from new zealand.
In ten days time you move in with the love of your life and as fate would have it just to make it that touch more romantic, just in time for Christmas. Don't get too excited, there isn't a diamond ring in your Christmas cracker this year (it's a pink nintendo DS) but just hold your horses, all good things come to those who wait. This one's a keeper, he just likes to bide his time (with everything) very annoying and frustrating right now but it's something that you will love very much.
One thing you will have noticed by now is the joint pain, the endless pounding in your fingers and inability to straighten your left arm without a shock of white pain down it. Yeah, that's not normal and it's not just arthritis, you should go the doctors for them to keep an eye on it, there's probably not much they can do right now and be prepared for them to not believe you that much, as blood tests at this stage will not really show that much to build a case, but at least if you are repetitive in your visits you might get an answer sooner than I did.
My advice for the next few months is to gain a bit of perspective with work and ask those above to help, you've just done 12 days in a row without a day off correct? that is not acceptable and you have absolutely no idea the strain you will put on your body as you continue to do this for another year. Stop. Now. You will find the act of separating the two an arduous task, as you always want to do the best for everyone, including the people who pay your wages, but you're forgetting one vitally important thing. You have completely forsaken yourself. Be selfish, rota days off and book holiday time, negotiate for staff, delegate tasks and stop doing everything yourself. It is a shop, the staff will cope and the business will continue to run.. and we'll leave that part just there.
Thursday 14 November 2013
The language barrier.
Lupus suffers are often the masters of disguise, in our own little world what we say or do is not exactly what we mean.. and perhaps sometimes neither do others in our lives..
Tuesday 12 November 2013
Tis (almost) the season to be poorly..
As I looked out of the window yesterday morning at the first frost on the cars, it yet again reminded me that the worst of the winter months are yet to come, along with the busiest and most exhausting times at work. The times I'll need all the strength I can get but will have my energy tested to the limit with bugs, germs and aching bones from the cold.
Saturday 9 November 2013
A Poem for my darling daughter Claire
A Poem for my darling daughter Claire
I remember the day you were born, it feels like yesterday
I looked into your beautiful face, you took my breathe away
I promised to protect you and love you your whole life through
Because you are my daughter, it’s what mothers do.
Friday 8 November 2013
The Incredible Power of Denial..
For today.... a few words from my husband.
It's early Febuary 2011, early evening. I'm stood in the back yard of the small terraced house me and Claire rented. The same terraced house I had proposed to her in on Christmas day, just over 12 months ago. It's five months until the wedding and Claire isn't there, she's in hospital.
Thursday 7 November 2013
thursday turd-day
Absolutely exhausted so here's todays post in the format of my boring lupie day ( well hey it's a break from the drivelly moany stuff - I've got lupus, I feel tired, blah blah blah!)
Woke up at 7.38am despite the opportunity to lie in til 8.15 (flexi hr day at work)... somebody in the night clearly ripped me out of bed, threw me downstairs, made me run on a treadmill for an hour and punched me in the mouth. So as per usual woke up feeling like a bloody superstar with a burning cold sore - feel long hot shower is the only solution, did not
Tuesday 5 November 2013
Don't tell me you're tired
Today I fear I may fail in my attempts to give you anything interesting to read. I'm on day four of five, not a regular occurrence, but it means today I have to dig into the depths of my energy reserves.
Battery levels are officially on low and the world is like that dreary slow voice you heard in your headphones when your Walkman (for those that are old enough to remember) needed new AA's.
So today is a day of swamp walking (dead legs), fish bowl vision and speech that makes Lindsay Lohan look sober.
The main worry is the concentration, the fear of making a mistake and looking like an idiot. I have to just pray for the best and hope my lovely colleagues don't think i'm a grump.
I wish somebody could walk just one day in my shoes and see how difficult every step I take is and at the same time not wishing this selfish, consuming disease on anyone. I honestly think sometimes that whilst sympathetic, not many people actually understand how hard it is for me to work and function like everyone else. I put twice as much effort into everything I do just to be at the same level and speed, and to avoid massively the perception that I should be given an easier ride because of my illness.
