Saturday, 24 May 2014

Blog update; TM update, One Utama, Robert Davilla

السلام عليكمًًًًًً

Alhamdulillah, I have finally updated 'My Life with Transverse Myelitis'. I have been feeling very lazy lately. The other day I was asking someone how do people stay consistent? How do some people keep that energy going? How do they remain steadfast in what they're doing? I'm still searching for the answer and I hope I'll find it soon.

On a lighter note I had lunch the other day with my family. For those who are wondering, yes, I do go out and have fun! One Utama is a really disabled-friendly shopping mall. I've been there three times since I've been wheelchair-bound and it has been really easy for me to get around. I've eaten in the Arena foodcourt, Delicious and Fish & Co and it has been easy for me to sit at the tables and manoeuvre around. For those wheelies (people in wheelchairs), I strongly recommend One Utama for your shopping destination.

Oh, and not forgetting a video that I wanted to share this beatiful story about this man who is paralysed from the neck down and found Islam in the middle of a Christian town, mashaAllah. Please watch it, it's really inspirational.

This is Cee signing off...

My Life with Transverse Myelitis Part 2

It was nighttime when they moved me to another section of the ER, the resuscitation area. I suppose this part of the room is for those who have stabilised and are waiting to be warded as it was much less chaotic, patients were put in rooms instead of being left out in the open like in the ER, and the medical staff were more relaxed compared to those attending to patients in the previous room.

I was placed in a room near the nurses' station. I felt much more at ease, maybe because it meant there was some kind of progress. However, the experts still didn't know what was happening to me or find what the problem was.

And I still didn't have a branula on me. (Short-term memory no more!)

Soon after being placed in the resuscitation area, I was wheeled off to get a CT scan and x-ray done. It was not an easy task, I was completely paralysed in my upper body and my lower limbs were weak. I found it extremely frustrating when the radiologists kept asking me to move and when I told them I wasn't able to do so, they asked me whether I could move anything at all. But alhamdulillah, despite the difficulties, they managed to get everything done.

I was wheeled back to another room. I was very thirsty and hungry, I haven't eaten or drank anything since I've arrived at the ER. Not that I had food on my mind what with my condition but nature kicked in and my body, despite what was happening to it, told me that it needed water and food.

I remember all my aunties coming to see me and someone getting me food (Hello again short-term memory), porridge from McDonalds. It was hard for me to eat despite my mother's best effort but I managed to eat enough to stop the hunger pangs.

Looking back, I wonder how my mother felt at that time. If it was worrying me to such extremes, how would have my felt seeing her only daughter in such peril.

Later at night three doctors came to see me; Dr. Tan and her comrades. She introduced herself as a neurologist. She asked me some questions about myself and about the state I was in; how did it happened, when did it happened; questions that have been asked and answered before.

What she asked me to do then surprised me; she asked me to stand. So, with the help of four women and a man, I tried standing up. I failed to do so. They hastened to put me back on my bed and unfortunately, with much difficulties. But, alhamdulillah, I was back in my bed.

It was after my attempt to stand that I became paralysed in my lower body. When I tried to move my legs, they stayed limp and unmoving. Oddly enough, I wasn't as panicked and anxious as I was before. So, calmly I told my mum that I couldn't move my legs. I saw the look on my mother's face and I knew she was very worried. Immediately she asked one of the nurses to inform Dr. Tan.

It was a very surreal feeling, being completely paralysed. It hasn't sunk in, it wasn't that I didn't want to believe that I was paralysed, I couldn't. It wasn't something you thought would happen to you; paralysed at 22.

When this happened, I was 5 days away from sitting for my 3rd final exam paper. The plan was for me to pass my finals and continuing on with my 3rd year. But this was my plan. God had other plans for me. As corny as it sounds, but God had the perfect plan for me and as crazy as it sounds being paralysed was part of it.

But I couldn't fathom this, couldn't process it at that time. In fact, there wasn't a lot that I could process at that time. I was in a daze, just looking at things going around me; I remember seeing all my aunties and my mum with worried looks, I remember this doctor trying to insert a branula in me and failed, I remember falling asleep until they woke me up to tell me there were moving me to another place...

