Today (12th May) marks the annual CFS/ME awareness day worldwide. The more I meet both people with CFS/ME and those who know them, the more I feel so strongly that this disease needs a much greater awareness. So many people have this illness, young and old that you probably know at least one person with it, and yet so many people are ignorant of it and its lasting effects on both those who suffer from it and their friends and family.
This blog was originally started because I realised that not only did I know nothing about it, but neither did most of my friends and family. Not only this, but I discovered just how difficult it is to find reliable and helpful information about it so that even those kind enough to look up their friend or family member's illness are not rewarded for doing so. So today, to mark awareness day I shall give you a little insight into my life, to add to the multitude of others who are doing the same today.
I have been ill for almost 5 years now. It affects every aspect of my life, nothing is beyond its influence. I first became ill after my GCSEs (which I took a year early) in that the inevitable slump that comes just after a battery of exams never seemed to quite go away. Since then I have both improved and relapsed a number of times with the biggest and longest relapse occurring last January, in my second term of my first year at university. For most of this time I had no idea what was wrong with me, and even now I can say with confidence that I have CFS/ME this doesn't always enlighten people.
When someone asks 'how does it affect you?' or 'how are you?' where on earth do you start? I have had a number of times in between the last relapse and getting a proper diagnosis when people have asked me these questions and there is so much to explain and mourn that I have no idea what to say and instead stayed silent. The best I have managed is 'I am so very, extremely, unbearably TIRED' and even that doesn't cover it.
Getting a formal diagnosis, while mentally wearing and a lot of hard work, has been helpful, not only in terms of formalities (such as applications for benefits) but also for me to have a qualified consultant confirm that all of these confusing symptoms are real and come from a physical cause. It has also made me more confident in telling people.
In an everyday context, every action I make must have thought attached to it concerning how it will make me feel at a later date - can I afford to do this activity in light of what I must do later, tomorrow, over the next few days. My energy is extremely limited and therefore precious. It cannot be wasted. As a young person this is hugely frustrating and limiting and even now I still mourn for the things that I cannot do, and for the freedom I used to have.
I have never been a very positive person, things usually come half empty rather than half full, but I have had to learn to search harder for the positive things. I truly appreciate the valued few who understand enough to ask the right questions, to give me space to rest without fuss or offense and who keep me in their prayers. I have attempted to learn more about God and his relationship with us. I have to admit that for a long while I was bewildered as to what God could possibly do with a weak and useless body like mine and the mystery of how God can show His strength through our weakness is something I have also been searching for. God gives and takes away, and He has given me so much since I last relapsed. I am sure He will continue to keep giving way beyond I can imagine.
I understand how difficult it is to know this illness if you don't have it (which is why I write on this blog) which is why today is so important. Please take some time to read posts by people like me, which often in themselves take up a lot of valuable energy and require great bravery to produce such honesty. Also, if you are interested, I have other blog posts that cover other aspects of the illness that I don't have space to cover here, such as a list of symptoms, practicalities I have had to go through as well as my thoughts and feelings. Thank you for taking the time to read this.
Showing posts with label Diagnosis. Show all posts
Showing posts with label Diagnosis. Show all posts
Monday, 12 May 2014
Thursday, 29 August 2013
My Life is More Than Tick-Boxes
Being sick/disabled produces so much paperwork! The acronyms go on and on: DSA, PIP, ESA... How else am I meant to get enough money to live off? Filling out all these forms and attending all these appointments turns into a full-time job.
My latest form has been the PIP. PIP stands for Personal Independence Payment and has taken over the DLA (Disabled Living Allowance) in the government's attempt to save money. They have aimed to save this money by allegedly only giving money to those who really need it. But it depends on your definition of 'need'.
Unfortunately, the government's idea of 'need' is very literal, which may sound fine to you as 'why should we pay to help people do things that they want to do? There are things I want to do but can't.'
As someone with CFS/ME I cannot walk for more than 15 minutes a day, extremely slowly. And that is with my parents being my carers and doing most things for me while at home. No one wants to walk that slowly so I walk alone. I can't walk to the shops and back so I have to make do with what I can buy cheaply online and without being able to choose. I can't walk from and to a normal parking space when going out somewhere.
So yes, I can eat and wash myself, but I can't do most things that make life at all interesting. I become some invalid waiting for people to come visit me. And they don't. I'm 19, and it's hard enough having to forgo things that I should be doing and that I want to do as a 19-year-old without being told that I really can't do them ever because either a) I'm not really disabled enough or b) we don't have enough money.
I hate being told that I'm not sick enough for things. Am I in some inbetween bracket? I'm not actually, I have most of the same symptoms as diseases such as lupus and MS and yet I am treated with much less respect. It is literally all in a name.
And so how do you convey these everyday challenges into answering questions with 3 tick boxes labelled 'YES', 'NO' and the ever vague 'SOMETIMES'?
