Difficult Time

 

Thursday, 15 July 2021

 

It has been more than three weeks since I started having a severe spasm. It was when I started an online exercise. I felt really fun and exciting to do, so I kept doing it for a week for half an hour. From then on, every morning after breakfast when I entered my room my body became not well and my spasm slowly attacked me.

The nerve inside my body made me unable to do anything. Every morning, when I do my toileting on my bedpan I have to lie down. The most difficult part was to help me onto my bedpan. It was because both my legs were very stiff and couldn’t bend up. This makes mum and Janice very difficult to handle me.

Due to my spasm, it took a long time for me to urine. After urine, mum has to hold my stiff legs so I can pull my pants up. As I took quite a long to pull my pants up, mum’s hands and body were painful upon holding my stiff legs.

My spasm lasted for hours until I have to lunch in bed as I was too stiff to sit up. I feel sad that mum has to feed me in bed.

My spasm only attacks my legs, both my hands can move without difficulties, but I have difficulty in breathing.

After my afternoon rest/nap, I’m back to usual again, but it makes me quite tired.

As my spasm attacks me, I feel frustrated as most of the days I have lying on my bed. What I did to call to God to release my spasm.

 

 

Emotionally down

 Tuesday, 2 June 2021

 

Emotionally down

From the beginning of this year till now, emotionally I felt not that bad as I occupied my time selling cooking with my cousin during Chinese New Year.

As days and months passed, my mood became worsen. I feel very down as I don't feel like doing anything. Though I was in front of my computer, I didn't do anything the whole day except watched movies online.

I feel sad the past six months, as my mind couldn't able to write more stories as my heart wants to. My blog is so empty with only a few stories on it.

Though I write one story, it will take me a long time to finish. As I want to complete my story, but I don't have the mood to do so.  

Another morning at Psyciatrists Dept

Tuesday, 27 April 2021

                                      

          Another morning at Psyciatrists Dept

 

My last check-up was in early March, yesterday I went again. Janice dropped and pushed me up to the department around 10 am dropped my card at the counter and she went back.  When I arrived many people were waiting already. Few elderly people in wheelchairs were lined up in front of me. So I had to seat behind me.

I waited about half an hour before the counter staff called my name to take blood pressure. Luckily, now blood pressure taking is at the side of the front counter. I feel is easier for everyone.

After taking my blood pressure, I waited for my doctor to call me. After nearly 20mins of waiting, the doctor called me to go in.

I was happy to see my regular doctor. I told her my mood was very low the past few months. She talked and asked me about my thyroid. I told her the Endocrinologist doctor said my blood test was good. I was in the doctor's room for more than half-hour.

Since my mood wasn't good, she increased my medication.

After left her room, I wheeled downstairs to the lobby and called a Grab car. While waiting for my car, a lady was standing near me. When my car arrived, I asked the lady to call the car driver. She was so kind, she pushed me down the ramp and helped me get into the car.

I was so thankful to God for sending someone to help me in my difficult time.

Thank you, God, for helping me that morning.

 

Dream 2- Family Life

 

Wednesday 30 Mac 2021

This may be a crazy dream but I wish to have a child or adopt a child. Seeing many of my age disabled friends have children of their own and have a family. Their kids’ can help them in their daily things. When I went shopping, seeing couples/family with their baby or children, in my heart I wish so much a family life.   

I especially love baby girls, I wished so much I can have a child of my own. Severe years ago for my curiosity, I asked my Neuro doctor if I can have a child, they told me, due to my spasm medication which I'm taking, it's not advisable to a child. I wasn't a disappointment as I guess this myself.

One day, I also went to the welfare office and asked the staff whether a single parent can adopt a child. They told me it's very little chance, as they will accept more for married couples. When I heard this, I felt really sad. Before this I know there would be a lot of procedeer and it would be more difficult for a single disabled to adopt a child.

I yearn to have a family life like my friends, but this will come to reality. This is not God's will for me. I can say the feeling, what I dream and wish for is not God’s will

A New Experience

 Monday, 8 March 2021

I have been missing myself from here for the past two months. Why? I have a lot of things I wanted to write, but I completely had no mood and my mind was blank on what to write. The main thing was I had no mood.

This is what I did in January 

During last year's Christmas, my cousin Margaret suggested that we try selling cookies for Chinese New Year, so Janice and I agreed that we give it a try. Margaret and I were partners - I took the orders and she bakes the cookies). Starting January, with my friend's help, I share 3 types of cookie pictures on my Facebook and Whapapps.

It was an exciting few weeks as many of my group friends' and relatives ordered our cookies. Margaret baked the cookies non-stop with the help of her children. Everyone loves her cookies and said it was delicious, so they kept ordering. I stopped taking orders in January as Margaret and her children were tired. They also had other things to do.

