18 posts tagged “me/cfs”

I posted "Who Will Stand Up For ME?" at Blue Coffee Mug on 18 October 2007.

For healthy and able people to understand what the fuss is about, I need to do bit of explanation. I will do my best, but it may not enough for you. I can only try...

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All over the world, people living with ME/CFS are also living with poverty, prejudice, misunderstandings and all kind of hardship that ill person should not have. 25% of sufferers are categorised as "severer". They are house bound and bed ridden with sever symptoms, such as severe pain, organ problems, respiratory problems, seizures, paralysis, muscle weakness and name a few.

When the British NICE (National Institute for Health and Clinical Excellence) announced their intention of producing ME/CFS guidelines, we felt hope because government finally took us seriously. But we felt betrayed when the end results came out. Many of us were furious because not only it is misleading the nature of illness, but also it is recommending harmful GET (Graded Exercise Treatment), CBT (Cognitive Behaviour Therapy) as a legitimate treatment.

GET (Graded Exercise Treatment) - People who is legitimately suffering from ME/CFS cannot tolerate exercise. One of the reasons why severity of the illness progressed from mild/moderate to severe is the GET. It only cause further deterioration to health who suffer from legitimate ME/CFS. The damage caused by the exercise is often irreversible. Some could die as a result. Some of the research for exercise and ME/CFS have wrongly chosen samples, not ME/CFS sufferer but depression patients or just tired people. (Because they only focus on fatigue. And not using the right sample, the result was "exercise help ME/CFS".) There was a research being undertaken by Australian group who found abnormal chemical in ME/CFS sufferers blood who participated in exercise research. However, they have not proceeded with the research further because of luck of funding. They are still waiting for money. While they are waiting for money, little government funds for ME/CFS research are mainly used for psychological. (Please! Get real! There are enough research done to prove that ME/CFS is physical not psychological...) In another exercise research, about half ME/CFS patients could not complete the exercise due to severer ill effect, and the research ignored the drop out samples.

CBT (Cognitive Behaviour Therapy) - In other words, positive thinking. ME/CFS is a neurological disorder which end up with immune dysfunction, failure of organic function, endocrine dysfunction and more that affects every system in body that necessary for us to function and be healthy. How much positive do we need to beat such psychical illness? No matter how seriously the patient participated in the therapy, it is impossible to cure the illness. And it ended up blaming patients for not being positive enough, or patients feel guilty for failing despite the efforts they put in.

The other fact concerns in UK is that government uses ME/CFS as a dumping ground for "wastebasket" cases. Doctors just damp the difficult patients in this category where they are actually suffering from MS or rare form of cancer. Medical practitioners really need to proceed with further expensive and/or specialised tests to identify if it is a legitimate ME/CFS or other serious illness. I feel that scepticism forces ME/CFS patients to be diagnosed as mental illness in Australia. This only forces condition patients of serious physical illness to progress further and further.

One Click ME Appeal is going to legally challenge the government's wrong doing. I am hoping this will change the international trend of neglect, abuse and human rights violation towards people who are seriously ill with ME/CFS. Before they can actually go ahead with this challenge, they need to have £20,000 by 5 November 2007. (As at 16.57 pm UK local time, Monday 22 October 2007, the Fighting Fund total is now £6,204.) I'm hoping to reach to someone who is well off to contribute some fund towards could-be-history challenge.   

This is not only the problem for British ME/CFS sufferers, but also for international ME/CFS sufferers and their carers. If we accept the British NICE guideline for ME/CFS, which deliberately ignored and manipulated facts and legitimate medical research for political reasons, about 250,000 ME/CFS sufferers in Briton will only cause more damage to their health (possibly irreversible) and some will die from the treatment suggested.

Who can guarantee that other country will not import the NICE guideline which is convenient for government and insurance company and not care about ME/CFS sufferers?

Who will be interested in researching and fighting to find the cause of the illness, nature of the illness, efficient management and cure for ME/CFS if the government declares the manipulative guideline that only offer harmful exercise and positive thinking as a legitimate treatment?

Following is the post at my other blog.

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ME/CFS often classified as “wastebasket illness“. We all familiar with cold faces of doctors, nurses, community support groups, social security officers, families, friends, teachers and any human beings who come across to our lives. We cried with frustration and desperation in silence. We are begging for people to see the truth of suffering, struggle and loss of our active lives.

You would say, “But all chronically ill people are doing tough. And there are many illnesses don’t have cure, either.” I agree.