Ultimately I don't have to justify my tiredness, I choose to explain as a reminder to why i'm going at a snails pace that day. So i'm going cut myself some slack, to work in management in a busy shop and stand on my feet 9 hours a day whilst having lupus, is bloody legendary. In the words of the long suffering SuperMark ( my husband).. "Lupus...only proper hard bastards get it."
You can tell he works in advertising..
Battery levels are officially on low and the world is like that dreary slow voice you heard in your headphones when your Walkman (for those that are old enough to remember) needed new AA's.
So today is a day of swamp walking (dead legs), fish bowl vision and speech that makes Lindsay Lohan look sober.
The main worry is the concentration, the fear of making a mistake and looking like an idiot. I have to just pray for the best and hope my lovely colleagues don't think i'm a grump.
I wish somebody could walk just one day in my shoes and see how difficult every step I take is and at the same time not wishing this selfish, consuming disease on anyone. I honestly think sometimes that whilst sympathetic, not many people actually understand how hard it is for me to work and function like everyone else. I put twice as much effort into everything I do just to be at the same level and speed, and to avoid massively the perception that I should be given an easier ride because of my illness.
Ultimately I don't have to justify my tiredness, I choose to explain as a reminder to why i'm going at a snails pace that day. So i'm going cut myself some slack, to work in management in a busy shop and stand on my feet 9 hours a day whilst having lupus, is bloody legendary. In the words of the long suffering SuperMark ( my husband).. "Lupus...only proper hard bastards get it."
You can tell he works in advertising..
Monday 4 November 2013
Lucky me...
So with my 3rd day at work in row upon me, I wake with the knowledge this is where the battle for the week begins. It comes with the heavy eyes, the lead like legs and a mood that matches the peeing rain outside, but up I get and on with the day I go safe in the knowledge, I consider myself a very lucky person in the grand scheme of things.
I have wonderful husband, rock solid marriage, a great family and a job I enjoy. Chronic illness and experience of life and death situations give you the power of perspective and the advantage of being able to cherish the important things in life.
As the fates would have it i'm perhaps not the luckiest person in the smaller aspects of everyday life, the universes reminder that just because you live with an illness you're not automatically immune or given a break from the absurdly annoying ticks that irritate your daily routine. Like, for example, despite many a morning greeting our lovely neighbours on the driveway in rain sleet or snow as I venture to work, it is this morning that my fit and healthy husband is offered a lift up the road and most of the way to the train station by our retired neighbours next door but one.. And it's me 30 minutes later speed walking in the freezing rain to my pre work dentist appointment with Mark's jolly post oap joy ride words ringing in my ears "don't forget the brolly love, it is pretty nasty out"
That has pretty much set the tone for the day. The dentist was somehow running 15mins late on her 2nd appointment of the day, I bumped smack bang into my arch enemy from my old job whilst dashing my little lupie legs from the dentist to work, once at work dropped a box of lightbulbs that smashed everywhere, dropped a full box of baby grows on the stockroom floor and then poked myself in the eye with a display prong whilst bending down to merchandise all the Christmas stock... All before 12pm.
Sods law dictates that the oddest and inconvenient circumstance happens to us with no synchronicity or value to that time or specific occasion, it happily holds hands with chance and unluckiness making the worst out of one particular day week or month.
At this moment on time I feel i'm pretty much on par with luck, she has taken away but slowly she is starting to give back, proving after all she may not be a lady all the time but will catch you a break when she's in the right mood.
Monday Monday...
I've been adamant from the start that writing this blog I wanted it to be personal, with article based posts reflecting personal experiences, thoughts and key issues that affect me and perhaps other lupus suffers. I didn't want to infringe on the widely more successful lupus bloggers out there by launching another blog of daily musings and helpful advice, I fear I may bore people to death with the vastly underwhelming activities of my everyday life! I also felt it better to avoid any vague possibility that I may start to get stuck and subconsciously fill my posts with vast amounts of useless guff that nobody wants to read. So I aimed for the approach to write longer pieces on a weekly basis that I could build throughout the week, a growth of ideas and reflections that I felt passionate about, dancing around in my brain like giddy elves screaming 'write me down yippee!' and so I obliged with snatched moments of scrawling whilst spilling my tuna sandwich on the staffroom table.
