Tag Archives: Guillain Barré Syndrome

GBS = Getting Better Slowly

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When we get sick, what we want is a fast recovery. People hope and pray for our speedy recovery. Well, who doesn’t? I want to recover very, very soon…as soon as now…at this very moment. I’ve wanted the fastest recovery for more than two weeks now!

But then, I was made more aware of my condition yesterday. And a reality had hit me so bad. However, I’ve still been praying for a miracle: that one day, I’d wake up and get up from our bed and everything is perfectly back to normal.

The community nurse coordinator who’s been assigned to me came to our house yesterday. She assessed the help and assistance that I need. She explained that a team of therapists are coming in the next few days.

This coming week, a physiotherapist will start to come to help me regain the strength of my body. An occupational therapist will also come to help me get back to performing my daily tasks. A speech and language therapist may also come to help me overcome my swallowing difficulty. PLUS someone will come over several days a week to assist me in showering and in other personal cares — that will include combing my hair, clipping my fingernails/toenails (yes, I need someone to do these things for me nowadays). I will receive all these help and assistance for FREE. I’m still blest, ain’t I?! Yes, I am sincerely very, very thankful! ❤

I have been reassured that I will recover from this. As to how long this will take? Now I know that only God knows. I know I will recover from this. However, there’s one thing that I learnt from my conversation with the nurse yesterday.

She explained to me about a very common characteristic of people with GBS. We want to get things done…soon. We want to fast forward everything. We want the results now. We are somewhat perfectionist. We are the kind of people who find it hard to step back and wait. We do not know when to stop. And that is what I need to learn as I am on the road to recovery: know when to stop. Know when my body can no longer push. Know when my body can no longer handle what my mind has set to accomplish. Perhaps this has been something that I should’ve learnt all these years!

This is not the only time when I got so sick like this. In 2012, I was even admitted in the ICU but the doctors couldn’t find anything abnormal in any tests until that very intelligent doctor said that I was just depressed. Thanks to him for that! Very, very helpful! With all honesty, I wasn’t. But I was exhausted… very, very exhausted — physically and mentally. I even had a fever and I was thinking if I should still go to one of my students before my mother found me unconscious on the floor. Before I got sick then, I was working as a home tutor from seven in the morning until eleven at night. Yes, I was working that long because I loved what I was doing. I only had a total of an hour to rest for my meals in a day and perhaps three hours of sleep at night because I had to prepare the lessons/sample tests for my students. As far as I can remember, that was a week before the exams and project submissions of my students. I was so pressured then because most of them were also pressured to achieve something. And I wanted them to achieve what they aimed for.

This time around, exhaustion was what I had been feeling before I got sick. Imagine being pregnant for almost 39 weeks while still looking after a toddler then a childbirth then an operation to remove the retained placenta from my uterus and breastfeeding while still looking after a toddler. And within a month, I was back to doing some household chores, which my husband might have never recognised that I actually did them [😂]. Spring came and I tried to do some spring cleaning and to re-organise the house (yes, I was too stubborn to push a couple of heavy cabinets around the house despite being asked by many to take things easy as I had just given a birth three or four months ago). Plus the fact that I was still taking my two boys to Playcentre. Then the holiday season came. And during all those months, I did not give any attention to what my body was already telling me. There was even a time when I was only made aware of my high temp (39C) when I was also checked by the paramedics who attended to my sick toddler then. Yes, I didn’t even know that I was sick then because I was focused on taking care of my sick child.

All these might have triggered my immune system to become overactive. So I’ve written all of these now to remind me in the future.

Yes, this should serve as a reminder to myself of what the nurse told me yesterday. “Learn when to stop. There will be times when you’ll feel that you can do more and you’ll do it. But then the next minute or next day, your weakness will have another flare-up. Then you’ll wonder why you are weak again today while you’re already strong yesterday. Then you’ll feel bad and sad because you think that you’re not recovering well. But we need you to be in a good mood all the time so you’re always motivated to do your exercises. You have to remember: you will recover but recovering from GBS means Getting Better Slowly.”

