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…