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My Old Post to BlogNow: Mum’s preparing for "pay back"

Posted Sep 13 2008 1:13pm

4 September 2006 - Mum’s preparing for “pay back”

Ugly argument. Mum’s preparing for “pay back”.

This one is going to be ugly. If you do not want to spoil your beautiful day, please stay away from here.

Mum was reasonably having a good day. Her friend M paid a surprise visit with cake. (When you are bedridden for a very long time, it is very special to have a visitor at your bedside.) When she found out there was no milk in the house, she went to the local shop and got her milk, bread, apple juice and rollie. She enjoyed M was spoiling her and catching up with her in person.

For those who don’t know Mum, she is suffering from severe ME/CFS. Tomorrow, she is going to have Job Capacity Assessment interview regarding to her Disability Support Pension (DSP) application. DSP is Mum’s hope to get necessary help and start managing the illness. She is bed ridden and has nobody to take care of her. Her separated husband (my Dad) still lives here in a different bed room but does not look after Mum at all.

After Merryl left, she had to lie flat for about three hours. Then, she found that her fellow Whitepager had good father’s day and she felt happy about that. She had last meal from St Vincent, hoping it will give her enough brain power tomorrow. She reviewed her preparation for tomorrow’s JCA interview and printed them out. (She prepared the paper because she is paranoid by people who do not believe ME/CFS. And the paranoia came from her own experience.) Dad even gave her evening meal for a change. (Mind you, this is very rare.)

And she was going to have shower and wash her hair, just in case she will be too weak to do it on time tomorrow.

This is where the problem started. Shower was in a disgusting status. Despite Mum’s repeated request, Dad decided not to fix the leak problem. At the beginning of this year, it was just drips and was easily fixed by changing washer. (Mum always did it. But she could not do it anymore because she was too weak from illness.) Now it is constant dribble and more and more damages are done as dad turns the tap tighter and tighter to stop the water. On top of that, its floor and walls are covered by thick black mould and partly pink ones. They are also getting supplement nutrition from dad’s body hair on the floor. (Yuk!)

Mum was going to clean it before she steps in, because she gets very bad allergy reaction from moulds. She tried. But after 1/3 of the floor, she just had to stop and sat on the cold tile floor for a while. She tried to wash off the black floor where she just cleaned. But the tup was too tight for her. (How many times does she have to ask him until he understands?) She was getting upset and had to go back to bed to rest.

She really had to have shower tonight. Not only she couldn’t clean the shower, but also she could not turn the water on. After 30 minutes or so, she decided to ask dad. So she called out for Dad from her bed. He ignored, of cause. When she calls him for help, I always go and hide in my little room. I know what happens when Mum asks him to do something.

She rang his mobile. (She has to do this or to keep knocking on walls to get Dad’s attention.) After a while, he turned up. She asked him to clean the shower. He said “no” and walked away. Mum said to the empty door way, “But I really need to have shower tonight and I get bad allergy from …”

She was getting very upset now. So she rang his mobile again. Once it rang out, she tried again. At the same time, she could hear it ringing. After 10 or 15 attempts, he showed up at her door again. Half annoyed.

“I’m not going to do it. I’m tired.” He said with smile on his face. Mum asked “Can you at least turn the water on? It’s too tight.” Mum had told him so many times that she was very sick. And she had told him equally many times that she couldn’t turn the tap because he closed it too tight for anybody.

“I do not have to ask you if you had fixed the problem. There wouldn’t be so much mould.” Mum was getting more than just upset. “I don’t have money.” He was still smiling. “If you had fixed it at the first place, the problem wouldn’t be that bad!” Mum kept going, “You are doing it to spite me!”

“Spite you?” Now he is not smiling. “I am a nice person. I work HARD! And you are SELFISH!!”

While she was cleaning the shower, she was telling herself that she was not selfish, she was just too sick. Maybe she is selfish, but she did not want to hear it from him. Then, she heard him say, “I just want to get out of this hell!” Mum knows now that it is not true. Mum’s friend, Lifeline counsellor and St Vincent people told her that he would not leave because he knows very well that Mum’s very sick, has no income and nowhere to go. And he can keep enjoying his easy, lazy and pot smoking lifestyle.

Mums anger ignited and told him, “You are A## H$%@!!”

