Its 6am on a dark Tuesday morning and my body is wide awake courtesy of the pains in my right leg. So I thought I would use the time wisely and catch up with you as I realise that I haven’t shared with you for a while.
So let’s do a quick check in with what’s been happening in my world.
I’m beginning to finds ways to make disability work for me and as a result my left leg is rejoicing because instead of having to battle with the challenges of the manual gear change it has a new home, a new car and it’s automatic (my right leg is not so happy but that is another story) But I am truly excited none the less because, it does so many really cool things, I travel with the car key in my pocket and the doors open automatically, it starts at the touch of a button, the lights come on when it is dark and the windscreen wipers come on when it is wet. The only problem is I still have to drive it and as I have not been that well I haven’t spent a lot of time in it.
But the thought of it alone refreshes part even steroids cannot reach. It really is the simple things in life that make the difference.
So what am I doing while I am up so bright and early, after all I have no job to go to? Well seeing as it is just us, I’ll share with you. I am on a weeing marathon, yes you heard me right, I am currently weeing for England. I had chemotherapy (cyclophosphomide, my favourite drug) yesterday and I have been getting intimately acquainted with my loo, but I guess that is a new way to detox!
I’m trying to take it all in my stride as by consenting to have chemo means that I am ‘allowed’ to go to the Caribbean for two months. Yes you heard me two months well my motto is have crutches will travel!
Tuesday, November 14, 2006
Monday, August 07, 2006
Invisible London
It’s official!
I have now joined the ranks of London’s invisible. Yes I have been registered disabled which in the first instance can be seen as quite exciting after all I can now park in a wide variety of places, I have a free bus and train pass, I get free car tax and can travel freely through the congestion charge zone all very exciting indeed. Well it would be if I had the energy or the desire to travel around London; or if London was in the least bit welcoming and I am sure that London is representative of other large cities around the world.
Have you tried traveling on public transport with crutches? By and large people ignore you, no correction try to ignore you. they don’t make eye contact with you which I am now convinced is because they are frightened you might ask them something or whatever you have is contagious. And those that do talk to you are extremely friendly so friendly that they want to know why it is you are on crutches and use it as an opportunity to share with you all they see being wrong with their world.
But as well as all of that there is something about the label ‘disabled’ that stirs up all kinds of emotions in me, it reminds me of all the things I cannot do, I feel less than, not quite right, I don’t fit in. And so now instead of just dealing with mr lupus and all the stuff he brings to the table, I’m having to deal with these emotions too. More emotions than a girl should have to deal with.
So here I sit amongst the invisible many wondering what and where to next. I guess I’ll just wait for the next bus or train to come along and get on it just for the ride!
Thought for the day
Have crutches will travel. Learn to explore the world in spite of your circumstances. You are more than the sum of what is happening in your life.
I have now joined the ranks of London’s invisible. Yes I have been registered disabled which in the first instance can be seen as quite exciting after all I can now park in a wide variety of places, I have a free bus and train pass, I get free car tax and can travel freely through the congestion charge zone all very exciting indeed. Well it would be if I had the energy or the desire to travel around London; or if London was in the least bit welcoming and I am sure that London is representative of other large cities around the world.
Have you tried traveling on public transport with crutches? By and large people ignore you, no correction try to ignore you. they don’t make eye contact with you which I am now convinced is because they are frightened you might ask them something or whatever you have is contagious. And those that do talk to you are extremely friendly so friendly that they want to know why it is you are on crutches and use it as an opportunity to share with you all they see being wrong with their world.
But as well as all of that there is something about the label ‘disabled’ that stirs up all kinds of emotions in me, it reminds me of all the things I cannot do, I feel less than, not quite right, I don’t fit in. And so now instead of just dealing with mr lupus and all the stuff he brings to the table, I’m having to deal with these emotions too. More emotions than a girl should have to deal with.
So here I sit amongst the invisible many wondering what and where to next. I guess I’ll just wait for the next bus or train to come along and get on it just for the ride!
Thought for the day
Have crutches will travel. Learn to explore the world in spite of your circumstances. You are more than the sum of what is happening in your life.
Monday, May 29, 2006
I'm going to re-invent myself!
The one question that I keep being asked is am I better now?
