Unlike majority of ME/CFS sufferers, my ME/CFS did not happen all the sudden. I had my episodes since I was 6 years old if it is not earlier. Gradually, severity of the illness increased over the time. I am 41 now, so I have this illness for at least 35 years.
It was not too bad at the beginning. I needed to stay in bed for couple of days at a time. I often fainted at morning school assembly. I was a slow, clumsy and uncoordinated child. I got dizzy spell all the time and feeling nausea quite often. But nobody really paid attention to me. Doctor pointed out that I had orthostatic hypotention, but it didn’t mean anything to anybody. Basically he told my parents that I did not have any problem and all the symptoms I claim were just my imagination. I had abusive parents and it gave them more opportunities to knock me down on ground. (I will leave Domestic Violence to another post as I want to concentrate on ME/CFS today.)
As I was growing into teenager, I had more fatigued days and stayed in bed for week or two at a time. I still have nightmares from these days that I would be expelled from school due to low school attendance. I was suffering from insomnia or hypersomnia. I had to resign from tennis club because the activity was exhausting me. Riding bicycle to school which other student did not have problem was becoming huge burden to me. My teenage era was hell for me and I admit I was also severely depressed due to domestic abuse and violence by parents.
When I became 20, I left parents house for good. I had saved money and enrolled into College. Studying and supporting myself in Tokyo was really hard. During this period, I experienced many ME/CFS relapses, but I did not know I was suffering from ME/CFS, then.
When I got a job, I was the most ambitious recruits. I was aware that I was socially disadvantaged and challenging. I worked hard, tried to prove that I was efficient business woman. I changed job few times. The main reason for changing job was for career advancement. But I admit that there was another reason as well. I was getting uncomfortable having many sick days and could not face other people’s critical eyes. I always used up sick days. I even used up annual leave for extra sick days. And sometimes, I took unpaid sick days, which was not acceptable in Japanese work environment. They do not expect women to become efficient and productive member of corporation, but they do expect them to show up to work on time no mater what and keep smiling to cheer the work environment. No matter how hard I tried, whenever I was struck with ME/CFS symptoms, I just could not get out from bed. I tried, but after couple of days, my body just could not do anything anymore. People thought it was just fatigue not flu, I should just get out the bed and be at work on time. Everybody was tired, not just me.
I must mention that commuting in Tokyo is brutal. With weakened muscles with unstable high heeled shoes, being pushed around, supporting weights of whole people in the train (when train breaks, it happens), trying to avoid perverts and molesters in a non existing personal space, climbing up and down to deep subway stations (not all station has escalator for every commuters, and some people work blocks to catch the next connecting train), and carrying heavy shoulder bag filled with thick heavy Filofax were all too hard.
During my 9 years Tokyo era, I visited many doctors. I can not remember how many, but it is not exaggeration if I say more than 10. No doctor found anything wrong with me. I also experienced chest pains, muscle, joints and spinal pains and transient paralysis. But they did not believe me. They thought and laughed that I was making up such unbelievable and pathetic lies to cover up my day off. Everytime they check result of blood test, they look at me with disgust and told me there was nothing wrong with me. Some mentioned abnormality in blood count, but the report was not showing as a bad result. They believed I was hypochondriac even they didn’t tell me so. And some said that doctor hopping was one of the characteristics of hypochondriacs. Many told me I had to change my life style and stop working hard. Some even told me to stop partying every night, even I wasn’t a party girl at all. One doctor gave me sleeping pills. But it did not help my severe insomnia. When I told doctor that the medicine weren’t helping, he got annoyed and told me I wasn’t taking the medicine the way I should. Honestly, I always followed doctors instructions with commitment. The more I tried, the more doctors hated me.
I even had full health check at Japan’s top university hospital. As the result didn’t show any problem, my reputation at work only got worse. During my struggle of finding reason and cure for the fatigue, I became aware of Chronic Fatigue Syndrome. At the same time, I learned that no doctor would take it serious. (Doctors called the symptoms “Yappy Flu” and dismissed the condition as it is a life style problem, not an illness.)
