I had the WORST experience I have ever had with a Specialist yesterday.
Chronic Illness brings one of two Specialists:
the nurturing, and the non-nurturing.
He was definitely non-nurturing. An older male who looked at me and saw a child who was “trying to make up excuses”.
He began his belittling speech, and I said absolutely nothing because I am completely iver this rollercoaster. I am numb.
“I expect you to be back at work in five weeks”
“I just came back from a trip to Africa, and people over there would give anything to have jobs opportunities like we do”
“You need to toughen up and stop running from work”
“The longer you prolong this, the worse it will be”
“You are the reason behind your depressed feeling”
“Your symptoms will ease when you return to work”
“I will be emailing a report to your doctors in regards to you not needing a Government Payment Application”
Straight after that appointment, I had my first Government appointment to plan for my application for the Disability Payment. In the first week of July, I am booked in to meet with a Government Employed Doctor and an Employment Officer, who will decide how many hours of work I am able to do a week.
If I wish to fight this, and go on to say that I am unable to work at all, I have to present my own personal Medical Bible to them. This includes every result I’ve had since December 2014, Specialist letters, medications, bills etc
I have unfortunately gone back to my extremely small portions and liquid diet, as my stomach is being non-negotiable, so I also had an appointment with my Gastroenterologist today.
He is in between the nurturing and non-nurturing doctor. He will tell me the truth, but still cushion me a little.
Reality is, I have to return to work eventually.
I have to deal with these attrocious symptoms and go back to a job of somesort. It will definitely not be fulltime. I will never be the same, and he admitted that. He also admitted that Childcare may unfortunately not be a good career path for me, as germs may set me backwards.
The chances of me waking up one day and being my normal self, are almost impossible.
Being ill, you know this. Somewhere deep down in your gut, you really know this, but do not want to accept it. I didn’t, until he said it today.
I listened to every word he said. He even spoke about the non-nurturing specialist and said that the older generation are less understanding when it comes to “invisible illness” and things like anxiety and depression. He feared that this doctor’s letter, would influence my other doctors into not helping me fight for a payment. But, he agreed that we (he and I) will fight for a three month payment, and if it is granted, we will review my case in three months in hope that I can return to work by then. But first, the Government have to say yes.
In the next two weeks, I have my final tests for intolerances to Fructose and Lactose.
I keep taking the digestive medication and hope that it works.
If I am unwell in three months, we push it to another three months. But by January next year, I should be at work.
This is a postviral condition that is nameless. I got very sick due to bouts of viruses during 2014, including two rounds of Shingles. My body could not cope. The virus attacked my digestive system, giving me the diagnosis of Gastroparesis. My nerves were attacked, giving me chronic neck pain. I am fatigued, which is pointing to a diagnosis of Chronic Fatigue Syndrome. The virus itself is gone, but has left an aftermath of damage.
It’s all about management now, and getting me back to work. There are no tests to be done, nor any medications to try. I must manage this, and put all of my energy into doing so.
I had a cry afterwards.
I wish I had a proper diagnosis, medication that cured me, and no symptoms.
I wish I could return to work in health.
I feel pressured now to get better, and go back.
But that is terrifying. What if I can’t? What if I am unable to work? I will not receive a payment. I will not have the money to pay for medication or appointments.
It has already been seven months. We are struggling to manage this. What if in six months, we are in the same place?
I am mentally and physically exhausted.
So, I will try and focus my time on pushing my body. I will do the Five Week Balance Exercises I have been given, and I will keep trying the stomach medication. I will continue to see my Acupuncturist and Osteo, and I will continue my liquid diet and try to manage my pain and nausea as well as I can.
I will try one last time, but after that if there is no improvement, I fear I will have no strength left in me to go on…