Good question, but to be perfectly honest with you. I’m not sure, it’s a year and some months since this all began and I am still on the settee watching brain numbing TV (Did you know that there really is a small number of TV programs that are simply regurgitated over and over again, I know because I’ve probably seen them all at least twice).
But I must be better mustn’t I? After all I’ve had lots of drugs pumped through my body; I’ve subjected it to ghastly chemo sessions and been withdrawn from the outside world.
Surely it has to have been worth it!
Well the jury is still out on that one because some days it really doesn’t look so good, but I’ve found a solution. I’ve decided that the best way to handle it is to limit my use of the word better and have chosen to use the word ‘different’ instead, because things really are different.
My legs (the site of the original problem) maybe painful, swollen and rely on crutches to help them move around; mr lupus may still knock on my door daily (some days more forcefully than others) but it’s definitely a different world that I am now living in.
A friend of mine was recently asked how her friend Carole was doing. She knows more than one Carole so she innocently asked which one. Was it Social Worker Carole? Carole from East London? or Lupus Carole? It was then that I realised that I had suddenly become someone else. I was no longer fun loving Carole or professional Carole or even just Carole now I was firmly attached to mr lupus. We are seamlessly joined at the hip and that was how people were now seeing me.
But that’s not how I want to be seen.
So now I am going to reinvent myself, if Madonna can do it (several times) I don’t see any reason why I can’t do it. So armed with the notion that life is in the detail and that little things really do count, I’ve already started my re-invention process by:
Changing the way my Blog looks (I hope you noticed)
No longer sleeping on the settee
Giving myself a manicure
Removing the offending clothes from my wardrobe
Hanging pictures
Giving myself permission to be
Letting go of stuff (still a work in progress)
Inspiring others (I’m doing really well at this one)
That may not seem like much, but believe me in my world it is quite revolutionary. All I need now is some sunshine. Can anyone tell me where the summer is because I’ve looked at my watch and it is well overdue.
Thought for the day
Life is about perspective and you get to chose the perspective!
Good question, but to be perfectly honest with you. I’m not sure, it’s a year and some months since this all began and I am still on the settee watching brain numbing TV (Did you know that there really is a small number of TV programs that are simply regurgitated over and over again, I know because I’ve probably seen them all at least twice).
But I must be better mustn’t I? After all I’ve had lots of drugs pumped through my body; I’ve subjected it to ghastly chemo sessions and been withdrawn from the outside world.
Surely it has to have been worth it!
Well the jury is still out on that one because some days it really doesn’t look so good, but I’ve found a solution. I’ve decided that the best way to handle it is to limit my use of the word better and have chosen to use the word ‘different’ instead, because things really are different.
My legs (the site of the original problem) maybe painful, swollen and rely on crutches to help them move around; mr lupus may still knock on my door daily (some days more forcefully than others) but it’s definitely a different world that I am now living in.
A friend of mine was recently asked how her friend Carole was doing. She knows more than one Carole so she innocently asked which one. Was it Social Worker Carole? Carole from East London? or Lupus Carole? It was then that I realised that I had suddenly become someone else. I was no longer fun loving Carole or professional Carole or even just Carole now I was firmly attached to mr lupus. We are seamlessly joined at the hip and that was how people were now seeing me.
But that’s not how I want to be seen.
So now I am going to reinvent myself, if Madonna can do it (several times) I don’t see any reason why I can’t do it. So armed with the notion that life is in the detail and that little things really do count, I’ve already started my re-invention process by:
Changing the way my Blog looks (I hope you noticed)
No longer sleeping on the settee
Giving myself a manicure
Removing the offending clothes from my wardrobe
Hanging pictures
Giving myself permission to be
Letting go of stuff (still a work in progress)
Inspiring others (I’m doing really well at this one)
That may not seem like much, but believe me in my world it is quite revolutionary. All I need now is some sunshine. Can anyone tell me where the summer is because I’ve looked at my watch and it is well overdue.
Thought for the day
Life is about perspective and you get to chose the perspective!
Wednesday, May 10, 2006
World Lupus Day
Today all over the world individuals, their families and friends are focusing just a little more on the auto immune disease lupus so I would like to ask you a favour. I know that you have a busy lifestyle so I promise not take up too much of your time.
