"Minority reports"-badly needed for "minority patients"

After I have completed this chapter of my life, I hope to be able to move on to a post-doctorate position. My intended area of research? A focus on minority patients: e.g. The 20 year old with Parkinsons Disease, the man with breast cancer, or the intelligent, beautiful, rich girl with a perfect family suffering depression., the young career woman with fibromyalgia.

All too often, “support”, if there are any, are not personalised enough. As always, people always tend to generalise, although this is no fault of theirs. The problem is; most care managers, support group leaders, nurses and doctors and whoever that are supposed to help patients are only able to effectively help the majority, or in some instances the vocal groups. Lack of knowledge, or subconsciously turning a blind eye is often the case. Sometimes, the needs of people who are not within the “usual” or “most people with disease X” are not acknowledged, let alone validated or supported.

When will people do something about this? When there is a pile of evidence (ie, environmentally destructive pile of papers or research), piled so high that it would be impossible or politically disastrous to ignore.

Research in such “unscientific” topics will not gain you much recognition (be prepared to be ridiculed!) in the medical or scientific community. When you announce the findings of your study, cynics will dismiss the results of your work as something that could be conceived without involving so much time and resources (if only you use your common sense or have more empathy for the patients), or that there is something which is lacking in terms of “scientific rigor”.

There is truth is these criticism, esp about the empathy and common sense part. What is senseless is most people (including these “experts”) will not use their common sense until some “research” or papers point to some everyday facts.

My conclusions: Trees have to be sacrificed in order for “minority patients” to see common sense applied to them.

Note: Many people are incredibly understanding and supportive of "minority" patients. Unfortunately, these people sometimes have to justify their supports to the majority.

Blame games: another game that we as patients must know how to play

I am in the thick of data analysis, which means that my energy level is ok, and I am not so "foggy". Yeah, there is still pains, the limited energy, the occasional cramps that wake me up at night, but I take these all in my stride. After all, I need to finish my thesis in time. If I do not finish it during this extension, no amount of pleading by my kind supervisor on behalf of me will help. From where I am, fibromyalgia and chronic fatigue syndrome is nothing more that a general term given to all the illnesses, most probably psychogenic that has yet to find a term.

Of course, it doesn’t help that I have a history of other chronic pain from other conditions. I am sure other FMS of CFS patients probably identify with this. Being old timers of pain, we don’t get much sympathy or empathy when we “conjure up” another illness.

Perhaps it helps; I am sure to a certain extent it does, to know that patients of other chronic illnesses are also afflicted with this self-blame. In certain cultures, the mothers of ill children take the bulk of the blame. I watched with empathy, and almost wanted to join into the chorus of “Me too! I know what it is like!” when someone talked about the self-blame, the “guilty feeling” and “scolding” received from others.

Although these people have a different illness than mine, a hardened, seasoned researcher like me had tears welling up in my eyes. I could relate to their stories of helplessness and self-blame when a young person, in this case their child is ill.

For those where the illness developed while the child was still young, the mother practically takes all the “blame”. It must be something that she has done. She must have not taken care of herself during pregnancy, or taken certain food while pregnant or breast-feeding, because she chose to breast feed or because she chose certain milk formula that was unsuitable and yet was careless enough not to notice it or maybe it is her genes and bad karma. In other words, she is a bad, terrible mother and caused her child to suffer as a result. She failed, big time as a mother.

If the child developed an illness when they were older, let’s say in the teens, the blame is shared. The older the child, the more blame the child shares. For people like me, who developed illnesses while away from home, we take almost entirely all the blame. It does not mean our mothers are blameless; they could have contributed to this through bad karma, failing to take care of us while we were young and resulted in poor health. And in some cases, failing to keep a tight rein of us, allowing us premature independence.

What kind of good does these blaming games brings? Nothing. Parents have divorced. Very frequently, relationship with in-laws have turned sour, people have been driven to depression and contemplation of suicide. Yet, I do understand why. (Anyway, I am supposed to, I am the "expert", isn’t it?)

I am literally an “expert” in my on situation, becoming an "expert" through my personal experience, and becoming an "expert" as my area of research happens to be so closely related. In case people think that this is “lucky”, no it isn’t. I always have to exert great care not to project my personal opinion and experience to what my data actually shows.