 

I Miss The Mother That I Was

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It was in the last quarter of 2013 when I learnt that I was pregnant with my first child. From then on, every single aspect of my life started to change.

Although I’ve still had plans for my own future, my family, particularly my children, became my topmost priority. My husband and I agreed that I stay at home full time to look after our children. We joined in Playcentre where I became not only a mother to my children but their first educator too.

Although I sometimes miss my life before I became a mother, I have loved being one. No matter how exhausting it could be sometimes, being a mother has given me so much joy. Motherhood has made me experience what true happiness is even if it meant sacrificing a lot. It has made me feel that I’m finally fulfilling my real purpose in life after pursuing too many different options in the past.

Despite the two difficult pregnancies and childbirths, it felt like everything was in the right place. Despite our daily struggles, it felt like we’re living a beautiful life.

I managed to still continue completing another course at Playcentre. I managed to attend the Playcentre sessions with a toddler and a baby. I managed to enjoy working with the other Playcentre parents. I felt like I was already on the right path to fulfill my all-time ambition of becoming a preschool teacher too.

And then a little over five months after giving birth to my second child, something happened in my body. My immune system messed up with my nerves and muscles. It has made me weak and incapable of performing my tasks. At first, I thought it affected only my lower extremities and swallowing. During my fourth day in the hospital, I couldn’t keep up carrying my baby like I used to. Fifth day came and I couldn’t lift him up from the bed anymore. Sixth day came and my upper extremities were already struggling in changing my boys’ nappies. And I had to completely stop breastfeeding.

Deep inside, I was agreeing with my doctors that I should stay in the hospital but I did my best to convince them to allow me to go home. I was itching to go home because all I wanted was to be with my boys day and night. But I was wrong.

Today is the third day that my husband has to drive our baby to a different house to be looked after by a very kind couple for almost nine hours while I’m at home. Today, we are going to visit a preschool where we can enrol our firstborn, which was totally not part of our plans for the very near future.

I decided not to work to become a full-time stay-at-home mother. But now, I’ve not been able to take on that role. I’ve missed carrying my baby. I’m afraid I’m not going to witness the first time that he’ll crawl or even the first time that he’ll try to stand up or sit up. I’m afraid I won’t be the one to guide him in taking his first steps.

But I have to be honest and, yes, to be gentle with myself. I am not the best person to look after my boys at the moment and neither is my husband since he needs to work. All these unwanted decisions are for the well-being of everyone in our family. I can get enough rest and time that I need to focus on my recovery. My baby will be looked after better and he can have as much cuddles as he needs. My preschooler can play in the best way possible without being disappointed when he wants me to play with him but I can’t. And my husband can focus at work.

I believe that this too shall pass but I pray that it is going to be really, really soon. I only want to do the things that I was doing as a mother. I tremendously miss being the mother that I used to be.

My 2.5-Year-Old Son Made Me Cry Tonight

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If you have managed to read my very long first post here, you already know that I have Guillain Barré Syndrome.

GBS has made it hard for me to stand up from low-levelled seats. It has made it hard for me to sit up from lying position. It has made it difficult for me to swallow. It has made it difficult for me to shampoo and comb my hair.

Worst is that it has made me so incapable to lift and carry my two sons. It has made it impossible for me to play with my sons the way I used to.

Yes, GBS has made me feel so USELESS!

Who would want to be in the same situation that I’m in nowadays? Who wouldn’t feel sad? Who wouldn’t feel bad? Who wouldn’t wish to just die?

But each time that I see my very young boys, I can’t help but pray for a miracle. I pray that, in just a blink of my eyes, I am back to my normal self. I pray that, as I take my very next breath, I am strong enough to lift and carry my baby. I pray that, within a millisecond, I can dance, jump and run again with my toddler. I pray that all of these have just been parts of a bad dream and that, as soon as I wake up, I’ll feel that I have never experienced the wrath of GBS.