For those of you who don’t know lupus is a condition whereby the body's immune system goes into overdrive and starts to attack itself. The symptoms are many and varied and the illness seems to mimic other diseases. This gives rise to difficulty in diagnosis and the condition can be overlooked, sometimes for years, unless the GP or consultant is alert to lupus.
As someone living with this condition, it is just as hard to deal with and to understand but I am not asking you for sympathy. I am simply asking that you spare a thought for me and others like me who are challenged on a daily basis by this condition and associated complications.
I can send you an email of a man walking the world for lupus that you can share with your family, friends and colleagues. If you are interested please send me an email d1vine1963@yahoo.co.uk with walking in the subject line.
Thank you your support is much appreciated.
For those of you who don’t know lupus is a condition whereby the body's immune system goes into overdrive and starts to attack itself. The symptoms are many and varied and the illness seems to mimic other diseases. This gives rise to difficulty in diagnosis and the condition can be overlooked, sometimes for years, unless the GP or consultant is alert to lupus.
As someone living with this condition, it is just as hard to deal with and to understand but I am not asking you for sympathy. I am simply asking that you spare a thought for me and others like me who are challenged on a daily basis by this condition and associated complications.
I can send you an email of a man walking the world for lupus that you can share with your family, friends and colleagues. If you are interested please send me an email d1vine1963@yahoo.co.uk with walking in the subject line.
Thank you your support is much appreciated.
Monday, April 17, 2006
Now that I have come to the end of the road!
Well this is the eve of my last chemo session and as I sit here looking out of the window, I find myself challenged by my chemo knowledge and the effects it is likely to have on me both mentally and physically over the next few days but that seems like the wrong way to spend a bright and sunny afternoon.
So instead I have decided to look back at an email I sent a few days ago. I actually asked for help, yep it’s only taken 11 months and seven chemo sessions to realise that I don’t need to do this alone. (Okay so I am a slow learner) and further more I was specific about what I needed, I have it on good authority that chocolate really is good for you when you have problems with your taste buds. (Who is going to say that my authority is not good?) But what’s even better is that people have just been waiting to help me and now have lots of what I asked for.
But it got me thinking, how many times have we gone it alone, tried to be superman or woman only to be left exhausted and unsatisfied? (Don’t desert me now cos I know that I am not alone) I suspect plenty but now is the time to STOP.
I have had a startling revelation ‘independence’ really is not a good thing to strive for. Just by its definition it means alone and do we really want to be alone? No of course not. The reality is that we are interdependent like the links in a chain, we are whole in ourselves but need other links to make the chain complete. Do you understand what I mean? Even if you don’t, the one thing to remember is reach out and ask for help when you need it as there really are people who want to help you.
I won’t ask you for chocolate but please just spare me and what I am going through a thought.
So instead I have decided to look back at an email I sent a few days ago. I actually asked for help, yep it’s only taken 11 months and seven chemo sessions to realise that I don’t need to do this alone. (Okay so I am a slow learner) and further more I was specific about what I needed, I have it on good authority that chocolate really is good for you when you have problems with your taste buds. (Who is going to say that my authority is not good?) But what’s even better is that people have just been waiting to help me and now have lots of what I asked for.
But it got me thinking, how many times have we gone it alone, tried to be superman or woman only to be left exhausted and unsatisfied? (Don’t desert me now cos I know that I am not alone) I suspect plenty but now is the time to STOP.
I have had a startling revelation ‘independence’ really is not a good thing to strive for. Just by its definition it means alone and do we really want to be alone? No of course not. The reality is that we are interdependent like the links in a chain, we are whole in ourselves but need other links to make the chain complete. Do you understand what I mean? Even if you don’t, the one thing to remember is reach out and ask for help when you need it as there really are people who want to help you.
I won’t ask you for chocolate but please just spare me and what I am going through a thought.
Tuesday, March 07, 2006
One size does not fit all
That niggling subject has raised its head again. I know that we’ve talked about it before but it just doesn’t seem to go away.
It’s that size thing again!
Well I can’t help it, due to the changes in my physique, courtesy of the lupus/steroid clan, and the refusal of my wardrobe to play ball with me; this is a subject that is never too far from my thoughts.