(To be continued)

Saturday, 10 May 2014

Where have I been?

السلام عليكم

I hope you're reading this in good health!

I know I've been MIA since 1st January. Unfortunately, I was diagnosed with Transverse Myelitis, a rare disease where the spinal cord is inflamed. I'm still in the recovering stages, alhamdulillah, but I'd rather tell my story in my 'My Life with Transverse Myelitis' series, inshaAllah.

So, stay tuned!

This is Cee signing off...

My Life with Transverse Myelitis part 1

How would you feel if one day something or someone you loved was taken from you?

Well, on January 3rd 2014, something I thought I would never lose was taken away from me; my ability to move.

At around 9am, as I was washing my hands, I started feeling my arms stiffening. Not wanting to panic, I continued washing my hands, but coming out of the bathroom, I couldn't move neither of my arms. No matter how hard I tried, they stayed limp by my side. Still not wanting to panic but started feeling slightly anxious as I was thinking to myself, "Am I experiencing a stroke?" (Stroke at 23, I must be super unhealthy), I called out to my mother and upon realising that what was happening to me needed immediate medical attention, I urged my mother to bring me to the emergency.

Getting ready was really challenging. I was still in my pyjamas since I just woke up and haven't showered and it was really difficult for my mum to wear me my clothes. She managed to get me into a dress and a jacket and my hijab and off we went to the hospital. I'm really thankful I could still walk to the car because it would have been real tough for my mum to get me into the car. 

The ride to the hospital seemed liked the longest ride in my life. There I was, paralysed in my upper limbs, with an unbearable pain across my chest and arms which made me feel, and to be utterly frank, like I was dying.

I had only two thoughts in mind; my sins and whether I had done enough to grant me a place in Jannah (Paradise). The fear was there of course, nothing is scarier than thinking that that day would be your last and that was when I realised I wasn't the best Muslimah I could be; I wasn't ready to meet my Creator, wasn't ready for my punishment and questioning. And in that moment, all I felt was regret; I regretted not living my life as the Muslimah I should, as I promised to be.

Unfortunately, instead of turning right into the emergency, my mum went straight, so we had to make one big round. Finally, alhamdulillah, we arrived in front of the A&E, Accident & Emergency. I remember waiting quite awhile for help to arrive. I was sitting in the car and there was this Singh man who kept looking at me and I really wanted to call out for help. I think he must have sensed that there was something wrong with me because he kept looking at me. Either that or he was thinking, "Um, could you please not block the door with your car? Thank you." After what seemed like hours my mum finally arrived with help and a stretcher. I had to be carried on to the stretcher because my legs were already weak and couldn't support my body. And guess what? It was the same Singh man that helped me.

Being in the emergency room(ER) felt very surreal; mostly because I thought I'd never end up there especially not because I couldn't move, and also because the atmosphere was so different to my life, to what I'm used to.

The medical attendant(MA) that attended to me started asking me so many questions. Lucky for me he was really nice and in between questioning, he comforted me. However, there was this doctor who was a bit aggressive and lacking in sympathy and empathy while questioning me which made me want to grab him by the collar and shout, "I AM IN MASSIVE PAIN, PLEASE STOP TALKING AND DO SOMETHING ABOUT IT!" But all I could was moan and so I did and probably sensing that I must be in pain, he started softening his voice and reassured me that I'll be taken care of.

By the time I was in the ER, the pain in my chest and arms had shifted to my neck which made it hard for me to move it. So I just laid there, still trying to figure out what was happening to me until the MA came to me again, this time to insert a branula. I can't remember where my branula was inserted or whether it was inserted at all. That's the problem with having a short-term memory!

After they, the MA and the doctor, finished checking me, I was wheeled to the other side of the ER. I can't remember much after that but I did remember wanting to do number 1 but couldn't so I had to be put on catheter. And also my family members coming to visit me...  I remember an orthopaedic doctor came to examine me and even he was baffled by my situation, so imagine how I felt!

The hours passed by like minutes, I was still in a daze and still confused. I laid there, not abled to move my arms I moved my legs, shifting them from one position to the other. And so the hours pass until I was wheeled into the resuscitation area...

(To be continued)