Ok class todays topic is fatigue.
I'm a bit of an expert on this unfortunately. I haven't been able to post as much as I would have liked recently due to the fatigue I have been suffering. Also a few days ago my right eye kept closing which leads to double vision and typing with double vision is hard!
Everyone feels tired, I used to say frequently before I became ill "I'm exhausted" and usually with good reason too. I was exhausted, I'd probably worked a twelve hour day, walked the dogs for two hours that day and done the housework. Anyone after that can say they are exhausted. The kind of fatigue or exhaustion I'm talking about goes right down into your very bones and there's no rhyme or reason to it.
Most nights I sleep between 8-9 hours, before all this I slept 6 to 7. I had also been known to go to work on no sleep - after assisting with the whelping of nine puppies. I remember that day as it was beautiful, I also remember it because when I got to bed that night, it was Saturday, I thought to myself crikey the last time I was here was Thursday night.
Even as a teenager I never really had the duvet days that others had. I used to resent sleep, I thought it was a dreadful waste of the precious time we have on earth. I did sleep more after having Mono but even that wore off. I had never really been one to lie in bed all day. Once I was awake I was up and ready to go. Sleep overs were a nightmare for me. Even if we had been out clubbing until 3am I would still wake up by 7.30am, much to the annoyance of friends. I would end up going home before they had even woken up.
So now I'm a 8-9 hours kinda girl and if I'm feeling really rough during the day I will go back to bed for 2 or 3 hours and sleep some more. Sometimes I wake up really refreshed and feel like I have some energy, but most of the time now I wake up feeling groggy and disorientated. Every night at some point I will wake and shoot bolt upright in bed with the feeling that my throat has completely closed over and I can't catch my breath. My mouth is dry and there are tears running down my face. This used to really scare me, but it has become such a regular feature of my night time routine that I just grab a drink and then go back to sleep.
When I feel this fatigue that I now suffer with, its all encompassing. Even a rest or a period back in bed will not shift it. Every movement feels like it takes an eternity. Every limb feels like theres a fat toddler attached to it and won't let go.The worse thing about this fatigue is the inability to think straight.
I like to think that I am a reasonably intelligent person - ok my spelling can be off sometimes and I apologise for that! When I'm hit by this fatigue I can't think, even about basic things. I see patterns and connections with everything, its the way that I my thought process works. Even if its really obscure connections. I used to have a photographic memory, I could read a document and then recite it back to you almost word for word. When the fatigue hits I struggle to remember how to make a cup of coffee! (And I take my coffee black so there's not a great deal to think about). I can't trust myself to make rational or reasonable decisions. I feel like a liability.
I feel like I am a battery that has been drained of all its energy, but theres no way for me to get any more juice and recharge myself.
Sometimes the only way I can get a clear head is to plug myself into my oxygen concentrator for a few hours. Today is one of those days. I woke up in such a fog after having some really vivid dreams. I did feel a tiny bit short of breath and just ignored it as it happens most days. It wasn't until I went to have a shower that I noticed my lips were blue, as were my nail beds. I felt the temperature of my hands and they were warm so my nails weren't blue because I was cold. I had a shower and then rested for 30mins. It was nice as I could finish the book I had started last night.
I've been on my oxygen concentrator for around 2 hours and I feel perkier now than I have in several days. My mind is clear and I can think straight. My muscles are still weak and I'm still sofa surfing but my thoughts are clear and strong and I don't feel like a liability. Today is a day when I wont try and set the kitchen on fire by forgetting to turn off the ceramic hob and then placing something flammable or combustible on top of it! (Which is why I'm not allowed to cook unsupervised any more!) Today is a day where I wont forget to put the phone down and block the other persons line for hours and I mean hours! Today will be a day when I remember to take my medication when the alarm goes off instead of just turning the alarm off and then forgetting to take it. Life wont be so hazardous today.
My early warning system Frankie, my 3 year old dog is obviously not so sure that the oxygen will be all I need today. Frankie was born just over 3 months before I got ill and has only been away from me for a week. (He was sold to another family who then had to give him back to us as their children were allergic. They named him Frank, which we changed to Frankie. Had I know we would keep him his name would have been Monty as his Pedigree name is Monte Carlo baby).