But this week I thought I'd try a break from the norm and try and get out a few of my lupie ramblings on a daily basis.. Mainly inspired by my husbands recent 5.30am starts in order to compete his storytelling ideas and creativity with other NanoWrimo participants.
So Monday, so far so good. As with every other working day i'm up 30 mins earlier than I really need to be.. The reason? The wonderful delights of my medicine box require my attention to make me resemble something human like for work. It goes a little something like this.
1 tablet at 7am to prepare my body for the onslaught of multiple medications at 7.45.
A gap for a bowl of porridge in between.
20 to 25mins rest before leaving so they don't turn my stomach into a knotted, churning time bomb.
Today like most days I feel like a walking advertisement for pharmaceutical companies - I could potentially earn a fortune if I was brave enough to wear one of those sandwich board signs saying "POWERED BY STEROIDS, IMMUNOSUPRESSANTS & OTHER DRUGS" all the while doing a silly dance and showing everyone how energetic I am that day.
Anyway, Monday is usually always a good day, i'm either rested from Sunday dozing on the couch or by a short and sweet shift at work that gets me home in time for the channel 5 Sunday afternoon movie. So my parting thought for today? Use Mondays to your advantage, there's plenty of days later in the week to feel tired.
Friday 1 November 2013
The Waiting Game
“When obstacles arise, you change your direction to reach your goal, you do not change your decision to get there.” - Zig Ziglar
For all my lovely friends and family with their beautiful babies, the following words are not an act of resentment, indignation or malice, these words are merely my selfish catharthis. I speak truthfully and with love to you and the incredible families you have created. - Claire
'Do you have children?'
'No, no I don't.'
I see her glance at my left hand, and she spots wedding and engagement rings awkwardly clutched around a luminous yellow crayon.
'Oh its just you seem so natural and at ease' she smiles.
'Oh you know, lots of brothers, sisters, nieces, nephews and godchildren ha ha ha,' I joke. But my game face slips and I wonder for a second if she sees through the facade and noticed the slight prickle of sadness behind my refined comedy routine.
It's not a devastating, encircling sadness that plagues my every thought and I'm keen to not be perceived as a teary, broody 30+ woman desperate for a baby, but in the same thought it's paramount that people see what it's like for the those women waiting at the sidelines. It is not the easiest to explain unless you have been in that situation yourself. I can only describe it as a twinge, a flicker of envy and self pity when you see those around you announcing the news you seemingly have waited forever to announce, a pang of annoyance that they have it before you, that yet in the same cruel swipe breaks your heart at the momentary thought of resentment against those you love the most. And then almost as quick as it comes, it passes, your day goes on and the excitement of a new baby coming is as much the same as everyone else. What's hardest is the self conscious perception that all eyes are on you, the paranoia of pity from those around you when news spreads of another pregnancy in the family or circle of friends, the phobia that you're loving, loyal friends will know those momentary malignant thoughts when really, you are happy for them. Just unhappy in yourself.
There have been several factors delaying our opportunity to have a family, notably to begin with it was the simple basics, the groundwork of stability and endurance that Mark has always known and that I have always craved since being together.. marriage and a home. Old fashioned and unessential some may say, but important to us both. So many people have said 'if you wait 'til you have enough money to have a baby, you'll never have one'. Quite cruel, abrasive words to someone wanting to be prepared as possible, to retain a normality and to refuse to struggle as my family did.
Once the marriage side of things was almost in place, we were of course thrown off plan with my health, 6 months of not working + 1 year of working part time + 3 months of not working at all tends to diminish the savings account and we were back to square one.
Those who know us well as a couple know thoroughly our situation in regards to having a child, others have probably made an accurate assumption and choose not to bring it up, either through fear I may burst into tears (i won't by the way) or because they understand how hard it is and that I don't need the constant reminder that it could be, and most likely will be a difficult journey for us. Now at the not so tender age of 31 I am well and truly hearing the clichéd 'tick tock' of my biological clock as a deafening tone and it's giving me tinnitus.
