Again, I haven't blogged for a while. No good excuse, life just gets in the way.
Life is no less busy not than any other time, but i'm on enforced rest and being babysat. I am awaiting Christmas surgery, to protect my lungs from further acid damage, and perhaps give them the chance to rest and recouperate; but first, I need to be in a fit state for an anaesthetic, something I have been told I am not at the moment.
Lung function is currently floating at a record low, something which I didn't think I was due to hit for a few years. Generally I feel i'm pretty resilient and bounce back well, but i have undoubtedly been knocked for six this time, or perhaps for seven. This week has been sad all round, three friends/ acquaintances with CF have died, well before their time. CF 'friends' and the community we exist within is a strange one, despite having never met, and often never having had lengthy conversatioins, we seem to have this unspoken, unwritten bond. Such losses therefore are bound to hit each of us hard, and those of us who are struggling at the time particularly forcefully. It could so very easily have been one of us.
The CF community can also become quite insular at times like this, and i fear i fall foul of excluding my 'normal' friends, for fear of them not understanding, for fear of scaring them, for fear
That said, sometimes one ecounters a person who is enormously self-engrossed, vainglorious and egocentric. I am quite certain I have been guilty of this at times, and no doubt could do with a good shake now and then, but some people never fail to amaze, and disappoint me. Don't worry, I'm not forgetting I am generally surrounded by the best friends a girl could ask for, and count my blessings ever day.
Although merely recouperating from a chest infection, brought on by a cold, brought on by an attempt to behave normally at a friends wedding: I am on somewhat precarious ground. Walking is immensely hard work, the cold air steals my breath; the stairs are my nemesis, they leave me unsteady and wanting once I have reached the top, showering requires all of my days spoons (see previous post) and staying awake requires energy. This is not always the case, but it's rare now that I can take a day in my stride,The time has come for me to consider swallowing my pride and accepting help, and again, I use this blog to get there. This blog was begun in the hope I could share with my friends feelings and explanations I felt uncomfortable expressing or unsuitable interjecting in a more social situation. I ask you to take this in the same vein, and deal with it yourself, rather than making it a further challenge for me to face, another taboo for me to broach with you, I'm still me. There's nothing wrong with my brain, my intellect, my head.
I'm going to reach out to anything that might help with both hands, and continue to embrace life, living it to the full.
Saturday, 28 November 2009
Sunday, 6 September 2009
The Spoon Theory
The Spoon Theory
My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.
As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?
I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn't seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.
As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.
At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said "Here you go, you have Lupus". She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.
I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.
Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a "loss" of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.
She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?
I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of "spoons". But when you have to now plan your day, you need to know exactly how many "spoons" you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn't even started yet. I’ve wanted more "spoons" for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.
I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said " No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can't take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too." I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.
I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your "spoons" are gone, they are gone. Sometimes you can borrow against tomorrow’s "spoons", but just think how hard tomorrow will be with less "spoons". I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on "spoons", because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.
We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.
When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.
I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly "Christine, How do you do it? Do you really do this everyday?" I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, "I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared"
Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day's plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count "spoons".
After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can't go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said "Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted "spoons" and I chose to spend this time with you."
Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my "spoons".
© 2003 by Christine Miserandino Butyoudontlooksick.com
My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.
As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?
I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn't seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.
As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.
At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said "Here you go, you have Lupus". She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.
I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.
Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a "loss" of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.
She grabbed the spoons with excitement. She didn’t understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?
I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of "spoons". But when you have to now plan your day, you need to know exactly how many "spoons" you are starting with. It doesn’t guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn't even started yet. I’ve wanted more "spoons" for years and haven’t found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.
I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said " No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you don’t, you can't take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too." I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.
I think she was starting to understand when she theoretically didn’t even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your "spoons" are gone, they are gone. Sometimes you can borrow against tomorrow’s "spoons", but just think how hard tomorrow will be with less "spoons". I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on "spoons", because you never know when you truly will need them. I didn’t want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.
We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.
When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldn’t have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didn’t even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you can’t do it all.
I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly "Christine, How do you do it? Do you really do this everyday?" I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, "I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared"
Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day's plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count "spoons".
After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can't go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said "Don’t worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I don’t have room for wasted time, or wasted "spoons" and I chose to spend this time with you."
Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isn’t just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they don’t take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my "spoons".
