I noticed an interesting article recently, and it prompted me to think again about a posting I had been considering on this topic.
It was several years ago that I first encountered this, in relationship to my son who is diabetic. Or as I was told at the time, who has diabetes. It had me thinking about my own depression and how I consider this.
So I was told that I shouldn't say my son is a diabetic, because that defines him by his illness. Then I consider that he has to test and inject several times a day, a routine that impacts his life hourly. It affects his health, and, when he is not good at controlling his levels and ends up in hospital, that takes him out for a day or so.
So his illness affects every part of his life, every day, and will for the rest of his life. It seems to me that describing him as "a diabetic", in the sense that this aspect does define a lot of his life, it is an important and significant aspect of who he is. Now it is not all he is, but it is one aspect that defines him. He is a diabetic, he is a boy, he is a geek, he is my son. None of these define him totally, all of them seem like valid aspects that are defining - and will be for the rest of his life.
In the same way, I am happy to define myself as a depressive. I cannot remember when I first started to suffer from this illness, but my age was in single figures. I have battled with this for some 45 years, through my "formative" teenage years, through my working life, through my marriage and children. It would be disingenuous at the least to try to identify myself apart from an illness that has been present for most of my life.
That doesn't mean I welcome the illness, but that I accept that it is formative and critical to who I am. To pretend that I now have an existence that is not impacted by my illness is to live in a fantasy. My illness does not totally define me, but it impacts everything about me. I am more than my depression, but everything about me is impacted by it. I might not like it, but that is the truth.
So I can see the appeal of "person first" language, but I think it is a dangerous approach to chronic illness, because it is pretending that life is different from what it is. So for me, I will continue to describe myself as a depressive. That is who I am, and I am quite happy to acknowledge it.
Showing posts with label depression. Show all posts
Showing posts with label depression. Show all posts
Friday, 1 July 2016
Thursday, 17 March 2016
CFS and ME
At a recent visit to my doctors, she raised the possibility that I might have CFS, Chronic Fatigue Syndrome, also known as ME or PVFS. Which, I have to say, sucks big time.
So I have been exploring and considering what this might mean, what CFS might be caused by, at least in my case. I think I have come to an understanding that seems to work for me (and I am not offering any wider perspective, or any clinical perspective).
When I am ill, one of the things my body (and this is common to most people) does is goes to sleep. My mum says that I always used to do that, and I still do, because sleep is a natural healer. Often, when I am ill with a virus or similar, this works because the body has a chance to fight the problem, and I get better after a day or so.
The problem, as I understand it, is when this reaction goes out of control. In PVFS (Post Viral Fatigue Syndrome), the sleep response doesn't stop once the body is capable of handling the remaining infection. I have suffered with this before I think, and eventually I got over it - after three months.
The other time when it can kick in is when the body can tell that it is ill, but sleeping is not the solution. Depression is a case in point, when sleeping is unlikely to improve things. I suspect this is the case for me here, so I am hoping that this will lift given some time.
But this is not to dismiss the fact that ME can be, and often is, very long term - many years. I suspect this is still the same process, but where the response does not die away after time. the body continues to think that it needs to sleep to heal, but it doesn't.
So, that is how it feels. As I said, it is not a clinical assessment, just a representation of how it feels for me.
On a day when I have nothing else to do, I will sleep later than usual (9-9:30), enabling me to do a little bit, but nothing too strenuous. I will eat lunch around midday, and then need another snooze before being able to do a little bit in the afternoon. It is not unknown to be asleep or nearly asleep all afternoon. After tea, the evening is normally OK, but I am not a night owl, usually heading for bed for 10:00 - 11:00.
That has quite an effect on my life. I do manage to work, which is exhausting but satisfying. I know that I am fortunate to manage to work, despite the fact that this takes me out for the evening. What is more, it means that I cannot concentrate for a long period - this means that writing something like this blog is a struggle. Keeping the concentration to compose and type a piece of this is difficult.
