An Enormous Leap of Faith

Exactly two months ago, our family left the lovely place that we called home for around five years. During that day and the last weeks before that, my husband and I were so stressed out. The house that we were renting had to be renovated and the scaffolding had been built around the house a couple of weeks before we left.

The fact that the holiday season was already approaching, we had to keep whatever amount of money that we had to survive the weeks that we wouldn’t have income because my husband’s employment status is a “no work, no pay”. To be honest, we wouldn’t afford to pay the bond for a 2-bedroom house in Auckland at that time and it’s been hard to find a decent house for rent in Auckland that would be $400 per week or less. So we thought of moving out of Auckland.

We had always wanted to try living in Central Otago — Cromwell or Alexandra or even Dunedin — but the rentals would not be far from Auckland’s. So it was definitely a “No” or perhaps “Not yet!”

Since my husband’s employer allowed him to work remotely, we considered New Plymouth in Taranaki (5-6 hours drive from Auckland). I spent a week of contacting landlords and agents to schedule some house viewings on a Friday. We had a long Friday of pure road trip with house viewings in between with our two young boys (who were so good and cooperative during our whole travel). We found a house in Inglewood (several minutes away from New Plymouth). We liked the house. It was for only $250 per week. The town centre was just two blocks away. The Playcentre was on the next street. The people seemed to be nice. However, we didn’t hear back from the agent on the day that she promised to call us.

We were rushing to move out because we were concerned about the safety of our young boys and it’s summer so it was the time of the year when we could spend more time outside.

So at night after the day that the agent was expected to call us, my husband and I discussed about considering Timaru (in South Canterbury, South Island of NZ). It was already past midnight and we were still looking through the listings of houses for rent and computing for the moving expenses.

Next day, I found myself talking to some agents in Timaru. None of them would accept our application because they wanted us to view the house first. Yes, we were decided to apply for tenancy without seeing the house that we would be renting. We were that desperate!

Then my husband and I came across a listing for a short-term tenancy because that beautiful 3-bedroom house was already in the market waiting to be sold. I called the agent. I explained about our situation. She was very kind. She asked me if I was sure to apply for a house without even viewing it first. She told me she’d speak to the landlord and would get back to me perhaps in the afternoon or the following day. Less than an hour later, she called me back. She said we could apply for the tenancy. In the next few hours, we had an email with the tenancy agreement that we should sign!

That night, my husband and I continued planning for our next steps. We purchased tickets for the ferry. We discussed about having a garage sale on weekend. We planned to sell almost everything because it would cost us almost $4000-$5000 if we would take everything with us. We ended up giving and donating heaps of stuff and even putting heaps in the bin because they weren’t sold. I was worried and I was exhausted. But then, I thought that it would mean that we could have a fresh start in Timaru and organising the house would be so much easier.

The next day, I received a message from the agent in Inglewood (Taranaki) saying that she was about to prepare our tenancy agreement. Come on! My husband and I were already having some anxiety attacks while waiting for her call. No, we wouldn’t trade our chance to experience living in South Island!

Oh well, the truth is that we had never been here in Timaru before we moved here! Moreover, we didn’t know anyone here in Timaru. So yes, it was an ENORMOUS LEAP OF FAITH!!! Or you might want to call us crazy???

It’s almost two months now since we arrived. Do we like Timaru? WE LOVE IT!!! On Friday, we are moving again!!! It’s still in Timaru and the house is for a long-term tenancy this time. This house that has given us shelter was sold a week after we found a new house.

It’s only been two months yet we have been blessed with very wonderful people from our neighbourhood, from Playcentre, from our nature-based outdoor playgroup and of course from the church. My son has already been settling in well, happy and loved at kindy. My husband and I have been starting to have our own groups of very supportive church people. It feels like we are indeed meant to live here in Timaru.

When we fully allow our fate to be led by our full trust and faith in God’s Will and faithfulness, we open our lives to surprising blessings that have been in store for us. We may feel that we’ve still got some unbearable burdens but the joy and peace in our hearts are overflowing. That’s because we have given God the freedom to fully work in our lives in His mysterious ways.

So when you find a huge gap between now and the future, be brave to take that enormous leap of faith and you might also find yourself in your own heaven here on earth.

Caroline Bay, Timaru, New Zealand

Warning: Long Article! But this might help you or someone…

Each time someone hears about the journey that I’ve had since the beginning of this year, I am being told that I should write about it. A few of those people told me that I should write about it because a doctor who could be interested in my case might read it. Others would say that I should write about it because it could be very inpiring for those who are suffering from similar conditions. So yes, I am writing about it now because it might help someone (including myself) in one way or another. I am writing about it because I desire to give hope to others.