With many other reasons, I saved money, came to Australia to study at university. I started my career here in Australia, got married and got degree. I became Australian by choice with pride. During this time, I saw many doctors, but their response was the same as Japanese doctors. They even didn’t bother taking blood test anymore and looked at me with annoyed expression that I was a trouble causing, dishonest hypochondriac. I even saw some Naturopath. Although I was a struggling self supporting poor student, I squeezed money out to pay for their consultations and expensive vitamin and mineral supplements. But they didn’t help much. Then I started questioning ethical standard of their practice. (I am not saying all the naturopath are dodgy. But there are some who can take advantage of desperate people.)
I was having trouble with marrige mainly because my husband’s heavy drug use. I pleaded my parents-in-law to help me to solve the problem. To keep me quiet about his drug use, they often steer problem from his drug use to my health problem.
One day, I agreed my father-in-law to see his family doctor, Dr AD. I expressed my suspicion about having ME/CFS. Before the first appointment, he made phone call to a “mystery doctor”, then discussed with Dr AD about my situation without me. He personally took me to Dr AD, thanked him for meeting me and gave him a bottle of wine. At this stage, I believed that my parents-in-law really cared about me and I thought I was lucky to have nice in laws.
I know now who the mystery doctor was. He is a Sydney based famous gynaecologist, Dr RG, who often appears on television programs and comment on general health issues. He happens to be a distant relative to my husband’s family. I was horrified to read Dr RG’s comment on ME/CFS recently. He is non ME/CFS believer and his opinion about ME/CFS is not a real illness. And this opinion was given to Dr AD.
In April 2001, I had my first appointment with Dr AD. My impression of him was great. He was friendly and caring. With the extra efforts of my father-in-law, I felt I could finally met the doctor who would listen and believe me. At the beginning, he told me that I did not have ME/CFS without asking me any questions. But he diagnosed me with depression and explained that fatigue were caused by clinical depression. He told me that I would have to be on anti-depressant for two years even I am well as I was suffering from it too long. But I would get better. He gave me option of two anti-depressants. He answered my questions that there were no side affects from these medicines and they were similar kinds. With his comment that Effexor EX tend to be addictive and people end up staying on it for rest of their lives just because they can not bear the withdrawal symptoms, I chose Zoloft. He also advised me not to talk about depression as there were social stigma attached to it and people tend to criticise and mis-judge my charactor. He ordered blood test, but there was nothing wrong as he expected.
I didn’t care about social stigma. I refused to hide I was suffering from depression. I belived that my friends and co-workers knew me well enough to see the stigma attached to depression were wrong. And I rather received support and compassion from them not criticism. I was over the moon because Dr AD finally gave name to the disabling fatigue and told me it could be treated. It was huge relief to me and I was willing to do anything to treat this illness and get rid of the fatigue. The only social stigma I suffered was from my husband. He looked at me as if I was the criminal psycho locked in institution we see on TV. He could not look at me as same person anymore, even he didn’t say it.
After three weeks I started taking the medicine, I was supposed to feel the beginning of improvement. I waited, waited and waited. Nothing changed. Instead of getting better, I was getting worse. I intensely researched on Internet about depression, I signed up on message board of DepressionNet and read about other people’s experiences with the illness and medications. Eveytime I saw Dr AD, he increased the amount of medicine. But fatigue kept getting worse. Quite often, I explained Dr AD that I did not have typical symptoms of depression. I was motivated and I didn’t feel sad or suicidal. I had goals and purposes in my life. My main complain was disabling fatigue and it was getting worse and worse. On top of that, the anti-depressant brought up uncontrollable anger, obsessive behaviour and self harm, and it actually started making me depressed. The more I researched on depression, the more I got confused because there was no symptom fits with symptoms of depression except for fatigue.
Finally, the amount of anti-depressant became more than maximum amount and my fatigue was still getting worse, he referred me to a psychiatrist. At this stage, I became almost bed ridden and was taking time off from work for couple of months.