According to statistics I have a mere 3 years and 9 months before my fertility rate rapidly declines to 35% (its 50% up until your 30's) but that of course doesn't take into consideration the seven rounds of chemo based nasties i've had pumped into me and the amount of potential mini Boardman's it has incinerated.
The reality of what I have to put my body through to have a baby is truly terrifying. I risk plunging myself head first back into the nightmare of 2011, the nightmare of drips, wires, sickness and long stays in hospital combined with a new nightmare of high risk miscarriage, premature birth, pre-eclampsia and renal failure worse than the first time. But whether it be mother nature or completely selfish denial, there is absolutely no doubt in my mind that this is what I am prepared to undertake, no off switch or stop button, no reasoning otherwise.
Until then we work and we save, we go without luxuries, nights outs, holidays and weekends away, we work, we save, we watch everyone else achieve their goal of being parents, we smile, we be happy for them and we hope, with realistic propensity, that not long now, that will be us.
Thursday 24 October 2013
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.
Wednesday 9 October 2013
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.
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.
Sunday 29 September 2013
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.
Friday 20 September 2013
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.'
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.
Wednesday 4 September 2013
O ye of little faith
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
Wednesday 10 July 2013
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.
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.
Sunday 16 June 2013
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.
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.
Wednesday 12 June 2013
Life on pause VS Survival of the fittest
I apologise for the distinct lack of my indulgent ramblings recently, it's been a busy and tiring few weeks. The excuse again? It is my stubborn insistence (along with the financial benefits of saving a deposit for our own home) to work full time like a normal person. Unfortunately yet another BOGOF offer of my situation means that after 9 hours on my feet running after 2 year olds and selling the parents their summer wardrobes - which, just for record I thoroughly adore! - I find it pretty hard to string a sentence together and so the blog writing goes on the back burner, and the reality of cooking Mark's tea and putting a load of washing in before my knees buckle takes over. I call it my reserve battery power, an extra 'spoon' saved to the end of the day (God bless the spoon theory).
Another reason of course is as the weeks tick by for my beautiful friend Fiona Stewart and her imminent pink bundle of joy, the quicker my knitting needles are whipping in and out and covering my living room floor in multi coloured wool strand cut offs. This is probably the more deserving excuse for my blog distraction, I am seemingly addicted to making (and buying) outfits for this little girl, it's far too exciting!
Other than procrastinating via mass knitting, I have found it genuinely difficult to write these past few weeks, my mind a little clogged with stresses of everyday life. I've felt overwhelmed with trying to maintain some normality and once again forgetting that I am not normal and cannot carry on regardless like those alongside me.
This truth in itself has been getting to me, again like so often before I have felt that black cloud looming not far in the distance creating shadows and a cool breeze in my little patches of sunshine, obscuring my view of the landscape ahead by putting a block down in front of me like a red 'no through road' sign. Then I feel like I am standing still and watching a film of other peoples lives on fast forward, and as I have felt from time to time for two and a half years now, I feel like I am going in slow motion. I am not unhappy, not at all, but I feel very observant and aware of the lives being lived and progressing forward in front of me. I know that life is not a race, sometimes you are ahead, sometimes you are behind and the only competitor you face is yourself - as the saying goes. But it can be disheartening being in the back row for such a long time, perhaps I am a sore loser when lagging behind but sometimes it would be nice to be in 3rd place not 4th.
We can't see inside peoples minds or lives, but it amazes me how some people manage to coordinate so many things in their lives and seemingly breeze from one project or activity to another without a smudge of makeup, a complaint of tiredness and a full iPhone battery. Are these people filling a huge emotional gap in their lives with zumba classes on a Monday, yoga on Tuesday, cinema with their (i hate the term) BFF on Wednesday, gym Thursday, drinks after work Friday and a trip to Manchester shopping on Saturday. Are they leading a perfect life? Or have these people just perfected the art of living life to its fullest, flitting from here to there absorbing an abundance of experiences. Thus surviving the drain and monotony of everyday life, proving they are the fittest by breaking the routine we all cling to for normality.