"OK so it is just being tired then? I get that when I do too much". Once again, this is missing two of the three letters. The third word is "Syndrome", which just means that nobody really understands what it is about. The other two, that are so often missed are "Chronic" and "Fatigue".
"Chronic" means that it doesn't go away, it doesn't get better with sleep, it is always there, and there is no immediate chance of it going away. It is not just being really tired when you have been busy - it is being tired whether busy or not, whether you have had a good nights sleep or not.
"Fatigue" is not tiredness. It is the ache and struggle to move that comes with a body that wants to stay asleep, to recover, and not to have to move. And it is that ache that comes when you are so tired that your muscles are sore. And this doesn't go away with a bath and sleep.
So yes, it is real, and it is disabling.Over last weekend I was on a retreat, and I discovered what I could do, with no pressure. If I had a nap in the morning, and another one after lunch, I could cope and be gently sociable the rest of the time. I could do some writing and reading with this regime. One day I even managed to go out for a while (I would walk down the garden occasionally). That is about it. That is my ability without getting tired and incapable.
Against that it should be noted that I hold down a full time job. If you have understood that, you might realise just how much this costs me, how much it takes to achieve that and why I can do little else.
So I have been exploring and considering what this might mean, what CFS might be caused by, at least in my case. I think I have come to an understanding that seems to work for me (and I am not offering any wider perspective, or any clinical perspective).
When I am ill, one of the things my body (and this is common to most people) does is goes to sleep. My mum says that I always used to do that, and I still do, because sleep is a natural healer. Often, when I am ill with a virus or similar, this works because the body has a chance to fight the problem, and I get better after a day or so.
The problem, as I understand it, is when this reaction goes out of control. In PVFS (Post Viral Fatigue Syndrome), the sleep response doesn't stop once the body is capable of handling the remaining infection. I have suffered with this before I think, and eventually I got over it - after three months.
The other time when it can kick in is when the body can tell that it is ill, but sleeping is not the solution. Depression is a case in point, when sleeping is unlikely to improve things. I suspect this is the case for me here, so I am hoping that this will lift given some time.
But this is not to dismiss the fact that ME can be, and often is, very long term - many years. I suspect this is still the same process, but where the response does not die away after time. the body continues to think that it needs to sleep to heal, but it doesn't.
So, that is how it feels. As I said, it is not a clinical assessment, just a representation of how it feels for me.
On a day when I have nothing else to do, I will sleep later than usual (9-9:30), enabling me to do a little bit, but nothing too strenuous. I will eat lunch around midday, and then need another snooze before being able to do a little bit in the afternoon. It is not unknown to be asleep or nearly asleep all afternoon. After tea, the evening is normally OK, but I am not a night owl, usually heading for bed for 10:00 - 11:00.
That has quite an effect on my life. I do manage to work, which is exhausting but satisfying. I know that I am fortunate to manage to work, despite the fact that this takes me out for the evening. What is more, it means that I cannot concentrate for a long period - this means that writing something like this blog is a struggle. Keeping the concentration to compose and type a piece of this is difficult.
"OK so it is just being tired then? I get that when I do too much". Once again, this is missing two of the three letters. The third word is "Syndrome", which just means that nobody really understands what it is about. The other two, that are so often missed are "Chronic" and "Fatigue".
"Chronic" means that it doesn't go away, it doesn't get better with sleep, it is always there, and there is no immediate chance of it going away. It is not just being really tired when you have been busy - it is being tired whether busy or not, whether you have had a good nights sleep or not.
"Fatigue" is not tiredness. It is the ache and struggle to move that comes with a body that wants to stay asleep, to recover, and not to have to move. And it is that ache that comes when you are so tired that your muscles are sore. And this doesn't go away with a bath and sleep.
