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.
Sunday, 16 June 2013
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..........
Tuesday, 23 April 2013
A little history..... Part 1
I apologise in advance to all those reading this that have heard the events time and time again or were unfortunate to see it all first hand, but i thought it important to fill in the gaps for those that are completely new to my story and how things came to be.
I was diagnosed in December 2009 with MCTD (mixed connective tissue disease) and borderline Lupus (SLE). The previous 6 months to a year before hand had been the turning point for me starting to realise that something in my body just wasn't working right, but in hindsight i can track back odd little symptoms way back to 2006. Unexplained aches and pains, sore patches of skin that would appear and disappear that i thought was psoriasis, stomach problems that i thought was a touch of IBS, and most significantly joint pain and problems. Gradually the issues with my joints got worse, there'd be times when i couldn't bend my fingers or wrist or straighten my arm without red hot pain shooting through it and Mark (my now lovely husband - hello darling !) would have to dress me... this was 2007.
Doctors poo poo'd me off with pain killers and anti inflammatories saying i may have a touch of arthritis. I carried on regardless and the symptoms gradually increased, more pain killers and more shrugging shoulders at the GP surgery.
As 2009 dawned so did the awful fatigue, a feeling beyond tired it's like a black cloak that knocks you over, your hands and legs shake, you feel sick and there's nothing you can do but go to bed and hope it goes away. Then the fever and chills kicked in, again it would put me in bed shivering like i had the flu yet sweating unbelievable.. in the morning i'd sometimes feel better, refreshed but the rash had started to leave its mark, blotchy little butterfly kisses dotting my neckline after the fevers.
The final straw came in late November that year, after the rash had become hugely more apparent, spread across my neck and down my arms, and a near collapse at work I picked up the phone and requested an emergency appointment that day. By a strange coincidence the only emergency appointment left was with a GP whom i later found out had a history working in Rheumatology before going into general practice. She was sympathetic and astute to the symptoms i was experiencing and demanded a full run of blood tests. 3 weeks later i was sat in the same room again on my lunch break expecting her to tell me i had hormone problems or a thyroid issue. When she mentioned the word Lupus i had absolutely no idea the seriousness of what she meant, "right ok" i said. She printed a lot of information off looked at me with sad eyes and told me i was being referred to the hospital for more tests. I returned to work and went about my business, i made the calls to Mark, Mum and Dad and carried on... Now i wish i could go back and scream at 2009 claire and say "DO YOU KNOW HOW SERIOUS THIS IS!" but in truth i didn't really mind, i'd heard of it and knew the basics but didn't quite really understand. Everyone else seemed to be more worried than me and to this day I honestly cannot explain my complacency, i wasn't in denial and i wasn't trying to be brave i just.. was.
After visits to rheumatology i was fired up with a cortisone injection to help my joints and given a prescription for hydroxychloroquine, the basic bread and butter of MCTD/lupus medications and things seemed relatively stable for over a year.
Late January 2011 and 5 months before my wedding i started to feel very sick, puffy face, eyes, a cough that would not shift and despite being on a new years / pre wedding countdown diet i had somehow put on 7lbs.
NEXT Just a blur:
Alarms bells, doctors, urine test, a flapping GP, something about kidneys, a phone call to the hospital, packed off in a taxi to the hospital, more blood tests, a long wait, lots of serious faces, more stuff about kidney problems, kidneys not working properly, lupus antibodies are a perhaps attacking, must have kidney biopsy to confirm, one weeks wait, legs and stomach start to swell with fluid, start being sick, go for biopsy, can't have biopsy blood pressure is soaring, medication for a week to bring it down come back next week for biopsy, strapped to a table, big clamp on my back, kidney biopsy taken, lying flat still for 6 hours, kidney biopsy comes back, brand new doctor comes in with serious face, think i was on my own? can't remember, kidneys are failing, we're keeping you in to stabilise you, you've got to have 6 months of a chemo based therapy or you're going to be in big trouble.................. pause.
I was diagnosed in December 2009 with MCTD (mixed connective tissue disease) and borderline Lupus (SLE). The previous 6 months to a year before hand had been the turning point for me starting to realise that something in my body just wasn't working right, but in hindsight i can track back odd little symptoms way back to 2006. Unexplained aches and pains, sore patches of skin that would appear and disappear that i thought was psoriasis, stomach problems that i thought was a touch of IBS, and most significantly joint pain and problems. Gradually the issues with my joints got worse, there'd be times when i couldn't bend my fingers or wrist or straighten my arm without red hot pain shooting through it and Mark (my now lovely husband - hello darling !) would have to dress me... this was 2007.