As a sufferer of a chronic illness I envy the energy of those able to incorporate just two extra curricula activities as well as work full time. But do I notice these things more because I can't do them to the frequency others can? I do believe that there is an irony to the whole situation and I apologise in advance for morbidity if of it. None of us know really when our time is up, but I find it odd that those blessed with health and longevity have energy and chances to cram as much into their lives as possible, when those that are much more aware of their own mortality and limited by a chronic illness, aren't always blessed with the ability to fill each day with exciting opportunities.
Another reason of course is as the weeks tick by for my beautiful friend Fiona Stewart and her imminent pink bundle of joy, the quicker my knitting needles are whipping in and out and covering my living room floor in multi coloured wool strand cut offs. This is probably the more deserving excuse for my blog distraction, I am seemingly addicted to making (and buying) outfits for this little girl, it's far too exciting!
Other than procrastinating via mass knitting, I have found it genuinely difficult to write these past few weeks, my mind a little clogged with stresses of everyday life. I've felt overwhelmed with trying to maintain some normality and once again forgetting that I am not normal and cannot carry on regardless like those alongside me.
This truth in itself has been getting to me, again like so often before I have felt that black cloud looming not far in the distance creating shadows and a cool breeze in my little patches of sunshine, obscuring my view of the landscape ahead by putting a block down in front of me like a red 'no through road' sign. Then I feel like I am standing still and watching a film of other peoples lives on fast forward, and as I have felt from time to time for two and a half years now, I feel like I am going in slow motion. I am not unhappy, not at all, but I feel very observant and aware of the lives being lived and progressing forward in front of me. I know that life is not a race, sometimes you are ahead, sometimes you are behind and the only competitor you face is yourself - as the saying goes. But it can be disheartening being in the back row for such a long time, perhaps I am a sore loser when lagging behind but sometimes it would be nice to be in 3rd place not 4th.
We can't see inside peoples minds or lives, but it amazes me how some people manage to coordinate so many things in their lives and seemingly breeze from one project or activity to another without a smudge of makeup, a complaint of tiredness and a full iPhone battery. Are these people filling a huge emotional gap in their lives with zumba classes on a Monday, yoga on Tuesday, cinema with their (i hate the term) BFF on Wednesday, gym Thursday, drinks after work Friday and a trip to Manchester shopping on Saturday. Are they leading a perfect life? Or have these people just perfected the art of living life to its fullest, flitting from here to there absorbing an abundance of experiences. Thus surviving the drain and monotony of everyday life, proving they are the fittest by breaking the routine we all cling to for normality.
As a sufferer of a chronic illness I envy the energy of those able to incorporate just two extra curricula activities as well as work full time. But do I notice these things more because I can't do them to the frequency others can? I do believe that there is an irony to the whole situation and I apologise in advance for morbidity if of it. None of us know really when our time is up, but I find it odd that those blessed with health and longevity have energy and chances to cram as much into their lives as possible, when those that are much more aware of their own mortality and limited by a chronic illness, aren't always blessed with the ability to fill each day with exciting opportunities.
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Tuesday 21 May 2013
Around the world in 80 Facebook updates.
On Friday May 10th, I sat in the staffroom at work and as I scrolled down my Facebook feed I felt that familiar lump in my throat - something I get a lot these days, i'm such a cry baby - and began to well up as post after post from my friends and family appeared on the screen reiterating my update earlier in the day that it was world Lupus day. World Lupus Day is the one day a year that all of us 'lupies' around the globe unite with one conscious thought...... to annoy all you fit and healthy people and bombard our Facebook and twitter feeds with lupus facts, information, funny pictures, poems and yet more encouragement to take note of what we have have to deal with or even better, take a minute and have a quick read about it.
As I sat there on my coffee break halfway through the morning I was overwhelmed already by the response, re-sharing of this blog, comments showing their support and directions to the charity page. By 11am I had already seen 5 shares and reposts, that's 5 friends that had shared the information with between 100 - 500 of their own friends, that's 500 - 2500 that will have seen the word LUPUS in their newsfeed that day, 500 - 2500 people that could potentially have a look and see what it is, 500 - 2500 more people that will understand better how debilitating the disease is, 500 - 2500 more people who will care and know more about Lupus when perhaps they meet someone with the disease.
