Living with illness

POSTED BY DANNY CHOO On Sun 2015/06/21 18:51 JST in Japan

As long as we live, we will encounter illness. Some of these illnesses come and go like the common cold but some of us have to live with these illnesses for the rest of our life. And then there are some of us who are born with illnesses.

I'm not sure whether I was born with Asthma (both parents have it) but remember carrying around an inhaler as I got pretty wheezy where at one point I even had my chest pumped to get rid of some sort of fluid which accumulated in my lungs.

Just like how I started my company, my dad also started off his shoe business working from home and I remember the whole house smelling of glue which seemed to further agitate my (and his) asthma.

The illness that I wasn't born with however was Spinal Hernia which I was diagnosed with back in 2008 that put me in a wheelchair this month ><

MRI - convenient way of seeing slices of people without slicing them up

This photo was taken back in January 2008 after I had an MRI to see what was the cause of pain that I had in my lower back and legs - the verdict was that I had Spinal Hernia (lumbar herniated disc).
A few discs in my lower back region had ruptured and were sticking into the nerves which extend from the spinal cord. This caused the pain which ran down my legs and occasionally rendered the whole of my arm numb too. I had the first symptoms starting in 2006 but each time the pain would recede only to come back several months later.

My MRI scans showed that most of the discs are dark in color where they should be white. As the discs wear down, the spinal cord starts to get affected which causes pain where in some cases it leads to the inability to walk.

I was devastated when I was diagnosed with the illness and remember being scared and depressed about the prospect of not being able to walk one day. But then after brooding about it for quite a while, I made the decision to just keep living, working and playing as hard as I could until I maybe eventually did up in a wheelchair.

I decided that If I've only got a certain amount of time left to walk then I'd rather enjoy it instead of waste it being depressed. What I didn't realize back then was that just because one can't walk, it doesn't mean that it's the end of life.

I remained optimistic through being aware that not all cases of Spinal Hernia leads to the inability to walk and many folks with the illness don't experience pain anymore after rehabilitation. My rehab however doesn't seem to work but it's not something I get depressed about anymore as I've learned to live with the pain - but sneezing hurts like hell! I guess its like sailing a boat with a damaged rudder - still afloat and still sailing.

Up until now, pain would only be caused when I walked around but I felt fine if I sat still. At the beginning of June 2015, my left leg started to ache so much that I couldn't sleep at all even when lying still. I felt a horrid throbbing through the veins of my leg which had me in tears (sob). At least they were manly tears.

Wifey took me to the hospital the following Monday - hospitals in Japan take the weekends off so if you are going to have an accident then make sure you do it on a weekday.

The receptionist sent us to the "Pain Clinic" - and just like all hospitals in Japan, because nobody referred me to the hospital, I had to pay an extra "non-referral fine" of 4000 yen. In Japan they don't call it a "fine" however and instead call it a "referral fee" to make it sound like you are not getting fined. Ah yes that makes me feel a lot better.

So much was going through my mind at the time sitting in the wheelchair - I was wondering if I could transfer my consciousness to a robot just like they did in Chappie - I really liked that movie! And I want that Chappie that Goodsmile is looking after too.

When you visit a doctor or hospital for the first time, they get you to fill in forms so that they can asses your situation while you wait. Most forms contain questions related to your condition but this question sheet left me speechless as it contained questions like the following which you would rate from "No" to "Always"...

  • I'm depressed
  • I still have the urge for hanky panky
  • I have hope for the future
  • I'm a useful human
  • Others will be better off when I'm dead

Wut?! I only answered the top one before starting to feel silly about answering the rest. I didn't ask about the questions and they didn't ask why I didn't fill it in but it did get me thinking - are these psychological questions implying that pain is just in the mind?
Lately I do find that I feel less pain when I focus on work which is why I try not to relax because when I do the pain returns - a vicious cycle as I know I need to take a break and lay down from time to time.

Aliens...

I was also given another form to fill which had what appeared to be a diagram of some sort of dead alien on it where I was supposed to highlight where I felt pain. This looked like a form that they had been using back in the 60's which was interesting because...

...this hospital had little robots on tracks in the ceiling that carried patient x-rays and blood samples from floor to floor. There were little doors that would open and close and pit stops for the robots to rest for areas where they shared the same tracks - video below.

Being my first time in a wheelchair, I started to understand the feelings of folks who have to use these to get around all the time. If I ever do get to build a company headquarters for Mirai then I will make sure it's kitted out with ramps everywhere...

...because the hospital didn't have ramp access to their restaurant. Nice Om Rice though.
It was an interesting experience because after the X-ray and blood & urine samples where taken, they asked us to go and eat food at the restaurant even though we weren't particularly hungry - I guess its another way for them to make money ><

Back at the Pain Clinic to hear the verdict which was that the last disc nearest to the bottom of the spine was kind of on its last leg - no pun intended.
The doctor offered me a Selective Nerve Root Block or simply "Block" in Japanese where they stick a needle 6cm into the spine and inject an anti-inflammatory steroid and numbing agent. This Block would have enabled me to go about my daily life for a while without pain but didn't mention how long it lasts for.