This psychiatrist, Dr GF helped me with my childhood experience. Although I could not agree with all of his opinions, it opened up opportunity for me to deal with my childhood demons. But I know now he also made my ME/CFS worse. While I was seeing him, I was also resting in bed. And I know now that it was the only reason I got slightly better. I decided to go back to work and he endorsed my wish. And he also instructed me Gradual Exercise Therapy (GET). I had a feeling that exercises were making me more fatigued and explained it to him. But he kindly explained that it was only my imagination and there were proof that exercise helps chronic fatigue. (But not ME/CFS) We were also working on Cognitive Behavior Therapy (CBT), and getting more fatigued from doing excercise was one of negative thoughts that I needed to work on. My fear and experience of getting fatigue from exercise were just my imagination. All the symptoms I was experience were result of my wishful thinking and I had to change the way I think. I also stayed on more than maximum amount of anti-depressant. He also prescribed me with sleeping pills. But they made me sick and did not work. When I mention it, I was told that I was not taking it right. After the introduction of CBT, I couldn’t mention anything negative as I feared he would think I was not practicing the CBT.
Within a month I got back to work, fatigue started disabling me again and I kept telling myself it was only my imagination. It really did not make sense because getting back to work was my wish and hope, therefore I shouldn’t experience negative fatigue from being positive. Within another four months, I could not do anymore exercise and was really struggling with fatigue. But I could not tell Dr GF because I knew he would tell me that I was not practicing GET and CBT the way I shoul. When I started failing with GET, I had to use more will power to do exercise because I believed that the fatigue I was experiencing was not real. He sent a letter to Dr AD telling I was doing so well that I did not need his help anymore. Within another two months, I was back to bed rest again, confused, frustrated and feeling guilty.
I had a very supportive employer. He allowed me to have time off from work again. But his attitude towards me was getting colder as well. After all, if I could not get back to work, he had to find someone else. He had to run his business and he could not afford to keep unreliable employee no matter how keen she was to keep her career. He also could not understand depression and he believed if one has ambition, he/she can make anything possible, even beating illness was possible. That was my belief, too. And I was so frustrated that I could not prove it to myself. Talking about ambition and will power, I thought I was a living proof of them existing. Despite of being born to abusive parents, I kept my intergrity and hope that I could become a person I want to be and live a life I want to live. I changed many impossible in my life to possible. The never been easy and I tasted many failuers, but slowly I was acheiving my dreams and goals. Beating illness should be one of them.
Concerned friends and coworkers suggested that I had Chronic Fatigue Syndrome not depression, and gave me advise what vitamin and mineral supplement would work and I had to do more exercise and etc. They told me stories that someone’s daughter or someone’s husband suffered from CFS and they found this naturopath or this supplements and they are doing well now. Then, I had to tell them I had already tried that supplements, naturopath, exercise and so and so, but none of them worked. At this stage, I still trusted Dr AD and explained to my friends my GP denied possibilities of CFS at the beginning. I also explained that depression is a illness and nothing to do with strong will. Some also suggested to see another GP, but I was afraid to see someone else and only to get ridiculed again. Some warned that there were some GP who complete a special course about depression and they are entitled to extra rebates from government for each depressive patient they treat. Therefore, they tend to diagnose depression if they can not find any other reasons why the patient is ill. However, I was still loyal to Dr AD. He was the only doctor so far who was willing to treat me as a human being not as just another number and gave me diagnose to the fatigue nobody wanted to deal with.
So I kept complaing about disabling fatigue to Dr AD. By then, I was also experiencing other symptoms severely. But I could not bring myself mentioning them as I was afraid that Dr AD would also think I was hypochondriac. Afterall, fatigue is the one disabling me and I was dealing with pains with paracetamol. Despite my continuing loyalty, he was starting to get annoyed by my complain. He did no longer smile at me or look into my eyes, and kept repeating that fatigue was caused by unknown depression in me.
Next thing Dr AD did for me was to give me referral to another psychiatrist who works for hospital. When I contacted to the hospital, I was told that the psychiatrist was only available to hospital patient. I was not keen on staying hospital but asked what kind of treatment they give to their patients. They basically give lectures to patients about depression, some group therapy and exercises. I had enough knowledge about depression by then plus I already tried CBT with Dr GF and I did not feel like I need to stay in hospital to be educated about the illness. My husband was also annoyed about the idea that his wife was going to stay at psychiatric hospital. So I decided not to go.