The point i'm trying to get across is that you may not think that your contribution of sharing or mentioning it would matter much, but actually you can see for yourself from the example above how many people you could reach.
Everyday we have to explain to somebody new what this illness is and how it affects us, everyday we are met with blank stares and expressions when you mention the word Lupus, everyday you get the distinct impression that people don't quite understand how serious it is just by telling them. I don't blame them, but perhaps they would understand more if they went away and read about it, for some strange reason there is something more believable about reading something in black and white than taking it at face value from someone you have spoken too.
I know at times to a lot of people i may sound repetitive, sometimes i can almost hear the eyes rolling in peoples head as i waffle on about Lupus yet again, but the reason is because there is always somebody who doesn't know yet. I can't impress on people enough how important awareness is, it's so easy to ignore the information or words in front of you and think 'it doesn't affect me or my family so why should i be interested?' I mean, we all have busy lives and our own problems don't we?
A survey conducted by the LFA (Lupus Foundation of America) of 1000 adults concluded that 62% of people had either only heard of the word LUPUS or had no knowledge of what it was at all and this is a country that is far more medically advanced in the treatment of lupus, lupus research and awareness, so can you imagine what results would be produced here in the UK?
When i first started in my new job, i filled in a medical declaration form to inform them of all the medication i receive, my medical history and how it could affect my employment. A few days into the role i was taken aside my regional manager who assured me she understood Lupus, the medications i have to take and asked my what she could do to help. This simple exchange of words blew me away, such a basic act from an almost stranger at that point, the fact they had taken a second just to say i understood, i know how bad it is, you don't have to explain - restored my faith that people can and will use an opportunity to learn.
Awareness is understanding, it's open mindedness and consideration of others, it makes us better friends, employers and colleagues. Just having that one piece of empathy and understanding or even just knowing that one fact when someone tells you something serious or important about themselves, can make their whole day.
If we could take anything away from May 10th, it should be that taking one minute out of your day to learn something new, could change someone else's day for the better. If we took that minute every week how many days could we change for people in the future?
As I sat there on my coffee break halfway through the morning I was overwhelmed already by the response, re-sharing of this blog, comments showing their support and directions to the charity page. By 11am I had already seen 5 shares and reposts, that's 5 friends that had shared the information with between 100 - 500 of their own friends, that's 500 - 2500 that will have seen the word LUPUS in their newsfeed that day, 500 - 2500 people that could potentially have a look and see what it is, 500 - 2500 more people that will understand better how debilitating the disease is, 500 - 2500 more people who will care and know more about Lupus when perhaps they meet someone with the disease.
The point i'm trying to get across is that you may not think that your contribution of sharing or mentioning it would matter much, but actually you can see for yourself from the example above how many people you could reach.
Everyday we have to explain to somebody new what this illness is and how it affects us, everyday we are met with blank stares and expressions when you mention the word Lupus, everyday you get the distinct impression that people don't quite understand how serious it is just by telling them. I don't blame them, but perhaps they would understand more if they went away and read about it, for some strange reason there is something more believable about reading something in black and white than taking it at face value from someone you have spoken too.
I know at times to a lot of people i may sound repetitive, sometimes i can almost hear the eyes rolling in peoples head as i waffle on about Lupus yet again, but the reason is because there is always somebody who doesn't know yet. I can't impress on people enough how important awareness is, it's so easy to ignore the information or words in front of you and think 'it doesn't affect me or my family so why should i be interested?' I mean, we all have busy lives and our own problems don't we?
A survey conducted by the LFA (Lupus Foundation of America) of 1000 adults concluded that 62% of people had either only heard of the word LUPUS or had no knowledge of what it was at all and this is a country that is far more medically advanced in the treatment of lupus, lupus research and awareness, so can you imagine what results would be produced here in the UK?
When i first started in my new job, i filled in a medical declaration form to inform them of all the medication i receive, my medical history and how it could affect my employment. A few days into the role i was taken aside my regional manager who assured me she understood Lupus, the medications i have to take and asked my what she could do to help. This simple exchange of words blew me away, such a basic act from an almost stranger at that point, the fact they had taken a second just to say i understood, i know how bad it is, you don't have to explain - restored my faith that people can and will use an opportunity to learn.