Being young and sick makes us freaks in a society where illnesses or incapacity are associated with old age or a stroke of extreme bad luck like a motor vehicle or other sorts of accidents. It is incredibly difficult to accept a young carefree person should be imprisoned in their own bodies. The physical limitations we have to face came too soon, and forced people around us to consider their own vulnerability. It is not reassuring to say that people would get these without any reasons. People will subconsciously wonder “ will I be the next”, or “could it happen to someone near me?”.

Sometimes, it is just that they want to shift the blame to others, and free themselves of any guilt. That is how we encounter cases like my mother-in-law who thinks that her son is anaemic because of poor diet, and insisted that he was not like that when he lived at home, ie indirectly shifting the blame to me, as I don’t cook much! (NOt as much as she does, I have FMS, remember?)

It was quite dramatic, even though I told her that alpha-thalassemia is hereditary. It is funny how she insisted that she is not anaemic (when her sisters all are!) and there must be other causes, other than the genes.(Hmmm, was he adopted? I did not dare to ask.) It is funny how she would argue about these with me, despite my medical background. If I were a layman, or uneducated and did not know much about the condition, would I have taken all the blame? I would probably have. Probably would have to live with the name of a “terrible wife” for the rest of my life, probably would think that it is because I don’t cook all the things that she instructed me to cook, or simply because my FMS and arthritis is making him sick as well.

Back to the group of mothers. At the end of the discussion, they were so relieved. And they were not the only group I came across to have these self blame problems. The more poorly educated and less informed they (their family and friends) are about the child’s condition, the more the blame game affects them, and their children. Children had told me that they hide their illness (and cried “ quietly at night, when nobody knows”) to avoid being scolded for getting sick.

While it is not possible to educate every man, woman, or child on the street on the spectrum of illnesses that people suffer from, it is important to get across basic points like the causes of illnesses. In case where scientist and doctors don't know the cause, I hope that they would accept their ignorance (and stop trying to act smart. Just because you can't find an organic cause, it doesn't mean that it must be psychogenic!). Myths should be dispelled, so that we, as patients, parents or caregivers could focus on the road of healing, and not wasting our limited and precious energy on these blame games.

Trying to explain our financial situation to others...

I am so so so depressed. My brother is facing a problem with his application for financial assistance for his studies, and the university is not convinced about how poor he is.

Since I was unable to work, we have had no income. The doctor’s fees and my student loans have eaten up whatever money I managed to put aside when I was working. When I went home last year, I saw so many receipts of my mum selling off her jewellery. She did not have much to start with, and I know she had no more when I realised that she was not wearing her wedding ring. I felt than an arrow had pierced through my heart when I saw that.

Now I feel terribly miserable again. My brother now needs a loan for his studies. Some idiots doing the administration work definitely had not been poor before. Otherwise you will not be asking for things like grocery bills. Really desperately poor people get a big portion of their food from markets which are so much cheaper than supermarkets; at least that is the case for where I came from. My mum had been saving and penny pinching and I can see her buy things bit by bit from the corner grocers; no more big shopping trips to the hypermarkets. These shops don’t give your receipts. Even if they do, who would have thought of keeping those bits and pieces of receipts for a dollar or two spent? Yet, students in his uni are asked to produce these, among other things in less than two weeks, if they wanted to be considered for financial assistance.

I really feel so helpless about it. There is a strong temptation to make a lot of noise about how this university which proclaimed so loudly that any deserving student would receive financial assistance, and no one would miss a chance studying there because they were poor, actually harass poor students in this manner. I call it harasssment, because they were contacted within three weeks of their examination and had to produce these documentations before being allowed to sit for their exams. While others are busy preparing for exams or writing their term papers, poor students have to worry about those bits and pieces of papers. Isn’t this a form of discrimination? I really cannot understand why the administrators have this tendency to ask students to do these things a short while before their exams. Can’t this be done much earlier, or a month later? I am sure there is a way, if only they are truly sensitive and care about student’s welfare.

My brother's story about how I was the one bread winner and I had fallen sick was not convincing the university officials. Well qualified, young woman being so ill and not able to bring in an income? And it is not cancer? Nah... not possible.

How I hate my fibromyalgia, my rheumatoid arthritis. If I have not had these, I would be working now, I would have submitted my theses. If I had not enrolled in a PhD, my elderly parents would not have used up all their savings. I really do not know how to stop blaming myself. Although I am in a public library now, I can't stop tears from welling up.