But please listen to ME.

Have they been denied the credibility of their illness? “You have something called cancer, but it is really all in your mind. All you need is a positive thinking and these tumours will disappear no time.” How do you feel if this is all you can hear from your doctor?

Have they been forced to medication or treatment that they are more than certain that will make condition worse? “You are suffering from diabetes. The symptoms you are experiencing are actually your imagination. Eat more sugar and you will be fine.” Would you go ahead and eat more sugar?

I also have asthma. Although there is no cure for asthma, there are proven and effective medication and management in place. Comparing to ME/CFS, dealing with asthma is negligible for me. (I am not ignoring the facts that asthma could kill. As long as I know what it is and take medications, I am okay.)

In England, they spend tax payers’ money to come up with the guideline of treating ME/CFS that only cause more harm and damage. During the process, government authorities deliberately ignored critical facts about ME/CFS. Naturally, all ME/CFS patients and their family, friends and carer are horrified. Their government came up with a guideline of TORTURE. I could imagine the horror of ME/CFS patient who has no choice but undertake harmful treatment knowing that his/her health will only deteriorate further as a result. This is an organised human rights violation.

I’m Australian, but I fear that our government might import the ME/CFS guideline of TORTURE, because it may convenient for them and will fulfil some political purpose. It’s really a shame because South Australian government introduced internationally acclaimed ME/CFS Guide for GPs, but other states are still ignoring this excellent and accurate guide. If the federal government has to pick a guideline, I’m worried that they would choose NICE (torture) over the acclaimed Guide for GPs.

What can we do?

That is another frustration, isn’t it? Despite of motivation, eagerness, or heart breaking agony to be heard, nobody really hear us. No human rights advocate group would come for rescue as they are too busy with other unfortunate human beings. We are too weak to stand up for ourselves and march on the street, or deliver flyers or make phone calls.

I read One Click ME Appeal at Simon Wessely I Know it All today. To be honest, I haven’t read all ‘One Click Appeal’ page yet. (I’m having trouble reading at the moment. And if I wait until I read everything, it may be too late…) I hope this may be the answer. Any of us can support the legal appeal against the torture guide (NICE guidelines). It doesn’t matter if you are not English citizen. Please show your support by clicking. This may be your chance as a ME/CFS sufferer, as a family and a carer of ME/CFS sufferer, as a friend of ME/CFS sufferer, or as a person who believes in human rights to do something.

If you are British citizen or resident, you can also support e-petition “ME is real“, which I noticed at ChronicallyME.

Recently, I came across to this blog, “Compulsory Pressing of Domestic Violence Charges?” as a result of my Tug Surfer. At first, it seemed innocent post just explaining author’s opinion about the poll in the local news paper: If a person calls for a cop for Domestic Violence dispute and doesn’t press charges, should they get fined? And 60 some percent voted for yes.

Something in this whole situation disturbed me. I couldn’t point out what for a while. And I couldn’t stop thinking about this post and I now know the reason why. And I feel obliged to post my opinion about it before someone else decides yes or no without thinking.

I must emphasise that I am not having a go at the author. (If someone challenges me against my opinion, I cannot respond to the challenge. I’m sorry, but I am just too ill to argue and make my point across.) Everybody is entitled to express their opinion and I respect them when they are based on reasonable explanation.  The author’s concern was that public funds and police efforts are being wasted by attending the calls for Domestic Violence disputes repeatedly which the victims are not willing to press charges. And I can clearly see the frustration.

However, please think about the depth and severity of Domestic Violence. If we take consideration of statistics of Domestic Violence, these victims could easily be your daughter, sister, mother, grandmother, granddaughter, friend, or yourself. And please remember, the victim could also be a male.

This maybe just an innocent poll, but it may influence public opinion. Please think, imagine and picture what is actually happening behind the closed doors.

These victims probably tried to get help before. But chances are:

·         They were told and encouraged by their family, religious mentors and friends to stay in the relationship and try harder to make it work.

·         They were ridiculed to be over reacting to “relationship gone wrong”.

·         They were told not to be a quitter for her children’s sake.

These calls for police for help are not an attention seeking game. No matter how annoying it may be, the significance of the incidence is equivalent to witnessing someone drowning in the water or someone trapped in a burning house. We cannot just disregard the significance of the incident and solve the problem by penalising the victim’s cry for help.

These victims are ashamed of being in the situation. They are very scared. They are isolated and have nobody to turn to. This is the most important time to give them support, rather than punish them.