Dr AD was annoyed by my decision. But I was also annoyed by him referring something he didn’t know well to his patient. How could he know that hospital stay would help me if he didn’t know what to expect? Even the practising field is different, I was also professional in accounting. I treated my clients with care and respect and only refer them to people/business I knew and trust. I never referred my client to someone whom I do not know. I took extra time to understand and get to know the people/business and their reputation before I refer.
I started doubting about diagnosis of depression more and more. More research and same results from internet also made me think that the fatigue must be coming from somewhere else rather than depression. I printed out results from researches and made list of other symptoms I had. My cognitive function was so bad and I could not remember what I wanted to talk with Dr AD so I wrote things down on paper. I was very confused and just wanted to get some answer. From what I learned from Internet, making list of questions was good way to prepare for doctors appointment. As soon as he noticed I had lists, I saw anger in his eyes. He didn’t want to know anything about my questions and the consultation was rushed. He printed out and signed another prescription for me and I was ushed out from his office. I kept my respective attitude towards him, but he took it as if I was challenging him. All I wanted was answer. In my accounting career, whenever I came across with unknown, I did extra research to help out client. And that was being profession. I sadly realised I became the annoying hypochondriac to Dr AD and was feeling uncomfortable seeing him again.
Next time, I made an appointment with his female colleague for pup smear. She was a young and caring doctor and made sure I asked all my questions. Being a female doctor, I felt comfortable asking if there was some way to ease PMS. I knew there wasn’t much they could do, but she got on to her computer and did research and printed out the information for me. Although that was the same information I got from Internet, I thanked her for trying. I also had my prescription refilled by her.
Because I could not show up to very important family Christmas lunch two years in row, father-in-law questioned me how my treatment with Dr AD was going. I had gotten worse than when I started seeing him two years ago, but they just did not accept it as truth. He is a wanna-be-politician and he behaves as if he has all the power in the world sometimes. He told me never give up and was going to have a word with Dr AD.
I was given another referral to psychiatrist, Dr TL via mother-in-law. Dr GF had retired. Dr TL was supposed to be better as he was more expensive and running a busy practice in centre of city. I made the first appointment and there was about a month waiting period.
At the appointment, I expressed my doubt about diagnosis of depression. He always wait for me to talk and never give out his opinion to me. Although I was on more than maximum amount of anti-depressant for more than two years, my fatigue got worse. I told him that I was not emotionally depressed and my only problem was fatigue, therefore the purpose of the consultation was to find the right medication for the fatigue. I explained how bad the fatigue gets and sometimes I even get paralysed and could not get up or lift my arm. There was nothing else I needed to talked about. The physical and non imaginable fatigue was the only thing stopping me from having happy life. I tried out a few different anti-depressants. They only made my fatigue worse and also aggregated neurological symptoms to unbearable degree. He also prescribed a couple of sleeping pills, but non of them worked. So I agreed to take Effexor EX that was originally suggested by Dr AD because it was the only type that didn’t give me terrible symptoms. Once again, I was told it would take about three to four weeks until it starts showing improvement.
New anti-depressant did not work and my fatigue was still disabling. I was struggling to keep appointments and I missed one appointment because my body got suddenly paralysed. They charged me penalty for the missed appointment and gave me a lecture how naughty I was to miss the appointment. Obviously they did not believe that my fatigue was real, but my mind conveniently brought out extreme fatigue on the day to miss the appointment.
Then he diagnosed me with ADHD and it confused me more. It also confused my friends and even Dr AD, as I was not showing any sign of being hyperactive. According to Dr TL, physicall hyperaction was controlled by my mind as I grow up and it consealed inside of my body to become mind hyperaction. And he prescribed me Dexamphetamin and told me that will give me more energy to deal with my life. I did research on internet about his theory of my ADHD, but I did not find any imformation confirming it. Dexamphetamin gave me temporary fake energy, and I felt even more tired after while. I explained, then, he increased the amount. I still felt that it only gave me temporary energy and I ended up getting even more fatigued afterwards.