Now the anger started burning inside her. This is not good. When she gets sudden anger, she usually “crashes”. This is my new word about ME/CFS symptoms. It’s something like her body shuts down on the spot. She loose all of her energy, gets very weak, has to lie down and it takes about 3 or 4 hours to recover. When she gets angry or stress like this, her adrenalin start pumping and she gets fake energy for very long time. This fake energy and/or emotional stress are evil because she gets very bad “pay back” or post exertional fatigue. During the bad “pay back” period, she just lies in a dark room with pain all over her body. She is too weak to lift her arm. She can not get up or walk to toilet. She just has to lie there feeling the severe fatigue and pain for days until she gets some energy back.

She got angry because it is only this year he had to pay for every house hold bills. If you must know, he is not supplying enough food for her. When she was not this sick, she was working much harder than him, studying to become CPA, did all the house work efficiently and did most of garden works. It was always her who asked permission to her employer to attend legal or financial matters. She was always there for his family whenever they needed her help, and he refused to socialise with her friends. He never helped her when she asked. He never thanked her. She was paying for more than half of house hold bills and food. When her illness was getting worse, he refused to help with money. That is the reason why she left with so much credit card balance. He is driving her good car every day as if it is his. Then he calls her selfish!

Can he understand that she would be still doing all unequal tasks if she had not been ill? Can he understand that she would have gone from his life long before if she had not been ill? If she is suffering from cancer not from CFS, would he still call her ‘selfish’? The answer to these questions are NO. The drug had already done enough damage to his brain. There is no good human left inside of him. But he is proud that he doesn’t touch the heavy stuff. He told her that drug is more important than marriage. That is the reason why she left him.

Well, back to the shower. With the fake energy (I do not know the name for it yet.), she finished cleaning shower, washed Poppy and me, had shower and washed her hair.

Now she is preparing for “pay back” time, so that she can survive the extreme weakness, fatigue and pain. She made sure our food bowls are full and made sure we have plenty of fresh water. She filled her water container and put it at her bed side. It was good that M bought her some rollie today. She kept them next to the water. And Panadole is there as well.

Now, she is thinking. She can not have “pay back” before the interview. The interview is her future to get out of this hell for herself. She just can not miss it. It is good that B from Blue Care will take her there, but it is going to be a very exhausting trip. It is good that she prepared papers just in case she was very ill on the day, but she has no idea what kind of questions they will ask. She set alarm clock on her mobile phone just in case.

Her adrenalin is still pumping and she would not be able to sleep for a very long time now. Usually she gets the “pay back” after the first sleep. So she may have to stay awake until the interview is finished. Can she do it?

She is feeling so stupid. She called herself idiot. She knows very well how he is like. She knows that his brain is only 13 years old. She always ignores his mean comments about her. She always tries to think she is just going through a bad marriage break up. Things will be OK, no need to panic as life goes on. She never expects him to do anything for her anyway. Why tonight?

When I came out from my little room, Mum gave me nice cuddle and said, “Don’t worry, we will get out of here. And we will be happy again.”

I know that Mum is working on it. It maybe very slow, but it will happen. Mum maybe selfish, but not the way Dad explained.

It is going to be a very long day.

I told you, this was ugly.

We just had nowhere to go but here.


Post A Comment!

4 September 2006 - Today is THE Day!

Posted by ChezzaTJ
Today is the day, old girl when you will get Centrelink sorted out.Just get today out of the way.I am sure that it will go well. I know how you are feeling, wondering if you will make it through the interview without collapsing but you will, because you will have your last bit of adrenaline pumping through you.

By the was it is “nervous energy”, but all of us only have so much of it until our adrenal glands can’t pump out any more adrenaline and then it is termed “nervous exhaustion”, it happens to everyone not just CFSers, but it is much much worse for us.

We have trouble with our shower dripping, hubby has tried fixing it countless times and he is a handyman. So now we put a bucket under the dripping shower head, this helps reduce the mold because the tiles get to dry out during the day. Much cheaper than a plumber.

Go get them girl,


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4 September 2006 - Untitled Comment

Posted by rrmakepeace
Hi Chezza
Thank you for your education on body system. You know that Mum’s pathetic when it comes to this topic. She always appreciate it.
She went and came back. You will know all about it after she had enough rest.

Filed under: Basil, Chronic Illness, Disability, Domestic Violence, Invisible Disability, Life, ME/CFS, Rants

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