Yet…despite all these, I just have to keep on telling myself to think of a way out, not to get stressed as it worsens my condition. And yes, right after this, I must be mentally and emotionally disciplined enough to go back to my thesis straight away. As an FMS and RA patient, I do not have the luxury to waste energy in crying or feeling sad. The cost of that is just too much—a few more days fatigued in bed. Where the body fails, the spirit keeps going.

Getting God to help in blood letting

I am back from a blood letting. I have “deep veins”, and I stressed the phlebotomist up. She was good though, she found it at first try. However, we needed quite a few bottles and my blood dripped too slowly. Before she got what is needed, the vein collapsed despite her best efforts and repeated pleas to God. She was saying “God, oh please God, please let us have enough, don’t do this to me”. I think God must be happy with me; I always get the phlebotomists praying.

Having no choice, she got to try the other hand. After sometime poking and prodding, and with my help of pointing out the location of a good vein, blood started to flow out. “Oh, thank God. Thank God. God, please, please, keep this going for us, please.”

This time God responded. We got enough to fill up another two bottles, esp the bigger bottle for the ESR.

I do feel like telling doctors to stop taking my autoimmune profile so frequently. It is always negative. I only had one positive for my RA factor so far, and it was a very weird experience. I saw the look of relief on my rheumatologist’s face, before turning to a more concerned and worried look. I suspected the reason for the “relief” he felt was similar to what I felt. At last, there is some evidence that it is not all in my head. Now that I have a new doctor, I think the journey will start all over again.

This time my husband stayed in the waiting area. I walked briskly to the waiting room. He did not offer to come along, and I did not ask him to come. I think he was traumatised by my other blood letting episodes.

"The hide and pretend game": another game we play

In front of me is a pile of transcripts, transcripts of people who had opened their hearts to me. It is an irony, isn’t it? That they, strangers who have only seen us for the first time will open their hearts and talk openly about how they hide their illnesses from family members and friends? Their disease is just one aspect that contributes to their misery. They are also sick of the worries and the naggings to “take care of themselves better”. There is a pressure to conform to what others believe in, even when they know those believes are no more than health myths that did not apply to them.

These patients told me about how they “hid” or “keep it a secret”, of going to doctors on their own, and quietly taking their medicines when they get a relapse without telling anyone. It surprised us, the healthcare “professionals” and it really worried some parents in the group when one patient confessed of hiding the truth since he was about eight or nine years old. The adults never suspected that a child as young as that would do that, but I knew he was not an exception. Anyone who had been sickly as a child knows how “irritating” it can get when parents “fuss” about it.

The social medicine literature is littered with such “anecdotes”, reports that hard core, “evidence-based” clinicians tend to overlook in their focus on the drugs with the best evidence of efficacy and benefits vs risks. If they had known accepted this, they would have somehow tried to intervene.

A child, or even a adult hiding their life threatening illness from loved ones spells loneliness and poor social support at best, and could be the weakest link is terms of getting the life saving medical care at times.

Here am I, joining the “hiding” game. I am changing my blog address for the third time, as I suspect my husband my have found out about it.

Why blog if you are so worried that others may read it? Well, the answer is I don’t care if you read it. I don’t care if the whole world read it. All the better as more people will understand patients like me more.

But I don’t want my family members and close friends know about it, not after how hard I try to appear "healthy", and gather every once of energy I have despite being very tired when I meet friends. That is the sort of “privacy” I value. Like the patients I met, I don’t care if you know about how I feel, how easily tired I am, how much pain I am in or how miserable this illness causes me at times. But I don’t want my family and friends to know about it. They will feel terrible, and I don’t know what to do with them. I can counsel the family of my patients professionally and effectively, but I can’t offer any counsel to my own family!

I have a research participant who is a medical social worker. She is playing the “hiding” game, and she is one of those people who hide her illness zealously from her family. She shocked us all. Not she, my co-researchers all thought (I was not surprised at all), she is just too good a counsellor to the families and the patients. The trouble is the better we understand how badly someone’s illness can affect their family members, the more we try to hide about our illness from them.

The doctor and the blood tests

I am back from the doctor’s office. The “ordeal” was over really fast. There was a long waiting list, and I was happy to help the doctor get hurried over. The last thing I want to do is having too much of these time taking stuff when the appointment list is behind time, and the doctor is trying to see everyone. I don’t think they make the best decisions under such circumstances.