Doctors poo poo'd me off with pain killers and anti inflammatories saying i may have a touch of arthritis. I carried on regardless and the symptoms gradually increased, more pain killers and more shrugging shoulders at the GP surgery.
As 2009 dawned so did the awful fatigue, a feeling beyond tired it's like a black cloak that knocks you over, your hands and legs shake, you feel sick and there's nothing you can do but go to bed and hope it goes away. Then the fever and chills kicked in, again it would put me in bed shivering like i had the flu yet sweating unbelievable.. in the morning i'd sometimes feel better, refreshed but the rash had started to leave its mark, blotchy little butterfly kisses dotting my neckline after the fevers.
The final straw came in late November that year, after the rash had become hugely more apparent, spread across my neck and down my arms, and a near collapse at work I picked up the phone and requested an emergency appointment that day. By a strange coincidence the only emergency appointment left was with a GP whom i later found out had a history working in Rheumatology before going into general practice. She was sympathetic and astute to the symptoms i was experiencing and demanded a full run of blood tests. 3 weeks later i was sat in the same room again on my lunch break expecting her to tell me i had hormone problems or a thyroid issue. When she mentioned the word Lupus i had absolutely no idea the seriousness of what she meant, "right ok" i said. She printed a lot of information off looked at me with sad eyes and told me i was being referred to the hospital for more tests. I returned to work and went about my business, i made the calls to Mark, Mum and Dad and carried on... Now i wish i could go back and scream at 2009 claire and say "DO YOU KNOW HOW SERIOUS THIS IS!" but in truth i didn't really mind, i'd heard of it and knew the basics but didn't quite really understand. Everyone else seemed to be more worried than me and to this day I honestly cannot explain my complacency, i wasn't in denial and i wasn't trying to be brave i just.. was.
After visits to rheumatology i was fired up with a cortisone injection to help my joints and given a prescription for hydroxychloroquine, the basic bread and butter of MCTD/lupus medications and things seemed relatively stable for over a year.
Late January 2011 and 5 months before my wedding i started to feel very sick, puffy face, eyes, a cough that would not shift and despite being on a new years / pre wedding countdown diet i had somehow put on 7lbs.
NEXT Just a blur:
Alarms bells, doctors, urine test, a flapping GP, something about kidneys, a phone call to the hospital, packed off in a taxi to the hospital, more blood tests, a long wait, lots of serious faces, more stuff about kidney problems, kidneys not working properly, lupus antibodies are a perhaps attacking, must have kidney biopsy to confirm, one weeks wait, legs and stomach start to swell with fluid, start being sick, go for biopsy, can't have biopsy blood pressure is soaring, medication for a week to bring it down come back next week for biopsy, strapped to a table, big clamp on my back, kidney biopsy taken, lying flat still for 6 hours, kidney biopsy comes back, brand new doctor comes in with serious face, think i was on my own? can't remember, kidneys are failing, we're keeping you in to stabilise you, you've got to have 6 months of a chemo based therapy or you're going to be in big trouble.................. pause.
Wednesday, 10 April 2013
gaining perspective
You would think I would know by now that you can't plan a thing or take things for granted when you have Lupus. I've been working full time for over four months now (Yay go me...!) and have had every single cold going thanks to my daily interactions with the general publics offspring, whom are indeed very beautiful, but are at the same time toddling germ disseminators (no offence intended) that play havoc with my compromised immune system! A form of self torture perhaps or just an occupational hazard?
Anyway i'm rambling back to the point i started with: worked hard, been ill ridiculous amount of times, not had a day off (hero complex), worked crimbo = looking forward to a week off to see my nephews and have a few days to myself, do jobs i'm too tired to do when working and generally recharge. Lovely yes? * family fortunes style buzzer noise*
After spending three lovely days with my nephews I am rewarded with so four days of chronic nausea and lethargy and not want to touch and ounce of food, at which point left me with precisely 1 day to hopefully recover and get my strength back before i had to go back to work on Sunday. Holiday over for me. Then by the grace of god another miracle happened! Woke up monday with my fifth cold and bad chest since the beginning of December. Now i don't know about you but i think that is a personal best! an average of 0.4 illness per week or 2.4 per month (yes I did the maths), i certainly hit the jackpot with this one.