Awareness is understanding, it's open mindedness and consideration of others, it makes us better friends, employers and colleagues. Just having that one piece of empathy and understanding or even just knowing that one fact when someone tells you something serious or important about themselves, can make their whole day.
If we could take anything away from May 10th, it should be that taking one minute out of your day to learn something new, could change someone else's day for the better. If we took that minute every week how many days could we change for people in the future?
Wednesday 8 May 2013
A little history... Part 2
On 10th February 2011 exactly 4 months to the day i was due to get married I was told my kidneys were failing, or in medical terms stage 4/5 renal failure with proliferative overlap. This monster of a disease had silently crept past the basic medication I had been taking for just over a year and started eating slowly away at my kidneys. 4 months before my wedding I was slowly filling with fluid as my body refused to process the toxins out. 4 months before my wedding i was told i wouldn't work for a year. 4 months before my wedding i was told i had to have 6 months of a chemotherapy based treatment and my hair would fall out. 4 months before my wedding i was told there was a chance my fertility could be rapidly reduced. 4 months before my wedding i wanted to just close my eyes and go to sleep and wake up when it was all over.
After the biopsy and diagnosis i was kept in hospital to commence my first round of treatment the next day. I was moved to a short stay ward in probably one of the oldest parts of the hospital. It was gloomy and cluttered as i was wheeled down the corridor, i remember the dull yellow lighting giving every object and person a sickly jaundice glow. All the time thinking is this really real? Is this me lying in this bed? The infusion was a round of methylprednisolone (steroids) first then a drip and a friendly nurse with a bright blue plastic bag with 'Cytotoxic' written on it, out of the bag came a huge oversized syringe of poison... connected to the drip and pumped into me.
For 3 days after i vomited an array of rainbow colours, mostly blue. I remember my sister standing at the bottom of my hospital bed in horror. I remember the atrocious smell of hospital food that i could not stand to touch, i remember my friend Catherine bringing me lots of bubble bath and Lush soaps for when i got home. I remember the smell of the blue palmolive shower gel in my hospital bag that the nurse put in the bath for me, a smell i can't bear to this day and will bypass in the shops. I remember Chloe, a nurse who was a friend of a colleague, but has since become a great friend of my own, coming to see me on her break and stroking my hand, battered and bruised from various attempts at getting a canula in. I remember managing to walk to the Costa coffee in the hospital with Mark to get him a piece of lemon drizzle cake as it was his birthday, the same evening roaring with tears knowing he was sat in the hospital cafeteria eating his dinner alone on his birthday - a thought to this day that always makes me cry, no matter that over two years have passed and lots of wounds have healed.
I was released on Wednesday 16th and taken home, i remember the lovely Lynnie coming to see me from work with a great big Orchid and Betty's Macaroon's. I remember flowers arriving from all corners of the country, work head office, aunties, old friends, i remember i had flowers on the fireplace hearth, windowsill, tables, in my bedroom. They just kept on coming, i honestly didn't realise how much people cared.
Aside from my family and Mark, one thing that recurs most amongst all these memories are those of my friends, people whom i thought were and turned out not to be, people i knew who would be there and then did so without question, people who i never thought would be first to offer help and surprised me with their kindness and then people who just thought that they should show their face once to feel better about themselves, make them feel like a good person and never bother again. The old sayings are the best and when times are tough you really do find out who your real friends are.
To Fiona, who changed her day off to sit with me while they pumped poison through my veins, painted my toenails for me afterwards then fell asleep on my bed whilst watching The Lovely Bones, who held my hand in my mums living room as i sobbed at the clumps of hair in my hands 4 weeks before the wedding.
To Catherine, for the hours spent doing jigsaw puzzles, knitting and watching your Desperate housewives box sets, for the car trips to the hospital, bringing me edible food, again for sitting through one of those nasty chemo sessions and helping me eating fruit pastilles to help take the bitter taste out of my mouth.
To Kirsty, for the cups of tea (i still have the meercat mug and coaster!), the bandana to cover up my ever increasingly baldy head and for the spins around the hospital in my wheelchair to cheer me up!