The doctor is a rather young chap, in his thirties. He ordered a series of blood tests and etc for me early next week, and will see me in two weeks’ time and discuss my management plans. I am relieved that it can be done rather quickly.

I can see my husband was not exactly happy with the arrangements. I think he didn’t like the idea of more blood tests on me, and having to wait another 2 week before something could be done for me.

My veins are incredibly small and difficult to trace. When I donated blood a few years ago, (when I was well), the nurse told me not to come back again. After people around me have done with their pint, and the next person finishing another pint, my bag was less than three quarters full of blood. They had no choice but to stop the process. My quarter full bag could not be used for transfusion. I hope that it is used for other stuff and not wasted.

I think my husband was really traumatised during my last blood test. Three phlebotomists (from the junior, to senior and finally the manager) took more than half an hour (and a silent prayer) to finally get some blood out of me. The junior phlebotomist, one of the fastest and confident one I have ever saw, was reduced to tears. I also broke down then. I was not sure how I felt that time. Was I sorry to reduce a confident young man (the phlebotomist) to tears and traumatised other kids waiting for their turn? Or was I crying out of self pity. My veins at the elbows and the back of my hands were all poked. I walked out with plasters and bruises.

In the course of my own dissertation research, parents often tell me how they would hide and cry when they see their children “getting poked”. It is a “humbling”, " experience for them. For all their successes, power or possessions in life, they were entirely helpless when their kids pleaded to be spared of needles. I wondered if my husband felt and did the same.

The most challenging thing: seeing a NEW doctor.

It is an irony, isn’t it? So far I find moving to a new country, broke, sick and jobless at the same time is nothing daunting. Maybe because my husband is with me. Maybe because I am used to getting up rooted. Maybe because there is a false sense of security; I have ONE friend from my high school living one hour away. Everyone around me was really worried for me, but I have been coping very well so far, until today.

In half an hour’s time, I will go and see a doctor. What is so scary, you may ask. Are you getting an injection or one of those nasty tests. No. None of these. I am just terrified about how petrified the poor chap would be when I put down my thick pile of “medical history” in front of him. I dread having to go through my history. I know how doctors work and think more than anyone else. I can catch it, those small twitches at the eyebrow and the lips.

I am not sure if I hope that this is a young chap or an older doctor. If it is a young guy or one with an interest of research, I will have to be prepared to recount all the history, the details, the co-morbidities, the risk factors etc. If it is an old chap, I might be dismissed as the all too familiar psychosomatic case before having to go through all these. Is it better to relive the pain (some of histories I have selectively chosen to forget) or be dismissed. I really don’t know.

I know I have to fight for myself to get heard, to get the treatment I need. I need to even educate them if necessary. Even if I know more than them about my own condition, I still need them to do the papers and prescriptions, and refer me to the appropriate people to get the therapy. Massage therapy, which works really well for me is just too expensive for me to afford.

For the last few weeks, I have been getting my shoulders, hips, thighs and hands massaged every night. If you think that I am a lucky gal to enjoy all these, you are wrong. These massages are extremely painful. No, I am not sado-masochistic. I endure the pain to get some sleep. That is the way to prevent me waking up at night with muscle spasms and pain, and waking my poor husband up. That poor guy have been doing this for me, even after a long and tiring day. The sad thing is despite all these, he still cannot provide a relief as effective as that from a professional. I still have to visit a professional about once a month, and pay sum equivalent to our one week’s worth of groceries and food bill or a half an hour session. I managed to find a kind woman as a therapist, and she does not mind tackling the most knotted areas in the half an hour, provided I co-operate and not yell and scare away other clients. It is hard work for her, applying the deep pressures. I can see her sweating during each session.

My handphone alarm just beeped. Time to see the doctor. Time to persuade him that the unconventional medicine works fine for me. (I hope that he does not see me as a traitor to conventional medicine! Hmmm. I will hide my real profession and training from him, unless he question me directly) Time to get a referral to a therapist. Hopefully I can get something for less than our one week’s food and grocery bill. Wish me luck.

The search for the elixir of youth.

I grabbed the mirror the instance I reached home. I shouldn’t have lingered around that cosmetic counter, checking out those eye-creams and wondered why women spend so much of $$ on these little pots of stuff.