You see the thing about Lupus is when he comes to the party, he usually brings a few of his mates along too, and i'm not just talking about colds, flu and stomach bugs - they're just gatecrashers that turn up occasionally, annoying but easily distracted by the next party and soon move on - Unfortunately there's some big boys that turn up, make a real mess and you need to get the professionals in to help clear out.
I know the best of us have to deal with being struck down at the most inconvenient of times, who hasn't been ill as soon as we finish work for christmas - but when you've had to rearrange and change your whole lifestyle already and it continues to happen with unfair regularity you can't help but feel that someone is starting to have a laugh at your expense. Its these times that yet again I have to really dig deep to gain perspective on the whole situation, to realise that things have been far worse. But i'll be the first to admit it's hard, when there's something new to deal with my health nearly every week it's easily to slip into mindset of believing there's somebody up there having a big laugh. Thankfully i have a wonderful husband that keeps me very grounded and friends that do remind me quite often they 'do actually give a shit'.
I probably sound like a broken record by now but its very true that there is always someone worse off out there or hurting more. People proportion blame for things that are wrong in their lives far too broadly and with misplaced fact - what a difference it would make if they actually cherished the smaller things and valued what they had in front of them. Perhaps then if there really was blame for something they could pinpoint the problem directly, you can't blame a whole hospital for the failings of one doctor. If i was angry and tried to blame someone or something for all that happened to me and how its taken my life right off track, i'd have no friends, no job and nothing worth trying to hold onto.
One of my major frustrations is peoples lack of perspective, even with the smaller things, why get angry at the bus being late when you know your friend is ill? why get angry about what the bitch at work has said when you get to go home to a warm house and loving husband? worry about your health, your family's safety and how your friends are, not whether you can afford a holiday this year.
Can you get this type of perspective without experiencing anything awful or traumatic or character building in your life? I honestly don't know, i think there are those who have in incredibly open mind and can easily see without a glimpse or reminder and i think there's those who can by seeing it through the eyes of someone else, inspiration making them see the light of day.
You see the thing about Lupus is when he comes to the party, he usually brings a few of his mates along too, and i'm not just talking about colds, flu and stomach bugs - they're just gatecrashers that turn up occasionally, annoying but easily distracted by the next party and soon move on - Unfortunately there's some big boys that turn up, make a real mess and you need to get the professionals in to help clear out.
I know the best of us have to deal with being struck down at the most inconvenient of times, who hasn't been ill as soon as we finish work for christmas - but when you've had to rearrange and change your whole lifestyle already and it continues to happen with unfair regularity you can't help but feel that someone is starting to have a laugh at your expense. Its these times that yet again I have to really dig deep to gain perspective on the whole situation, to realise that things have been far worse. But i'll be the first to admit it's hard, when there's something new to deal with my health nearly every week it's easily to slip into mindset of believing there's somebody up there having a big laugh. Thankfully i have a wonderful husband that keeps me very grounded and friends that do remind me quite often they 'do actually give a shit'.
I probably sound like a broken record by now but its very true that there is always someone worse off out there or hurting more. People proportion blame for things that are wrong in their lives far too broadly and with misplaced fact - what a difference it would make if they actually cherished the smaller things and valued what they had in front of them. Perhaps then if there really was blame for something they could pinpoint the problem directly, you can't blame a whole hospital for the failings of one doctor. If i was angry and tried to blame someone or something for all that happened to me and how its taken my life right off track, i'd have no friends, no job and nothing worth trying to hold onto.
One of my major frustrations is peoples lack of perspective, even with the smaller things, why get angry at the bus being late when you know your friend is ill? why get angry about what the bitch at work has said when you get to go home to a warm house and loving husband? worry about your health, your family's safety and how your friends are, not whether you can afford a holiday this year.
Can you get this type of perspective without experiencing anything awful or traumatic or character building in your life? I honestly don't know, i think there are those who have in incredibly open mind and can easily see without a glimpse or reminder and i think there's those who can by seeing it through the eyes of someone else, inspiration making them see the light of day.
Tuesday, 26 March 2013
Cause to complain..
A good friend said to me the other day that she couldn't understand why she had been so upset at the death of someone she hadn't seen for many years, the tragic circumstances refreshing the need to embrace what was truly important to her and not moan about the small things in life.