It was fun and a new experience for us. I also learned some new things -selling cookies. It wasn't an easy task for Margaret to bake and arranged cookies in the containers.

 

  

My Birthday Treat

Thursday, 10 December 2020

This year on (10/12) my birthday was especially different because I celebrated my 50' birthday. I thank God for giving life until this age.

After my morning bath, mum and Janice gave me a surprise with a colorful banner sticking on the wall of "my 50th' birthday". When I came outside for breakfast, I saw the banner I felt really happy.

That morning Janice brought mum and me out to Gurney Plaza for lunch and shopping.

Firstly we headed to the 3rd floor to search for a new handphone for me as my present hp is spoil. We went to one or two shops, but I didn't find the suitable one. Then we went to Charlie Care Shop (handphone shop).

We checked out a few phones there and took a long time to discuss the hp which I wanted. The guy in-charge, Janson explained about the new hp to us.

It was lunch-time then, we find the nearest place to eat, so we went to Hide Out Restaurant on the same floor. Janice wanted to buy a piece of cake for me, and she told the staff it was my birthday. 

There were few people in that restaurant. We took our seats and ordered chicken chop and pizza. We enjoyed the food there. After finished our lunch, the restaurant staff gave me a free cheesecake (for my birthday). The cheesecake was very nice.

From there, we adjourned back to the handphone shop to test and collect my new hp. At last, I got myself a new phone. It was Janice's birthday and Christmas to me. I felt happy for her gift to me.

We went to other floors to buy some stuff. When we went down to the ground floor, I was so amazed at the Christmas decoration. It was especially beautiful. I took some photos there.

We went to Mc Donald for some ice-cream. We rested a while there to enjoy our ice-cream From there, we went to down to the Basement to buy some food for dinner. At the bread/cake shop Janine bought a small birthday cake for me.

After bought everything, we went home. Janice and mum sang birthday songs and I cut my cake.

I felt happy and thankful to Janice for making my special day a remembrance. I thank God for giving me a family who loves me so much.

 

Morning at Psychiatrist Department

Tuesday, 8 December 2020

It’s has been 3 months since my last follow up with my Psychiatrist till today (8/12). Denis drops me while Janice wheeled me up to the dept. When I arrived there around 10 am, there were many people already waiting. 

At the same time, my Neuro medication has finished, and need to have a new follow-up. After Janice left me, she went to the Neuro dept (104) to take a new medication chit from the doctor and collect them in the pharmacy

On my side, I waited for nearly half an hour before the counter staff called my name to take blood pressure. When I pushed myself to the back room, few people were queueing in front of me. There was only one staff taking blood pressure for all the patients.

I came back outside, I saw my place was taken up by a few elderly people on the wheelchair. So, I stay behind the other wheelchairs.

While waiting for the doctor to call me, I observed the people there. I was unable to write my journal on my hp due to my eye problem.

When the doctor called my name, I was happy to see the same doctor who saw me the last time. She is a good, kind Malay doctor. When I was in her room, she asked me about my thyroid and the doctor I have seen. She told me my thyroid can upset my mood too.

After she has seen my mood is quite stable, she continue my present medication at the same dosage. Since everything was ok, I didn't stay long in her room. She wrote medication chit for me and helped to wheel me out.

As I pushed myself out to the corridor, a kind Chinese lady asked me if I help and she pushed me near to the lift. I thank God for sending someone to help.

After I went down and straight wheeled to the lobby. I took a Grab car home, thank God He gave me a good driver to help me into the car.

In the afternoon Janice collects my medication for me.

 Thank you, God for helping me the whole morning.

Dream 1 - Marriage Life

 

Wednesday, 2 December 2020

 

In 1997 when I started writing, I wrote about my dreams. I felt happy as some of them came true, but some of them didn't.  So I accepted it.

Now I have a few other dreams too :

Since my younger day, when I saw my cousins and disabled friends got married. It has always been my dream to be a bride wearing a white beautiful wedding gown, but sadly it would never come to reality.

Even though I have a partner for the past 16 years, he can only be my companion. Due to some of his personal problems., we will never able to get married. Even though we cannot get married, I thank God for bringing him into my life. He is a great guy, as he's willing to accept me as his partner. He accepted me for who I am.

He cares, understanding, and patient towards my condition and he knows how to handle me when my spasm attacks me. Even he has his bad side, I accepted it as everyone has their good and bad side. We always share everything openly so we understand each other better.

I can say I'm quite sad as I won't able to get married, but nothing can be done. I have to accept it.

Weak neck

 Friday, 27 Nov 2020

 

Since I was a teenager my neck was very soft. I was not able to sit up with my head straight. It kept flopping down. As to keep my head up and straight, my class teacher (Cikgu Joe) made a headrest for me. Even with the headrest, my head still falls. Some of my school friends who saw me would push my head up.