I am paying dearly for that somewhat too self-assured view. The sales assistant from a well-reputed cosmetic company (ie, well-trained people from my experience) commented on my fine lines and recommending something for “people of my age”. She overestimated my age for at least five years.

The joke is I am obsessed with my looks now. My husband laughs at how I check my face every morning, and every night before I sleep. Before this, I never bothered about moisturisers, make-up etc etc. The girl with the best skin in class did not have to bother with all these, thanks to the good genes from grandma.

I was also always thought to be younger than my actual age. When I was in university, I still looked like I was in my high school. My mum and aunts all look at least a decade younger than their actual age. Now, I defy the usual expectations or conventions again. I am the only woman in my family to look older than her age. Even my grandma’s aristocratic good genes failed to shield me.

Is it the long hours of concentration in my studies? Is it the stress of juggling family, a challenging work, my thesis and also my rheumatoid arthritis? I don’t really know. Or did fibromyalgia which had just recently joined the list did this to me? I don’t know.

I knew somewhere around a couple of years ago; I started to look older than my age. I just refused to acknowledge the fact. I recognised the “surprised look” on people’s faces were no longer that of admiration, the “oh, what-is-the-secret?” which was usually followed by compliments. Somewhere along the line, this turned to surprised look, a pause and then some scrambling to find a you-don’t-look-your-age “compliment”. Although I hate to admit it, I know that it is not a compliment. It is a fact. A hard fact. My good friends from high school struggled so much to hide it.

May be it is all the crying, all the broken sleep. Or may be the constant struggle to keep worries or negative thoughts at bay. I don’t know which is the real culprit. But all these factors added together had managed to cause a physical dent on me. While I was busy keeping my spirits up, something had been quietly taken away from me. That is what long term pain is to me. It chew off a part of you, slowly and surely.

Now, from somewhere, somehow, I got to find another antidote to cope with this. What would the antidote be? A pot of eye-cream? I hope not.

Another day, another task to fight these things that just happened to me.

Racing against time-first draft

I have 72 days more to go to my targeted submission. That sounds like many days and a lot of time, but it isn’t.

Firstly, there is something called waiting time. You got to wait while your supervisors find time to read your draft and give you the feedback. There is no use rushing them. If they rush through your paper, they often end up missing lots of impt issues that need to be clarified.

Then there is another thing called down time. For someone with rheumatoid arthritis and fibromyalgia/chronic myofascial pain, our ability to function well is as predictable as the British weather. Once down, it could really take some time to pick yourself up again. For me I just keep on repeating this fact “Research shows that RA patients with high score in Learned Helplessness Scale (what a name!) have poorer quality of life.” I tell myself before I sleep, when I am lying on bed, when I am miserable. I know that I have to remind myself not to go down that path.

And lastly, this is the most pleasurable past-time: wasting time. Activities include blogging and checking whether I had earned a few cents from someone clicking the ads on this page. I could do this so many times a day that I know I am on the borderline of neurosis. I know well that I had told no one of this blog, so there can’t be visitors apart from the random blog jumper.

Changing the topic of this blog?

This was supposed to be a blog about a PhD journey. Somehow it is not colonized with pain related musings. I guess it is important to note that one’s health is very important in successfully completing this demanding project called “PhD”- Permanent Head Damage. If you suffer from “Permanent Health Damage”, it will be doubly difficult.

How do others cope with fibromyalgia?

How do other patients with these long term and “invisible” pain cope? How does it feel like when most rheumatologists- the experts that we see, can’t be more tender with us because they cannot spot those tender spots (pardon the pun) ? And for people in countries which provides “disability benefits”, what kind of experience do they have to go through? In where I was, it took even real courage to “come out” with it (stigma could be even more than being gay or lesbian the rural areas of western societies). Another young, courageous and intelligent young lady I knew told of being ridiculed by her peers-university students in a well-known university. She received hate mails when her story appeared in the papers. Some really sick people actually told her to stop being a wimp and it was all in her heads. Some suspected that she was trying to gain sympathies. FYI, she comes from a country where there is no “benefits” for sick people, she was not asking for any donations and yet people thought that she would benefit from the sympathies.