I know how and how much my sons have been affected by what has happened to me. My 5-month-old baby was crying earlier and my husband had a hard time to make him stop crying. We could hear our baby say “Mom-my! Mom! Mom-my!” Being able to hear my baby call “Mommy” now would have been a song to my ears. But how could it sound like a beautiful song to my ears if he’s saying that while he’s crying yet I couldn’t do anything? It became a torture to my heart!

And my toddler was making different sorts of requests that I could have done and given should I have not been suffering from GBS. This whole experience has stolen motherhood from me!

So tonight as I put my toddler to sleep, I whispered to him, “Sorry, Mommy got sick. I know it’s been hard for you.”

“Don’t worry, Mommy. I love you!”

He said. Then he touched the back of my neck and pulled me towards him and hugged me so tight. All I could say was “thank you” and I started to cry so hard. With that he replied before kissing me on my forehead,

“It’s OK, Mommy. Don’t worry, be happy. Gabrian here. I love you.”

 

I then realised that I must have done something really good in my life.

The Longest Eight Days of My Life

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It was New Year’s Eve afternoon. My left leg suddenly felt weak. I thought that I was just tired.

First day of year 2017. I woke up because of the severe pain from the left part of my hips all the way down to my left foot. I thought that I might have made a wrong step the day before. Lunch time. I had difficulty in swallowing… not that my throat was sore but my throat muscles felt weak. As that day went by, my right leg started to feel weak too. I thought I only needed some rest.

2nd day of the new year. It’s a new year! But it’s also a day for our family to get some break from all the festivities! My husband and I decided to clean the house. I decided to clean our shower cubicle. When I had to get up after scrubbing the floor, I couldn’t lift myself up from sitting. My legs and feet felt powerless. My husband had to lift me up. I thought that perhaps I was really exhausted.

Night came. Severe pain from my hips all the way down through my both legs and to my both feet. Even my saliva was hard to swallow while I was lying on the bed. I thought I had to know what could be the reason.

It was almost midnight. I had a chat with my best friend who’s a doctor in UK. She said the symptoms were alarming. She was hoping that I would go to hospital soon. I called the Healthline hoping to get some advice for possible home remedies. The nurse on the phone said that I should be in the hospital within the next two hours. I thought that timing seems to be not good.

It was midnight. My 2.5-year-old and 5-month-old boys were deeply asleep. They were very tired from the New Year’s celebrations. My husband and I waited til the morning came before we went to the hospital emergency. I thought I would end up being told by the doctor that I would only need to rest and head back home.

In the emergency department. I spoke with the triage nurse. It took only around 15 minutes and I was asked to go to an area. I was given the direction to follow the black line on the floor. On my way to where the black line was leading me, I saw that I was going to “Ambulatory” area. I thought that perhaps there’s something serious.

Ambulatory. I was seen by a nurse and followed by a doctor. A CT scan of my brain was done afterwards. Found myself talking to neurologists. I was asked to stay in the hospital to be observed for 24 hours. I was transferred to a room in the “Acute Neurosurgery” ward. I thought I shouldn’t be there.

Ward 81. 24 hours had passed. Some examinations and tests were done. I was still feeling a great amount of weakness and instability on my hips all the way down. I was still walking like a penguin. I was still finding it difficult to swallow. This time, I couldn’t get up easily from sitting on the toilet bowl anymore. Another 24 hours had passed. The doctors were still puzzled. They were considering some nerve or muscular illnesses. I had no other medications apart from paracetamol and ibuprofen. During the two nights that I was in the hospital, my 5-month-old baby was staying with me since I was still exclusively breastfeeding him. I still thought that perhaps it was all due to exhaustion and sleep deprivation.