My latest form has been the PIP. PIP stands for Personal Independence Payment and has taken over the DLA (Disabled Living Allowance) in the government's attempt to save money. They have aimed to save this money by allegedly only giving money to those who really need it. But it depends on your definition of 'need'.
Unfortunately, the government's idea of 'need' is very literal, which may sound fine to you as 'why should we pay to help people do things that they want to do? There are things I want to do but can't.'
As someone with CFS/ME I cannot walk for more than 15 minutes a day, extremely slowly. And that is with my parents being my carers and doing most things for me while at home. No one wants to walk that slowly so I walk alone. I can't walk to the shops and back so I have to make do with what I can buy cheaply online and without being able to choose. I can't walk from and to a normal parking space when going out somewhere.
So yes, I can eat and wash myself, but I can't do most things that make life at all interesting. I become some invalid waiting for people to come visit me. And they don't. I'm 19, and it's hard enough having to forgo things that I should be doing and that I want to do as a 19-year-old without being told that I really can't do them ever because either a) I'm not really disabled enough or b) we don't have enough money.
I hate being told that I'm not sick enough for things. Am I in some inbetween bracket? I'm not actually, I have most of the same symptoms as diseases such as lupus and MS and yet I am treated with much less respect. It is literally all in a name.
And so how do you convey these everyday challenges into answering questions with 3 tick boxes labelled 'YES', 'NO' and the ever vague 'SOMETIMES'?
Wednesday, 31 July 2013
The Pain of Diagnosis
So yesterday I went to the rheumatology department at St. Peter's Hospital in Chertsey, Surrey. The receptionist and the nurse were both friendly and helpful and everyone I had met at the hospital was eager to help. I was even ready to let the fact that they had lost my referral letter for around 3 weeks slide in the face of such helpfulness.
On my first visit I saw a doctor who told me her name was Dr. Lin. She was as good as the system could allow for, taking me seriously and ordering a multitude of tests. She understood the importance of a diagnosis for accessing support from my university and from the welfare system. I left the appointment pleased and hoping to see her in my follow-up appointment where I would hopefully get this all-important diagnosis. The wait was 8 weeks but such is the NHS.
It all went a little downhill though at my follow-up appointment. The staff were again thoroughly friendly and helpful until I reached the rheumatologist. From the off, it was obvious that the Dr. Williams I saw had no clue about CFS/ME and seemed to feel that I would be happier with a vague diagnosis that provided no cure or treatment than something that would. (You know things are bad when you would actually prefer it to be lupus).
He did give me a diagnosis, but this was a semi-diagnosis. He called it 'a chronic fatigue syndrome' with the emphases on the 'a' and the 'syndrome'. He made it clear that he had no idea what was wrong and that this was a name that was used to just bundle me in with all the other misfits of the NHS. My relief on getting a diagnosis was lessened quite a lot by this.
My list of questions that I was hoping to get at least some kind of answer to were met with a mixture of 'I don't know's and answers that came only from the rheumatologist's imagination. I even had to correct him on a couple of points. He suggested that my brain was imagining that my symptoms were worse than they actually were and yet quailed under my further questions.
I did not trust a word he had said. I left the appointment in tears upon realisation that I knew more about my illness than the 'specialist' did.
My GP had ironically sent me to someone 'more specialised' to diagnose me and I had ended up being diagnosed by someone with even less knowledge than her.
In what system is this acceptable?? I have been given a damning diagnosis without any compassion from a doctor who had no idea what he was doing. He offered no treatment or help despite Dr. Lin having promised me some. Dr. Williams had not even heard of CFS clinics. No further investigation was carried out and no referral to someone who may have more knowledge was made.
I am appalled by how things turned out yesterday and I know for a fact that my experiences are not uncommon. I think that this is partly due to the lack of proper research but also due to the lack of empathy, interest or honesty from a health 'professional' who spent most of the appointment giving me (in his own words) "politician's answers" - i.e. answers that were a load of rubbish and didn't actually mean anything.
Badly done, NHS, badly done!
On my first visit I saw a doctor who told me her name was Dr. Lin. She was as good as the system could allow for, taking me seriously and ordering a multitude of tests. She understood the importance of a diagnosis for accessing support from my university and from the welfare system. I left the appointment pleased and hoping to see her in my follow-up appointment where I would hopefully get this all-important diagnosis. The wait was 8 weeks but such is the NHS.
It all went a little downhill though at my follow-up appointment. The staff were again thoroughly friendly and helpful until I reached the rheumatologist. From the off, it was obvious that the Dr. Williams I saw had no clue about CFS/ME and seemed to feel that I would be happier with a vague diagnosis that provided no cure or treatment than something that would. (You know things are bad when you would actually prefer it to be lupus).