Frankie is my early warning system and he's my boy. I call him my early warning system as before I have a big crash or become ill with something other than MG, he will not leave my side. As I type this he is lying fast asleep beside me with his head on my lap. He's been like this since I got up. Just before I am ill he sticks to me like glue. I can't even use the bathroom without him barging in. This ba
behaviour usually starts three days before it happens and will only stop once I have recovered. The girls although I know that they love me dearly do not display this gift. Normally all three dogs will stay upstairs alseep until around 1030am, then Frankie and Willow will join me downstairs and then Mollie will eventually appear at around 1300. Today Frankie has been stuck to my side wherever I am in the house. As soon as I got up he was at my side. Im hoping that what ever it is that has provoked this response in him isn't too serious and will quickly pass. However with his sudden behaviour change it looks like I could be in for a few more rough days.
I will keep you posted!
Subscribe To
Posts
All Comments
Friday, 5 February 2010
Tuesday, 2 February 2010
Functional Symptoms.......
On Monday the Oxford hospital phoned to say that they would be arranging when I can be admitted for investigations. To be honest its been playing on my mind. I really really don't like being in hospital or actually having to deal with Dr's. Since becomming ill I have experienced the duplicity of the medical profession and its not nice. It has caused me to doubt that I am ill, although the physical evidence is over whelming. It has driven me to tears and caused me to question those close to me if they believe I am ill or if its all in my head.
I don't really have a choice about being admitted. If I go, I look like an attention seeker, which we already know they think I am. If I dont go I look like I dont want to be exposed as an attention seeker. I really am in a no win situation.
I have been lucky so far in the fact that no one has actually said the dreaded C word. Which is Conversion Disorder, ( I apologise now to you M, as I promised I wouldn't talk or think about this again, but it needs to be documented here.)Conversion disorder seems to be gaining popularity again and mainly in the field of Neurology. It is a "disorder" where the patient manifests his or her emotional or mental health problems by the body manufacturing symptoms such as ptosis, paralysis,Pain, trouble speaking, trouble swallowing and even blindness. You may have heard of hysterical blindness. I know I first heard of this when on the Australian soap neighbours the character "lucy" got it when I think, (it was a long time ago) her dog Bouncer went missing. So you see the stress of the issue surrounding the dog caused Lucy to go blind temporarily.
I am not doubting that there are indeed some patients who present at a neurology outpatients department who do indeed have a physical manifestation of their stress. However this diagnosis seems to be used a lot more frequently at present. For some interesting reading find the publication ANCR Jan Feb 2005 (volume 4 issue 6). This article talks about how 33% of Neurology Outpatients have no organic disease process going on, or in Neurology speak they have "Functional Symptoms". Its quite distressing reading if you are one of those patients with "functional symptoms" as it shows you how the neurologists view you and how they use certain termanology and patterns of speech to convince you they are doing everything they can to help you.
A man called Slater did a study on patients who had been diagnosed with Conversion disorder and found that 25% of them had been misdiagnosed. With the advent of the research many years ago the label conversion disorder seemed to slip from favour. However new research has bucked this trend and now says Slater was wrong and only 4% of every patient diagnosed with conversion disorder is misdiagnosed. That 4% still equates to 4 people out of every hundred with a serious medical condition being denied treatment because some one couldn't be bothered to a)listen or b) investigate the cause of this persons condition. I still feel that the error rate is probably a lot higher. We also need to know how many patients are being diagnosed by neurologists and how many by those in the mental health field.
Too many times as I search on the internet on forums and the like I am finding people with serious medical problems being told that they are mentally ill. One heart breaking story was a mother who's 9 year old daughter had collapsed at home. The mother took her daughter to the hospital, where the daughter developed further symptoms paralysis, pain and problems swallowing. The medics carried out tests and said they couldn't find the reason why she was ill and she had Conversion disorder diagnosed by her neurologist. The mother of this child was pleading for help on a site where you can post questions and Drs answer. It had been 10 months, her child was deteriorating they had been to family therapy and individual therapy and the child had taken medications for anxiety and depression. The childs hair was now falling out and she was in horrendous pain.So much so the child couldn't be cuddled as she would cry out in pain. The Dr on the Forum told her that he would be wary of a diagnosis of Conversion Disorder given by a neurologist. He then went on to give her the names of other Drs to contact.
If other Dr's from other specialities are wary of this diagnosis being given by a neurologist, why are they still being allowed to do this? Would an oncologist give this diagnosis? Would a pulmanologist give this diagnosis?
Let me reassure you my belief is there must be some good neurologists out there that care about their patients and who will do everything they can for them. Its just I'm yet to meet one.I truly hope that one day I will meet one I haven't given up hope.
Im concerned about neurologists diagnosing illnesses/ diseases outside their own speciality.