If some action needs to be taken for the police calls due to Domestic Violence, I’d rather propose this than fining the victim.

Take the victim (and her children and pets) to safe house for her safety. And then educate her with Domestic Violence. Once the victim is safe and educated, the victim would feel more comfortable pressing charges. (These shelters also provide great support of the process.) If the victim still refuse to press charges at this stage, it is reasonable to fine the victim. Even then, there is more chance that the victim will leave the Domestic Violence before it is too late. The victim may pass on the knowledge to friends and family with confidence. This would increase public awareness of the truth about Domestic Violence and hopefully it would help reduce number of future victims, therefore, calls to police.

It will cost government to educate the victim, but (in my opinion) the cost is less expensive than sending one soldier to the war. It is about saving lives, reducing number of hospital visits due to Domestic Violence and about stop vicious cycle of children becoming another Domestic Violence victims and/or predators.

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From my personal experience, I feel there are similarity in ME/CFS and Domestic Violence. They both ignored by public that they are real and serious problem. And they both blames sufferers for being in that situation.  

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28 June 2007

I add this link to the following post as I thought it was quite relevant to what I was trying to say.

True Story: Out disturbing brush with domestic violence by the observant woman

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30 June 2007

What would you have done?

I have been trying to adjust my mind to live with ME/CFS. Comparing to the last year, I am less confused and angry about everything. Yet, I cannot feel that being chronically and severely ill is a blessing as some of the fellow bloggers mentioned in their blogs. Obviously, I need much more time to feel that way.

This is about how I am feeling these days. They may change in couple of months or in couple of years. But this is where I am at this very moment. And as always, I am still work in progress.

DISABILITY

I am just getting used to the fact that I am Invisibly Disabled. The title, “disability’ used to belong to someone else who uses wheelchair or someone who lost their sight or sound. I used to get nervous around disabled people because I just didn’t know if they needed help and also feared I might offend them if I offer help. I didn’t know that there is Disability Etiquettes. These days, I look at people in supermarket and wonder if he/she is invisibly disabled like me.

I was thinking about getting a wheelchair for myself, but at the same time, I feel it will not help me much. First of all, I cannot go out much. Second, I believe people wouldn’t like it when they see me getting out from a car with my own legs and then pulling out wheelchair by myself. I would be very offended if someone approaches me and ask, “Excuse me, but what exactly is your diagnosis?” If my opinion, it is my own business if they are not prepared to support me. And last, doing a grocery shopping on wheelchair would be harder than leaning on shopping trolley. I would not be able to push the trolley on wheelchair. And I would not be able to reach stuff on shelves from wheelchair. So, I just walk very slowly and keep my head down (to avoid dizzy spell and extra stimuli from people and advertising signs) as if I’m 100 years old.

I didn’t wonder about what my disability is. I don’t feel weird about I am disabled anymore. I am disabled because I just cannot do basic and simple things that healthy people would do without thinking. If and when I could do these things, it is still a huge task and challenge for me.

“Invisible” is the hardest part I must deal with in public. Because when people cannot see it, they don’t believe it. So that people rather give me harsh attitude and/or the look than offer support and compassion. I don’t wish people to help me as if I am a 4 year old child, but I DO wish they understand what I am going through. I am also worried that someone might complain to Centrelink that I am faking my illness to take advantage of the system. (I’m sure that Australian people can recall some current affair programs that accusing a Disability Support Pensioner that they are having a good life. Well, I know majority of them were welfare fraud, but it sent public message that all Disability Support Pensioners are cheaters.) I AM very grateful that government and fellow Australians are giving me the pension so that I can keep living. But please do not think I am having a luxury life as pension is only for survival. You cannot get anywhere with pension income and I prefer much much more to be healthy and earning my own money and working hard towards my goals.

People give me the look at supermarket aisles and I know they are wondering if I am dangerous or not. I walk very slow, leaning on the trolley rather than pushing them. I spend way too much time determining which brand gives me better value or which brand would not cause trouble to my body. Sometimes making decision is not easy and I spend way too much time choosing one item. I drop shopping list too often, and struggle to pick it up with pains and weakened muscles. Sometimes I need to keep reading out the shopping list for myself because my brain refuses to match the item I’ve written down and actual item. But I am not crazy. While I shop, joint pains get worse and my muscles lose their strength. And my mental RAM is about to crash. Sometimes, I have to leave the supermarket before I get everything I need because I must make sure that I still have enough strength and mental RAM to drive back home safely and put perishable items in fridge.  Not to mention that this simple task will give me post exertional malaise and I would be suffering from extreme fatigue and pains for a while.