So this article is about how I think I have seemed to recover from “whatever it was that happened to me”. Yes, “whatever it was that happened to me” because there is still no final diagnosis up until now. At first, they thought I had Guillaine-Barré Syndrome but when they found out that the acetylcholine level in my blood was so high, they thought it could be Myasthenia Gravis; however, the other test results could not prove it. For a more detailed story about what happened to me at first, you might want to read this: The Longest Eight Days of My Life.

As every cloud has a silver lining and as there is usually a colourful rainbow after the rain, there is always hope and God is always with us whom we should hold on to during the storms in our lives.

Almost eleven months later, I have seemed to be back to my normal self. I can move around without a walker or a walking stick. I can do most of the household chores. I can take my two wee ones on bus, train and/or ferry rides. We can attend the Playcentre sessions again after a couple of terms off. So what could have helped me?

First, I want to make it clear that I am not sure if I have completely recovered now or if I have been free from any of those dreaded conditions because I have still been experiencing pains and weaknesses almost every single day. I’m just thankful that the pains are somewhat tolerable now. So what could have helped me to somehow recover?

I cannot pinpoint a single thing as a matter of fact. It can be a combination of everything that I had to do. I had therapies. I had to drink Ensure (nutritional drink) at least twice daily. And I’ve had to manage my own energy level.

I had occupational therapy sessions for almost three months. I relearnt to get up from bed on my own, to get up from sitting position, to safely stand and walk on my own. I used a walker for almost two months then transitioned to a walking stick which I opted not to use all the time. I seldom used it for less than a month. I relearnt to independently look after my personal needs — from having someone to assist me in the shower and in toileting for almost two months to being able to be safe in the shower on my own, from not being able to comb my hair to being able to actually cut it, from not being able to change clothes on my own to being able to do everything for myself all by myself. I was helped to be able to do the household chores again — we started from folding the clean clothes to hanging the washed clothes to washing the dishes to cooking until I can do almost everything in the house again. And of course, I was helped to be able to look after my children again and that was at the very top of the priorities and goals that we listed during our first session.

I had physiotherapy sessions at least twice weekly for almost three months. It helped in strengthening my body — from the core to my arms and legs to my fingers and toes. My physiotherapist was the one who took me out for walks — started from five metres to a hundred metres then uphills and downhills then up and down the stairs. Each session was exhausting but it was worth it. There were sessions when we had to stop because of severe pains on my legs and arms. I had special sessions once a week to strengthen my arms and fingers which helped me to be able to write again.

I had speech and language therapy which helped me in swallowing and in being able to easily produce the sounds of some letters.

I had some psychotherapy sessions, as well. It was actually a big help to me. While everybody had seemed to see me as being happy and still well-composed in the midst of everything that happened, I opted to see a psychiatrist because I felt that I was already falling apart inside. I reached the point when my psychiatrist asked me to talk to our GP about taking some antidepressants; thankfully, I didn’t have to. Our GP and my neurologists said I didn’t have to take antidepressants because the level of my depression and anxiety were all relatively normal for someone who’s been challenged in health. They told me that I just have to talk about how I feel and what I think. If you’ve reached reading up to this point and you have been suffering from any illnesses or challenges in life, don’t hesitate to see a psychiatrist. Don’t be ashamed of doing something that can actually help you.

I also had to see a dietitian who set the goal for me to at least slightly reach my usual weight again within a month. My usual weight was 45kg. It went down to 41kg. I never lost appetite but yes, I still lost a huge amount of weight. I’ve had my own theory: since I experienced weakness in my muscles, my stomach muscles could have been weakened too so the food that I was taking in might not have been being digested properly. As I mentioned earlier, I had to drink ensure at least twice daily. It actually helped! Was I able to reach the goal? Fail! I went up to 43kg though. However, I am around 45kg now. Cheers to my body for doing a great job these days.

Yes, I had to go through a lot. And one important thing that all my therapists advised me is to be mindful of my strength and energy level — meaning not to push myself too hard. This is actually the most difficult thing to do. The problem with me is that I have the tendency to do everything that I plan to do all at once and I guess that was what brought me to such ordeal. I abuse myself. I don’t listen to my body. I just wanted to get things done because it gives me a sense of my self-worth and I hate to be criticised (by my husband). A month after I gave birth to our second child, I was already washing our clothes. Around three or four months after I gave birth, I decided to rearrange our house — I pushed huge cabinets around, I transferred huge cabinets from one room to another. I was vacuuming the house, etc. And I did all of those while breastfeeding my baby in between, looking after my two boys, playing with them, attending Playcentre sessions and completing my assessments in the course that I was trying to finish. Yes, I have grown into the kind of person who ignores my body to be able to do what I had planned to.