At the time, I didn't fancy having that needle stuck into my back so decided to go for the alternative - pain killers. At first I thought they didn't work as it still hurt after taking them. Then I realized that after stopping to take them that it hurt even more! I guess they do work ^^

Design is not fantastic but it works

Then I recall the time I went to a clinic where they attached some sort of electrodes on my toe for an injury unrelated to my hernia (or maybe it was related) - after 15 mins the pain was completely gone but I had to take time to go back to the clinic daily as the pain would come back. I thought that there had to be similar products for consumer use and there was.

I didnt know it at the time but this form of treatment is called Electrotherapy - specifically Transcutaneous Electrical Nerve Stimulation (TENS). A quick search brought up a few products on Amazon Japan - wasn't too sure if it was going to even work so went with the one with most reviews and chose the Omron HV-F128.

Transcutaneous Electrical Nerve Stimulation works by applying electrical stimulation via adhesive pads stuck onto the surface of the skin. The stimulation helps to block transmission of pain signals along the nerves and also promotes the release of endorphins which are the natural painkillers in the body. TENS is also said to help stimulate the circulation of blood in the affected area leading to faster recovery.

While I dont need to take the painkiller prescription that the doctor gave me - I do rely on this TENS unit to remove the pain. I still need to use it regularly though.

Folks interested in getting one can also look on Amazon.com.

Apparently athletes also use these TENS devices to remove pain so that they can get back in action.

I did many moons ago try acupuncture but that made the pain even worse.

Mirai-chan attends to my TENS treatment at work ><

When the pain struck this time round, I needed a wheelchair to get around as the furthest I could walk was 5 steps ;-;
These days I can walk for about 20 meters until the nerves start to hurt. I'm not completely sure if it's related but I see a pattern. The last time I had chronic pain was when I was working out of home - I hardly went anywhere meaning that I wasn't using my leg muscles.

Lately, I've been wanting to save as much time as possible and am always on the electric skateboard that I bought during the Summer of last year. The Yuneec E-Go gets me to work in about 7 mins where it would normally take 25 mins to walk. All I need to do is lean back and forth and before I know it I'm at work. And then I needed to lug it around from time to time. It's only 6.5 kgs but still quite heavy to lift around for somebody with hernia ;-;

What I've begun to realize is that no matter how much time I try to save, some sort of illness eventually strikes me down and renders me out of action - but is usually the result of being extreme when trying to save time. I find myself constantly working and feel like I'm "ahead of the crowd" especially when I work on public holidays as I know that most other folks are resting.

I now realize that I really need to moderate my work so that I can remain healthy as only my health will enable me to do more - and not the time I try to save by putting a load on my body. Easier said than done though.

I do from time to time think "why me" but then the answer "why not" comes back. Sometimes the answer is "because of Mirai" and I feel that the pain is worth it. But there is still so much to do to grow the Smart Doll business - balancing the business, health and family continues to be a challenge for me ;-;

Kizuna Yumeno Smart Doll helping out with assembly of the Gravity Stand

Ironically, as I can't walk for long distances (or any distance), I had to rely on the electric skateboard to get me around -_-

My wife then reminded me why Aki-san (Good Smile Company boss) gave me his road bike - for treatment of my hernia. I didn't use it at all after I got the electric skateboard due to the size and hassle of storage.

Now that we've rented another floor for a studio and shop, I went to get a rack for the bike and went for the Minoura Gravity Stand 2 which not only makes storage more convenient, I get to display my Itachari with Mirai (and our other character too) wheel covers that we will most probably sell in the near future.
Speaking of which, if you got a bike and are thinking of a Mirai cover, what is the circumference of your wheels?

I rode the road bike to work a couple of times and found that I didn't even need to use the TENS unit on those days. I hear that road bikes have been the cause of some hernia but have also been the cure for others. I'm not sure what my cure is but kinda want to avoid surgery. There are various types of options available including removal of a disc and replacing it with metal ><

A Herniated Disc (also known as a Slipped Disc) can be caused by many different things - a fall or sudden jolt to the spine can cause a crack in the disc. Constantly lifting heavy stuff is another cause too.
Many people from the age of 35 may also start to feel symptoms due to our current lifestyle. Apparently in the 1950's lower back pain problems were most common with folks who were about 56 years old - now the average starts at 35 years old and soon it is said that it could well start at 20 years old given that we now spend most of our time sitting.

These days I try to avoid lifting anything heavy but was difficult at first as I felt bad asking folks to help lift something.

Anyway thats enough about me, how about you? Any of you have the same illness or know anybody that does?
Whatever illness you may have, I think it's important to remain optimistic because optimism is probably just as important as any medication that you may be taking.

Update : It's been quite a few weeks now and the pain has not gotten any better. I've never been in constant pain for this long. I've been trying to train my brain to ignore the pain but it's been difficult when there are knifes constantly being jabbed all over my leg.
While the pain is down to tolerable levels, it's sapping my energy making it difficult to concentrate.
I know I will get through this but don't know how much longer the pain will continue ;-;
I do smile from time to time to remind the pain that it won't get the better of me.