I cannot go out to do grocery shopping as I wish. I must rest before hand to save up enough energy to make the trip. Usually, I wait for 10 days, two weeks and sometimes more than three weeks. I need to choose less busy time to go out. Occasionally, I get a spare of moment energy and strength, and then do Kamikaze shopping. In either case, I cannot afford to enjoy window shopping.

When someone asks me if I could do grocery shopping, the answer is “yes”. However, that “yes” is far more different from healthy people’s “yes”.

What is my disability? My disability is severe ME/CFS, the invisible illness. I don’t have ability to do the basic and simple things. And just like people who lost their limbs or sights, I cannot get the ability back.

 CFS Equation

I was fascinated by RachelCreative’s attempt of finding the equation of ME/CFS. She is trying to find a formula that can explain balance between energy, time, tasks done and potentials. So I tried to come up with my own version of ME/CFS formula.

However, it was an impossible task. I felt there would be lots of subtractions and divisions but not much adding.

My first attempt to find the balancing formula would be to trim down everything to the core and absolute essential.

For example…

·         Hope is important to hang on and keep going. But we have to look at them and shave off false hopes and keep only the reasonable and possible hope.

·         Things I want to do need to be my only passion. I need to trim off things such as the things I want to do because it would make me look good or everybody else is doing. I need to stick to the only thing I am passionate about doing, otherwise I would waist lots of energy I don’t have.

·         Things to do list for everyday life also needs to be trimmed down and try not to feel guilty about it. I don’t answer phone calls because they are all telemarketers or rude person calling to the previous owner of my telephone number. When I’m very sick, I don’t even attempt to answer the door because by the time I reach the door, nobody is there waiting for me. I don’t feel bad when I cannot have shower for a day or two. I am trying to get used to dirty dishes piling up for a couple of days. I am trying not to worry when I cannot clean the house for more than a month. And etc…

I am not sure what would be left when I shaved off all non-essential stuff about me and my life. I didn’t renew membership to CPA Australia this year. It was a false hope that I could go back to accounting profession. I am only an accountant on paper now. I shaved off my lifelong slogan “stand up and fight for my principals”. Life is so unfair and I cannot keep wasting my precious energy to prove my principles to people who do not care. I just have to keep the satisfaction of being right and good to myself. I look away from things that upset me rather than challenge them. (It doesn’t mean I don’t care the important issues for fellow human beings.) These were not easy decision to make. However, I am slowly getting used to the process.

Each time, I shake off the thing and belief that used to be very important, I get closer to finding true me. I am hoping that I will find my true passion when I trim off all non essential things.

And when I trim off all non essential things from my life, I may find my own balancing ME/CFS Equation.

I posted this at my other blog on 10 June 2007. It took me for a while to post it here as I am pacing myself very carefully. I am checking my friends' blog and leave short comments. (And of course, short emails to Chezza.) But that is all I can handle at the moment...

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I was tagged by Connie. This is the first time I was tagged, so I am excited. (And it is good to know that the task is not difficult. ;-))

This one’s all about how weird I am. Each player has to list 6 weird things about themselves.
The rules also have to be stated clearly. When you’re done with your 6 weird facts, tag 6 more people and list their names. Don’t forget to comment the person who tagged you to let them know you’re finished so they can stop by your blog!

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I am a little worried as people might think I am psychologically and clinically screwed up if I honestly list the things. Oh, what the heck, my neighbours are not checking my blog anyway.