All she asked for is more support (ie forming a support group) for young patients with chronic pains. Is that too much to ask for? In a world where fifty something women could demand the right to have a drug which the benefit and risks are not even clear and cost tens of thousand because they have a life (shown by colourful clothes and a makeover) and they want to live, is it too much for a young woman like her to hope that there is more awareness and support of the terrible conditions she had? The problem is she had no dramatic photos to show; she looked plump (side-effect of limited movements and the cocktail of drugs) and cheerful.

The pressure of being young, in pain and yet looks fine.

I went for a Tui Na massage yesterday. Thirty minutes of the painful, torturing massage costs as much as what we spend on food for 5 days. That is not a small amount of money, considering how tight we are at the moment.

I felt tortured; both by the deep pressure applied to the painful knots, and the thought of how much I spend on it. Yet, I had somehow convinced myself that it is money well spent. This would prevent this episode of fibro from going full steam.

This is how I have been coping lately. Recognising the early signs and symptoms, and trying out different medications and ways to lessen the intensity and duration of an episode. I do what I think is best and working for me, independent of “medical advice” etc. Other than two good common sense advices which are backed by reasonable evidence – sleep well, exercise more; I am on my own.

The amount of self-reliant in managing this horrible- physically, mentally and psychologically destructive disease is showing in the piles of books in my room. There is a big pile of books and articles related to my area of PhD research near my table and bed. Beside my bed, there is another equally huge pile of materials on anything under the sun that might explain my symptoms, or promise some relief.

I sometimes wonder whether my education and training is a curse or a liberator of my situation. Here am I, an “expert” in my own right who is often consulted on the interpretation of medical related literature by my peers, struggling to go through the chunk of largely speculative information about my situation. Most of these “medical information” is coloured by the opinion of medical “experts”, or constructed and timed to support opportunities of making a quick buck from selling the “cures” or drugs. From what I see, there is even a struggle to define what fibromyalgia, chronic fatigues symptom and chronic myofascial pain is. It is ironic how medical professionals can tell patients what to do and what not to do when they themselves are ignorant of the actual pathology, ie cause and nature of the disease (s).

I struggled for a while about going for Tui Na and Thai traditional massages in my early days (even when it seemed to help for me), because the so called evidence and medical opinions were against it. My peers thought I was doing something ridiculous, as patients have always been advised to stay away from massages when there is a “flare”! I was urged to abandon these crazy ideas and go for good, proper medical care with an expert. I wonder if they realised that they had unknowingly insulted some of the best rheumatologists in town with that remark. If I am not what I am, will I face so much pressure from doing what seemed to feel good? Or would I be even more susceptible to other pressures and try out all those “quack” cures. Who knows, one of those quack cures might offer some real benefit, but I am not trying it out at all because it failed my “medically sensible” test.

[If there are some stupid, glaring mistakes or incoherent sentences in my blog, it is “normal” for me when I am in this state ie not feeling well. I usually double-checked it, but somehow not able to spot those mistakes. If you were me, how would you feel? Once upon a time, I was a freelance writer, contributing medical related articles. My writing these days esp when I am feeling unwell is definitely “shit”.]

Not going to let go.

Spoken to papa yesterday. I can clearly hear the concern from his voice, worrying about my health, worried about the completion of my thesis, worried about my health.

“Complete it, complete it”, I keep on hearing my own voice for the next few hours. I picked up “Never let me go” by Kazuo Ishiguro, which turned out to be a page turner.

I this book, “completion” is a totally new meaning. This book is extremely dark, yet I did recognise certain some similarity in the “release” offered by the “completion” of a long, difficult journey. Nah, I am not suicidal. Just that the arthiritis/ fibromyalgia/ chronic myofasical pain I suffer is draining me off now. I believe that I will pick myself up again. I fall, but I do not expect myself to lie there forever.

Medical treatment have not far failed me. Medical opinions sometimes even humiliated me, all these implications about psychological origins etc. Yet, those so called alternative and complimentary medicines are so freqeuntly made up of untrained people out to make a quick buck. Away from home, I am still desperately finding a good massage therapist to bring me relief. Expensive massage by people who not really knowing what they are doing is not an alternative for me.

Too negative? Check out the silver lining!

Although this blog serves as my outlet of negative thoughts, I think it has been a little too much. "The sole purpose of my life is to serve as a warning to others?"-- That title is really negative, but I like it. It reflects me. It reflects the hardcore optimist in me. Forever finding, looking and searching (and if all that fails, will INSIST) for something to be gained out of pain, sorrow, darkness and whatever other terms you call it.