He did give me a diagnosis, but this was a semi-diagnosis. He called it 'a chronic fatigue syndrome' with the emphases on the 'a' and the 'syndrome'. He made it clear that he had no idea what was wrong and that this was a name that was used to just bundle me in with all the other misfits of the NHS. My relief on getting a diagnosis was lessened quite a lot by this.
My list of questions that I was hoping to get at least some kind of answer to were met with a mixture of 'I don't know's and answers that came only from the rheumatologist's imagination. I even had to correct him on a couple of points. He suggested that my brain was imagining that my symptoms were worse than they actually were and yet quailed under my further questions.
I did not trust a word he had said. I left the appointment in tears upon realisation that I knew more about my illness than the 'specialist' did.
My GP had ironically sent me to someone 'more specialised' to diagnose me and I had ended up being diagnosed by someone with even less knowledge than her.
In what system is this acceptable?? I have been given a damning diagnosis without any compassion from a doctor who had no idea what he was doing. He offered no treatment or help despite Dr. Lin having promised me some. Dr. Williams had not even heard of CFS clinics. No further investigation was carried out and no referral to someone who may have more knowledge was made.
I am appalled by how things turned out yesterday and I know for a fact that my experiences are not uncommon. I think that this is partly due to the lack of proper research but also due to the lack of empathy, interest or honesty from a health 'professional' who spent most of the appointment giving me (in his own words) "politician's answers" - i.e. answers that were a load of rubbish and didn't actually mean anything.
Badly done, NHS, badly done!
Friday, 5 July 2013
Pacing
The exam season is thankfully well over but my body is still reeling from the effort of a first year at university.
My aim, once term ended, was to spend the entire 4 month summer holiday doing my utmost to increase my health as much as possible. Doctors appointments are few and far between, and appear to be following a philosophy that my illness is all in my head, despite the rheumatologist I went to see saying she thought it was a biological illness. And so, my health is in my hands! What a challenge!
I've never been a very disciplined person and I like what is bad for me way too much so this has been a very difficult turnaround. I have been aiming to reduce my symptoms through a process called pacing. It's got quite a vague name and description and probably means different things to different people. Based on trial and error, and common sense, I have described it in my life to mean doing as much as I can without producing symptoms.
Sounds simple? No. Not only is there the frustration of 'as much as I can' meaning sitting up in a chair for a couple of hours and maybe ironing a couple of things, but there is the daily fluctuations that characterise this condition. Some days I am capable of doing more and others, less. And it is so tempting to do much more on a day that you feel you can do much more but this only leads to the next few days not being able to even sit upright. This is called a 'boom and bust cycle' and it requires a lot of self restraint to not succumb to it.
I guess the main idea is that without pacing and control, the good days and bad days become much more distinct (like the idea that the rich get richer and the poor get poorer) and the overall trend is a downward inclination. But by reducing the difference between good days and bad days (or as I prefer to call them up days and down days) meaning that life is a little more predictable and the down days are not so bad. I think this also encourages the overall trend to go up too but it's too soon to tell.
So hopefully 4 months will be enough for the pacing to make enough of a difference that going back to university in the Autumn will be possible.
The next step is to get a proper, official diagnosis from someone who is willing to pass it on to student finance and those in charge of handing out benefits but that's another battle!
My aim, once term ended, was to spend the entire 4 month summer holiday doing my utmost to increase my health as much as possible. Doctors appointments are few and far between, and appear to be following a philosophy that my illness is all in my head, despite the rheumatologist I went to see saying she thought it was a biological illness. And so, my health is in my hands! What a challenge!
I've never been a very disciplined person and I like what is bad for me way too much so this has been a very difficult turnaround. I have been aiming to reduce my symptoms through a process called pacing. It's got quite a vague name and description and probably means different things to different people. Based on trial and error, and common sense, I have described it in my life to mean doing as much as I can without producing symptoms.
Sounds simple? No. Not only is there the frustration of 'as much as I can' meaning sitting up in a chair for a couple of hours and maybe ironing a couple of things, but there is the daily fluctuations that characterise this condition. Some days I am capable of doing more and others, less. And it is so tempting to do much more on a day that you feel you can do much more but this only leads to the next few days not being able to even sit upright. This is called a 'boom and bust cycle' and it requires a lot of self restraint to not succumb to it.
I guess the main idea is that without pacing and control, the good days and bad days become much more distinct (like the idea that the rich get richer and the poor get poorer) and the overall trend is a downward inclination. But by reducing the difference between good days and bad days (or as I prefer to call them up days and down days) meaning that life is a little more predictable and the down days are not so bad. I think this also encourages the overall trend to go up too but it's too soon to tell.
So hopefully 4 months will be enough for the pacing to make enough of a difference that going back to university in the Autumn will be possible.
The next step is to get a proper, official diagnosis from someone who is willing to pass it on to student finance and those in charge of handing out benefits but that's another battle!
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