Over the past few days I have logged into Facebook and saw a long list of complaints, people moaning and groaning at the simple miseries of life and wondered how many people are just having a gripe to draw a bit of attention to themselves and how many of them actually feel hard done by? I am not in any way sitting in judgement, by all means i have been just as guilty of this self indulgence. But it does raise the question of who actually has the right to complain? do we ignore the people that actually do? because we are so swamped with our own selfish complaints we are neglecting those that are more deserving of attention?
I in no way see my circumstances as exceptional and spend most of days thinking how to be normal and avoid moaning too much about by illness. As a person with a chronic disease you are often plagued by the paranoia of other peoples perception of you as a complainer, moaner or pessimist, but shouldn't we be allowed to more than most?
'Normal' life is hard enough for everyone, juggling a full time job, children, broken down cars, sleepless nights, bad colds and going into your overdraft halfway through the month, but combine those pressures with hospital appointments, severe fatigue, taking 9 types of medication in the morning, paying for the prescriptions because they won't make you exempt, the fear you are a ticking time bomb of disease that is unpredictable and ruthless in its attack, the question mark over your ability to have a child, feel exhausted after 2 days at work, the worry that if you get ill again the pressure of the income falls solely on your partner and the knowledge that you don't quite know what the future holds for you health wise.. This is not a complaint from me, there are people far more in need of sympathy than I am, but sometimes we just need to let rip those added layers to our lives and not feel we are embracing the whole 'woe is me' way of life.
I made a vow this year that i would find a positive thing about every day, that i wouldn't think about the hard stuff and just get on. The one thing these experiences are bringing me is that the old sayings are the best and life really is too short, the shit is doled out unfairly at times but small steps will eventually get you to the end of the longest of roads. Don't criticise my positivity, i speak from experience, I have been halfway to hell and back (note only half way not all the way there like some!) when it feels like your world has caved in and the hole just keeps getting deeper. If i can be positive and not complain too much then others can too, just take a breath and consider for a second.. there is always somebody in a worse situation and facing bigger problems than you
At the bottom of the well it is pitch black and cold, on the darker days you can't see the foot holes for your way to the top, on wet days you may slip but on sunny days you can see the climb more easy and take a step up towards the light at the top.
Over the past few days I have logged into Facebook and saw a long list of complaints, people moaning and groaning at the simple miseries of life and wondered how many people are just having a gripe to draw a bit of attention to themselves and how many of them actually feel hard done by? I am not in any way sitting in judgement, by all means i have been just as guilty of this self indulgence. But it does raise the question of who actually has the right to complain? do we ignore the people that actually do? because we are so swamped with our own selfish complaints we are neglecting those that are more deserving of attention?
I in no way see my circumstances as exceptional and spend most of days thinking how to be normal and avoid moaning too much about by illness. As a person with a chronic disease you are often plagued by the paranoia of other peoples perception of you as a complainer, moaner or pessimist, but shouldn't we be allowed to more than most?
'Normal' life is hard enough for everyone, juggling a full time job, children, broken down cars, sleepless nights, bad colds and going into your overdraft halfway through the month, but combine those pressures with hospital appointments, severe fatigue, taking 9 types of medication in the morning, paying for the prescriptions because they won't make you exempt, the fear you are a ticking time bomb of disease that is unpredictable and ruthless in its attack, the question mark over your ability to have a child, feel exhausted after 2 days at work, the worry that if you get ill again the pressure of the income falls solely on your partner and the knowledge that you don't quite know what the future holds for you health wise.. This is not a complaint from me, there are people far more in need of sympathy than I am, but sometimes we just need to let rip those added layers to our lives and not feel we are embracing the whole 'woe is me' way of life.
I made a vow this year that i would find a positive thing about every day, that i wouldn't think about the hard stuff and just get on. The one thing these experiences are bringing me is that the old sayings are the best and life really is too short, the shit is doled out unfairly at times but small steps will eventually get you to the end of the longest of roads. Don't criticise my positivity, i speak from experience, I have been halfway to hell and back (note only half way not all the way there like some!) when it feels like your world has caved in and the hole just keeps getting deeper. If i can be positive and not complain too much then others can too, just take a breath and consider for a second.. there is always somebody in a worse situation and facing bigger problems than you
At the bottom of the well it is pitch black and cold, on the darker days you can't see the foot holes for your way to the top, on wet days you may slip but on sunny days you can see the climb more easy and take a step up towards the light at the top.
BREAKFAST!
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