I begin to like this title more and more. Even if my life is all about pain and failure, let it sends out a message, a light, in some way to help or guide others. This sounds so preachy preachy, but wait a minute, I do not have a religion! (Not that it matters) In short. Something good must come out of it! I insist!

Hmm.. may be all those fish oil is working.

The last episode of Me?

Unreliable again. That is what I felt. The ups and downs of my condition makes me feel like my words are not worth even 1 cent. Again, I will submit my work LATE.

On the plus side, I congratulated myself for getting out of the latest episode within 10 days (my newest target). On the downside, my progress is once again disrupted. After these days of rest, I have to struggle to pick up on where I was left, and as usual laugh (and cry) at all the mistakes in whatever work I attempted to do when I was unwell.

Is this the concluding episode of me?

“….to everyone’s surprise, the most promising girl in class was not able to complete her PhD. No one really knew the reason, although there were rumours of her physical and mental health. Cynics pointed out she had always spent less time than her classmates studying and infamous for dozing off in class. Perhaps it is this type of laid back attitude (laziness) which made her unable to make the cut for the really rigorous work required for PhD studies. No one knows what she is doing now, and rumours claim that she can’t hold down any job. Her supporters pointed out that she has always been the determined type of person. Her past victories including taking exams despite not able to sit down after a back injury, and supported herself and her family through a host of part-time jobs and scholarships. May be this time she just can’t cope anymore.”

That feeling of shame

That feeling of shame…..

What should I call it? Shame? I cannot find another word.

Are you familiar with the feeling that you wish you were a tortoise and you can just duck your head back into your shell when you see your thesis supervisor? Yeah.. it is that feeling. Feeling of letting them down again by your lack of progress? Many people that I know with avoid their thesis committee or supervisor at all cost, because of this. Whatever you reasons (for me it is usually my arthirtis, again), you will probabaly hate to retell it again and again. But this is not what we are supposed to be doing!

A friend of mine who is an asst professor told me that this is the type of students that cause the supervisors the most agony and they will really curse you! Ouch. Ouch. Ouch!! I shall try by best not to be one, despite all the stress.

Rheumatoid arthritis affect young people too.

Rheumatoid arthritis affects young people too, do you know that?

Chronic paid affects young, positive people with a great future too, do you know that?

Yes, not only old people are affected or negative depressive wimps. But how many people really “know”, let alone undertand and emphatise with you? Even health care professionals choose to ignore these facts sometimes, and fail to recognise that it is different to get a chronic pain when you are old, and retired and when you get one when you at in the twenties. And it is more difficult when the pain comes and goes at with no apparent trends.

Why is it so difficult for them to know more? Just check on the internet and you see lots of examples. No, not those support groups that are sometimes overdoing the “misery” part. What is mean is if you open your eyes, ears and hearts to what others are saying, you will be able to see.

To find out more about fibromyalgia (FMS) : A brief guide from the Fibro Association of UK
To find out more about arthirtis: www.rheumatology.org.uk- a list of different type of association

Adverts in a PhD blog- what they say about us

There seems to be another advantage of blogging.

You can monetize it. I am copying these little buttons from Google to my page.

Hope it works.Yeah ABDs tend to have their funds at the lowest level, and any extra cents of income generated somewhere would help.    

p/s : I took a good look at the types of advertisements generated. Interesting. They tell a lot about our life as a PhD student.
The types of adverts are (generally)

1. Services offering to write your dissertation/proposal for you… hmmm $17/page.. that is an awful lot of money. I wonder if they are as good as they claim. If they are so good, why writing for others? Should have been in some academic/research/industry position- all of which are in credibly busy.


2. Services to help you write something so that you get into a grad school!! I wonder what they are offering; to bad I cannot click these ads. But I should say if you need help to get in, you should probably check out service no 1) (the 17 bucks/page service)- you are gonna need help to get out.


3. Financial help ..Geez….. PhD students= brokes


4. Some anti-depression help.. PhD students easily depressed?? Why would they tag such a keyword to their product? We need them?


5. Some blogging sites, offering free blogs.

    

breaking the negative impact of rhematoid arthritis

I must stop procrastinating

I know that I must start procrastinating and really immerse myself in my work. However, I spot a terrible trend here, one vicious cycle that repeats itself over and over again.

