Tag Archives: GBS

An Opportunity To Help

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32-year-old mom in the Philippines who got paralysed for FOUR years now

I am writing this blog with hope that this can find a way to help another mom who has been suffering with somewhat similar illness like mine for four years now. She’s now 32 years old with one daughter who’s almost 7 years old now. I met her only last night when she sent a message to me after reading my blog. She’s the wife of a grade school classmate of mine.

Screenshots of her messages telling me what happened to her

Her suffering started before dawn on 2nd of March 2013. She said that it all started with severe pain on the left part of her back and she couldn’t breathe easily. They waited for sunrise before they dropped their then 2-year-and-8-month-old daughter to their mom’s house on their way to hospital. While she was preparing, her left arm got numb. As they approached the hospital, she felt that she was losing her balance and when it was time to hop off from the jeepney, she couldn’t lift herself up anymore so her husband had to carry her already.

They spent the whole day in the emergency waiting for an available room. When she was finally in the room that night, she reached  the point of full paralysis. It was only her head that she could move. She was in the hospital for two weeks where several tests were done and every test result was normal. The doctor told her that what she got was “transverse myelitis”. (I don’t know what it is but by the sound of myelitis, it could be an inflammation of the myelin sheath…oh, I’m not a doctor!) She was told that there’s NO cure and therapies should be done so she can possibly recover.

Apparently, they have been financially incapable of paying for the therapies since her husband had to leave work as he’s the one looking after her. Her husband needs to carry her until now as she is still not able to stand up.

What a heartbreaking story!

I hate to say this but her story has made me feel how lucky I still have been despite my current condition. I feel sorry for her that her condition was that severe. I feel sorry for her because she lives in a place where medical benefits are not as good and enough as I’ve been receiving here. I believe that if only she was able to continue undergoing the necessary therapies, she might’ve recovered — if not fully, at least she might’ve been able to stand up or even walk.

If you’re reading this and if you think of any possible way that we could help her, please comment below. She said that her illness has made her and her family’s world to crumble down. So if there’s any way that we could be of help, let us help to rebuild their world.

With her very caring and loving husband who was my classmate in grade school

To you, my new friend, please hang in there and know that you’re not alone. Sending my prayers to you… and let us both hope for the best!

This Thing I Call The Alternative Motherhood

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Me and my 6-month-old love ❤❤❤

Motherhood itself can already bring heaps of different kinds and levels of struggles. Being physically weak because of my health condition now has brought me to a whole new level of motherhood — both positively and negatively.

Sometimes, I feel like I am completely useless. Many a time, I feel so helpless. Most of the time, I feel guilty not only because I can’t be of any help but because my moods have become so terrible and my patience is all gone.

But then I realised that I need to find alternative ways so that I can still do the things that I used to do for my two very young boys.

Recently, I discovered that I can still let them sit on my tummy while I’m lying down so I can play with them.

How I play with my two loves ❤❤❤

Sometimes, doing crazy and funny things with them can make all of us happy. Yes, I don’t need to use physical strength all the time to have fun with them.

Me and my 2.5-year-old love ❤❤❤

And it’s been two days now since I’ve been able to comfort our teething baby and to put him to sleep by simply touching and massaging him while we lie down on our bed.

The things that I do now as a mother are not the same things that I had normally done before I got this weak. The things that I do now are the things that I can do with the daily new normal me. And this is what I call an alternative motherhood.

Why I Created A Give-A-Little Page

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Our “I Have Guillain-Barré Syndrome. Help Me Help My Husband.” Give-a-Little page

First of all, I would like to thank all of you who have helped and supported me and my family in so many different ways — your prayers above all, your time and effort that you’ve shared with us to make our lives less chaotic, all your blessings that you’ve shared with us. From the deepest part of my whole being, thank you very, very much!

Making a crowdfunding page like this was never easy for me. The truth is that asking for any kind of help has never been easy. And even accepting help that was voluntarily offered has not been easy as well because no matter how much we need help nowadays, we consider that the people around us have their own needs to look after. Most of the people who have offered help to us have their own children and families to look after too and many of them are also working.

It took me two weeks before I was able to make up my mind to make this give-a-little page. I honestly didn’t want to. I grew up believing that if I need to earn something, I have to work hard for it. I grew up believing that it is always better to give than to receive. I was worried that we might receive greater than how much we actually need; however, we don’t really know how much we actually need for the time being. Because no one knows when I can get back to my normal condition and this is the sadder part. The saddest part is that I don’t know when I will be fully capable again to look after my children the way I used to.

However, I had to do something — something to help my husband, something for my family.

To all the questioning minds, a social worker already came to us to figure out if we could get something from WINZ, etc. We even actually checked on that one even before a social worker came to us. Apparently, there’s a very, very little possibility that we can get any. It’s all about the thresholds and the ages of our little ones. And we’ve got the very urgent need at the moment. We need to put our children to a good and reliable childcare centre the soonest time possible so that my husband can already complete his 40 hours/week at work… so that we can bounce back up when it comes to our finances…moreso, so that my husband would not lose his job…and above all, so that my husband wouldn’t have to put his health at risk by working until three or four in the morning while he would have to wake up at around five or six in the morning once our baby wakes up.

It would have been so much easier if we were eligible to receive some benefits from WINZ. I would’ve not needed to expose our financial struggles during these days in public. My families, relatives and friends in the Philippines and US or wherever they are now would’ve not been too worried about us.

But there are more important and more urgent matters for me to look after than my ego and worrying about what other people believe and think of. And these are what matter to me the most: my husband, my children and my full recovery.

This Too Shall Pass

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What a beautiful sky that we had this afternoon!

 

Look at that beautiful sky! Who would’ve thought that the weather was so harsh in the last couple of days?

I believe that all our hardships and troubles will also end in no time. And everything in our lives will turn out as wonderful as this beautiful sky that amazed us today.

After all, there’s still so much to be thankful for. As I look into my heart, I’m sure that the God who loves me is just there working on all the great things that He has planned for us. And as I look around, there are too many people who love and care for me and my family.

I’m thankful that I’m here when I was diagnosed with GBS. The doctors and nurses in the hospital were excellent. The community health services have been making things easy for me. Since last week, a nurse coordinator, an occupational therapist and a social worker have already come to our house and looked into what I need in order to recover. The physiotherapist is coming on Thursday. The Plunket nurse who’s assigned to our boys have referred us to some agencies that can help us in some ways to make things a little easier for us.

I’m thankful to our families, relatives and friends who have always been offering and giving some help and support to us. Without them, our lives would’ve been too chaotic every single day.

I’m thankful to my husband’s employer who has allowed him to work from home although it is still one hell of a challenge for him. Because of my condition, it has been my husband who’s doing almost everything at home now plus he needs to assist me from time to time. So he’s only able to focus on his work from ten in the evening and he usually goes to sleep at around three in the morning. Then he needs to wake up when our baby wakes up at around six or seven in the morning.

There have been days when my husband and I don’t know anymore how we’re going to survive — physically, mentally, emotionally and financially. Our family has not been receiving the usual income that we used to have for almost a month now. We even considered just going back to Philippines but it’s not the best solution or it might even be the worst decision to make at the moment. We have been seriously considering to make a page in a crowdfunding site like give-a-little so we can at least put our boys in the childcare centre where we are most comfortable with so that my husband can work full time.

Our life now has been really hard but there’s nothing else we can do but to keep hoping that it will get better soon. Yes, just like all the other trials in the past, this too shall pass! God is with us.

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.”