Indeed, life has its own way to teach us the important lessons in life!

Anyway, perhaps you are wondering if I have taken any medications. Only paracetamol and ibuprofen for pains. There were weeks when I had to regularly take them because my headaches and the pains on my back, legs and arms weren’t going away. Well, even if I was taking those medicines, the pains wouldn’t still go away most of the time. I had to take something for heartburn and acid reflux for a month. Other than those medications, nothing at all that was specific to any kind of illness. My neurologists almost gave me mestinon or prednisone, a couple of medications for Myasthenia Gravis; however, thankfully again, they hesitated and asked me to try to keep going without them because they didn’t want me to take them since I would have to take other medications for the possible side effects of those medicines. Also, they had seen that I was improving with all the therapies and nutritional adjustments that I was doing.

In fairness to my neurologists, I love how they have handled my case. I am aware how they have been thoroughly studying my case. There was even a time when someone from the team of neurologists that looked after me mentioned that a number of senior neurologists had a meeting to discuss what could have been happening to me.

It has been a long journey for me (this article too, eh?!) and our family. I’m not sure what the final diagnosis is going to be or if they will ever get to a conclusion. The thing is that if they can’t identify my symptoms and their findings with any other known illnesses or conditions, they might not be able to have a final diagnosis. But the truth is that I am not sure if I still want them to be able to diagnose me with a certain illness or condition since I have already been better nowadays. I am only praying that nothing similar to what happened months ago will happen to me again.

So if you are still reading this and if you are in a somewhat similar situation as mine, do every possible thing that you can to help yourself. Don’t depend too much on the diagnosis. Don’t just stick to the options of being treated with medicines. Medications can help but every medicine has its side effects too.

Also, keep going even if you feel like you are blinded or like you are in a dark tunnel. Most importantly, trust in God. Hold on to Him. After all, He gave this life to us and life has to be lived no matter what the situation is — not always easy though. And…

As every cloud has a silver lining and as there is usually a colourful rainbow after the rain, there is always hope and God is always with us whom we should hold on to during the storms in our lives.

My Faith and God’s Faithfulness

When I think about God, I see myself as if I am forever a child.

I have been asked several times already how I have been able to still smile and to stay happy after everything that has happened in my life. I have been praised many times for being a brave and strong person, for being a woman of God and for having a strong faith in God.

The truth is that I am not always brave and strong. I get scared and anxious many times. I may be smiling but I am not always happy when I smile. I also feel sad and I also get depressed.

The truth is that I also lose my faith in God from time to time. I question Him. I complain to Him. I argue with Him. Sometimes, I just want to give up and that if I can stop myself from breathing, I would.

But then, I always feel that God have never given up nor will he ever give up on me. I feel like He has always remained and will always stay faithful to me.

If anyone will ask me how I can say or prove that God is faithful to me, I don’t know but I strongly feel it deep inside.

What has happened to me these past few months was not the only time when I felt like life and the world have been conspiring to force me to simply give up. I have been through family crises, death of a loved one, dangers, failures, heartbreaks, illnesses and people’s harsh judgments — you know, those moments in life when I could just let my spirit be crushed into billions of bits and pieces.

Yes, there were thousands of times when I was already on the edge and I was too certain and prepared to jump off the cliff.

And then, instead of falling, it felt like I would just be floating until my feet would land on a better ground. It would always feel like I am being saved. Or better yet, I am presented with a great amount of hope… as if I am being told that there are still more beautiful days and years ahead of me.

So what has happened to me these past few months has just been another chapter in my life where God has shown me his love and faithfulness.

After all these months when I was losing hope and I was scared of not being able to look after my sons again, I am back to being the mom that I planned to be although my younger boy has still been spending days in the childcare centre.

Today, I have been discharged from physiotherapy. Next week might mark my final occupational therapy session. Although there are still tests to be done and even if I would still need to be seen by a dietitian and the neurologists, I feel really glad now that I can do almost everything that I used to do.

Indeed, God has always been faithful to me.

In my moments of fear
Through every pain Every tear
There’s a God who’s been faithful to me
When my strength was all gone
When my heart had no song
Still in love, He’s proved faithful to me.
Every word He’s promised is true
What I thought was impossible I see my God do

He’s been faithful, Faithful to me
Looking back, His love and mercy I see.
Though in my heart I have questioned, even failed to believe He’s been faithful, faithful to me.

(He’s Been Faithful by Brooklyn Tabernacle Choir)

How Am I?