I can say I hate the headrest, but what to do as it was to support my head. But thank God, in 1990 after my major spinal surgery in KL God strengthen my neck. I need not had to used it anymore from then on.  I felt really happy at that time.

But now I feel sad my neck is getting weaker again. Last time I could sit the whole day without feeling neck/shoulder having pain. For the past few months when I sit, my neck keeps having muscle pain. I have to put a headboard to rest my head.

My fear now is my neck gets weaker, but I cannot do anything. My life is in God's hand. I can only pray that God will continue to strengthen my neck. 

Take a break

Sunday, 22 Nov 2020

 

I thought this whole month of CMCO I will not able to meet my darling, but to my surprised, on Sunday (22/11) he wants to bring me out. I was happy that he understands I felt very bored at home.

We cannot go to any shopping mall, so the only place he can bring is to his center. When he came (to bring me there), he told me they are cooking steamboat. I was happy in joining them. After arrived at their center, my daring started cutting and prepare the dishes for the steamboat. Teik wasn't there, but later he arrived with his daughters. Teik started to heat up and put the dishes into the steamboat pot. There were around 10 dishes, some dishes they bought and some were given by outsiders.

It was nice and fun having lunch with them. I quietly eat while listen to them chatting. Later Teik son join us. It has been quite some time since I last saw Teik three children together. Everyone was enjoying the steamboat.

Later that afternoon, while chatting, we talked about my wheelchair tire and break which was not working well.  Teik wheelchair tire was better, so he changed my tire with his. He also tightens my wheelchair break. I felt happy as that afternoon he could change for me.

Since there were a lot of steamboats left, my daring prepared the food for me to bring home. After getting ready for everything, he brings me home. I felt happy to be with their company and to be at my darling side.

 

Trap Again At Home

 Monday, 16 November 2020

 

As of last week (9 Nov) CMCO starts again for a month for Semenanjung Malaysia. So I’m stuck at home and cannot go anywhere again. The most terrible thing is I cannot meet my darling for another month.

I canceled my physio appointment for tomorrow (17 Nov) In fact, I can go but I didn’t want to. There are many people in the physio dept and not the same in OT dept. Their room only has a few staff and patients So, I stay at home.

People always say home is where the heart is. But my home is like a prison to me. Even though I have my loving family with me, all the good food to eat, and everything I have in my home. The thing I feel is "loneliness and unhappiness in my heart.

When CMCO people are still able to go out to work and do daily things, But for me, I'm 24 hours at home. Though I occupied my time doing so many things, yet I feel frustrated, lonely, bored, and other feeling too. This is how I feel every day.

Terrible Feelings

 Sunday, 15 November 2020

Since last month, my mind is blank again as I don't know what to write. The whole day I occupied myself arranging my stamps, take the picture and post them online to sell. 

I have many things in my heart I wanted to share, but it's difficult to put them in words. I don't understand why sometimes I can write so fast, sometimes I can't. I wish I can keep on writing as I love to write. I feel frustrated at this moment as I feel I don't have the mood and bored even though I occupy myself with many things. I hate this feeling.

Dear God, please help me. Take away these terrible feelings. 

 

Stamp/First Day Cover Collection

Monday, 9 November 2020

Lately, I took out my boxes of old stamps and first-day cover which I have kept them since years ago. Last time I collected a lot of stamps, washed, and place them into albums. Janice and my dad also used to keep lots of stamp albums and a lot of them were also unwashed stamps and from all over the world. They passed them all on to me.

Since I am unable to go out at this time of CMCO, I occupied my time arranging, wash, and take pictures of my stamps and first-day cover to sell. I'm slowly doing as there are a lot of them.

I'm doing all these things to occupy my day and especially my mind so that I don't keep thinking of negative things.

A Boring Month

 Saturday, 31 Oct 2020

The whole of last month (October) I didn't go to OT, Physio exercises due to CMCO at the State Prison behind GH. Though I wanted to go, Janice discourages me from going as afraid the Covid virus is there.  So, I had to quietly stay at home. I didn't go to my Psychiatrist's follow-up either instead I change the appointment date to mid of December.

I can say, I was at home every day. I went out with my darling only twice last month. On other Sundays' he was busy with other things.

Even though I have daily things to do, yet I felt bored and lonely as I'm in my room day and night. I continue to do one thing after another, yet my feelings are the same. 

Getting More Costly

 Thursday 29 October 2020

 

Since last week, I had a hole in my top front tooth. I dread to go to dental, but I had to. So last week Friday, I made an appointment with Adventist Hosp. dental again.

Two days ago (27/10), around 9.30 am Janice dropped me at the lobby and the staff there pushed me up to the dental dept. There were only a few people there when I arrived.