The purpose of seeing Dr TL was to find the right medication. I was paying expensive consultation fees to him for quite sometime, but there was no sign of improvement. My intuition was not comfortable when he refere medicines from his own experience with them. He even suggested I had to accept life with fatigue. He told me he was just joking and I would get better straight after. But I knew it was Froiderian slip and he spoke his true opinion there. I admit that was my thought as well… I had to stop hoping that I would get better but learn to live with fatigue…
In August 2005, I was too ill to get out from bed and was also suffering severe pains and other neurological symptoms. I could not go out to refill my prescriptions. My husband wasn’t helping me. My doubts about diagnose of depression and effectiveness of medication was getting bigger and bigger. First time since I started seeing doctors for depression, I disobeyed their instruction. I decided to stop taking medications. I severely suffered from withdrawal symptoms of Effexor EX and Dexanphetamine. The severe part of withdrawal lasted about 10 days. I remember Dr AD mentioned that withdrawal of Effexor EX was so severe that many people decide to stay on it because they can not cope with the withdrawals. In my opinion, the severity of withdrawal was not so bad comparing to the length and degree of fatigue and pains I suffer from ME/CFS.
Father-in-law insisted me to see Dr AD again. So I made an appointment and mother-in-law took me to him. I was so ill and I could not drive myself. My husband who was driving my car refused to take me to the doctor. I informed Dr AD of my decision of not taking medication anymore. He expressed his opinion that I should stay on the medication and advised to come and see him if I change my mind. On that occasion, I asked him if there was something I could do to stop my husband’s drug habit. He basically said that I should drag him to rehabilitation centre, but nobody can force a drug addict to come clean. Just like psychiatrists, he suggested I should rather consider ending the marriage if it was making me depressed.
After about three month I stopped the medication, rage, obsessive behaviour and urge to harm myself disappeared. Unfortunately, severe fatigue was still there. I missed another important family Christmas lunch and father-in-law again demanded me to see Dr AD and told me I had to be persistant, otherwise doctors would not do anythng for me. (Well, hadn’t I been persistant?)
I made another appointment with Dr AD anyway just to show respect to father-in-law. I sensed that they sometimes talk about me behind my back. This time, I requested to be the last patient for the day. I prepared my list of questions. And mother-in-law once again took me to his office. He was polite in manner, but his face was very cold. While I was explaining my problem with fatigue and expressed my hope of finding cure, he was typing letters to his computer, printing them out and signing them. He did not look at me and he was very annoyed. I also asked about my husband’s drug problem because my Internet research advised I should speak to my GP if I concerned about family’s drug problems. Meeting was long but it was only me desperately explaining the problems and convince him that they are real. When he signed the last letter he was preparing, he told me very clearly that there was nothing he could help me. And I was politely ushed out from his office. As I was walking out from his office, I asked my very last question, “All my research showed that I do not have any significant sign of suffering from depression. Why do you know I have one?” He looked into my eyes, and said, “I am practising medicine for very long time. And I just know.” I tried to assure him that I was not having a go at him and my question was not personal. But I do not think he cared. And it was the last appointment I had with him and I will not have another one no matter who demands me to have one. I was sad. I trusted him and followed his instructions more than 4 years. I only became more ill during this time. I honestly believed he could help me, instead, he became one of the doctores I saw before him.
I started researching on fatigue instead of depression. I did not pay much attention of ME/CFS at this stage as Dr AD denied specifically. I still respected his opinion as a general practitioner. I knew what takes for a professional person to keep his/her career accountable, ethical and competent. From information I gathered, I suspected I had MS.
