Any advice would be appreciated...

  • @Long-Haul-Mono Hello, welcome here, and much sympathy for all you are going through.

    I have been thinking about your situation since you posted. It seems there are several difficult issues you are facing. My apologies, I bet I make mistakes in my understanding, but I thought I would write out what I have been thinking about incase something is helpful.

    First of all, congratulations for surviving for 30 years with undiagnosed ME/CFS and managing to keep working and dealing with workplace abuse. You should have a medal every day.

    The ME diagnosis is useful, but as you are finding, it doesn't lead to treatments, cure, easier workplace or much more understanding. (insert swear words here). There are not many super GP's around who will understand your condition and help to make life better. (I gather people can direct message you if they know of a GP near you they recommend. I hope that happens!).

    You are thinking strategically about your next move at work. You have a toxic workplace, and return to it is likely to make your ME condition worse. You could take early retirement, but you do not wish to. Your preference is to remain working from home, but this is not supported by your workplace.

    Working from home. 1st preference. You would need to create a precedent. You need certification from a doctor or specialist. You would need to convince your employer who actually wants you to leave.

    This sounds like it will be a fight, but there is a lot more support for working from home (thanks corona virus 😉 ). Also, if you can make it happen for you, you will set a precedent for others who want or need to do the same (hero status).

    *Would a doctor's certificate be enough?
    *Are you in a union? Can they help?
    *Do you have a sense of how big a fight it would be? Are you up for it?

    Early Retirement. 2nd Preference (I think)
    Are you set up financially to make this work?
    Would you be able to do this in a way that would not impair your health further?
    (Don't think they would win if you left, you are the winner here.)

    Back to the workplace. 3rd preference, maybe impossible
    With your new diagnosis would you be able to demand support and practical changes in the workplace that would make being there tenable?
    You could get help to work out smart replies for the comments, clear boundaries that you can articulate.
    Could you negotiate some days at home and some in the workplace?
    Would that be bearable?

    The most difficult thing is that every choice will take energy and planning, and that is just not fair because you don't have that extra energy.
    I do hope you have some good supports and resources that help you make your best choice.
    You don't need the perfect doctor, just one that will support the choice you need to make for your health.

    I don't envy you this difficult time ahead . I really hope you can swing it to be able to work from home. You should be able to make a great case. There is more research now on how productive it can be to work from home, and you can point to the success you have shown working from home over the period of your medical certificate. You can argue the health benefits of working from home, that will allow you to be a more productive employee, and provide examples.
    If you are putting together a case like that, you should be able to take it to a medical professional to help them write a certificate to support you.

    All power to you, and best wishes.

  • Thanks everyone for your welcomes and supporting words. It's been a fairly long time since I had people understand what I was trying to explain, although explaining myself is a practice I don't do with non-ME/FM suffers, or non-medical people... It's just not worth it from my experience.

    @Glimmer In the many doctor/specialist appointments I attended over the years I also saw a neurologist. One fortunate outcome is having ruled out Epilepsy. That strobe light test isn't very pleasant.
    Understandably, neuroscience would have a seemingly unlimited collection of tests that could be performed, and again, unfortunately the ones that I had hoped may have focused (somewhat) on ME didn't seem to be included.
    I'm finding out (in recent days, via YouTube medical lectures/presentations) that some in this medical research field consider ME/FM a possible neuro-inflammatory condition, and the fatigue and 'rubbish mood' is your body's way of forcing you to rest and recover during this inflammatory event.

    @Dot thanks for your kind words and, again, the experience of having someone actually listen and understand my situation has absent for so long it feels somewhat awkward. 🙂
    It's been a rough few days, mainly as I tried to sleep without the CPAP machine, as this treatment both helps and hinders, but considering all things sleep seems to produce the best (but not optimal) outcome of being 'as awake as I can be' during the day. Dr.Nancy Klimas (Nova Institute, Florida) described the association with the ME stating her ME/FM patients often develop Obstructive Sleep Apnea.
    I've also been prescribed nootropics which help a lot with blowing away the brain fog, but this drug has its limits, ie there is no pill to replace a rested night's sleep. Today I felt this chemical battle between my body's demands to go back to sleep and the nootropics forcing me to be awake... it's not a pleasant experience, but the drug does let you sleep if you need to, which is one of its positive attributes, amongst other negative attributes (very long half-life).
    After having read your reply I thought about where I am at the moment and what I think would be the best way forward, even in this groggy state of mind propped up with nootropics. 😞
    To be honest, I think the early retirement option (if at all available to me) may be the way forward because:

    • My work didn't even acknowledge what they allowed to have happened.
    • They denied me the ability to report it as a workplace incident, although even if it had been, some have advised me that it would likely be treated as a mental health issue, and subsequently rejected.
    • There has been no attempt by them to reconcile or discuss how they can help, beyond the recommendations from my GP that I work from home.
    • Any other work (ie leaving this job) may lead to more work hours and likely less pay (introducing financial stress into the picture).