© 2003 by Christine Miserandino Butyoudontlooksick.com
Tuesday, 7 July 2009
Tomorrow i'm off to Harefield Hospital, again.
It is merely appointment to check on my progress, or lack thereof; and decide how closely i need to be watched by the transplant team, or if i can be discharged for the forseeable future. I would very much like to think it will be my last visit to this hospital for some time, but think with hindsight i will be glad i have begun a relationship with the team at this stage, and not merely when i desperately need their help. It's an early start as the hospital is some 3 hours away, but i am being chauffered by my wonderful partner- and will try and squeeze some nice food and girly magazines out of it!
I know i'm one of the lucky ones, and have many friends who only visit this hospital to be told their time is running out, and their transplant can't come soon enough.
This week is National Transplant Week, and because I can't think of a more apt or articulate way of making this plea, I am going to steal Emily's wording:
Please do something to help. People like my friends Jess and Tor are relying on us. They need us to do it now, not to put it off till tomorrow, because their tomorrows are looking very uncertain indeed. Let's give them a tomorrow.
http://www.uktransplant.org.uk/ukt/default.jsp
It is merely appointment to check on my progress, or lack thereof; and decide how closely i need to be watched by the transplant team, or if i can be discharged for the forseeable future. I would very much like to think it will be my last visit to this hospital for some time, but think with hindsight i will be glad i have begun a relationship with the team at this stage, and not merely when i desperately need their help. It's an early start as the hospital is some 3 hours away, but i am being chauffered by my wonderful partner- and will try and squeeze some nice food and girly magazines out of it!
I know i'm one of the lucky ones, and have many friends who only visit this hospital to be told their time is running out, and their transplant can't come soon enough.
This week is National Transplant Week, and because I can't think of a more apt or articulate way of making this plea, I am going to steal Emily's wording:
Please do something to help. People like my friends Jess and Tor are relying on us. They need us to do it now, not to put it off till tomorrow, because their tomorrows are looking very uncertain indeed. Let's give them a tomorrow.
http://www.uktransplant.org.uk/ukt/default.jsp
Tuesday, 31 March 2009
I'm no Superman
I make no pretence about this post being anything other than an angry, frustrated roll-call of things i can't currently cope with. The list is extensive- I am not coping well.
Having had over 3 weeks of IVs now, and my needle in for 4, I am still having temperatures, coughing fits, bouts of entirely consuming exhaustion and terrible moods (no, it is not PMS- i class my emotions as a symptom of my current state of health).
I spent everyday last week at hospital, and simply don't feel i'm being allowed the rest my body is so desperately craving. Having said that, it's my lungs which need the rest, and i can't think of a relaxation treatment which would alleviate the complaints they currently have. I'm simply not doing well at living.
Yesterday, i had to take my car to the garage for a much needed repair- but it turned into a lengthy saga which drained me. Getting to a garage half an hour away is an issue in itself for me at the moment, as my lungs are in a permanent strop and can only be described as feeling like i have a vice slowly tightening around them as i keep my arms raised to drive. Add to this the fact i had to be there at 8.30am, immediately after my morning dose of IVs, i struggled. Being told i needed to fill the courtesy car with petrol in order to get home may have seemed to the Service Adviser a reasonable request, but i have to plan when i need to fill the car with petrol as squeezing the handle and holding something heavy at waist height takes its toll on my body.
I had to return for the car at 4pm, and felt pathetic and absurd as i arrived fighting back tears and wanting someone to look after me- i was only picking up a car! As I waited elsewhere for new tyres to be fitted i pondered how i had come to be in this state, and when I had become this pathetic. If someone else had told me this story i would suggest they get some real problems in their life. But until you feel how arduous and energy sapping the tiniest of everyday activites are, you can't understand why everything becomes such a big issue, and requires such a degree of forward planning. The 'Spoon theory' is becoming ever more relevant- yes as unattainable as ever. I don't feel i have the option to bank up my energy and choose when to use it, as i simply don't have the required support networks in place. I have a loving and wonderful partner, but he is not my carer, nor do i ever want him to take that role. I am forever being told i ought to ask for help more, and that if i don't ask then i wont get; but days like yesterday when i look round for someone to beg i realise no-one is there.
I struggle to stand in the queue at the Post Office because i begin to get breathless and start to ache and shiver. I'm finding the disabled spaces aren't 'disabled enough' and still prove to be a battle to walk from and to. The provisions for twenty one year olds with such problems simply aren't there; and a grey wig, bottle of talcum powder and a doddery husband in tow would open doors i simply can't push hard enough.
