"LIVING IN PAIN"

A great friend once told me that I should write a Blog about my Life's struggle and Pain.

 I'm not a great writer and hesitated for a while, but eventually started. . . . . . and for some reason at one point, I felt like a fool writing about it and asked my self: "who will read this and who cares anyway?"  But I had over a thousand readers at that time, and I just deleted it all. Now that I found Steemit, I feel like kicking myself for doing it, as I could have shared it here!

So this will be my second attempt.

I Grew up in South Africa and started my own business at the age of 19. And for 15 years I designed and manufactured Furniture, Balustrades, Staircases and also did Shop-fitting. It was my Life and I enjoyed every single day of it. I even did the physical work and worked along my staff in the workshop each day. It was my dream and my future looked great. It felt like i had achieved my goal, and at the same time I felt Free. 

My life changed 6 and half years ago like a Storm that came over the horizon. It all started with lower back pain. At first i didn't make much of it and thought it was only "wear and tear" due to the hard work. I had the occasional cortisone shot and some pain killers that took the pain away and I was good for a while. 

I used to work from 6 am in the mornings to late at nights, as I still had to do Quotes, Designs and all the paperwork after hours or early mornings. So I worked a minimum of 12 hours per day. I was so driven and motivated that i didn't need much sleep. I ate once a day, at night when I got home, and that was enough to fuel me for the entire next day. I never took time for brakes in the afternoon, as my mind kept on working and I kept on pushing. 

This is me, and my little girl Gina at the time.

                                                This is my wife Sandra and me.

This was a great moment in my life. I just expanded the business and moved to a bigger premises as things went well and business was picking up and I got bigger projects and needed more space. 

Just to share some pictures of the works I did and feeling proud of what I accomplished as some tasks were real brain pickers and the expectations from clients were into the finest details. 

This was my workshop were I operated from in Cape Town, South Africa.

Some of my greatest projects were Staircases. Big and bulky, and they will stand for a hundred years or more, and knowing that thousands of people walk on them on a daily basis. It sure gave me a great feeling. Below are a few examples of the works. 

We did both wood work and steel work. This stair weight about 4 Tons, and was fully built in my workshop. We then had to strip, cut it in sections, and put it all back together on site in one of Cape Towns shopping center called The Cape Quarters. On the top of the stairs were some off my staff after it was completed.

This was done for the same shopping center. We did both the laminating of timber treads and steel work. Below how we did the treads.

This was another great project where the stairs were covered with solid American Oak. We did two identical stairs.

Gates made from stainless steel with woven copper strips. 

Entrance gate done same way.

Here we did a 180 m or yards of stainless steel balustrade with stainless rope and teak handrails.

Here we did a expo stand for a winery company in Stellenbosh - Capetown at the civic convention center.

                                              But as they say:" All good things come to an END".

My life changed so fast , the pains got worse in my back, and i started to work less hours per day. Feeling more exhausted and the cortisone injections didn't help much anymore either. I would wake up in the mornings, feeling all stiff, and my back was killing me. Waking up at least 3-4 times a night due to the pain. I started to have difficulty just getting up the stairs. And going down the stairs was worse, I started falling down the stairs. I lost my balance. Below a picture off where i fell and cut my back open because off losing my balance. 

In the mornings my hands were all stiff and frozen. I could hardly move a finger. And this all came at an alarming speed. It felt like I was walking like a Duck. I had vertigo issues, and felt uncomfortable standing on a step ladder. My head start spinning and I was all dizzy. I couldn't even pick up my 3 year old daughter anymore. 

Something was wrong! It was as if my life suddenly started fading away. I was 34 years at the time. I felt like an old man who had his years and lived his life. Not long after, my doctor started me on morphine for the pain. It was an instant 360° turn around. All the pain was gone for about 6 hours. I had such an energy boost and felt like I could take on the world again. 

Problem solved I thought. At least for the moment. I knew that, but i kept on working like a demon. Not realizing at first that I was getting weaker and weaker, as I didn't feel it because off the morphine. It got so bad that that my body was so exhausted that I fell asleep in the chair were I sat in while eating my dinner. From 12 hours working a day, it went to 3 hours a day. I lost at about 25 kg or 55 pounds. My pants were 3-4 sizes to big by now. 

I saw an advert on TV about Multiple sclerosis, and it was a full description of what i went through. It was as if this advert was meant for me, because I have never seen or heard about this disease before. I had about 16 of the symptoms found in Multiple Sclerosis. I was almost certain it was that. I was in serious trouble and I couldn't do my work anymore. I had no medical aid, and I knew that getting a diagnosis for MS I would have to go for a NMR scan of the brain. It was way to expensive in South Africa to pay in cash. And as i got weaker, the more the business suffered from it. 

I have two nationalities as my parents were born in Belgium. My wife is also from Belgium and I met her a few years back when I went on a trip overseas to Belgium in 2005. I stayed there for 2 years then. We got married and moved back to South Africa where I continued with the business. So in Belgium I had a medical aid, and I was left with 1 choice only. I had to go back to Belgium and get medical help there. This meant, I had to close my business.

My dream faded so fast, everything I worked for, everything I built from the ground up since I was 19, came to a full STOP. I closed the business. Sold everything we owned on a auction as time was ticking, and I needed urgent medical care. Now we couldn't think materialistic anymore and had to swallow our pride, and part with who and what I was in South Africa. 

We left with only our luggage and took a one way flight to Belgium. I think my heart was left behind in South Africa. The place I loved, the beautiful nature, the blue sea, the warm climate, the long summers, my home. 

