Showing posts with label perspective. Show all posts
Showing posts with label perspective. Show all posts
Sunday, 5 October 2014
Keeping up appearances
Wednesday, 22 January 2014
I wish I had a time machine #2
Dear Claire, in just over 6 months time you'll be getting married.. Everything is working out, well, organised and paid for (for the most part). Those weird aches and pains have been diagnosed for nearly a year now, something linked to lupus. You haven't done much research into into though have you? Been looking after yourself? No ? what's new there then. It might be a good time to read up on it a little, perhaps so you are aware of anything unusual. Ignore the advice of the rheumatologist who told you 'don't google lupus you'll scare yourself stupid' Now is the time to perhaps shit yourself just a little, it'll be good for you in the long run. Those blood tests you just had done in November because you were feeling extra tired, it might be an idea to chase them up or request a kidney function test… not sure if that was included at the time.. it could have been, they just have forgotten to tell you or it could be that not much has shown up. Yet.
Now over the next few weeks things are going to start get really tough, so brace yourself and be prepared. First you'll start to get really really tired and a bit nauseous but you won't pay much attention to that, you're always tired. But when your eyes look puffy and swollen it's not a antihistamine you need it's a Doctor. You shouldn't wait a second longer.
What will follow you would never have imagined in your whole lifetime, but yet it will be feel like a lifetime, but it will all be ok and you will be well enough to get married at the end.
There will be lots of tears, and that's fine, because it is all so grossly unfair, not just to happen at all but to happen six months before a wedding you've waited a decade for.
On the flip side there are a couple of things that will keep you going over the next six months and you will laugh at times.
1. Ginger nuts - will help with the nausea but avoid the lucozade, it makes your empty stomach (trust me it will be very empty) sound like a 30 year old boiler warming up for winter.
2. Egg sandwiches - not until you get the top notch anti-sickness drugs, Mum will cut them into triangles for you, Mark will cut them into squares.
3. Pancake day laughter - Mark trying to flip pancakes for you and burning himself
4. Domino's in CCU - Mum, a Domino's pizza and some jealous CCU nurses.
5. Tramadol dreams - will help you sleep at least two days away from the hellishly long days, a sleepy holiday away from the reality of the time.
But no matter how hard it gets, know this. You will be looked after, you will be loved and you will get better.
to be continued…
read part one here.
Now over the next few weeks things are going to start get really tough, so brace yourself and be prepared. First you'll start to get really really tired and a bit nauseous but you won't pay much attention to that, you're always tired. But when your eyes look puffy and swollen it's not a antihistamine you need it's a Doctor. You shouldn't wait a second longer.
What will follow you would never have imagined in your whole lifetime, but yet it will be feel like a lifetime, but it will all be ok and you will be well enough to get married at the end.
There will be lots of tears, and that's fine, because it is all so grossly unfair, not just to happen at all but to happen six months before a wedding you've waited a decade for.
On the flip side there are a couple of things that will keep you going over the next six months and you will laugh at times.
1. Ginger nuts - will help with the nausea but avoid the lucozade, it makes your empty stomach (trust me it will be very empty) sound like a 30 year old boiler warming up for winter.
2. Egg sandwiches - not until you get the top notch anti-sickness drugs, Mum will cut them into triangles for you, Mark will cut them into squares.
3. Pancake day laughter - Mark trying to flip pancakes for you and burning himself
4. Domino's in CCU - Mum, a Domino's pizza and some jealous CCU nurses.
5. Tramadol dreams - will help you sleep at least two days away from the hellishly long days, a sleepy holiday away from the reality of the time.
But no matter how hard it gets, know this. You will be looked after, you will be loved and you will get better.
to be continued…
read part one here.
Tuesday, 7 January 2014
Plagued by illness
I know from personal experience, that when you suffer from a chronic or rare condition, you are faced with questions, challenges and comments about your illness and your capabilities on a daily basis, be it by those generally interested, making sense of all the information or by misplaced sentiment. At the other end of the spectrum you are faced with those who simply avoid any association with you, or someone else who is ill or suffering.
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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