The Pitstop Before The End.

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…

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31 comments

  1. I’m so sorry you had to deal with a non-supportive doctor, I know how that can be. I also know how it is when people think you’re being childish or just using how you feel as an excuse. At the same time though, it could be a good thing that you are being pushed to work (but I agree that you shouldn’t be rushed either if you are not ready). I wish you all the best and if you need to talk, I’m here.

    Liked by 1 person

  2. This is exactly how I felt at the end of my last drs appointment where he said I may just have to put up with my “small symptoms” when I was crying on him because I feel so shit. But after a few weeks I have rallied a bit and I’ve found the will to try again. I know it feels awful right now but you’ve got this far you are such a strong person you will find a resolution and the will to continue x

    Liked by 1 person

  3. Cass, I am SO sorry you had to meet such an utter wanker of a so-called specialist. I hope he comes back in your shoes next time round, then he’ll understand how detrimental his approach is.

    Even if they force you to work, and even if you can find someone who is prepared fo employ someone with your awful health problems, who throws up, is physically weak, mentally and emotionally exhausted and stressed, depressed, in pain, fatigued, brain-fogged and all the rest, how long will it be until you collapse? And how long will it be until the HR dept write you off sick? Not long, I bet.

    I hope you and Nathan can negate the impact this idiot’s letter will likely have, BUT if you don’t, your “imaginary” illness will manifest in very concrete ways if they force you to work. If you physically cannot work, you physically cannot work. It’s tragic that it looks as though you’re going to be made to force them to accept this by making your health even worse than it is.

    Can you complain about him? Get a second opinion? Has anyone sent you to see anyone about the depression?

    All love,
    L. X

    Liked by 2 people

    1. This is what I am stressing about.
      It is all well and good for everyone to say “just go back to work. It will be good for you”. Walk a day, an hour, in my shoes and tell me if you can work?
      Who would hire someone like me? I wouldn’t? I’m a great worker, in good health. But, the sad reality is that this is a bullshit cycle. If I have no letters, no professionals telling the government that I am ill, then I don’t get the benefits and I have to work. If I can’t work, and have no money, I cannot see any of these Specialists. It’s a vicious cycle. They are so inconsiderate.

      Nathan was good. We went through his letter today and he outlined every symptom that I have and what I won’t be able to do because of it. Pretty much, I cannot go being alone for more than five minutes with the dizziness and nausea and pain. He said he can try his best, but fears they won’t listen. They make the final decision. Regardless, I have three to six months before I HAVE to be back. It’s terrifying.
      Too many opinions now. Way too many. Nathan is the best I have at the moment, and even he said we’re on a time limit.
      I will wait to that meeting in july and have fingers crossed. I have to go back to my gp and hope he will still write me a letter after reading that idiot’s letter and theory.

      I saw a psych for one session but it doesn’t count. Too expensive down here. I couldn’t afford it on top of the rest of the appointments xxx

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    1. I don’t know if they’d do that here, would they?
      I can’t even think about it. It gives me anxiety to imagine being at a workplace, vomiting, in pain, dizzy and unable to stand. How embarrassing.
      I want to work but not like this. Not like this

      Like

      1. I do know how you feel, and I know it’s a terrifying position to be in. But if the system forces you to collapse at work, then surely they will HAVE to accept that you’re telling the truth and that you ARE too ill to work, despite that man sneering at your illness. And if they accept that, then they HAVE to support you by declaring you unfit for work, and by paying your application. Can you check online somewhere, to give yourself at least some peace of mind? X

        Liked by 1 person

      2. I’m hoping that they have to give me SOMETHING because he has written me off for another theee month period, inclusive.
        I just don’t know if they will listen, because some stories from others down here have proven that they don’t. They just want me back at work even for ten hours a week.

        It’s a time limit now… A little hour glass.
        xx

        Liked by 1 person

  4. I’m so sorry you had to deal with that idiot. I have had a similar experience where a doctor refused to put me on disability. It’s very disconcerting to be patronized. I do not respect doctors.
    Have you tried the Fodmap diet? You should look into it. It might help you. I am now doing free consulting. If you need help contact me.

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      1. I completely understand. I’m here for you if you need a sympathetic ear. I saw your post on taking a break. I hope to see you back soon. Be well.

        Like

  5. Sorry Cass, What a mess! i lucked out and my old job offered disability insurance and I used that before the government payments. Well actually the first 6 months were state disability and then the long term disability company and then the government. I am considered permanently disabled, but that is subject to review as well. I could well end up in your position.

    Like

  6. Do you know if you have a superannuation fund that includes income protection for illness? I had never heard of such a thing – but a girl in hospital told me about it. Finding out my super fund DID offer this, and getting the claim approved – was an absolute miracle. (And much better than dealing with Centrelink!!)

    Best wishes x

    Like

  7. Haha yes, would be happy to never ever again go into another Centrelink office!!!

    Honestly, look into it, you won’t lose any super, if your claim is approved you could get a salary and super contributions every month.

    xx

    Liked by 1 person

      1. Yes! If u are not working due to illness. I’d never heard of it either (neither had my dad who knows everything bout that kinda thing) but I am SOO glad to have heard about it – it meant a lot of money and I wonder how many other sick people in Australia are on disability pension only because they didn’t know they were entitled to income protection! X

        Liked by 2 people

    1. I’m in a country with no disability fund or government pay outs whatsoever. Health insurance doesn’t really cover most chronic illnesses but somehow I’m not working n surviving. I’m sure u wld get favour for the best assistance needed. Take care.

      Liked by 1 person

  8. i know how bleak that future can look. i am on govt assistance (SS -US) and they review every so many years and I am terrified of the same things…of being able to even GET a job much less KeeP it, and can i ever do full time again?

    you are doing all you can. the more documentation you have of labs, tests, doctor notes, that show you couldn’t be in a job for a day or a few days, will help show your illness. this is all you can do. hang in there, keep hoping. you don’t know yet what will happen til you get there.

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  9. I worry about work everyday but my story is a bit different. Some of it I won’t be able to write about until I’m retired in five years. I was just sent the notice that I’m going to be switching to long term disability from short term. I’m feeling more lost now than I was. I hope find some combination that allows you to have more good days than bad.
    mini

    Liked by 2 people

  10. I wish I had a “You’re Fired!” wand. I would so fire “non-nuturing”. What a horrible person!!! I wish compassion were one of the requirements when entering the healthcare profession.

    Take everything in stride. Listen to your body. And try not to feel guilty. Your symptoms are real. I think doctors get to the point where they blame us because if they don’t they have to admit that they don’t have the answers. They don’t want to feel incompetent so they attack us.

    I’m so sorry you had this experience.

    – Skylar

    Liked by 2 people

  11. I remember my bosses were doubting my illness when the symptoms started and didn’t understand y I couldn’t work. At a point I think they thought I was just lazy. Thats when I could work. Now getting out of bed alone is good news. Just hang in there and turn a blind eye to the negativity.

    Liked by 1 person

  12. Wow. I can’t even imagine having those things said to me. I probably would have actually lost it and flipped out. I’m sorry you had such a horrible experience, but I’m glad to hear you’re willing to keep trying!

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  13. I am telling u. Marry me, come to Canada and bring ur bible of chronic illness. We’ll get you on pharmacare, low cost meds. U would easily qualify for short term disability at a pay out of like 8-900 a month. We get u back on track, divorce (only if u want) lol… And the end. Happy ending either way 🙂

    Like

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