Today is a bad day, and tomorrow will be better. There are so many people who have it far harder, with just as little help; but few I imagine appreciate the value of life more than I do. I dearly love my life and most of what it entails, which is why I find the situation so frustrating. It is so important to me to live it, whatever that might involve, and having obstacles put in the way makes my 100m tortoise crawl harder than I already find it.
I'm not sure what i'm expecting from this post- someone to brandish a magic wand perhaps? Or maybe just some acceptance within myself that i'm not Wonder Woman.
Having had over 3 weeks of IVs now, and my needle in for 4, I am still having temperatures, coughing fits, bouts of entirely consuming exhaustion and terrible moods (no, it is not PMS- i class my emotions as a symptom of my current state of health).
I spent everyday last week at hospital, and simply don't feel i'm being allowed the rest my body is so desperately craving. Having said that, it's my lungs which need the rest, and i can't think of a relaxation treatment which would alleviate the complaints they currently have. I'm simply not doing well at living.
Yesterday, i had to take my car to the garage for a much needed repair- but it turned into a lengthy saga which drained me. Getting to a garage half an hour away is an issue in itself for me at the moment, as my lungs are in a permanent strop and can only be described as feeling like i have a vice slowly tightening around them as i keep my arms raised to drive. Add to this the fact i had to be there at 8.30am, immediately after my morning dose of IVs, i struggled. Being told i needed to fill the courtesy car with petrol in order to get home may have seemed to the Service Adviser a reasonable request, but i have to plan when i need to fill the car with petrol as squeezing the handle and holding something heavy at waist height takes its toll on my body.
I had to return for the car at 4pm, and felt pathetic and absurd as i arrived fighting back tears and wanting someone to look after me- i was only picking up a car! As I waited elsewhere for new tyres to be fitted i pondered how i had come to be in this state, and when I had become this pathetic. If someone else had told me this story i would suggest they get some real problems in their life. But until you feel how arduous and energy sapping the tiniest of everyday activites are, you can't understand why everything becomes such a big issue, and requires such a degree of forward planning. The 'Spoon theory' is becoming ever more relevant- yes as unattainable as ever. I don't feel i have the option to bank up my energy and choose when to use it, as i simply don't have the required support networks in place. I have a loving and wonderful partner, but he is not my carer, nor do i ever want him to take that role. I am forever being told i ought to ask for help more, and that if i don't ask then i wont get; but days like yesterday when i look round for someone to beg i realise no-one is there.
I struggle to stand in the queue at the Post Office because i begin to get breathless and start to ache and shiver. I'm finding the disabled spaces aren't 'disabled enough' and still prove to be a battle to walk from and to. The provisions for twenty one year olds with such problems simply aren't there; and a grey wig, bottle of talcum powder and a doddery husband in tow would open doors i simply can't push hard enough.
Today is a bad day, and tomorrow will be better. There are so many people who have it far harder, with just as little help; but few I imagine appreciate the value of life more than I do. I dearly love my life and most of what it entails, which is why I find the situation so frustrating. It is so important to me to live it, whatever that might involve, and having obstacles put in the way makes my 100m tortoise crawl harder than I already find it.
I'm not sure what i'm expecting from this post- someone to brandish a magic wand perhaps? Or maybe just some acceptance within myself that i'm not Wonder Woman.
Sunday, 8 February 2009
Long overdue update
As i was 'prettifying' this blog, i thought i ought to update some content also, it is long overdue.
This blog was initially a vehicle to communicate with friends about my health issues, whilst removing some of the awkwardness and energy sapping rambling explanations. I found it nurtured a degree of silent understanding and unquestioning acceptance, that i hadn't experienced before. I know people read it, and never said another word. Since I was told (on Christmas Eve!) that i didn't need to be listed for transplant yet I have been riding a rollercoaster of emotions. I found myself despairing at being told I wasn't going to be listed, in contrast to my family's happy delirium. This may, to many, appear ungrateful, confused and an altogether odd response. In my defence, I have been assured I am not the only one to have reacted like this.
I felt that being told i was 'too well' to be listed was cruel, and left me hanging. Holding onto the thought of transplant assessment, and the process and support network which surrounds it, had been what i had been holding onto for some time. The process of being referred for the transplant assessment took almost a year from when it was first mentioned, and as time went on it became more and more consuming.
