Three days of Agony

In 2016, I seek my neurologies in General Hospital Penang for help, if they could increase my medication. Even though they increased the dosage my medicine, yet my spasm was still so severe.

I  adjourned to the emergency few times in GH to check what was wrong with me. What I suffered was, every time I went, I  had blood test and it was very painful. The doctors' checked my blood and it came out good. So they sent me home.

Yet my spasm was still very severe, so the head of neurology knows my case very well. She admitted me to the ward immediately . I stayed there 3 days. It was an hell of the time I spent my days there as no one was there to helped me. My mum and sister came in the morning, lunch and dinner time to help.

In the morning, when the nurses cleaned all the patients, they bath them on the bed. As there were many patients' to bath for. As I was the last patient they bath for. Do you know how they bath me?

They threw the backet of water on me and changed my pampers. That was it!!! Wow!!! I felt like an animal, no human being.

The worst thing was, no one helped to urinate. I had to be on the pampers from evening until the next morning. I wet on the pampers many times and I asked the nurses to helped changed, but they didn't bother about me. The bed was all wet. I had to sleep the whole two nights on the wet and smelly bed. 

It wasn't me alone like that, other patients' also told me that they were all wet. But none of the nurses changed for them too. We had to wait till next morning for other nurses to "bath" us.

The doctors' gave me new medication and on the third day, they said I could be discharged. Praise and thank God I could go home!!! My agony was OVER!!!!

The doctors' didn't know that when I lied down, I had less spasm, but only when I sit up my severe spasm attacked me a lot. They increased my medication and gave me other new medication too. The new medication didn't suit me and I didn't take the new medicine after all I came home.

Anyhow, I was so happy to come home from the so called "prison" I will always remember this "agony" I had gone through

My computer - my best friend

I thank GOD for giving me the knowledge to learn computer and to access to internet. Though the years, I have learnt a lot of things online. Many times when I was stuck not knowing how to go on, I asked my good friend (disabled too) on how to managed. He taught me a lot "new things. Thank God for this friend of mine who is every willing to help me.

From then on, I kept learning and searching new things online. I didn't give up on learning by myself

Many times, when my computer was spoiled or the internet line, couldn't get through. I got very frustrated as I didn't know to do.

My computer is my "best friend". I can say that for sure.

2016 - A very tough year - Part 2

Hi I'm back!!! Welcome a new year 2018.... God give me another year of life !!!!

I wanted to continue from previous my story about my severe spasm, but I completely don't have mood to write. Thinking back of my suffering of my severe spasm, I really feel scare. That anytime it can come back and attack me again.

I truly suffered a lot from my severe spasm in 2016.  My spasm became more and more severe as months pass, until my whole body, limbs, face were so stiffed from morning till night. It started with my left face keep pulling, my head keep falling down (became weak) and my arms and legs keep pulling me and became very, very stiffed.

No one can understand how I felt during that time. I felt very angry, frustrated, sad and etc..etc... I was very miserable because I was always very active person, but I became a person who couldn't do anything at all. I couldn't even use my computer to work as couldn't type on the keyboard. My hand/fingers couldn't control the keys and my head kept falling down.

What I could do was lie down on my bed (almost the whole day) What I could described was I HAD A VERY TERRIBLE TIME. I had difficulty in breathing as there are no air going through the brain. Also very difficult in moving my limbs.

My family members who handle me had a though time too. When my body/limbs were stiffed, it was very heavy to lift/carry me. I thank GOD for my family were patient, understanding and caring for me during my difficult time.

As I lied in bed, couldn't do anything, what I did was kept praying and calling GOD for help and heal me again...

2016 was a very tough year

Hi... hi... I'm back baby...

Time really flies, it's going to be to be 1 1/2 years since I left this blog. I've forgotten I have a blog, till few days ago. Funny ya... So, I come back here again.

I missed writing my stories.. There are so many things to share. I don't know where to start.

Throughout 2016 had been a very, very tough year for me. I had very severe spasm (muscle pull) from my face till my toes.

From January till June my spasm began to start getting severe, but I could still managed myself. Praise God! I was able to go to Genting Highlands with my darling and friends. We went there 3 times within that 6 months. Though I had spasm throughout the trips, I still managed to handle myself. I enjoyed my time in Genting. 1. It was so cooling up there. 2, The feeling of excitement was within me when we were outside taking a walk. Hearing and seeing children and young people playing made me very happy inside my heart.

Everytime we went, there were lots of people with different religion. We enjoyed every moments while we there. I thank God despite I had my spasm, I enjoyed my trips.

To be continue....

A tough life, but never give up

My baby, I have abandoned you again.