So yes, it is real, and it is disabling.Over last weekend I was on a retreat, and I discovered what I could do, with no pressure. If I had a nap in the morning, and another one after lunch, I could cope and be gently sociable the rest of the time. I could do some writing and reading with this regime. One day I even managed to go out for a while (I would walk down the garden occasionally). That is about it. That is my ability without getting tired and incapable.
Against that it should be noted that I hold down a full time job. If you have understood that, you might realise just how much this costs me, how much it takes to achieve that and why I can do little else.
Tuesday, 25 August 2015
Depression
OK, I thought there is a place to put my thoughts together on what this actually means. Some of these have been written elsewhere, but it is a personal perspective.
1. Don't ask "why are you depressed?" It is a meaningless question. Why do you have a cold? Why do you have poor taste in clothing? For me, there is probably a genetic disposition, and there have been events that have knocked my brain into a different state. None of which answers "why?" to me or to anyone else. I wish I knew, because I could then sort it out. But it is not a rational decision or choice. It is an illness, an aspect of my broken body.
2. "A depressive" vs "have depression". My son has diabetes, and I was once told off for saying that he was "a diabetic", because that shouldn't define him. Rather, I should say that he has diabetes. While it is true that his illness doesn't entirely define him, something that should involve testing and injecting 4-5 times a day, avoiding sugary food and drink, and meaning he cannot walk as well as he could does pretty well define his life and activity. It is an all-encompassing aspect of him, 24/7, and something he cannot get away from.
In the same way, for example, that I am a Christian. It is not something that just impacts me some of the time - it is not just about what I do on Sundays. My faith is an integral part of me every day, in all I do. I cannot escape it for a while, and I do not expect to ever grow out of it: even if I do, its reality over so much of my life is permanent. And the same is true of my depression, in a more negative way. It is permanent, it is always an aspect of my life, and I do not expect to leave it behind permanently. So I am a depressive. I am a Christian. I am a parent. None of these totally defines me, but they are quite fundamentally part of who I am. Rewording it does not help.
3. You cannot recognise a depressive. It is easy to assume that the grumpy, miserable person at work is most likely to be depressed. You may well be wrong - they might just be a grumpy, miserable person with poor social skills (in my business, that is quite likely). If you want to find the depressed person at work, look for the lively one, the chatty one, the one who is always joking. They are as likely to be suffering from depression at any particular time. Many people manage their illness well, and are not obviously "depressed", but that does not mean that they are not suffering. Very many depressives cannot talk about their feelings, their illness, how they are at any particular time. Just because someone appears fine, or says they are fine, doesn't mean diddly squat.
4. Sometimes, depression means that I feel miserable. Sometimes, it means that I have to struggle to get out of bed in the morning. Other times, it means that I am out of bed easily in the morning, because I haven't slept well, and am awake early. Always, it means that the basics of life are a struggle. Always, every day. Much of the time, I have coping mechanisms and the medication help to enable me to get through the day. But "getting through the day" does not mean that I am not struggling through it all. The fact that I am high functioning" means that I can achieve some things that others cannot - working and studying for a PhD at the same time. But that does not mean that getting up and going out for a walk is not a huge burden at times.
5. Suicidal thoughts and feelings are a constant companion. Now before you call the doctor, this does not mean that I am suicidal all of the time. It means that the nagging thoughts and ideas are always there. Sometimes, in all honesty, they are welcome thoughts, because life seems to be too much. But mostly, they are annoying distractions making me struggle even more with life. I live with thoughts in my mind that many others would find extremely upsetting. I am numb to them, but it doesn't mean they are not still distracting, tempting. It is just another thing that some of us have to deal with constantly.
6. Yes, it is a real illness. Just because you cannot see anything wrong, doesn't mean it is "all in my mind". Well it is, but not in the sense of being made up. I realise that there is nothing physical that you can see, but that does not mean that it is not real. It is real, and it is disabling, because it breaks my ability to think straight and clearly. This impacts my ability to do anything. People who assume it is not a "real" illness tend to be people who don't suffer from mental illness. Just because it is not visible, just because it is not clearly and fully understood does not mean it is not real.