Having this outcome sprung upon me, after such a build up felt like having my hand-rail removed whilst i'm still unsteady.
I feel this has been something of a guilty secret since i received the outcome, as those friends who are involved in the transplant world and are desperately, torturously waiting for their call will feel they would do anything to be in my position and be 'too well'; and outsiders from this strange and surreal world appear to see it as an 'all clear', rather than a delaying of the almost inevitable.
To be continued...
This blog was initially a vehicle to communicate with friends about my health issues, whilst removing some of the awkwardness and energy sapping rambling explanations. I found it nurtured a degree of silent understanding and unquestioning acceptance, that i hadn't experienced before. I know people read it, and never said another word. Since I was told (on Christmas Eve!) that i didn't need to be listed for transplant yet I have been riding a rollercoaster of emotions. I found myself despairing at being told I wasn't going to be listed, in contrast to my family's happy delirium. This may, to many, appear ungrateful, confused and an altogether odd response. In my defence, I have been assured I am not the only one to have reacted like this.
I felt that being told i was 'too well' to be listed was cruel, and left me hanging. Holding onto the thought of transplant assessment, and the process and support network which surrounds it, had been what i had been holding onto for some time. The process of being referred for the transplant assessment took almost a year from when it was first mentioned, and as time went on it became more and more consuming.
Having this outcome sprung upon me, after such a build up felt like having my hand-rail removed whilst i'm still unsteady.
I feel this has been something of a guilty secret since i received the outcome, as those friends who are involved in the transplant world and are desperately, torturously waiting for their call will feel they would do anything to be in my position and be 'too well'; and outsiders from this strange and surreal world appear to see it as an 'all clear', rather than a delaying of the almost inevitable.
To be continued...
Wednesday, 24 December 2008
Friday, 19 December 2008
And the winner is...
... we still don't know. They called me this afternoon, after i emailed and left voicemail messages, to say the consultant needs to speak to me about some specifics, and a future plan of action. Although it was a little like drawing blood from a stone (or from a CFers vein), the co-ordinator did indicate that they are leaning towards me being 'too well' and going on the wait and see list. I will however, know more on Monday, and shall update you then.
On a brighter note, my friends have really shown their true colours over the last week, and have lifted my spirits no end.
***Cheesiness warning ***
True friends are like stars, they shine on the darkest of nights.
On a brighter note, my friends have really shown their true colours over the last week, and have lifted my spirits no end.
***Cheesiness warning ***
True friends are like stars, they shine on the darkest of nights.
Sunday, 14 December 2008
Thursday, 11 December 2008
Transplant assessment
So, i've had my assessment for a double lung transplant- outcome to be announced next week, so tune in for that. It was a very intense week, packed with tests and information. Despite this intensity, i felt as though it was happening to someone else and i was watching through a lens. I never expected to feel as entiely disattached as i have done.
I am lucky in that i have had an enormous amount of support from some very special people, some of whom have been where i am now, some who simply realise i need my friends now more than ever, and are able to get over their own awkwardness to reach me.
I suspect that some people feel very alienated by the whole process, and unsure of what to say. I understand that it is not an easy subject to broach, nor to understand, but a simple 'thinking of you' would mean more to me than you seem to realise.
For those who may have a transplant assessment on the horizon, and those who are not brave enough to speak to me in person, here is some information on transplants, assessments and the whole process:
During my hospital incarceration, i was subjected to a barrage of tests:
I am lucky in that i have had an enormous amount of support from some very special people, some of whom have been where i am now, some who simply realise i need my friends now more than ever, and are able to get over their own awkwardness to reach me.
I suspect that some people feel very alienated by the whole process, and unsure of what to say. I understand that it is not an easy subject to broach, nor to understand, but a simple 'thinking of you' would mean more to me than you seem to realise.
For those who may have a transplant assessment on the horizon, and those who are not brave enough to speak to me in person, here is some information on transplants, assessments and the whole process:
During my hospital incarceration, i was subjected to a barrage of tests:
- ECG
- 24 hour heart tape
- 24 hour urine collection
- 6 minute walking test
- Abdominal ultrasound
- Chest CT
- Bone scan
- Impedence study (tube up the nose and down the throat, into the osopheagus)
- Psychosocial assessment
- Chest x-ray
There was a great deal of opportunity to ask questions, have conversations and discuss the upcoming events. I had an interesting discussion with the transplant co-ordinators about the shortage of donors, myths surrounding organ donation, different types of donor organs, and the issues which arise from transplants.