When I am asked “How are you?” nowadays, I honestly don’t know how I should answer that question.

How am I in terms of my health? Hmmm… I can say that I am so much better and stronger now as compared to how I was in January and February.

How am I? How do I feel nowadays? I can say that I can still find reasons to be happy, most especially when my sons are around. But there is one thing that I should be honest about.

I’ve been anxious and sometimes depressed.

Who wouldn’t be anxious when more than three months have already passed yet my condition isn’t clear until now? Who wouldn’t be anxious when I’ve seen worse result of a repeat blood test yet I’m still waiting for my turn on a test that might most likely confirm my condition? Who wouldn’t be anxious when I was supposed to undergo a test yet I received a call hours before informing me that the machine broke down and that the test would be moved a month after?

Who wouldn’t be anxious now that I learnt that the AChR level in my bloodstream had doubled up in just a matter of two months? (Here’s What is AChR?) The first AChR blood test done returned a 2.4 units result and the repeat test returned a 4.8 units result. Acceptable level is less than 0.4 units. This was the blood test result that made my neurologists think that I have Myasthenia Gravis instead of Guillain-Barré Syndrome. (Here’s What’s Myasthenia Gravis?)

Yes, with the help of all the therapies that I’ve been going through, I have been better and stronger nowadays yet there have been days when I would feel all the initial symptoms back once I get tired.

Yes, I have graduated from using a walking frame but I still need to use a walking stick and I have been prescribed with a pair of distance eyeglasses. And I am still not allowed to be out and about without an adult companion. How many 35-year-olds have been required to walk with a stick and eyeglasses and required to have an adult companion? I am still thankful for the progress that I have made in the past few weeks though. But, honestly, it is hard!

Required when I’m out and about plus an adult companion

Who wouldn’t be depressed when you have two young adorable boys yet you cannot run around a park with them? Who wouldn’t be depressed when you would want to take them to swimming yet you can’t because no one can give you an assurance that you can be safe when you go for a swim?

Who wouldn’t be depressed when you’re thirty-five yet you have to depend on other adults around you? Who wouldn’t be depressed when you want to believe that you’ve been recovering well yet many people treat you and look at you like you are a very fragile item?

Who wouldn’t be depressed when all you want to do every single day is to just do all the things that you would normally do yet you have to undergo physiotherapy, occupational therapy plus talk therapy (psychotherapy) almost every day then you have to be checked by a dietician and speech & language therapist every now and then? That’s exhausting yet I am still grateful that I am being looked after very well by this awesome rehab team.

All these things plus some issues on the sidetrack have made me feel anxious and depressed yet I am still so thankful for all the help and blessings that I have been receiving.

So how am I nowadays? I am not really OK yet I am still fighting and trying to look fine. And I’m still looking forward for what is beyond all these challenges. After all, life must go on!

 

The Labyrinth in My Mind

I’ve been wanting to write since after my appointment with my doctors earlier today. There’s so much that I would like to write. But I don’t know how to start. I don’t know exactly what to write about.

 

Should I write about exactly what the doctors discussed with me? Should I write about the special blood test result that they already received from UK and Australia?

 

Should I write about my single-fibre EMG and Nerve Conduction tests that were done earlier? About how it felt to have a needle inserted into my muscles and being moved around my muscles with those tingling electric shocks?

 

Should I write about acetylcholine? And what should I write about acetylcholine? Its formula or IUPAC name or molar mass or its chemical structure that I learnt from Organic Chemistry and Biochemistry classes back in Uni? Or should I write about how it was discussed by my doctors today?

 

Should I write about Myasthenia Gravis? What about that? About how it can present itself as Guillain-Barré Syndrome? About the medicines that I might need to take, which I hope I wouldn’t have to because once I take such then there’s another medicine to take to prevent the side effects of the main medicine?

 

Should I write about me having to wait for another set of days until the other special blood test results arrive from UK? Or about the scan that should be done on my thymus gland and why it should be done?

 

If someone dares to get into and to explore inside my mind now, he or she might feel how it is to be in a labyrinth.

 

Just when I thought that I have been recovering big time from Guillain-Barré Syndrome, the doctors discussed with me what my condition has been most likely instead of GBS.  And as if GBS was neither rare nor complex enough, the doctors consider that my condition is the rarer and more complex one. The truth is that even if I’ve never wanted to have GBS, I’d rather have it than MG.

 

Looking at the bright side, at least my doctors don’t simply make me take any medications unless all symptoms and test results perfectly match one another. And this whole thing has made me witness the real life “Grey’s Anatomy” (Neurology edition).

 

I’m still hoping and praying for the best.