I made an appointment with the female doctor. To my surprise, she became very cold just like Dr AD. I suspected that something was written on my file that I was a DIFFICULT PATIENT. When I started explaining my suspition about MS, she interupted me from reading the list I prepared. She was rather shocked to know that I had been bed ridden because of fatigue. Then she intensely fired questions to me. “If you are bed ridden, who does the household chores?”, “How are you paying for bills if you can’t work?” and so on and so on. It was rather accusation that I could not be so fatigued because I should be able to do house keeping chors and go to work to pay for bills. Well, nobody was doing house keeping chors at this stage, but I lied my husband was doing them because I was embarrassed her to know that my house was covered in piles of dust, shower was covered by black mould and kitchen sink has piles of dirty dishes and I hardly changed my cloths because I just couldn’t. And I wispered that I was using credit card to pay for household bills.
She asked history of my fatigue and wrote referral letter to Rhumatorosist. She also ordered me to take blood tests, but I did not need to come back to check the result with her. As I was leaving her office, she said with a very cold face, “you can get fatigue from depression, you know.” I looked at her but I could not say anything back.
I asked my husband to take me to the doctor this day. He was very annoyed by the request and made sure that I would never ask him again by his actions. He drove the way I hated. He tail gates cars with high speed and abused them if they brake. When I scream with fear, he directed his anger at me and yelled that I did not need to scream and it was making him in danger. He was angry when I asked to take me to pathologist. It was very hot day. I did not know where the pathologist was, but told him name of the shopping centre I was given. He was very angry. It made me angry, but I was too scared to say anything. He parked the car at the entrace of the shopping centre and looked away from me. I asked him if he could see amy sign of pathologist. But he ignored me. So I started walking in the hot sun not knowing where to go and I was walking to wrong direction. Stress from his attitude and extreme heat made my condition worse and I was walking like a zonbe and my brain was heavily fogged. After asking people around, I found the pathologist’s office at the farest coner from where he parked. When I reached the door of the pathologist, I realised it was just upstairs from his regular barber. He must knew where the pathologist office was.
When I got home, I crashed on my bed and could not move for two days. I managed to phone Rheumatologist and there was two months wait til I could see him.
Father-in-law wanted to know if I was coming to the family Christmas lunch. I sincerely explained him that I really wanted to come but I could not promise because I was so sick and I had less chance to get better before Christmas. He demanded that I see Dr AD again, even I explained him I was told that I could not be helped by him anymore. Then, he demanded more that I should be persistent and look for treatment instead giving up. So I explained again that I was doing my best and just made an appointment with Rhematologist. Then, he demanded I should not accept to wait for two months and I had to demand to see him earlier. Although I felt there was reasons why I had to wait for two months, such as they are busy and other patients are waiting for their turns. I waited more than four years to get better. Waiting for another two months didn’t seems to be too long. But in his opinion, the reason why I had to wait for two months was because doctors are arrogant and I was stupid not to demand for special treatment from them. WTF? I gave him permission to phone the doctor and get earlier appointment. If he made it, that was great. And if he didn’t, I proved my point that everybody were treated equally.
When he phoned me back, he was angry. He couldn’t get me earlier appointment, but he was attacking me for not seeing Dr AD to get the referral to the rheumatorgist. He kpet going on that people do not change doctors easily and I had to stick with Dr AD no matter what. And I was stupid making appointment with his colleage and she doesn’t know anything.
I wanted to explain to him that Dr AD told me very clearly that he could not help me, that his colleage is also GP and she can read my file, that I knew Dr AD would not want to consider my problem as anything but depression, that his treatment for four years only made my condition worse and still did not do any homework to help me. And I am sure Dr AD would not have given me referral to Rheumatorogist. Between this phone call and Christmas, he kept asking me to come to family Christmas lunch. And I kept apologising that I was just too ill to go out for anything. If I could, I would be there. He refused to see that I had been very sick for last four years, and it was the only reason I could not be at family events.
I borrowed my own car from my husband on his day off and drove to the appointment to the Rheumatologist. He was even more expensive than psychiatorist. Even my appointment was the first in the morning, I waited for a while to finally see him. He read the referral letter and test result from blood tests. He squeezed my arms and hands, and made me mimic postures he demonstrated. Then he told me I did not have MS, but CFS. He prescribed a very small amount of Endep, which is a different type of anti-depressant to improve fatigue and sleep. And gave me instruction of GET. He also told me not to take paracetamol for my pain. All these were done within 15 minutes.