To my lovely ladies from Links, Jodie, Hannah, Lynnie. I couldn't wish for better colleagues.
To fiona, Dave and a very little Lyra at the time- thanks for the tea and cake and Lyra smiles!
To Emily and Ben - the tulips lasted for weeks!
To Becky and the Kids for restoring some normality and treating me like a human
I could go on forever to the people that i owe a debt too, i'm sorry if you didn't get a mention this time but i'm sure there'll be lots of opportunity for a mention, i'm afraid there's a lot of backlog in this brain of mine... haha stay tuned..........
After the biopsy and diagnosis i was kept in hospital to commence my first round of treatment the next day. I was moved to a short stay ward in probably one of the oldest parts of the hospital. It was gloomy and cluttered as i was wheeled down the corridor, i remember the dull yellow lighting giving every object and person a sickly jaundice glow. All the time thinking is this really real? Is this me lying in this bed? The infusion was a round of methylprednisolone (steroids) first then a drip and a friendly nurse with a bright blue plastic bag with 'Cytotoxic' written on it, out of the bag came a huge oversized syringe of poison... connected to the drip and pumped into me.
For 3 days after i vomited an array of rainbow colours, mostly blue. I remember my sister standing at the bottom of my hospital bed in horror. I remember the atrocious smell of hospital food that i could not stand to touch, i remember my friend Catherine bringing me lots of bubble bath and Lush soaps for when i got home. I remember the smell of the blue palmolive shower gel in my hospital bag that the nurse put in the bath for me, a smell i can't bear to this day and will bypass in the shops. I remember Chloe, a nurse who was a friend of a colleague, but has since become a great friend of my own, coming to see me on her break and stroking my hand, battered and bruised from various attempts at getting a canula in. I remember managing to walk to the Costa coffee in the hospital with Mark to get him a piece of lemon drizzle cake as it was his birthday, the same evening roaring with tears knowing he was sat in the hospital cafeteria eating his dinner alone on his birthday - a thought to this day that always makes me cry, no matter that over two years have passed and lots of wounds have healed.
I was released on Wednesday 16th and taken home, i remember the lovely Lynnie coming to see me from work with a great big Orchid and Betty's Macaroon's. I remember flowers arriving from all corners of the country, work head office, aunties, old friends, i remember i had flowers on the fireplace hearth, windowsill, tables, in my bedroom. They just kept on coming, i honestly didn't realise how much people cared.
Aside from my family and Mark, one thing that recurs most amongst all these memories are those of my friends, people whom i thought were and turned out not to be, people i knew who would be there and then did so without question, people who i never thought would be first to offer help and surprised me with their kindness and then people who just thought that they should show their face once to feel better about themselves, make them feel like a good person and never bother again. The old sayings are the best and when times are tough you really do find out who your real friends are.
To Fiona, who changed her day off to sit with me while they pumped poison through my veins, painted my toenails for me afterwards then fell asleep on my bed whilst watching The Lovely Bones, who held my hand in my mums living room as i sobbed at the clumps of hair in my hands 4 weeks before the wedding.
To Catherine, for the hours spent doing jigsaw puzzles, knitting and watching your Desperate housewives box sets, for the car trips to the hospital, bringing me edible food, again for sitting through one of those nasty chemo sessions and helping me eating fruit pastilles to help take the bitter taste out of my mouth.
To Kirsty, for the cups of tea (i still have the meercat mug and coaster!), the bandana to cover up my ever increasingly baldy head and for the spins around the hospital in my wheelchair to cheer me up!
To my lovely ladies from Links, Jodie, Hannah, Lynnie. I couldn't wish for better colleagues.
To fiona, Dave and a very little Lyra at the time- thanks for the tea and cake and Lyra smiles!
To Emily and Ben - the tulips lasted for weeks!
To Becky and the Kids for restoring some normality and treating me like a human
I could go on forever to the people that i owe a debt too, i'm sorry if you didn't get a mention this time but i'm sure there'll be lots of opportunity for a mention, i'm afraid there's a lot of backlog in this brain of mine... haha stay tuned..........
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