Fibro Warrior of the Week (#18)
FWOTW: Dan Neuffer
Location: Gold Coast, Australia
Facebook: CFSUnravelled Facebook
Mantra: Treat the Cause, Not Just the Consequences. Recovery may not always be easy, but it is definitely possible! So educate yourself and follow through and rejoice in every improvement in your health.
Dan Neuffer is our 18th Fibro Warrior of the Week. This week’s interview poses some new questions, as Dan has recovered from both CFS and Fibro. Now he works tirelessly to educate people about recovery and never misses the opportunity to enjoy a good BBQ…—FD
FD: Tell us a bit about yourself – Where were you born, where do you live now, family, interests, etc.
Dan: I was born and live in Australia, although I grew up in Germany, hence the accent. My family and I now live on the Gold Coast in Australia, where we are lucky to have a very nice climate. I have always been a very active person, enjoying the outdoors like going to the beach and walking in the rainforest as well as sports. Obviously all those fun activities became severely restricted during my 6-7 years of being sick, so I appreciate them all the more now!
Professionally, I was trained as a scientist and worked in the field of laser physics and optoelectronics before making a career change into the financial services industry, so number crunching has always been part of what I do. Now I also spend a lot of my time helping people with Fibromyalgia and Chronic Fatigue Syndrome or Myalgic Encephalomyelitis. My main efforts to help people in large numbers have been to write CFS Unravelled and creating the free 40 minute video explanation.
FD: When did you first suspect that something wasn’t right? What happened?
Dan: Well, I actually mention it in one of my videos, it was during a lunch time walk when I got severely fatigued. It was strange because I couldn’t understand how it was possible that I just couldn’t’ walk anymore – really quite confusing. It then happened again a few days later and then all the other symptoms began. But whilst it was nothing like I ever felt before, it was only over time that I started to fear that I have something unusual that wasn’t just going to go away.
FD: When were you diagnosed with ME/CFS or Fibromyalgia?
Dan: It was actually a few years into my illness. I think most doctors weren’t really familiar with Fibro/ME/CFS then, or just reluctant to make diagnoses. For years I went to many doctors who basically just tested me for everything and then in the end, they of reached a point where they didn’t know what was wrong but didn’t mention CFS/ME/Fibro, although in hindsight it was obvious given my symptoms!
It was only in my 4th year when I finally met a doctor who had experience with this illness that I found out about having ME/CFS. This was also roughly when my fibromyalgia pain was starting to take hold and became difficult to manage.
Shortly after I started my research I found another doctor that specialized in treating fibromyalgia patients and whilst he didn’t cure me, he was really helpful in restoring many aspects of my health and taught me the importance of diet as part of an overall plan.
FD: When you received your diagnosis, how did it affect you?
Dan: It was a mixed feeling. Part of me was really relieved because at least I knew what I had. But I still didn’t know why or what it meant because both doctors were a bit vague and everything I read on the net basically suggested there was little hope for getting better.
But I have to say that I felt somewhat validated. For years I had seen doctors who seemed to almost roll their eyes internally at my list of symptoms, especially after testing me and finding nothing but some blood abnormalities, but none “…enough to explain the symptoms.” So seeing doctors that understood and tested for all the dysfunctions and recognized what was wrong with me was somewhat of a relief.
Also, when I went on the net and found other people who had all the weird and whacky symptoms; like the sensitivities, the brain fog and so on, I was like – “see, I am not making this stuff up!”. But then of course you read how nobody recovers and that was very deflating. It was probably my first major step towards acceptance and eventually towards giving up on recovery.
FD: How does your past struggle with Fibro/CFS affect your day to day life now in terms of goals and work?
Dan: Life has never been the same. Having had Fibro/CFS for so many years and then having recovered from it has left a profound effect on me. I think before, I was the guy who was always just focused on work and would mostly often say no to opportunities to enjoy life. Whilst part of that personality will probably always be part of me, having regained the ability to participate fully in life again has left we with a strong sense of gratitude for every day. It’s almost a flip for me, before I always felt I should be working, but now when an opportunity comes up to do something nice like a trip or excursion, I almost feel an obligation to say yes.
I think once you lose the ability to do these things, like holidays, weekend hiking, surfing or anything that seems to be fun, you really appreciate them all the more. I really never thought that I would get the opportunity ever again to take part in such activities.
FD: Did Fibro/CFS leave you with any permanent physical issues?
Dan: No, I don’t think so. Although I actually had a few problems after I recovered, which I think were indirect consequences of having been sick for so many years. I believe that because the illness also affects muscle tissue, including tiny muscles such as intercostals muscles, rehabilitation to allow safe exercise can take some time. So I had pain in my whole chest ribcage when I started running that last for quite a long time.
My deconditioning also ended up giving me some severe back problems a couple of years after my recovery, but through a lot of hard work I seem to be right on top of it now, despite having been referred to the surgeon at one stage. Otherwise, I am fine.