After this appointment, my condition got to very severe stage and I could not start the GET he instructed. Even I was willing to do anything to get better while I was in the Rhematologist’s office. I know now that GET does more harm to ME/CFS sufferer than good, but I didn’t know about it that time. In a way, I was lucky that I did not put myself into another GET session to get more sick. Endep didn’t help me with sleep or fatigue, but it only aggregated fatigue and other neurological symptoms. So I stopped taking them after 10 days. I could not go to his next appointment. I never had another appointment with him. And I did not go back to Dr AD’s Medical Centre.
While ME/CFS and Domestic Violence were getting worse, my concerned friend took me to her GP, Dr GD. He accepted ME/CFS as real illness and was aware that it is a difficult illness to treat. He could not give any advise other than rest. He also prescribed Endep and I tried it again with my respect to him, but effect was the same and I had to stop it after 10 days. He requested confirmation of my ME/CFS diagnosis to the Rheumatologist but he never got the letter back from him.
While I was in women’s shelter, I visited Dr GD once because I needed doctors report for a government agent. While I was waiting, I got sick and had sensation that I was going to faint. Even it is the place for sick people to see doctors, they do not have sofa or couch but tiny, hard, up-right chairs in waiting area. People were looking at me while I was anxiously wondering what to do. I asked at the reception if there was any place I could lie down while I was waiting for doctor. She gave me very odd and surprised look. After a while, I was taken to treatment room and waited for Dr GD for another 40 minutes. I was surprised to see they charged me for the room. I didn’t say anything about it, but I felt I really shouldn’t be charged for it even it was bulk billed. If they had more comfortable chair for very sick people to wait, I didn’t need the room. And nobody attended me while I was lying on the stretcher.
I had to move away from familier area to find accommodation for me and my two dogs. I am living in current area since December 2006, but I still haven’t found new GP yet. I have been very sick to go out most of the time. Only thing I could do was occasional and carefully planned grocery shopping. I could only handle one thing at a time. And there is still tones of things I need to do to finally settle into this area. The only reason why I need to find new GP is because I need treating doctor’s report every two years to keep receiving Disability Support Pension (DSP). I am ashamed of being on pension, but there is no other way for me to survive with this illness. I only started receiving DSP last year, so I still have another 14 months until my first review. It is just a procedure because diagnosis of ME/CFS does not automatically entitle me to DSP. I will still have to attend Job Capacity Assessment Interview and prove to authority that I have genuine disability.
I am very scared of finding new GP. What chance do I have to find a GP who recognise ME/CFS as a real illness and accept to treat me? How many more GP would look at me with disgust in their face and think I was a hypochondriac? Would they get offended if I bring some information about ME/CFS and tell them this is what I am suffering from? What would they do if I told them I was diagnosed with ME/CFS but nobody would supply information or my file to confirm it? My fear is that they are the same as my past 10 or 15 doctors. What will happen to my DSP if no GP is willng to treat me as ME/CFS patient?
My approach to treating ME/CFS is “do no harm”. I have no doctor, no medication and no support. I only take paracetamol when my pain is greater than 5/10. I buy vitamin and mineral supplements from supermarket simply because I can not afford fancy and expensive health products. I educate myself with ME/CFS and I believe I have much more true knowledge than average GP. I have some online friends who also live with ME/CFS and understand what I am going through. I write to blog to deal with my emotional and mental strugge of my life. Most of the time, these are good enough because nobdy will harm my health anymore.
I can not really go out to see GP now. And even I could, the trip to the medical centre will give me post exertional malais and I will suffer badly afterwards. There is no way I could afford specialist just to hear that I have nothing wrong with me. And I have nobody to take me to specialists office anyway.
And it is really bothering me and making me anxious that I still have to find a GP who would treat ME/CFS.
Note: Although I named medicines I took, there was no intention of discrediting these medicines. The reason why they did not work for me was simply becasue I was misdiagnosed with illness that require these medication to control the symptoms. If you are on these medicines and they are working for you, please stay on them.