1. HUMAN MUM TO TWO DOGS. Well, I treat my dogs as they are my real children. (I don’t have my own human child.) It is possible that they will be included in my will to inherit my almost non-existent estate when I die. When I need to discipline them, I talk to them and reason to make them understand why they cannot do certain things. I am seriously trying to become their mothter whom I wanted to have.
2. LOVE TV PROGRAMS FOR CHILDREN. I am fully grown up adult (I just realised that I am also a middle aged woman, although I don’t feel like one.) and yet can be entertained by childrens TV programs.
3. LOVE GROCERY SHOPPING. I guess I’m not the busy Mum who has to keep going back to supermarket over and over. I am very lucky if I could go out fortnightly. For a chronically ill person who is house and bed bound, it is a precious entertainment opportunity.
4. LOVE ORGANISING BUT STILL VERY MESSY. I am obsessed with organising things and sorting things out. But there are always messy piles of papers and something else. I cannot master the perfection yet. The rules of organisation in my life is still being updated. I have good quality suspension files and other filing systems. And they are labelled by labeling machine as hand writing is not good enough for me. My attraction to accountancy could be the fascination of sorting each expenses into different categories.., because it is definitely not because of fascination to numbers. :-p I am also tempted to upgrade my Office XP to Office 2007 because its Outlook has advanced function to colour coordinate schedule, tasks and notes, which I found very difficult to resist. (I know very well that there is no need of such organisation program for a bed ridden pensioner…)
5. GREW UP IN JAPAN. LIVED IN MATCH BOX IN TOKYO. BUT I STILL NEED LOTS OF SPACE AROUND ME. If I didn’t have two dogs, I may have settled into a small unit when I left women’s shelter. Hmmm…, I doubt it. I cannot live in a small unit even rent is much cheaper than a house. My excuse is that renting house here is as same price as renting small unit on the Gold Coast. Since I am house and bed bound, I should be allowed to have a little luxury to go out to back yard when I have a good day and enjoy fresh air and breeze without being disturbed by neighbours.
6. MY SOUL CAME FROM IRELAND. This could be the weirdest statement. I don’t know the reason why, but the strong feeling is inside of me for very long time. I never been to Ireland and I don’t have much knowledge of the country yet. I feel peace and at home when I feel at the cliff over looking ocean and gray sky or among trees, moss and spirits of nature. And my soul knows it is somewhere in Ireland.

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I’m going to tag:

Heather, Panthergirl, Chezza, Rachel, Worker and Tanya.

PS. I just found out that I have much more than 6 blogging friends. 

PPS. I am making a little change in the rules that the person who is tagged can choose to play or not play. People can play as long as they feel it is fun to participate. I hope the owner of this game woudn’t mind… I just realised that not everybody who is tagged is going to play for some reasons. I respect their choice and do not wish to put any pressure on them.

My condition seems to be improving a little bit after I could not leave bed for a month and struggled to do just very basic things to survive. I pulled all my energy and courage today to do grocery shopping. I stocked up lots of nonperishable food, vitamin & mineral supplements, dog food and worming tablets and etc, just in case this activity would push me back in bed for long time again. I almost got heart attack when I pay for them.

Although, it was physically very tough, I enjoyed my first outing in a month mentally. My dogs also enjoyed the short drive in the dark and gave me positive feedback when they sniffed to check grocery bags. It was wonderful to have decent meal and some treats.

It was also a relief for me to feel ’Battle of Rachels’ is ceased for now.

When my ME/CFS condition gets worse, I start to suffer mentally. I become very bitter and become the person I hate. This ‘ugly Rachel’ takes over control and makes me hate the whole world, makes me feel that hope means pathetic and makes me feel that I am such a useless existence. ’Ugly Rachel’ encourages me to just give in and forget about ‘trying to become the person I want to be’, ‘there is always positive in any situation’, and ‘people were born as good’.

And it is painful to feel that ‘ideal Rachel’ is loosing her power to keep positiveness, hope and love to fellow human beings. Every thoughts and moment was the constant battle of ugly and ideal Rachels. It is such a dark, lonely and torturous place to be.

Now I am feeling that ‘ideal Rachel’ is getting stronger again and cheering me up that I can still hang in there and will find the way to live with ME/CFS. ‘Ideal Rachel’ is making me sure that I can still become the person I want to be. I will eventually find a purpose in my life and will become a contributing member of society again. ‘Ideal Rachel’ gave me a pat on my sholder and congraduated me for not giving up who I am during the ‘Battle of Rachels’.

At least now, I can picture myself smiling again. And it is a good sign.

I am completely exhausted and frustrated. Since I had my challenging phone conversation with Blue Care two days ago, my condition got even worse.

I just don’t know which part of this simple English need time and university degree to understand. “I am very sick and living alone, am house bound and bed ridden and it is getting desperate to get some help.”

I had fantastic support from Blue Care on the Gold Coast for about three months before I moved here. They even got special permission from women’s shelter and supported me physically and emotionally. (Women’s shelter has very strict secrecy policy and nobody is allowed to know its address, not even your own mother. I may make a post about it in the future.) I had no choice but move away form their service to settle into unknown area. They told me that I was able to receive the same support at my new place, and that was the only reason I decided to move away from my friend, not that I had a choice. My file and referral had given to Blue Care in this area in December and I was supposed to receive a phone call from then as soon as they received my file.