So we arrived at Belgium airport, and as we went to collect our luggage, we found one of our traveling bags were ripped wide open and all our personal goods, clothes, and some memorabilia we took with were either missing or wide spread over the conveyor belt bringing out the luggage. Lots of goods were missing. And so we spent hours at the airport filling out complaints, and claims etc. Could it get any worse than this.

The first few days we had to register our self's everywhere in Belgium again. Get our status back in Belgium as citizens and so on. On the second or third day we made an appointment with the doctors already and we put things in action. Going to a neurologist and having the brain scan done. First Results were as expected. I had white spots on the brain that indicated demyelinating condition of the central nervous system. With this I had to go for a lumber punch or spinal tap as they call it to see if they could find anything in the spinal and brain fluids. So they did. I had signs of an auto-immune disorder and inflammation of the brain and spinal fluids. Seen in the picture below. As clear as water. 

The picture below was from the spinal tap they did, and where the blood was seeping out my back where they did the spinal tap. I have had it done 4 times up to now.

My arms were full of bruising from all the drips and needles. This is just one arm. 

I was in so much pain, each and every day. 24 hours a day. Again i was put on morphine based pain medication (Oxycontin), but it didn't work as great as the morphine I used in South Africa. That was giving my self an injection of morphine sulfate two to three times a day in my shoulder or in the leg muscle. I was blue of all the needle injections and had to swap from shoulder to shoulder or leg to leg. 

Here in Belgium they refused to give this and the pain pills I had to take, took at least 90 minutes before it started to work. So I was in hell for 90 minutes until it kicked in. It also caused other side effects such as constipation, and for this i had to take other medication too. For inflammation they gave me something too, and because the inflammatory's were so strong, I had to take other medication that protected my stomach. So before you know it, I had a handful of pills to take daily. Something I did not need in South Africa, but here in Belgium they work differently. In the mean time, you wait, and wait, and wait.

Now I started to pick up weight as it was one of the side effects from cortisone that I also had to take. I went for so many tests, and one down side from the doctors in Belgium is that you only get 1 appointment in about 1 month. 1st consultation, 2nd month the tests, 3rd month the results with that consultation, another month for the next test, and so it went on. So it became a lengthy process. Up to date, 6 and a half years and ongoing. The doctors still weren't sure if it was Multiple sclerosis as it had not all the right signs. The neurologist  then put me on a medication called Gabapentine too. Now I really became sick. Not only pain, but really sick to the bone. When I explained to him how I felt he said I had to double the dose on Gabapentine and eventually I was on 1600 mg per day....

I had to rent a hospital bed and put it in our lounge as it was impossible for me to get up the stairs to our room. I spent 1 and a half years sleeping in the lounge.My feet started to swell, I could barely lift a leg to get up the stairs, and when i had to go to the toilet after being a week in constipation, I felt like giving up hope and wished my life would end.. I could no longer hold out this pain I went through. I was continuously crying out of desperation, depression and pain. I couldn't even walk further than 200 meters or yards. 

Test after test and still not getting a definite diagnoses. They kept on finding more and more problems. I had inflammation in my skull, in the back of my head. They did a full body scan and found that I had inflammation in every single joint in my body. Every area that is dark black on the picture below.  

I had a scan done on off my spine and they saw that I had dissication on every level. My discs were dehydrated and degenerated and were hugely bulging. My vertebra's were all deformed. I had to go for nerve blocking so many times where the actually burn the nerves dead running down your spine at 80°c. Per year I have 15 nerves blocked this way. 

 The scans showed that i have facet arthritis, cox arthritis, arthritis on my shoulders, hands, arthritis on my hip joints, feet, knees, everywhere.  It was like a story that didn't fit the picture of  who I was a few months back. How was this possible I asked myself. I was told I have a body of a 80 year old person. By know I looked like this picture below.

I was finally admitted to hospital and was told I had a "burnout" too. The neurologist then said I had Fybromyalgia too. Given my explanation how I felt daily. As every morning it felt like the worst flue hit me. Every single part of your body is so painful, and I'm sure you know the feeling were you rub your hand over your head and it feels like your hair actually hurts? It was a living hell. 

In 2015 I was admitted 15 times in hospital and went on many different treatments. I have gone through so many tests, and up to this day, they still have not found an exact diagnose of whats going on with me. I decided to cut down on the Gabapentine medication, and started to feel a difference and realized that the neurologist put me on the wrong medication, making me more sicker than what I was. I am now no longer on it and it made a huge difference. 

I changed to another neurologist who was far better than the one I had before, and he even referred me to a Neurologist Professor at the University clinic. January this year the professor started with all the tests over again, and is now my 3rd time the tests were redone from the start, and we are still searching as I write this down. Thanks to the professor, and a treatment of three months on a different medication, daily cortisone and steroid to boost the immune system, I know no longer feel so sick, but the PAIN is still here 24 hours a day. This is something they still haven't figured out yet after 6 and a half years of searching. Numerous blood tests have been done, and they still find inflammation in my blood and system. Something that doesn't want to go away. Still awaiting more test results for next month.

Having to live with no income is like the worst that can happen, but I'm sure some would now. Scratching your last pennies together at end of each month, and slimming on what one eats. For 4 years with no back up, no income other than what my wife earns now is our only boat that floats. I'm very grateful for having such an amazing wife who stands by my side through thick and thin. We need to believe that there is a purpose for everything in life. Staying positive is the key that drives me. And I hope that there will be a change in my life, now that I have found and joined Steemit. My mind will be "Steaming" with ideas to share with you all. 

                                                                                    At least I can smile again.

This is a picture taken in July 2016. 

I thank you for reading this.