How, what, where and why?

The beginning of the end. My story about FND. I'd witnessed major contamination within the company ( south Australia's largest landfill on 22 hundred acres.) I worked for and lived on work site location. 10 years of being a highly respected dedicated, honest HARD worker. Down the drain because we knew too much. We were now a threat. 5 people in total were slowly, brutally traumatised, bullied, harassed, tortured and forced to either resign or be laid of as redundant position. I copped most of it as I was the manager in most areas of daily operations. My job description was broad. Titled administration manager, I was the Weigh bridge operator , administrator, labourer in many areas. Wether it be picking up blown around litter from the cells, managing and logging well depths against table water depths every day, 7 days a week, cleaning the staff toilet and shower facilities, hiring staff, ensuring all safety standards were met and addressed, communicating and taking direction from EPA, loader operator to help get a job done quicker, photographer ( each day at closure, photos of the cell in operation had to be photographed to prove that coverage of clay was done and to standards for EPA, ). staff time sheet management ( checking that no fraudulent times were claimed and signing them off as correct claim), machinery logging each Sunday which involved me getting the hours from each machine ( bit like odometer) and record this information on a weekly machine hours sheet ( approximately 12 machines details to record, notify management when machine hours were up and due for servicing, fuelling generators every 12 hours that pumped table water to keep leach at a safe level from it ( this ment no going away for a weekend, longest we could leave our work/ home was 10 hours, no family vacations as one person had to be on site at all times for the generators and security, client liaison for approved dumping and requirements met. Look I could go on and on. Silly thing, I was on the go constantly with several injuries that I just pushed through and had them managed by my gp as a private patient ( not work cover, by choice) . The injuries caused sleepless nights due to pain. There wasn't a day that went by I wasn't pushing through my pain barrier and sustaining more slight injuries, these included burns from the generator pipes as to access the servicing parts, headaches from heat exhaustion, general bangs and bruises..... My poor body was slowly falling to pieces, but I switched off and kept going.

So in summary, to be put on poor work performance management, was not only a shock, but totally confusing. It wasn't until I looked back in hindsight that we realised that all these strange changes of attitude and treatment was due to " we knew too much" get rid of them. makes me sick to the stomach still. Unfortunately, I now suffer from a severe neurological disorder ( don't get this confused with a mental disorder). This disorder is caused by major physical injuries without the rest required and the trauma, mental trauma, exhaustion and bullying. My brains wiring has shut down. Like a computer overload. No chance of recovery, I have this for life. It's worse than most cases of multiple sclerosis and Parkinson's. My symptoms are like that of ms, Parkinson's, cerebral palsy and a stroke victim. I have seizures, temporary paralysis, malabsorption, severe stomach and bowel disorder, kidney disease ( pyelonephritis), migraines, comatose like shutdown for around 3 days every 2 to 3 months, give or take, autoimmune disorder ( food, dust, chemical allergies) , chronic over sensory problems ( noise, movement, and patience issues), was on watch and wait with my blood results for 18 months due to leucocytosis on the verge of lymphoma, that metastasised to all my lymph nodes throughout my body. All these things I have to live with for the rest of my life. They are not temporary illnesses or diseases, they are permanent. My life has to be in such ridiculous balance for everything I do, physically, mentally, diet, rest, exercise etc. I call it existing, not living. I'm in the so called prime of my life (45) with two gorgeous daughters and 3 grandchildren, another on the way. A part of life that I have always looked forward too. It kills me that I can't be that grandma I wanted to be.

I ended up on workcover with 7 medical approved claims ( not including my neurological disorder), in process now of adding it. However, my income was cut off after the 130 weeks or whatever it is, I was deemed fit to work. No tests, no medical examinations etc, just an administration decision. I lost everything, went bankrupt, told my then partner of 20 years to move on without me. Naturally he didn't want to, we had a magnificent relationship. Always did from the day we met. Why would I throw it away ??? Because I was no longer that person he met and could not offer him happiness from an unhappy person. You know the saying, " if you love something set it free". Well that's what my soul decided. I went my way..... Living from my car and just couch surfing. A lot of things in between, but to get to the point, we are now living together as friends as he would not give up on me. It's working fine the way it is, but still a lot of covered up sadness.

I don't do sick, never ever did. I believed I was in control of that. Not many friends know of my journey of pain and illness as I can't stand whining. It makes me feel even weaker. On the positive side, I suppose only the strong survive , endure the hard path and keep going. ( a lot of pit stops) , but get back up again.