I feel this year has been terrible and miserable year. I feel so lost, unhappy, confuse, frustrated depress, useless. I really do not know what to do with life.What I know is I feel my heart is so down everyday throughout this ten months. It's so hard to put a smile on my face.There is no joy in my heart.

Everyday for past ten months, I keep searching for a job. I need a job and income to help my family. I also need it to occupied my time. Yet till today, I couldn't find one. I feel so useless

Early this year, I asked a disabled friend of mine, can the press help me to find a job? He told me I could have a try in writing in. I wrote in The Star and New Straits Times paper column page. I was happy that New Straits Time published my story, but no one approached me with an job. My story (article) was like a write up for public to read.  First failure.

In March, I try an online job - data key in. I paid the company in advance. The job scope was very interesting, After they send me the work, I did the work for two months. I kept emailing them, but received no reply from them. After two month, I didn't receive any payment from them. I knew then I was cheated. That was a lesson for me. Second failure,

I think of ways on how to find a decent job, yet i failed.

In July I made the final decision, I called the The Star paper office, the staff put my call with the chief of reporter. I told him i'm disabled who in need of a job. He  took  my  contact  number . Less than two hours , a reporter name Arnord called me. I was so happy he wanted to interview me. Within half an hour Arnord l and another camera man, named Gary interviewed me. I talked to them for more than half an hour. Gary took some pictures of Julie and myself.

I was surprised and happy that my story came out the next day, with a big article on it. I was happy and excited that a lady from KL emailed Ai Na (a friend of mine). Ms. Dee Dee from KL willing to offer me a job as a"Project Coordinate" and an accommadation. A kind hearted man (Jimmy) willing to offer me monthly cash for six month. I was really happy public respond to my pleaque.

The next day, my article came out again in a small column saying few people respond to my article. My email address was published in the paper.

Few people emailed me offering me job. a few from KL and one from Penang . Others' offered me donation. They banked into my account. I was really happy that week.

I thought good things is coming my way as I got job offers. Nevertheless the job and accommadation in KL didn't suit me as I need a helper, but we have difficulty finding one. Another job opening in Batu Maung, Penang. The problem is I don't have transport and the work is too long hours.

At last, my happiest turns into sadness. What I gain turn to nothing - back to square one.

What I wish, hope and plan wasn't God's will. God has His own plan for me.

Letter to God

My dear God, I'm writing this letter to you... I do not know what to do with my life. I don't know how to be happy. Everyday I try my best to think positive and be happy, yet I feel so empty in my heart. I thank you for all things you have done for me.

Dear God, you know everything about me even before I was born.
Thank you for giving me - a complete face, 2 eyes, a nose, a ear, a mouth to talk, hair, brain to think.
Thank you for giving me 2 hands and 2 feet with 10 fingers and 10 toes and a whole body.
Thank you for giving me a good and loving family.
Thank you for giving me food to eat everyday.
Thank you for giving me a home to live in.
Thank you for giving me a bed to sleep on
Thank for for so many, many things.

Dear God, you have provided me with everything, but why I cannot find happiness in my life?
I want to do so many, many things, but because the spasm I have in my life is the caused me 
to have difficulty to continue to improve.
  
Dear God, thank you that I had improve a lot in many ways. Thank you for giving me life till the age 44. The doctors says I can only live till my teenage ages, but You are greater than the doctors. Thank you so much that I had gone through so many difficult times yet I survived because You were always there to help me through. Thank you for all the good times too.

Life for me may not be easy, but because You are with me I can pull through. Dear God, thank you very much for your love for me.

Life Goes On and On

My baby, I'm sorry for abandoning you for so long. Now I'm back here again. I can't believe I haven't been here for 1 1/2 years. I completely didn't have the mood to write. There was a lot of things troubling me. There were also other things I did which occupied my time.

10 months has passed without waiting for anyone. It's coming to year end again. What did I do for the past 10 months? Actually I have done many things and many things happened.

Since middle of last year, I have been writing many posts for our Disabled Access Penang.  My disabled friends and I wrote a lot of posts as we are fighting for the right of the disabled. We posted them in the Facebook. We send our posts to many disabled group in the facebook and we received many good responds. At that time, I felt good that I has accomplished something. But sadly we stopped writing as middle of this year because we have lost our ideas on what to write. But few of us still writing some posts.

I didn't know what to write so I stop writing till today, 25 January 2015.

My sister 25th Wedding Anniversary

Since beginning of this year I intend to share as much story as I can, but seems I fail to do it. But I will try update more stories of pictures.