Third day came. The doctor allowed me to stay at home overnight. I convinced them because my toddler was crying so hard on the phone. He wanted Mommy to be home. The doctors were understanding so we agreed that I’d stay home overnight but I had to come back to the ward the next day at eight in the morning. I thought I could make it so well at home overnight.

At home. I went to the loo. I tried to stand up on my own after. I couldn’t. Husband had to lift me up. I sat on our couch. I fed our baby. I couldn’t stand up afterwards. Husband had to lift me up. We went to bed. We managed through the night. I woke up with severe pain on my hips all the way down to my feet. I tried hard to sit up from lying down. I couldn’t. Husband lifted me up. I took a shower. I couldn’t shampoo my hair so well. My arms started to feel weak and heavy when lifted up. I couldn’t comb my hair too anymore. I began to feel really, really bad about my situation. I felt so incapable. I thought about starting to think about who could replace me as the wife and the mother in case things continue to get worse.

Back to hospital. Neurologists examined me again. I cried hard in front of them. They understood how I felt. A nerve conduction test was done. Another set of blood tests. Almost an hour long of brain, neck and spine MRI. Another day had passed. Doctors wouldn’t allow me to go home after learning about how I was at home. I thought that perhaps it’s really best for me to stay in the hospital.

Another night in the hospital. My baby was still with me. He got immunised that morning after they dropped me off to hospital. He got a bit warm during the day. He was fuzzy and very clingy during the night. I didn’t get to sleep so well. I thought perhaps husband was right about already transitioning our baby to formula.

A new day or so I thought. A different team of neurologists came and said that test results were all good. I was relieved yet still wondering what could be wrong. They examined me again.  They were puzzled. They had to make me stay in the hospital for another day or two. The situation was getting more and more difficult to handle — physically, psychologically and emotionally — for me, my husband and our little ones. I thought about just giving up and convince the doctors to just let me go home and be with our boys.

Breastfeeding no more. Husband and I decided to start giving formula to our baby. Husband courageously took both boys home. He had a very rough night. I had a sleepless night thinking about our family. I thought about several different options for our family’s future.

No discharge order. I was hoping all morning that I would be discharged during the day. Doctors didn’t want me to go home. I still had severe pains overnight. I still couldn’t sit up on my own from lying position. I still couldn’t stand up from sitting on any low-levelled seat. It was still difficult to swallow. I thought perhaps I was an alien that my condition couldn’t be diagnosed by the specialists.

Alone time. I was getting more emotional. I hated my situation because I couldn’t look after my family. I couldn’t even carry our boys. They couldn’t play normally as they usually opted to stay close to me. But then I asked my husband to just go home earlier during that day. I didn’t want to be alone. I wanted to be with my boys. I wanted to be with my husband. It was our 3rd wedding anniversary. But what I wanted the most was for them to enjoy that beautiful day. It’s summer here and the weather was awesome. I thought they’d go home if I appeared to be so irritable and so did I then they went home.

Still a child. I felt I had to talk to someone who’s very close to me. I called Papa. I cried hard. I told him about my worries. I cried and cried until I felt somewhat relieved. I was OK after. I thought that I just had an explosion of emotions.

New team of neurologists. Another exhausting night for the family back home. Another painful night for me in the hospital. A new team of three neurologists came and examined me. I told them I was feeling stronger and that I’d love to be home soon. The senior doctor said it seemed like they wouldn’t allow to leave the hospital yet. That was the first time that a doctor appeared to be sure about what could’ve been happening to me. I thought that sounded like a sophisticated condition.

GBS. Guillain Barré Syndrome was the condition that the doctor explained to me. It was actually the impression of the first doctor who saw me in the emergency department. During the visit of the team the next day, the senior doctor said that he was very confident that it’s GBS. I couldn’t describe how I felt. I felt relieved that they finally had a diagnosis. I had billions of questions in my mind. I was so worried, most especially about my boys. I thought, “So what’s next?”

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