It’s been 6 months and I still haven’t heard anything from them. I sent high priority email asking where the transfer process was in February and I had no response. During this period, my now long distance friend M was jumping up and down on the phone trying to speed up the process. The reason why I could not make the phone call by myself was because I was just too sick to do it, not because I was lazy. During this period, I had to move house again without any help, and it destroyed my remaining energy and strength. I haven’t been able to go out for nearly two weeks now and I have no idea when I will be able to do grocery shopping. I had run out of milk. And dog food was about to finish. The only reason I still had some food was because I haven’t been eating much. When M spoke to them last week again, they told her that they were going to get the referral from my old Blue Care and  would have someone to ring me… This was the third time they mentioned about getting referral.

My friends had offered to do grocery shopping for me. But I could not accept their kindness because I feel guilty to make them drive 1 and a half hour just to do my grocery shopping, and another 1 and a half hour to drive back.

I couldn’t bring myself to ask M. She has enough problems of her own. She works five days a week and always very tired. She hates driving long distance. And she already has done so much to help me.

So I pulled all my courage and energy to ring them. I struggled to tell them who I was and the purpose of the phone call. Thank God, the receptionist knew who I was and mentioned my friend M had spoken to her. It saved lots of energy and anxiety. But I could tell that no action had done and there was no intention of doing it.

She was giving me all the funny excuses and told me to ring Community Health and find out what was going on with them. It really upset me. They had no intention of giving me the phone call or sending me courtesy email. The referral went to the Community Health was for Social Worker and I was already told they could not help me in January. So I had to ask her if they (Blue Care in this area) provide housekeeping and grocery shopping assistance, because that is the service I had before and I have been waiting for. She mumbled and told me yes that is the service funded by government and they provide the service from their office. Then she told me that they do not do emergency support as if I was demanding the support right now. I told her that I was not asking for emergency service, but I needed their help sooner because the situation was getting desperate and I had no idea when I could do grocery shopping. I asked how long more am I going to wait, but she didn’t know. She kept telling me that paper work needed to be done before I receive the service as if I was demanding something unreasonable.

She told me that Intake Worker was not in the office that day, so she would mention to the Intake Worker that I called. She also suggested to contact Salvation Army because they have someone to do emergency grocery shopping for me.

I sent email to M to let her know that I spoke with Blue Care. I also mentioned about Salvation Army in the email, but I was going to find more detail the next day, because I was already exhausted from the phone call.  

When she got my email, she rang up Salvation Army to send someone to help me with grocery shopping as Blue Care advised me. First, she was given a wrong phone number by them. Somehow she found out the right office to request the help. She only found out that the emergency help was to give food voucher, not the physical help to do grocery shopping. Because of the wrong information given and misunderstanding between them, she had to have long confusing conversation with the telephone operator. M could not get off the phone as the operator kept asking if somebody could go to the office to pick up the voucher and she was telling over and over to him that was not what she wanted. After the endless questions to each other, she decided to rescue me by herself once again. (When she told me about this ordeal, I was so glad that I didn’t make the phone call by myself. My ME/CFS brain would have been crashed and stopped working half way through the phone call.)

When I got email from her telling me she was leaving her work now to come and help me, I got panicked. It would be about 50 minites drive for her and I just felt massive guilt in me. I sent email back asking her not to come because I was feeling too guilty to make her leave work early and drive the long distance. She didn’t take no for an answer and told me that was what she wanted to do so that she would feel better.  

I just cannot thank enough to her for her extra efforts to help me and still being my friend. I really hope that I will get better one day and pay her kindness back somehow.

The next day, I finally received the phone call from Blue Care that I had been waiting for 6 months. All these time, she had my complete file sent from the old Blue Care and she would know exactly how ill I am and what kind of support I was receiving from the old Blue Care. But I knew it was the first time she opened the file when she was asking me questions to do the “paper work”. I was told that their nurse would come and see me in 16 days and would do the assessment.

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Sometimes, I get so frustrated. I do not know what other way I can make people to understand that I am very ill and I can not go out, therefore I need help.

When I say, “I cannot go out.”, I cannot go out for fun, I cannot go out to find a doctor, I cannot go out to pick up food voucher, I cannot go out to post mails, and I cannot go out to do grocery shopping.  I just CANNOT go out. I DID NOT wish to be sick. I WISH to live without getting help from other people. And when I say, “I need help.”, I mean I NEED help.

Please do not make me hate existing in this world anymore than necessary.