I now develop and anxiety just at the thought of doing my thesis writing. All the positive vision of me completing me dissertation and become “Dr” gave way to the typical cycle of pain. Yes, pain.

For the past one year, I have succumbed to attacks of fibromyalgia(?) Arthritis(?) that left me weak, aching all over and remain in bed for weeks. Yes- weeks. My last “attack” was before Christmas and I only got better last week. Just as I pick myself up and start “work again”, the symptoms came back after a few days. I spent another few days in bed.  I really hate my health, and sometimes I would like to cry really hard about it, but just told me self to not be a wimp. This illness has not only taken away all my physical energy to write my dissertation, it also took away all the mental and emotional strength. It crumbled me- reduced the young woman who was known as “iron lady” by her classmates because of her strong will to just a pile of shit. Yeah- that is how I feel about myself.  
     
People just do not understand the degree of psychological damage these repeated attacks have done to me. I feel ruined by it.

Luckily I still have not lost my weird sense of optimism and ability to see the silver lining. (Actually, it is my unwillingness to let myself go through so much without feeling that I have gained something from it- that will be too unfair to myself) The silver lining in this case is my ability to fully empathise now with people with mental illness. I was not particularly emphatatic (note- it is not sympathetic) about people who let themselves delve into depressing and painful past, and let the emotional and mental pain last longer that the physical ones. To me, (and to most of the “intelligent, high EQ” people I know), one must will oneself to get out of the rut and soldier on. Stoicism is the order of the day. There was not much space for wimps.

Now that I fully understand the impact on a person’s psychology, let me put this new insight into good use. People like me will be shy to relate this anguish that I feel to anyone, and sad to say- even my beloved other half. Yes, it is that lonely, that sad. I do not expect to be understood. All the man on the street- including my family and friends who are medical professionals -only have this broad “depression” and “mental illness” concept that is widely championed by the mass media in the past couple of years. For them to think that I have “depression” will break their heart.

I know that I have. It is not depression, for I am an otherwise happy and optimistic person.  I have negative reinforcement for a particular course of action for the past 5 years, so much so that I do not dare to work on my papers, and subconsciously delaying a return to work after an attack.

Work hard on thesis( arthritis and fibromyalgia attacks ( widespread pain/ loss of energy( further delay on writing

I am sure even as I am writing this, many people would be suffering to different degrees of this negative reinforcement, and this is not just arthritis. I remember my grandma stopped exercising and brisk walking after a few falls- even when she was still physically able to. Lots of other diseases will also impact on the patient this way.

This understanding that I get must be voiced out, so that people do not need to suffer in silence anymore.  For the sake of advancement of understanding of people who are chronically ill, I must complete my PhD and continue to make contribution to the advancement of this area. Yes, I must soldier on.    

When the research is a new area

My progress is painfully slow today.

I know what had to be done. I know what are the information that is required to support my train of thoughts, but oh dear. There is not much of literature in this area.

As a new, and unestablished researcher, it is often a matter of your thoughts against "theirs", in an areas which are still new, and monopolised by a few "established authority"- frequently people who had pioneered the area. If you are those lucky fellas (0r unlucky ones, depending on how you see it) who are holed up in labs, your only recourse in do repeat the experiement and showed that there is some garbage outthere among the tomes which had been written. However, if you are doing something that cannot be proven hard and fast so easily and is a mixture of good science and logical thinking, the battle is harder.

Sometimes I read with a good laugh how many pieces papers (I refuse to call some "works" or "literature") which had claimed their work as "significant progress", "proven to reliable" or "valid", when the numbers had shown otherwise. That is the problem when there is no golden rule, or evidences are still insufficient to establish one. Some earlier respectable pioneers may come out with something, and there we are, slogging to disprove it. If you are not aiming for a PhD, and not wanting to risk critising all your earlier work (which inevitably you may find some loopholes or knots here and there, unless you are so blind), walking down an unbeaten path is often fraught with difficulties. Your examiners and journal reviewers will not be too happy to follow the new path a green horn like you are talking about. It takes someone brave to note what you are showing, and risk showing a fellow colleague's earlier works need to be retired. Oh ya, there is also a risk that the examiner or peer reviewer, is the very authority which you disagree with.

The hazards of doing a PhD? Figure that out.