A transplant is by no means a cure, it is swapping one set of problems for another. Post transplant, instead of having malfunctioning lungs, i would have a whole new set of issues. Immunosuppresants would need to be tinkered with, kidney function kept an eye on; sunscreen worn at all times to reduce the already raised risk of cancer; lung function and temperature monitored daily to pick up on early signs of rejection, which would need to be treated vigorously and urgently. Immunosuppresants are given to prevent rejection of the transplanted organ, but they also make the transplantee far more susceptible to coughs, colds and other infections, leading to complete hyperchondria in the months of recovery. The transplanted lungs do not have an infinite shelf life- the average survival post transplant is 5 years, but a transplant is about quality not quantity. It should provide a significantly improved quality of life, with the opportunity to do things not now possible with severely damaged lungs.
Before it is even possible to reach this stage of arduous labour during the recovery, it is necessary to be matched with suitable donor organs. This process is not as simple as it may seem, with matches needing to be found for blood group, tissue type, height and weight. There are currently 80 people waiting for donor lungs at Harefield hospital, with less than 30 operations having been done in the last year. Half of all people on the lung transplant waiting list will die waiting for lungs.
I have probably bombarded you with enough information for now, although this post is as much for me as it is for you. I'm trying to make this real.Sunday, 9 November 2008
*Long exhaled breath*
This week has been, well, tough. Emotionally, it has been turbulent. Physically, i have been here there and everywhere. Wednesday saw me visit a distant hospital to meet a completely new team, something which has been in the pipeline for a while- but not overly concerning as i thought i would merely receive a cursory 'going over' and be told to tootle off on my way. Not so.
Apart from being told i am a confusing, bemusing and puzzling patient; i was also told that due to the ferocious and turbulent nature of my decline, a pair of new lungs need to be seriously considered, and sooner rather than later.
After almost falling off my chair (not metaphorically, i do believe i was teetering precariously whilst looking somewhat ghostly), i failed to ask the host of questions i had prepared and silently seethed at just how unprepared i had been.
One thing i had instilled in myself for prior to my visit was the fact that no matter what happened in that room, i would emerge the same person i walked in as. Whether anyone else realises this or not, i've yet to decide.
Apart from being told i am a confusing, bemusing and puzzling patient; i was also told that due to the ferocious and turbulent nature of my decline, a pair of new lungs need to be seriously considered, and sooner rather than later.
After almost falling off my chair (not metaphorically, i do believe i was teetering precariously whilst looking somewhat ghostly), i failed to ask the host of questions i had prepared and silently seethed at just how unprepared i had been.
One thing i had instilled in myself for prior to my visit was the fact that no matter what happened in that room, i would emerge the same person i walked in as. Whether anyone else realises this or not, i've yet to decide.
Monday, 20 October 2008
I feel a pattern emerging...
4:46 am, i feel a theme coming on. God, i hate not being able to sleep. Tonight i have a particularly overactive imagination, and have a sudden urge to put on my red sparkly shoes, and climb back into bed with my glittering toesies poking out of the end! And why not i ask?!
This blog, which was supposed to be my way of outing my emotions, is turning into a ramble about pretty shoes and fairy costumes. Shallow? Me? How very dare you!
I'm currently obsessively planning my 21st birthday party, to be held in January. A while off yet, i know, but it's nice to have something fun and hopeful to hang onto right now- whilst everything else is looking so bleak and arduous. Currently i can submerge myself in a plume of feathers, flapper frivolence, rolling my stockings down and rouging my cheeks; or consider the fact that in a little over two weeks time some doctors i have never met will tell me where my life is to head. I think i'll party for now, and worry about that later.
This blog, which was supposed to be my way of outing my emotions, is turning into a ramble about pretty shoes and fairy costumes. Shallow? Me? How very dare you!
I'm currently obsessively planning my 21st birthday party, to be held in January. A while off yet, i know, but it's nice to have something fun and hopeful to hang onto right now- whilst everything else is looking so bleak and arduous. Currently i can submerge myself in a plume of feathers, flapper frivolence, rolling my stockings down and rouging my cheeks; or consider the fact that in a little over two weeks time some doctors i have never met will tell me where my life is to head. I think i'll party for now, and worry about that later.