7. I am sorry if you don't like this, but there is no cure for many mental illnesses. There are treatments, and these are effective and important. Treatments help us to cope with life with a mental illness, and sometimes they enable us to live and cope while the brain cures itself. There are forms of treatment like CBT can change our way of thinking, but these are also life-long treatments - the fact that they are not pills does not really make a difference.
I have said it before, but God does not heal most mental illnesses most of the time. This is not to either deny that He might on occasions, but that the answers to mental illness are not to be prayed about and that is it. Prayer does help, mainly because events do cause problems, and prayer for help through these times helps and is important. I would LOVE God to cure me of my depression. However, I don't expect it, because it is far more complex, it is intimately engaged with who I am. God made me like this, and to take it away would change who I am - the good as well as the bad.
8. "You would feel better if you lost some weight". Or whatever. Yes, I know. Of course, the reason I have a weight problem is that I eat when I am depressed. So going on a diet might make me feel better in the longer term, but in the shorter term, I will struggle to cope. For others, it is the same story, but sometimes with other problems. We do have a tendency to do things that are not good for us, and we know about it. The think is, if I ate less, and my depression was better, I would be better.
9. I am not dangerous. Well, I could be if I hear too much rubbish about mental health problems and the people who suffer from them. There are some important statistics to understand: some one in three people suffer from mental health problems. This means that one could expect one in three people involved in violent crime would have mental health problems. In fact, there are all sorts of reasons why this figures is higher, but connection does not imply causality - or not necessarily in the direction indicated.
In truth, people with mental health problems are often involved in crimes and violent crimes especially, mainly because the support services for those with mental health issues often end up failing the suffering. But the idea that people with mental health problems are inherently dangerous is wrong. We are not, as a whole. Of course, there is a strong argument that some of the most psychotic, violent crimes are indications of mental health problems. But that is not an indication that people with mental health are inherently dangerous.
So this is what I live with every day. This and more, and I fight through it, and live a reasonably normal life. So, of course, when I can do no more, I am just lazy, using my illness as an excuse. Sigh.
1. Don't ask "why are you depressed?" It is a meaningless question. Why do you have a cold? Why do you have poor taste in clothing? For me, there is probably a genetic disposition, and there have been events that have knocked my brain into a different state. None of which answers "why?" to me or to anyone else. I wish I knew, because I could then sort it out. But it is not a rational decision or choice. It is an illness, an aspect of my broken body.
2. "A depressive" vs "have depression". My son has diabetes, and I was once told off for saying that he was "a diabetic", because that shouldn't define him. Rather, I should say that he has diabetes. While it is true that his illness doesn't entirely define him, something that should involve testing and injecting 4-5 times a day, avoiding sugary food and drink, and meaning he cannot walk as well as he could does pretty well define his life and activity. It is an all-encompassing aspect of him, 24/7, and something he cannot get away from.
In the same way, for example, that I am a Christian. It is not something that just impacts me some of the time - it is not just about what I do on Sundays. My faith is an integral part of me every day, in all I do. I cannot escape it for a while, and I do not expect to ever grow out of it: even if I do, its reality over so much of my life is permanent. And the same is true of my depression, in a more negative way. It is permanent, it is always an aspect of my life, and I do not expect to leave it behind permanently. So I am a depressive. I am a Christian. I am a parent. None of these totally defines me, but they are quite fundamentally part of who I am. Rewording it does not help.
3. You cannot recognise a depressive. It is easy to assume that the grumpy, miserable person at work is most likely to be depressed. You may well be wrong - they might just be a grumpy, miserable person with poor social skills (in my business, that is quite likely). If you want to find the depressed person at work, look for the lively one, the chatty one, the one who is always joking. They are as likely to be suffering from depression at any particular time. Many people manage their illness well, and are not obviously "depressed", but that does not mean that they are not suffering. Very many depressives cannot talk about their feelings, their illness, how they are at any particular time. Just because someone appears fine, or says they are fine, doesn't mean diddly squat.