    I'm getting subtle hints from work that they may be 'losing their patience with my "imaginary disease"' and they may issue an ultimatum, which may lead to my dismissal. This is an assumption and may be driven by the lack of trust I developed from my experience, but a real possibility, ie I have head stories of others effectively "pushed out the door" through distorted policies/procedures. Again, it's a very toxic workplace.

    If I pursue the retirement option, that introduces the problem of financial stability and the stress that may follow, noting stress is the enemy.
    I live a fairly 'minimalist' lifestyle and expenses, but considering the grocery bill I had this week (and how it's been steadily increasing over time yet my pay hasn't), I have genuine concerns.

    Obviously having these genuine concerns doesn't work well with a disease that is triggered quite easily by stress events.

    Sorry for the long rant, but I really don't know where to go from here.

  • @Long-Haul-Mono Very sorry to hear about your frustrating battle. I was fortunate that my Neurologist had a friend who had CFS and I presented with the same symptoms, but I was being tested for MS. So that’s how my diagnosis came about! Somehow you’re going to find that someone.
    I started all of my research via YouTube and then came across the excellent US based, Cort Johnson (who has CFS). Lots of information there.
    All the best. Are there any CFS specialists in your area? I think there are a couple in Melbourne.

  • @Long-Haul-Mono My two bobs worth...
    You need to get an honest medical certificate outlining what you can/can't do. Nothing happens without it.

    This means finding a physician who is prepared to give you one.

    My work was of a technical nature and my 2014 med cert pretty much prevented me from doing anything that put myself or others in danger .... it rendered me unemployable.
    Five dot points was all it took.
    Eg: Not work without close supervision.
    Not do anything that requires sustained concentration etc etc.

    Whilst this angered me at the time, it became apparent it was an accurate assessment.

    Don't abandon the life-boat (your job) whilst it's still afloat. This can cause you big problems later on (been there, may rule out certain options).
    You have superannuation(?) so you have insurance cover.

  • @Glimmer said in Any advice would be appreciated...:

    Are there any CFS specialists in your area?

    In Canberra, not that I have found.
    I heard of one doctor who "has an interest in CFS/ME" but his fees are very high. Respectfully, if I'm going to pay 'specialist fees' the doctor will need to have more than 'just an interest'.

  • @Royal-Flash said in Any advice would be appreciated...:

    Don't abandon the life-boat (your job) whilst it's still afloat.

    That's what has me at odds, or rather at the 'cross-roads'.
    It's a job for now, but their unwillingness to reconcile or even discuss this further suggests their longer term plans for me are not friendly, and this employer is notorious for their cancel culture.

  • @Long-Haul-Mono Sometimes an “interest” is quite a find! I would be making an appointment if it was me. 🤔

  • @Long-Haul-Mono Hello again. More sympathy.
    I'm thinking that if Early Retirement looks like it will be the most practical, then you have nothing to lose in an attempt to Work From Home. Go all out, being really clear on what you would like, with a medical certificate to support it. Don't spend too much time on it, given it sounds like you physically and mentally don't have that energy, but say what you know you need and give it a shot. If it doesn't work, well, it will be what you expected, but if it does work it might give you some more manageable working time to save up for that not-quite-so-early retirement? Maybe worth a try?

  • @Dot
    Thanks Dot. In the short term it's a "wait and see" game, with that GP appointment needed in the next few weeks. My work is slowly growing impatient.

  • @Glimmer said in Any advice would be appreciated...:

    @Long-Haul-Mono Sometimes an “interest” is quite a find! I would be making an appointment if it was me. 🤔

    After 30 years in and out of GP/Specialist offices you kind of get a reluctance to 'take your chance$$$.
    During that time I also just went into "GP hibernation", ie I just didn't want to see another GP and 'put up with the unknown fatigue issue' (at the time prior to the ME diagnosis). In hind sight I realise this was not a good strategy, and the only thing to get me back in the GP office was when matters got unbearable.

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