Fibro Warrior of the Week (#9)
FWOTW: Heinrich du Plooy
Location: Durbanville, Cape Town, South Africa
Mantra: You’re here for a reason, whether you know that reason or not, & it’s always a good one, so get celebrating now. It always seems impossible until it’s done. It’s not the situation… it’s your reaction to the situation.
This week, our Fibro Warrior comes all the way from Durbanville, in Cape Town, South Africa. Not only our first South African , but our first male to hold the title! We feel honored that Heinrich agreed to do the interview, and it’s an interesting one. Bringing you these personal stories from around the world empowers us all. Sharing knowledge and finding support within the Fibro community is everything. A big thanks to Heinrich for sharing himself with all of us. -FD
FD: Tell us a bit about yourself – Where were you born, where do you live now, family, interests, etc.
Heinrich: Born in Port Shepstone, Kwazulu Natal (ZA),raised in Cape Town. Father died in plane crash when I was 12.Living Mother, and two sisters. Music has always been my passion. After graduating and further studies, I had immediately started working. After 17 years in the media industry, I have for the past three years been Radio DJ and part of management of Bok Radio, a progressive Afrikaans Radio Station in the Cape *proud*. Now also Station Manager of our new venture of which I am very proud to part of: Alternative fm (Afm). I love RADIO!!!! Absolutely passionate and grateful to be able to do what I love most. You meet the most incredible and interesting individuals. And then sadly, there is Fibro…
FD: When did you first suspect that something wasn’t right? What happened?
Heinrich: I started experiencing severe neck pain in 2011. At first I thought it might be stress or bad posture from spending too much time working in front of the computer.Or perhaps an early sport injury. But I did not make too much of it at the time. As time passed the pain became intense, spreading to my neck, shoulders, scapula, chest, middle and lower back. I had gone for pain injections, therapeutic massages, etc. By 2006 the pain had become unbearable – so much so that I landed up in hospital for tests. You name it – I have had the tests done.
Doctors concluded by saying that it must be ‘in my head’.
Thousands of Rands later and exhausting my medical aid – and still no answers. The neurologists were baffled…so was I. I had become more and more frustrated as no physician had answers. After months of intense medical tests (and now exhausting all my funds), the Doctors concluded by saying that it must be ‘in my head’. I became more frustrated and very anxious because the average working day became more and more challenging by the day. I was living with widespread pain and complete exhaustion, not even having a name for whatever it was that I had. That is the worst part; not having a name for your ‘illness’. You actually start doubting yourself and start believing the doctors the they may just be right: perhaps it is in my head.
I was actually approached through the grace of God, by a retired neurologist from the United States, now missionary who actually took the time to listen to me and what I had been experiencing. As a young Dad at the time, it become more and more difficult to do the simple things like playing ball or going for a walk with my daughter. Work became more and more challenging as my position at the time in the media required that I be able to meet deadlines. With whatever I had, the pain triggers became more severe and the were times where I had ‘attacks’ where I had to be rushed to hospital and treated for the pain and given oxygen. I had become concerned as it was now affecting my career, and my family life. The missionary listen intently and calmly and with his years of experience as a neurologist (now retired), he said to me: ‘Son, it sounds to me like you have Fibromyalgia’. My response: “Fibro WHAT?” He explained to me what it was. It was wonderful to actually put a name to my ‘illness’. I sobbed with a sense of relief!
Son, it sounds to me like you have Fibromyalgia
But this was only the beginning. I started doing intense research and had gone back to the same (one of many) neurologists who suggested that the ‘illness’ is in my head, and explained to him exactly what happened and what my symptoms were at the time. He then started looking into the matter and diagnosed me with Fibromyalgia. This was towards the end of 2007.
FD: When were you diagnosed with Fibromyalgia?
Heinrich: Late 2007.
FD: When you received your diagnosis, how did it affect you?
Heinrich: The diagnosis came after I approached my neurologist who initially could not find anything ‘wrong’ with me. It had affected me a great deal. Although at the time I could not understand what this was with such a bizarre name. It scared me but at the same time gave me a sense of relief as I could actually put a name to what I had. Now that I knew what it was I began intense research. Google, Library, etc. More and more I came across case scenarios similar to mine. That too gave me a sense of hope as there were ‘others’ like me out there.