Being such a strong dedicated honest person has not paid off for me and now when I need it the most, I have to dig deep.

6 Replies

  • I am the same age and the same thing

    happened to me it is very hard because there is not the support for us.l also have a husband of 22 year and l don't think he understands making a strain on the relationship l think sometimes it all to hard

  • Hi. I was very interested with your story as I could relate to many areas. I too am 46. I worked too hard in a very stressful job. I also had chronic pain which I ignored and kept working through. Till eventually my body shut down and I was diagnosed with Fnd. The reason I'm replying is that I have managed to fight my way through Fnd also. I think you might find it useful to watch my journey and recovery. I have put together a video to inspire people and help people with Fnd to have hope. If you register with (it's free) then search for sue's journey neurological. I really think it will help you as I too felt that there was no future. Please watch and let me know what you think. Sue

  • Hi Linday, I am very ill today but your letter touched me so I just had to try to write. I was 39 when all this began, I too have the seizures, comotose state, pain, face deformations, very restricted movement. It began after a faulty brain surgery followed by a spinal fluid leak. It was a nightmare, I was 39 with four children, two of which I home-schooled. I was very blessed with a super supportive husband who never gave up on me and still never ever complains of caring for me after 41 years of marriage. In the beginning I use to say I want my life back, it seemed to almost end overnight. That period lasted about two years till I received the proper medical care and began taking very helpful medications thanks to my husbands faithful never give up attitude of searching. That was 17 years ago. I never ask anymore where did my life go, I want my life back. I am blessed!!!! This life is what we make of it where we are and who we are. Life is always changing. For the first two years of this The malformation of my face and constant twisting of my body, seizure activity and inability to speak was more than I thought I could ever bare. But I serve a faithful God, who heard and answered my prayers. I live each day in joy no matter what my day may be, and I am as happy now or happier than before fnd. Last night I was in the hospital with blood pressure of 220/130. Unable to move anything in my right half. Unable to communicate, face completely gone on the right side, eye closed, tongue unable to move, mouth down and pulled on right. And I was at peace. Today I am very ill, pain headache, body not functioning, but I have joy. FND does not define who we are, it is a part of who we are. Who we are is making the most out of this life with whatever this life entails.

    Just a post note to this. I just lost a special friend last week. She had a rare form of MS, she had been unable to move any part of her body or eat for two years. Paralized from the nect down for 5. In a chair for 12. She radiated joy. Joy for each day to live to the best she could even though she could not eat, walk, speak or move. Always a gentle attidude and never a complaint. The Lord took her home to her new perfect body last week. I long for that new perfect body, but until then, I live to the best I can what ever my lot for HIM. God Bless, Cathy

  • Very good I enjoyed your video. I did one as well but I don't know how you search for it but my faith in God is what helped me get through things. I'm Rachel Harris on YouTube (Edinburgh). Might come up under FND Edinburgh.

  • Sorry to all the lovely people that replied. How amazing is it to see such familiar almost eery stories. I forgot about this site completely. I forget a lot of things. I really need to stay connected I think as these stories gave me amazing strength. Since writing my post, I have been formally diagnosed with malignant (or active) primary demyelination disease. Ms.... in a complex form. Most forms of ms are not known what caused it. This disease is in ms family, only difference is that multiple chronic disorders caused my brain or nervous system to overload and too become sick. I have no blood brain barrier, which means every germ I get big or small goes into my brains blood and spinal fluid . My spinal fluid also leaks like I read on some other people's posts. I am having an intrathecal pump inserted into my abdomen in August 2017 which you can't see but delivers my fentanyl and baclofen straight to my nervous system. It's initially a five day stay in hospital to get the exact dose right and then it dispenses the medications dosage from a programmed system. This is filled via a syringe to the pump every three months. If you google baclofen intrathecal pump images, you get a look at it. I'm nervous but excited to have this wonderful technology to assist my every day living. I'm in the process of moving at the moment, but I will start to be dedicated to this site as I've gained so much just today. Farewell for now and look forward to chatting again soon. Thankyou all you wonderful warriors.

  • Dear Lindy, your story is sooooo heartbreaking, to have worked so hard, I don't have the words to say about how the company you worked for, well I do but not on here. You must have a great strength of character to keep you going, AMAZING 😉, wishing you all the luck on your journey, glad you found this site, took me a long time to find, sooooo glad 😁 I did, always someone with advice, or just to listen to a really good 😊 vent. Sometimes it's all you need to know your not alone anymore. Best wishes 🤗🤗🤗🤗

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