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.
Tuesday, 31 March 2009
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.
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