But things are changing, okay maybe change is not quite the right word, (more like my focus is now on one part of my anatomy at a time) this time my challenge (sounds so much better than a problem) is my head. No not in my head and it’s not that my head is actually getting any bigger (well at least I don’t think so) it’s just that I am fed up of the mr lupus/chemo baldness as I can no longer ignore the bald patches that seem to illuminate each time I look in the mirror. Have you ever realized just how many things you can see your reflection in even when you have absolutely no interest? Well I can tell you it’s plenty.
I decided not to be defeated by the baldness. So I’d buy myself a hat, a sexy, foxy number that would enhance my new physique (see I’m trying to embrace the me now on the way to the me of tomorrow. Deep huh!)
So there I was crutch and all off on an exciting shopping spree, believing that I had found a solution to my temporary situation (everything is only temporary right?). Great or so I thought but that was only short lived. The wisdom, for want of a better word, of the fashion industry put paid to that, they had failed me once more. How can they possibly believe that this is going to work surely there are people with big heads, small heads and medium sized heads. How can they make hats in one size?
Maybe we need to write to the Queen, our MPs organize a march…because one size definitely does not fit all.
It’s that size thing again!
Well I can’t help it, due to the changes in my physique, courtesy of the lupus/steroid clan, and the refusal of my wardrobe to play ball with me; this is a subject that is never too far from my thoughts.
But things are changing, okay maybe change is not quite the right word, (more like my focus is now on one part of my anatomy at a time) this time my challenge (sounds so much better than a problem) is my head. No not in my head and it’s not that my head is actually getting any bigger (well at least I don’t think so) it’s just that I am fed up of the mr lupus/chemo baldness as I can no longer ignore the bald patches that seem to illuminate each time I look in the mirror. Have you ever realized just how many things you can see your reflection in even when you have absolutely no interest? Well I can tell you it’s plenty.
I decided not to be defeated by the baldness. So I’d buy myself a hat, a sexy, foxy number that would enhance my new physique (see I’m trying to embrace the me now on the way to the me of tomorrow. Deep huh!)
So there I was crutch and all off on an exciting shopping spree, believing that I had found a solution to my temporary situation (everything is only temporary right?). Great or so I thought but that was only short lived. The wisdom, for want of a better word, of the fashion industry put paid to that, they had failed me once more. How can they possibly believe that this is going to work surely there are people with big heads, small heads and medium sized heads. How can they make hats in one size?
Maybe we need to write to the Queen, our MPs organize a march…because one size definitely does not fit all.
Sunday, February 26, 2006
Hospitals are all the same!
It’s been a while since last we spoke, so before I talk about what’s going on for me now let’s play catch up and set the scene for the current state of emotions and challenges. Here goes...
I can now officially say that casualty is the same wherever in the world you are and just to prove my point I thought I’d get on a plane for nine hours and then travel for a further three and a half hours just to check it out. I did get a few days sun, sea and sand as well after all I did travel a long way to be in the Dominican Republic for Christmas and New Year but unknown to me mr lupus decided to tag a long I should have known better to think that a matter of geography was going to separate him from me.
he was behaving himself, (in fact I didn’t even know that he was there) enjoying the sun and paying me very little attention that was until I decided to go and explore the capital Santo Domingo. Well I couldn’t go so far and not visit the oldest city or some of the firsts of the new world could I? (Well apparently I could as you will see later).
Our fist stop was Los Tres Ojos (3i cave) with three serene lagoons of crystalline purity submerged in a deep cave and surrounded by tall (still-growing) stalagmites and lush vegetation. It was then that mr lupus got so very excited (it must have been the view), which wouldn’t have been so bad if there wasn’t all of those stairs. I approached them with caution and almost made it down them when my leg or legs, I’m not sure which gave way and there I was sitting uncomfortably on my bottom but the view of the blue lagoon framed by the stalagmites was breathtaking or was that simply me trying to comprehend what was going on and wondering what to do next. Well I must say the men of the Dominican Republic are very good. Four men gallantly came to my aid. In no time at all I was surrounded by men wanting to rub and generally be of assistance which on another occasion I might have truly appreciated. They were at my disposal to take me up the stairs again but to everyone’s surprise I demanded that they stop so that I could take a picture, well I didn’t want to miss out I’d come a long way.
With five days of my holiday to go I could only think what an interesting end to an already challenging year. My good foot as it once was was now swollen to balloon proportions reminding me that when I break through my pain threshold the shit really hurts. As I sat there dumbfounded all I could think was isn’t this pain supposed to stop sometime soon? This would have almost been comical if this wasn’t me and it didn’t hurt so badly.