4. Sometimes, depression means that I feel miserable. Sometimes, it means that I have to struggle to get out of bed in the morning. Other times, it means that I am out of bed easily in the morning, because I haven't slept well, and am awake early. Always, it means that the basics of life are a struggle. Always, every day. Much of the time, I have coping mechanisms and the medication help to enable me to get through the day. But "getting through the day" does not mean that I am not struggling through it all. The fact that I am high functioning" means that I can achieve some things that others cannot - working and studying for a PhD at the same time. But that does not mean that getting up and going out for a walk is not a huge burden at times.
5. Suicidal thoughts and feelings are a constant companion. Now before you call the doctor, this does not mean that I am suicidal all of the time. It means that the nagging thoughts and ideas are always there. Sometimes, in all honesty, they are welcome thoughts, because life seems to be too much. But mostly, they are annoying distractions making me struggle even more with life. I live with thoughts in my mind that many others would find extremely upsetting. I am numb to them, but it doesn't mean they are not still distracting, tempting. It is just another thing that some of us have to deal with constantly.
6. Yes, it is a real illness. Just because you cannot see anything wrong, doesn't mean it is "all in my mind". Well it is, but not in the sense of being made up. I realise that there is nothing physical that you can see, but that does not mean that it is not real. It is real, and it is disabling, because it breaks my ability to think straight and clearly. This impacts my ability to do anything. People who assume it is not a "real" illness tend to be people who don't suffer from mental illness. Just because it is not visible, just because it is not clearly and fully understood does not mean it is not real.
7. I am sorry if you don't like this, but there is no cure for many mental illnesses. There are treatments, and these are effective and important. Treatments help us to cope with life with a mental illness, and sometimes they enable us to live and cope while the brain cures itself. There are forms of treatment like CBT can change our way of thinking, but these are also life-long treatments - the fact that they are not pills does not really make a difference.
I have said it before, but God does not heal most mental illnesses most of the time. This is not to either deny that He might on occasions, but that the answers to mental illness are not to be prayed about and that is it. Prayer does help, mainly because events do cause problems, and prayer for help through these times helps and is important. I would LOVE God to cure me of my depression. However, I don't expect it, because it is far more complex, it is intimately engaged with who I am. God made me like this, and to take it away would change who I am - the good as well as the bad.
8. "You would feel better if you lost some weight". Or whatever. Yes, I know. Of course, the reason I have a weight problem is that I eat when I am depressed. So going on a diet might make me feel better in the longer term, but in the shorter term, I will struggle to cope. For others, it is the same story, but sometimes with other problems. We do have a tendency to do things that are not good for us, and we know about it. The think is, if I ate less, and my depression was better, I would be better.
9. I am not dangerous. Well, I could be if I hear too much rubbish about mental health problems and the people who suffer from them. There are some important statistics to understand: some one in three people suffer from mental health problems. This means that one could expect one in three people involved in violent crime would have mental health problems. In fact, there are all sorts of reasons why this figures is higher, but connection does not imply causality - or not necessarily in the direction indicated.
In truth, people with mental health problems are often involved in crimes and violent crimes especially, mainly because the support services for those with mental health issues often end up failing the suffering. But the idea that people with mental health problems are inherently dangerous is wrong. We are not, as a whole. Of course, there is a strong argument that some of the most psychotic, violent crimes are indications of mental health problems. But that is not an indication that people with mental health are inherently dangerous.
So this is what I live with every day. This and more, and I fight through it, and live a reasonably normal life. So, of course, when I can do no more, I am just lazy, using my illness as an excuse. Sigh.
Subscribe to:
Posts (Atom)