I was scared. It had affected my entire life and those around me. There was a sense of guilt and frustration because I could not spend quality with time with my daughter. Always being tired, and ill, and in pain, and and and… it was very heartbreaking… for her… and me… It took a toll and all of us.
Knowing what I had and understanding it more and more really gave me hope. And surprisingly not many men are diagnosed with FMS in comparison to women. According to research it is more prominent in females. Then the shocking finding: ‘there is no cure’. I was devastated to say the least. The worst part was almost losing my family, and lost a lot of friends because I could not go out with them any longer, etc. I became lonely and a prisoner in this horrid situation I was in. Depression followed. I had gone through a very dark period after that. It killed me inside. I was devastated and felt completely helpless.
FD: Since then, how has your outlook on life changed?
Heinrich: As time went by, it became hard to live with it. It still is. But I have now learned to ‘manage’ it. There are still days where the pain is intense and the exhaustion creeps in. But until there is a cure (and probable cause) I will have to live with it. I am now 37. It has definitely taught me to slow down. I am and have always been a workaholic. Balance is very important. A Good diet is very important. It also helps when you have family and friends that show interest by taking a little time out there hectic schedules to look up and understand what this ‘invisible illness’ is all about. It also helps when you are surrounded by positive people who does not say to you “dude, seriously, it’s in your head”. In short I think it was my body’s way of telling me to ‘slow down and take it easy’. I do believe that childhood trauma and stress could also be a contributing factor to this.
FD: How does Fibro affect your day-to-day life?
Heinrich: I take it day by day. I have to. I cannot worry about tomorrow. Of course I have to think about tomorrow and its events, but I cannot worry and stress about it. I have to live for the now. You can only do so much. So yes, everyday is still a challenge physically. But also mentally because the pain can really drain you. Imagine having to live with pain 24/7. It is exhausting and people do not realize that.
FD: What can’t you do anymore because of Fibro?
Heinrich: I find it hard to exercise – the one thing I should be doing! I used to be very fit and athletic. I would not say there are things I can no longer do; it is more a case of limited. Like working in the garden. Simple things. Those kinds of things become physically more challenging. It can be very frustrating. I’m still young.
FD: Name something you do now that you never would have imagined happening before your diagnosis.
Heinrich: I’m still working on that one. But on a spiritual level I have been more in tune with myself – on a level of self-consciousness. You HAVE to, seeing there is not much help out there. You get to know your body and have to start ‘listening’ to it.
FD: What has been your experience with seeking medical treatment for Fibro?
Heinrich: Terrible. It is shocking that so many physicians know so little about Fibro. It is almost like they don’t care. I do not mean to generalize or insult anyone in the medical field, but it is very frustrating when there REALLY is no help out the for people with Fibro… Or at least help is very limited here in South Africa. That is the other thing: the level of consciousness and awareness is almost obsolete. You do feel isolated at times.
FD: How has Fibro affected your relationships, friends, family, partners?
Heinrich: It has been very difficult. I do have a wonderful family that has been very supportive. Relationships and friendships do become challenging when people do not understand what you have. They don’t see it. They don’t feel it. They don’t know it. I do feel that people need to be educated about Fibro. There needs to be more awareness. But overall my family and friends have been understanding and supportive.
FD: What is the biggest challenge you face living with fibro?
Heinrich: Coping with the pain on a daily basis.
FD: What inspires you to keep on fighting?
Heinrich: My 12 year old daughter… my nieces and nephews… My family. Family is everything to me. But, I also want to make a success of my career. My career is also important to me. I will beat this.
FD: What advice do you have for other people who are living with Fibro?
Heinrich: Don’t give up hope. Do not keep quiet. Educate your loved ones. Try exercise, just try. Even I battle. Surround yourself with positive people. And don’t be hard on yourself! With Fibro you are forced to get in tune with your body and get to know ‘you’ and know exactly what your body wants and needs. It’s quite an experience being able to ‘listen’ to your body. It is a new experience. Healthy foods. Smile. Live out loud! Don’t ever ever give up the fight or hope. Thank you very much for the opportunity to speak out about my Fibro experience. This is the first time.
FD: Do you have a funny Fibro story you can share?
Heinrich: Sadly, no.
Follow Heinrich on Twitter: @DuPlooyHeinrich
Powered by Facebook Comments