Within minutes, the nurse came to push me in. Dr. Eric checked my teeth before the nurse helped me down the chair. I thought my front tooth has a small hole, but Dr. Eric told me it was a big hole. He also saw another bottom tooth need filing.

He filled both teeth around 45 minutes. Thank God my spams didn't attack me and I was in good condition. I felt relief when it was finished.

After finish, a passerby nurse pushed me out to the counter. When the staff called me for payment, I was surprised the charges are so costly, I pay the bill with an unhappy feeling.

When Janice came to fetch me, I thank God everything was over that morning. Maybe it will be the last time I go to Adventist (dental) as everytime I went there the charges were getting more costly.

 

 

 

No Inspiration

 Monday, 26 October 2020 

I haven't been updating my story since a week ago. I kept thinking about what to write, but my mind is blank. Sometimes my inspiration comes so fast that I can write within hours or days. Yet some days, I completely not able to write.

The whole of last week I didn't go anywhere. my body also didn't feel good too.  Certain days I felt so down with my spasm. I can feel the nerve inside my body pulling me. My body movement slow down. I have difficulty in pushing my wheelchair, not only that I felt very tired.

Certain days when my spasm attacked me more severe I have to lie on the bed till evening. During that time I felt terrible as my muscle kept pulling and I wasn't able to do anything.

When my body stiff with spasm, it made my mum difficult to transfer me to bed. But she helped me patiently and quietly. I felt quilty and apologies to her, but her only word was "it's ok". What I did was thank her. 

I thank God for giving strength to carry on with my sickness in my life. 

 

My Life Photos

 Saturday, 17 Oct 2020

Lately, I have been changing my photo albums and went through all my photos. From childhood days until today, I have changed so much with God's grace. He gives me life until this very day.

I feel happy to see all my photos of my family outings, my close friends, my activities and outings with friends, my outstation and overseas trips, my boccia sports, and other photos. It’s a good memory of my life.

Even though with my sickness, God has given me life and I have done so much all these years. I thank God for all He has given and done for me.

Thyroid

 

Tuesday, 6 October 2020

On Tuesday (6/10) was my first visit to Endocrine Dept (at ACC Building). In July, my Psychiatrist doctor wrote a referring letter there for my thyroid problem

Two week ago, I took a blood test at Outpatient Dept (001) before I see Edorine doctor.

That morning, Janice dropped mum and I outside ACC Building, mum and I went up to the 1st floor.

I didn't know where it was, but Janice guided me and it was easy to find. When we enter Edorine Dept, there were so many people. All chairs were taken up, luckily a lady saw us and she gave mum her seat. 

The procedure at the department is quite the same as Psychiatrists Dept, but slightly different. We need to place our card in the first counter, later another (counter) the nurse will call us to take our blood pressure and give us a number. What while waiting, I observed the people who were around there.

When my number was called, I wheel inside. When I reach near the doctor's room, a young Chinese doctor came to push me. When I was inside, I was slightly surprised by four doctors' with their patients in the room. I was happy to have a lady doctor who talks patiently with me. She went through my letter and asked me about my history. She went through my blood test paper.

After discussed with her boss, she explained to me about my blood test which I couldn't understand much. She asked me to continue thyroid medication and will see me in another four months. Before my next visit, I have to take a blood test again.

After taking my appointment card and my medicine chit, we went down. I called Janice to bring us back. I didn't take my medicine as there was a queue of people. Janice will take my medication another day.

Thank you, God, for the morning was over and everything went well.

A Hot Afternoon

Sunday, 4 October 2020

On Sunday (4/10) I thought I would be staying at home until my darling called me that night before saying they would be going Balik Pulau.

On that morning, my darling fetched me around 11 am and we went to their center. Our plan chanced as we were not able to go to Balik Pulau as Teik has to repair his motorcycle. 

So I spent my time at their center watching my darling helping Teik with his motor. I thought Teik wouldn’t take that long to repair his motor but he has a problem fixing the parts, so it took a long time until he finished in the afternoon.

We didn’t go anywhere except spend time at their center. It was quite a hot day. Even though I did nothing there and felt very hot, yet I felt happy I was near my darling.

 

Spasm Attacked

 

 Friday, 2 October 2020

 

This week has passed and the weekend is here again.  In the past weeks, my body condition has not been very stable – someday I’m in good condition (I’m able to do my part-time job and daily things). But certain days, I feel terrible as my spasm attack me severely until I had to lie in bed.

It makes me feel frustrated that I’m not able to the things I wanted to do. Even though I want to do things, my movement would be very slow. So, I need to take things easy and relax more. This is something which I dislike because I have been always on the move.    

This is beyond my body control and I cannot do anything except to relax and accept it.