Lying in that Spanish medical facility I learnt something new. In the absence of pain killers music is a good soothing aid. Thank God for my ipod and the soothing voice of Lynden David Hall interestingly he was singing ‘Medicine for my pain’. Don’t get me wrong music doesn’t make the pain go away it just provides you with something more pleasant to focus on.
Three men who don’t speak very good English accompanied me to the clinics in search of an x-ray (cleanliness was in question but that’s another story). Still no handsome doctor or nurse for that matter to take my pulse which incidentally seems to have remained pretty calm through all of this, could be worst I guess I could already be in 2006 or it could be the first day of my holiday or… hey I’ve done Chemotherapy, hospital, many trips to casualty, palpitations, pneumonia et al this is bound to be a piece of cake in comparison (well that’s the theory anyway).
I navigated my way through the rest of the holiday in fine Carole style, smiling and joking along the way but there was a moment when I really couldn’t laugh my way through it anymore when I had to stop and acknowledge this is crap and I’ve had enough.
Well that was almost nine weeks and three lots of plaster ago, life is still challenging but walking is much easier so all I can do is live in hope and the belief that one day this will well and truly be behind me.
I can now officially say that casualty is the same wherever in the world you are and just to prove my point I thought I’d get on a plane for nine hours and then travel for a further three and a half hours just to check it out. I did get a few days sun, sea and sand as well after all I did travel a long way to be in the Dominican Republic for Christmas and New Year but unknown to me mr lupus decided to tag a long I should have known better to think that a matter of geography was going to separate him from me.
he was behaving himself, (in fact I didn’t even know that he was there) enjoying the sun and paying me very little attention that was until I decided to go and explore the capital Santo Domingo. Well I couldn’t go so far and not visit the oldest city or some of the firsts of the new world could I? (Well apparently I could as you will see later).
Our fist stop was Los Tres Ojos (3i cave) with three serene lagoons of crystalline purity submerged in a deep cave and surrounded by tall (still-growing) stalagmites and lush vegetation. It was then that mr lupus got so very excited (it must have been the view), which wouldn’t have been so bad if there wasn’t all of those stairs. I approached them with caution and almost made it down them when my leg or legs, I’m not sure which gave way and there I was sitting uncomfortably on my bottom but the view of the blue lagoon framed by the stalagmites was breathtaking or was that simply me trying to comprehend what was going on and wondering what to do next. Well I must say the men of the Dominican Republic are very good. Four men gallantly came to my aid. In no time at all I was surrounded by men wanting to rub and generally be of assistance which on another occasion I might have truly appreciated. They were at my disposal to take me up the stairs again but to everyone’s surprise I demanded that they stop so that I could take a picture, well I didn’t want to miss out I’d come a long way.
With five days of my holiday to go I could only think what an interesting end to an already challenging year. My good foot as it once was was now swollen to balloon proportions reminding me that when I break through my pain threshold the shit really hurts. As I sat there dumbfounded all I could think was isn’t this pain supposed to stop sometime soon? This would have almost been comical if this wasn’t me and it didn’t hurt so badly.
Lying in that Spanish medical facility I learnt something new. In the absence of pain killers music is a good soothing aid. Thank God for my ipod and the soothing voice of Lynden David Hall interestingly he was singing ‘Medicine for my pain’. Don’t get me wrong music doesn’t make the pain go away it just provides you with something more pleasant to focus on.
Three men who don’t speak very good English accompanied me to the clinics in search of an x-ray (cleanliness was in question but that’s another story). Still no handsome doctor or nurse for that matter to take my pulse which incidentally seems to have remained pretty calm through all of this, could be worst I guess I could already be in 2006 or it could be the first day of my holiday or… hey I’ve done Chemotherapy, hospital, many trips to casualty, palpitations, pneumonia et al this is bound to be a piece of cake in comparison (well that’s the theory anyway).
I navigated my way through the rest of the holiday in fine Carole style, smiling and joking along the way but there was a moment when I really couldn’t laugh my way through it anymore when I had to stop and acknowledge this is crap and I’ve had enough.
Well that was almost nine weeks and three lots of plaster ago, life is still challenging but walking is much easier so all I can do is live in hope and the belief that one day this will well and truly be behind me.
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