Last Saturday (29/6/13) my eldest sister (Janice) celebrated he 25th Wedding Anniversary. We had church service for blessing. Then we adjourned for lunch at Mildlands Court Restaurant. We had an enjoyable  celebration.

My latest cushion cover

This is the cross-stitch I have done few years ago. I kept it, but lately I asked a taylor to sew it for me into a pair of cushion cover.

Gone by the wind

In early March, I wrote to doctor Izmi, (head of Rehabilitation Department). I asked him to help me that I can be walk and also to be independent. Few days later, I received a called from his nurse saying they will arrange a date for me to meet him. 

I prayed and waited that doctor Izmi will be free to see me.  Two weeks ago, I received a call from the Rehab nurse to come as doctor wanted to see me.  This time I saw another Malay lady doctor. She told me doctor Izmi was attending some meeting. So she took over. We talked one to one as for more than an hour as there are no other patients’.

She told me the truth and fact. Because of my sickness, I cannot walk without someone helping me. If I insist to walk, I may fall down which may hurt my back. (I had a major operation on my spine) That is why I cannot fall down. I only can walk for a short distance as an excises.  Due to my left ankle which is bent, so I also cannot walk steadily.

She also told me that due to my spasm, I cannot be completely independent. I will always need someone to help. When I heard that, my heart sank slightly, but I still try my best to do whatever things I can do.

I have to face the real fact that I cannot walk independently and I totally cannot be independent.  The things I dreamt of have been vanish. This is God's will for me and I have to accept it.

If I’m given a chance either to walk or to be independent, I would prefer to be independent. Because I can do anything I want without waiting for someone help and go anywhere I like.

Watching movies in the cinema

Since January till March I went to watch three movies in the cinema. I enjoyed watching thriller/action movies as it keep you in suspend and wanting to know what is happening next.

Sadly throughout last year, I only watched one thriller movie in the cinema. For one thing, I didn’t go out much. Sometimes, when my friends and I planned to watch movie, we couldn’t make it.   Sometimes, I yearned to go to the cinema, but no one in my family was free to bring me out. So I accepted it.

It is an enjoyment to watch movies. Even though I had to pay to buy a ticket without sitting on the chair, it was worth it. But sitting on the chair is surely nicer and comfortable. There is no one to transfer me to the chair. So I will have sit on my wheelchair.

I’m happy the last few months I get to watch few movies by myself.

New Challenge

As I'm bored of going to Gurney Plaza everytime, I decided to take a new challenge.

On Sunday, 17/3, I went to Queensbay Mall with my maid by taxi. I was happy my usual taxi man was free to fetch me on that day. He came around 11.20am, without much traffic jam we reached there within 20mins.

It has been few months since I last went there, I missed going to that mall. My maid pushed me from one end to another, everything was the same. I went to the first floor where a new clothes' shop were opened. I went in to see the clothes' but the prices was very expensive. Then we adjourned to the food court at Lower Ground Floor for lunch. I was so surprised there were so few people eating there. Mostly were Malays.

After lunch, we went to AEON supermarket to buy some household things. I felt happy when I get to chance to choose and buy the things by my own.

As it was only 2.30pm, I went for a movie. Outside the cinema were so many young/old people queing up to buy tickets.  Luckily there was an action movie at that time, if not I would not  have entered the cinema. I have always like action/thriller movies. The movie ended around 4.45pm.

I took a different challenge this time, going home by bus. There was a bus stop was in front of the mall. Many people were waiting for different buses. There were many buses stop to pick up passengers'. Because I didn't know which bus passes my main road, I asked the first bus driver who stopped. He told me the number of the bus. I saw a bus which passed my road, but the driver didn't want to stop. I saw his sour face and he drove away.

We waited for another bus which arrived half hour later. My maid asked the bus driver if he passed our road and he said yes and she pushed me up the bus. We went round the whole town before reaching my main road. I glad to know which bus number to take and the roate to my main road. 

I was glad to reach home around 6 something without my parents calling me. It was an interesting outing and a new experience for me. Thank God my parents let me go without making any noise.

Feeling better

Last Thursday, 14/11, I went to see the psychiatrist doctor in GH for the second time. I was surprised to see so many people in the department. I waited for more than 1/2 hour before my name was called into the doctor's room. The doctor read my report and asked me few questions. I told the doctors' I didn't want to take any medicine in my report. But this doctor asked me to try the medicine which she recommended to me. She says it will make me happy.

So I try the medicine, within few days I could feel the different. I felt calm - my anger, frustration and the negetive thoughts were all gone. I keep thinking if one day if I lift off the medicine, will all these bad feelings come back to me again. I hope I need not have to take this medicine for a long time.