Its not uncommon to read on forums where people have serious medical problems that on their journey to a diagnosis they had been placed on anti depressants for mental health issues that didn't exist or only came about due to the frustration of dealing with the medical profession. I have discussed this several times with friends when we have said "is it ok to get emotional at a medical appointment?" The consensus is no - don't get emotional, its seen as hysteria.Then on the flip side of the coin don't be emotional and you become accused of being detatched or not being bothered by your problems. Not being bothered by your problems is one of the "markers" for Conversion disorder,as is suffering from period pains- nope you just can't make this stuff up. Its a catch 22 situation in which a patient can not win.
To me neurology seems to be the only branch of medicine, where they seem to think they know all the answers and thinking outside the box, is not required.
I don't really have a choice about being admitted. If I go, I look like an attention seeker, which we already know they think I am. If I dont go I look like I dont want to be exposed as an attention seeker. I really am in a no win situation.
I have been lucky so far in the fact that no one has actually said the dreaded C word. Which is Conversion Disorder, ( I apologise now to you M, as I promised I wouldn't talk or think about this again, but it needs to be documented here.)Conversion disorder seems to be gaining popularity again and mainly in the field of Neurology. It is a "disorder" where the patient manifests his or her emotional or mental health problems by the body manufacturing symptoms such as ptosis, paralysis,Pain, trouble speaking, trouble swallowing and even blindness. You may have heard of hysterical blindness. I know I first heard of this when on the Australian soap neighbours the character "lucy" got it when I think, (it was a long time ago) her dog Bouncer went missing. So you see the stress of the issue surrounding the dog caused Lucy to go blind temporarily.
I am not doubting that there are indeed some patients who present at a neurology outpatients department who do indeed have a physical manifestation of their stress. However this diagnosis seems to be used a lot more frequently at present. For some interesting reading find the publication ANCR Jan Feb 2005 (volume 4 issue 6). This article talks about how 33% of Neurology Outpatients have no organic disease process going on, or in Neurology speak they have "Functional Symptoms". Its quite distressing reading if you are one of those patients with "functional symptoms" as it shows you how the neurologists view you and how they use certain termanology and patterns of speech to convince you they are doing everything they can to help you.
A man called Slater did a study on patients who had been diagnosed with Conversion disorder and found that 25% of them had been misdiagnosed. With the advent of the research many years ago the label conversion disorder seemed to slip from favour. However new research has bucked this trend and now says Slater was wrong and only 4% of every patient diagnosed with conversion disorder is misdiagnosed. That 4% still equates to 4 people out of every hundred with a serious medical condition being denied treatment because some one couldn't be bothered to a)listen or b) investigate the cause of this persons condition. I still feel that the error rate is probably a lot higher. We also need to know how many patients are being diagnosed by neurologists and how many by those in the mental health field.
Too many times as I search on the internet on forums and the like I am finding people with serious medical problems being told that they are mentally ill. One heart breaking story was a mother who's 9 year old daughter had collapsed at home. The mother took her daughter to the hospital, where the daughter developed further symptoms paralysis, pain and problems swallowing. The medics carried out tests and said they couldn't find the reason why she was ill and she had Conversion disorder diagnosed by her neurologist. The mother of this child was pleading for help on a site where you can post questions and Drs answer. It had been 10 months, her child was deteriorating they had been to family therapy and individual therapy and the child had taken medications for anxiety and depression. The childs hair was now falling out and she was in horrendous pain.So much so the child couldn't be cuddled as she would cry out in pain. The Dr on the Forum told her that he would be wary of a diagnosis of Conversion Disorder given by a neurologist. He then went on to give her the names of other Drs to contact.
If other Dr's from other specialities are wary of this diagnosis being given by a neurologist, why are they still being allowed to do this? Would an oncologist give this diagnosis? Would a pulmanologist give this diagnosis?
Let me reassure you my belief is there must be some good neurologists out there that care about their patients and who will do everything they can for them. Its just I'm yet to meet one.I truly hope that one day I will meet one I haven't given up hope.
Im concerned about neurologists diagnosing illnesses/ diseases outside their own speciality.
Its not uncommon to read on forums where people have serious medical problems that on their journey to a diagnosis they had been placed on anti depressants for mental health issues that didn't exist or only came about due to the frustration of dealing with the medical profession. I have discussed this several times with friends when we have said "is it ok to get emotional at a medical appointment?" The consensus is no - don't get emotional, its seen as hysteria.Then on the flip side of the coin don't be emotional and you become accused of being detatched or not being bothered by your problems. Not being bothered by your problems is one of the "markers" for Conversion disorder,as is suffering from period pains- nope you just can't make this stuff up. Its a catch 22 situation in which a patient can not win.
To me neurology seems to be the only branch of medicine, where they seem to think they know all the answers and thinking outside the box, is not required.
Subscribe to:
Posts (Atom)