Saturday, 19 July 2008
A late night ramble
I often feel quite lonely, isolated at times. I don't like to talk about my illness to friends, they just accept my daily regimen of being beaten, downing so many tablets i rattle when shaken, and frequent stays in the 'hotel' as they like to call it; but sometimes i wish they could have just a little insight into my life- of what it's like to keep it all in for fear of upsetting those you care about most.
Over the past 12 months my health has deteriorated 'disastorously' (the exact wording used in my hospital notes, which they think i don't sneak a peak at). I have gone from being a largely normal, healthy, happy person with a successful future stretched out ahead of me- to someone who doesn't know what the next day will bring, and doesn't dare to plan for the coming christmas- never mind next year. Some days i simply don't have the energy to leave the house, and people wonder why i don't jump for joy at the thought of participating in a lenghty hike or a muddy music festial. I have watched friends grow more distant as they get on with their lives, family more scared as they try to pretend it's not happening, and doctors more perplexed as i add one complication to another. This decline has culminated in discussion about a double lung transplant- and the chances this might bring. The fact is however, only half of those accepted as ill enough to need such a transplant ever get the chance to recieve one. This country has a chronic shortage of organ donors, leading to the loss of many young lives and the devestation of many others left behind. Perhaps this is why i haven't wanted to be upfront with you about how things have changed; perhaps i don't want to be viewed any differently to how i always have been; perhaps i haven't yet accepted this myself, and therefore am not ready for you to be let into this world.
Thankfully, this is a world you can leave just as quickly as you entered it. For the friends i have, waiting on the kindness of a stranger to allow them to regain their lives, walking away is not this simple.
Please think about joining the organ donor register today, and save people the heartache of having to say goodbye before their time.
http://www.uktransplant.org.uk/ukt/how_to_become_a_donor/registration/consent.jsp
There are many wonderful things going on in my life, and many things i have to look forward to (more of these to follow in further posts); but i felt some of you were owed an explanation, and this- for me at least- is the most painless way of doing it.
Over the past 12 months my health has deteriorated 'disastorously' (the exact wording used in my hospital notes, which they think i don't sneak a peak at). I have gone from being a largely normal, healthy, happy person with a successful future stretched out ahead of me- to someone who doesn't know what the next day will bring, and doesn't dare to plan for the coming christmas- never mind next year. Some days i simply don't have the energy to leave the house, and people wonder why i don't jump for joy at the thought of participating in a lenghty hike or a muddy music festial. I have watched friends grow more distant as they get on with their lives, family more scared as they try to pretend it's not happening, and doctors more perplexed as i add one complication to another. This decline has culminated in discussion about a double lung transplant- and the chances this might bring. The fact is however, only half of those accepted as ill enough to need such a transplant ever get the chance to recieve one. This country has a chronic shortage of organ donors, leading to the loss of many young lives and the devestation of many others left behind. Perhaps this is why i haven't wanted to be upfront with you about how things have changed; perhaps i don't want to be viewed any differently to how i always have been; perhaps i haven't yet accepted this myself, and therefore am not ready for you to be let into this world.
Thankfully, this is a world you can leave just as quickly as you entered it. For the friends i have, waiting on the kindness of a stranger to allow them to regain their lives, walking away is not this simple.
Please think about joining the organ donor register today, and save people the heartache of having to say goodbye before their time.
http://www.uktransplant.org.uk/ukt/how_to_become_a_donor/registration/consent.jsp
There are many wonderful things going on in my life, and many things i have to look forward to (more of these to follow in further posts); but i felt some of you were owed an explanation, and this- for me at least- is the most painless way of doing it.
New beginnings
I've been trying to begin this blog for ages, but typically, thus far i've only managed to make it look pretty. On a similar note, i'm currently training for a 5 kilometre race in September, being run by a group of girls to raise money for the Cystic Fibrosis Trust.
Now you may wonder how that is a 'similar note'- but again, i have simply made it look pretty- and purchased a rather gorgeous, floaty and very girly fairy dress! (Those who know my technological skills will be just as surprised as i am that i've managed to upload a picture!)
Said dressMy training plan, on the other hand, is a somewhat less pretty picture! How i am going to drag myself around a 5 km undulating course if i can't currently carry myself around the supermarket and back?
This blog is (fingers crossed) going to encourage my training plan, as i'll feel terribly guilty should i not follow it when other people are keeping an eye on me! Although, maybe i am talking to myself on this blog- which will make a nice change from me talking to myself out-loud where everyone else can hear me :- )
Subscribe to:
Posts (Atom)