Good things about myself

Last Monday, 11/13, I went for my first counselling session in GH.  My cousellor Ms.Ng doesn't speak   English neither Hokkien, so I have to expressed myself in Malay. We talked around 1 1/2 hours. I told her all my problems - my anger, frustration, my hurt, low self esteem and a lot more. 

I told her everything happened to me in the past. She advice me to say three positive things about myself every morning. I also told her I do not have self confidence. She asked me to list down of good things about myself.

After I came back, I made a list. Never did I realize I have 24 good things about myself. I felt happy and proud that I can do so many things.

1                     I can brush teeth

2                     I can wash my face

3                                       I can scrub my body during bathing

4                                         I can feed myself

5                                         I can talk clearly

.                                           I can wheel myself

7                                         I can wear my dress

8                                        I can tie my corset when lying down

                         I can climb from my bed to my wheelchair in the afternoon

1                   I can talk/express myself in malay

1                   I can do computer work

                      I can do beautiful cross-stitch

1                     I can read story book/novel – English /Malay

1                   I can write blog

1                  I can write better English than my friends

1                                   I can walk with walker despite it’s very difficult

                      I do not give up despite all the struggles if my life

1                  I don’t give up easily / I’m brave

1                 I dare to ride Rapid bus with my maid

2                    I’m an active person / go out/ mixing with people

2                 I can detect my depression and find doctor for help

2                 I’m a good listener /  I’m patient

2                 I can write with both hands

2                 I dare to go out with friends to outstation for holidays

Terrible feelings

Lately, I have been having these terrible feeling. Everyday I face with different moods and feelings. I feel very angry, frustrated, sad, hatred and thinking of a lot of negative things. It’s terribly hard to cope.

All these years, I never had these feeling or thinking until lately. It has become worst and worst each day. 

Something I ask myself :

1. Am I feeling too lonely – that is the bad thoughts come to me?
2. Is it one by one of my friends’ left me?
3. Why is my past keep haunting me?
4. Am I so useless that people looked down on me?
5. Why people cannot look up on me?

I try my best to fight against it, yet the negative thoughts still come to me mostly everyday especially when I’m alone.

Calm in my heart

This week I'm feeling much better. I stop thinking of my recent problem because I have settled it. Now I feel the peace in my heart. But certain times when I'm alone, I will start thinking and feel sad again. I really dislike this terrible feeling. Certain times up, certain times down. All the mix feeling is in my heart these days. 

I hope one day my feeling with be stable so that I can feel better in my heart. 

Lowers time

I have been feeling very low for the past few days. Something happened beyond my imagination. Now I completely have no mood for anything. What I know is - I get upset very fast, feeling very sad and tears keep dropping.

I don't have the mood to talk to anyone including my friends. When I'm alone in the room, I feel very sad. I keep thinking and thinking. I feel like I'm going crazy, but I try my best not to break down.

Dear God, please help me to pull through.

Depression

On Wednesday, 30 January 2013, I went for my regular neurology check-up. This time I expect to see any of the doctors' inside the room and get my medication. Instead I was called into Dr. Eow Gaik Bee room. She is the head of Neurology and she used to see me.

Dr. Eow is a very kind, understanding and soft hearted person. It's very hard to find a head of Neurology with this kind of nature.

When she saw me, she asked how was my mood. I told her I am ok. I do not know what prompted me to asked her this question. "Dr. am I suffering from depression and she immediately says "yes". She told me all the feelings that I have and it's really true  I also read in the internet of all the symptoms' of depression and I have most of it.

She had a long talk with me about my problem and refer me to the psychiatric department. This is what I feels' mostly everyday when I'm alone - anger, frustration, loneliness, sadness, hopelessness, worthlessness and mostly isolate myself in my room.

I tried my best to stay active and forget about my problems, but certain time all these feelings will come onto me. It makes me feel very miserable and terrible about myself.

This is what I face these few years. I try to fight against it, yet I fail. Thank God until now, I'm still ALIVE!

Body more stable

Whenever my maid is free in the evening, we will go down to my apartment lobby. She will help me to walk with me holding the railing. Usually she hold my back for support, but now she doesn't hold me anymore. Only i hold her shoulder for support. I'm happy I can walk much easier now.

My maid is like my trainer - pushing and encouraging me everyday. I feel lighter and easier to walk now. I'm just like a baby who is learning to walk.

Walking without anyone holding

This morning I walked without my maid holding me, but she was behind to guard me. I could balance myself more now. Even though it's very difficult to walk, I will not give up.

I will try to walk further each day. Sometimes, my body condition doesn't permit me to go on, that is where I need to slow down. I cannot push my body limit, if not I will fall again.