FD: Name something you do now that you never would have imagined doing before you recovered?
Dan: Something? Haha – how about anything or everything! For years, I was very restricted. Every aspect of my life was affected and there were so many things I couldn’t do.
Now being able to eat and drink what I want is amazing, not that I make a habit of an unhealthy lifestyle. But being able to eat lots, or nothing at all for most of a day, or cakes or pizza or fish and chips or totally gorge myself at a buffet – it was all unthinkable before. Also drinking alcohol always sent me straight over the edge during all those years I had CFS/ME/Fibro.
But in terms of activities, the list is endless. Working full-time and trying to help others with this illness has resulted in many very long work days with very little sleep. Sometimes sitting in front of the computer, 14 or more hours straight – that was impossible before (and not a got idea every for anyone!).
Exercising, running, surfing, going out hiking through rough terrain for a day and coming home to mow the lawn and have a beer over a BBQ and then wake up the next morning like a normal person – all these things were unimaginable before. I think it was probably after my 5th year of illness that I had given up on the possibility of ever doing these things again, because I never heard of anyone else doing so – I thought something was “broken” in me and there was no hope. That’s why I collect and share stories of recovery now and share them on my website.
So in summary, nearly everything I do now is something I would not have imagined doing before I recovered.
FD: What was your experience with seeking medical treatment for Fibro/CFS and did that make you decide to take charge of your treatment?
Dan: Well, it was pretty frustrating and upsetting. I felt desperate to get some help, but for years my symptoms were unexplained. Later on, when I found doctors familiar with Fibro/CFS and learned what I had, I received all kinds of treatments but whilst they kind of helped, they didn’t really get me well. Nobody actually had an answer as to WHY all these dysfunctions were happening, what was causing the illness. But my frustration didn’t make me decide to take charge of my treatment, after all, I felt like “what can I do that the doctors can’t!”.
The thing that caused a change was desperation when things got so bad that they got scary, being bedbound, unable to speak. Suddenly “living with it as best as I could” was no longer an option and so I dedicated myself to doing what felt like was impossible, which was to work out what was really going on and recover!
FD: As you know, many people including medical professionals fail to acknowledge Fibro/CFS as real diseases, so how has your advocacy work affected your relationships, friends, family, partners?
Dan: With every year that passes being recovered, I distance myself a little from that person that suffered for so many years. But I can’t help but feel angry when I hear people not acknowledging Fibro/CFS as real. Along the way, I had many doctors that seemed to glaze over or come up with ridiculous ideas of what was wrong with me, that they clearly didn’t grasp the extent and severity of my symptoms.
That is the problem with the “invisible illness”. But in reality, there are so many different tests that show dysfunction in Fibro/CFS people, that it seems crazy as suggesting that this is not a real illness. My advice to people is that if your doctor doesn’t get it, move on to someone that does.
My work with Fibro/CFS has taken up a lot of personal sacrifice, and friends have often told me to move on.Even family struggles to support me when I run into the negativity out there, which there seems to be quite a bit of in the Fibro/ME/CFS community.
FD: What is the biggest challenge you face professionally in trying to help people recover from Fibro/CFS?
Dan: Without a doubt, it is the complexity of the illness, the need for a tailored approach and people’s preconceptions.
So people often don’t get my full message, and even those that are very positive, often don’t get what I am really saying and only latch on to one aspect of my book or other material.
And others will say; “that sounds exactly like …., I tried that and it didn’t work.” Because a big part of recovery is creating a healing environment and lifestyle changes, I think many people just think this is all in the too hard basket. I understand that, because it’s hard for well people, let alone for those that are physically, mentally and emotionally diminished.
I keep hearing that “people need to be ready to take it on”.
The challenge is that there is no one fit all cure, even though I am saying we all suffer from the exact same underlying cause. The reason is because it is triggered in different ways in different people. Also, healing takes a great deal of persistence which means you have to find some faith that this will work. That isn’t easy for everyone!
Even though I was 100% convinced in my explanation when I pieced things together, I was far from 100% convinced that I would actually get well! Somehow, I just couldn’t imagine it being possible for me, not after all those years. And I think many other people feel that way as well.
FD: What inspires you to keep on fighting for others who are afflicted?
Dan: To some extent, it is remembering how I felt during my desperate and dark days. I truly believe that nobody really knows what it’s like unless they have actually had Fibro/CFS.
But what drives me the most, is the positive feedback and the progress and recoveries I hear about. Seeing the emotion in people as they get their lives back really makes me want to keep going.
FD: What advice do you have for other people who are living with Fibro/CFS?
Dan: Open your mind and recognize that success is in the details. Educate yourself, get a plan and take action and follow through until you get there. As one recovered person I interviewed recently said, “Make every choice your best choice!”
FD: Do you have a funny Fibro story you can share?
Dan: Well, there are lots of stories, but I am not sure how funny they are. Unfortunately my sense of humour didn’t return until a little while after I recovered!
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