Planning ahead, but where to start?

Long Haul Mono

Senior Member
Messages
122
Having read other posts I'm aware there are those (like me) who find lengthy posts 'taxing on the energy levels' so I'll start with a dot-point brief and read on if interested and if your energy levels allow.

In brief:
  • I have considered the need for a major life change as part of 'moving forward'/future management of my ME.
  • Currently employed with a toxic employer, but due to COVID (for now) work from home, but feel my days are numbered.
  • My house provides little opportunity for rest (without earplugs/noise-canceling headphones) due to neighbours/other environmental factors.
  • I recently have been "tempted" by YouTube videos of off-grid living, but need to be realistic about my current limitations.
  • I feel 'slowing things right down' will help me manage this better, but today's employment/lifestyle demands are at the opposite extreme.
  • Has anyone in this forum experienced/actioned a major "sea change"? I'd love to hear from you.

...and for those still interested in reading on:

Recently, I had a chance to 'take a step back' and really think about what I'm dealing with right now. At the risk of being accused of having a mid-life crisis, I turned 50 earlier this year, and started to think of the actual cost (to my physical- and potentially over time mental-health). I can't say I'm enjoying life anymore but rather "enduring" it. This is not the first time I found myself here, and I believe things must change, ie I put this off for too long.

At the moment I'm clearing out a fungal infection that apparently 'slipped under the radar' of my (apparently) dysfunctional immune system, ie I have read that most people are exposed to this kind of fungus on an almost-daily basis and can fight it off quite easily, possibly without even consciously being aware.

This is my short-term goal, and then with the help/guidance of my GP, evaluating and refining a sustainable management strategy That is my hope moving forward.

I have written about my employer in other posts so I won't reiterate here. Apart from the 'office politics', I enjoy the challenges this work provides and was able to manage my ME before the abuse began. To date I have not fully recovered from the year-long, sporadically-occurring abuse, and with the likelihood of a recurrence, I think it would be wise to leave ASAP.

The only problem is finding new employment, and the two challenging odds stacked against me: Age discrimination and Disability discrimination, both of which are prevalent in Australia.

Leaving this job may result in long-term financial problems, and although I am "closer" to retirement age I still don't have enough to retire early.

I think I also covered the building non-compliance of my townhouse in another thread. Having tried my best to resolve this the matter is hopeless and it's basically time to sell up and move, which is kind of heartbreaking as I just paid off the mortgage a few years ago and am not looking to get back into debt.

Dealing with ME is enough of a task as many of you would agree. However when you add the following (which I'm currently dealing with):
- Toxic workplace and the increasing number of "signs" suggesting I may be "managed out the door" soon/eventually. My employer has shown they care little for CFS/ME.
- A house where I can't really get rest. The percussive noise occurs anytime 24/7
- COVID and the looming threat of Government vaccine mandates (a different topic I won't cover here)
- Knowing I don't currently have the energy/stamina to make this "sea change".
- Knowing I can't remain in this "status quo". I think the old song "Should I stay or should I go now" by the Clash is fitting here. :D

I'm well aware, when a person is 'drowning in a bad issue' it may be difficult to think clearly or come up with ideas to initiate the necessary actions, which is why I'm writing this today, with the hope someone may provide feedback that I can use as a start point.

I am also well aware this is not a quick fix and will take time, which is why I am pre-emptively (job-wise) acting now.

The local CFS/ME support groups seem limited in what they could offer me and, although there is the Centrelink (unemployment/disability pension) catch-net, I don't want that to be the first go-to option. Unemployment benefits or a disability pension are not sustainable incomes.

My hope in moving away from here is to a cheaper area where I'd burn through my income slower. Sounds like wishful thinking? well... all thoughts/ideas are on the table right now.

Thanks for reading and I look forward to your constructive comments/suggestions.
 

CSMLSM

Senior Member
Messages
973
Dealing with ME is enough of a task as many of you would agree. However when you add the following (which I'm currently dealing with):
- Toxic workplace and the increasing number of "signs" suggesting I may be "managed out the door" soon/eventually. My employer has shown they care little for CFS/ME.
- A house where I can't really get rest. The percussive noise occurs anytime 24/7
- COVID and the looming threat of Government vaccine mandates (a different topic I won't cover here)
- Knowing I don't currently have the energy/stamina to make this "sea change".
- Knowing I can't remain in this "status quo". I think the old song "Should I stay or should I go now" by the Clash is fitting here. :D

I'm well aware, when a person is 'drowning in a bad issue' it may be difficult to think clearly or come up with ideas to initiate the necessary actions, which is why I'm writing this today, with the hope someone may provide feedback that I can use as a start point.

I am also well aware this is not a quick fix and will take time, which is why I am pre-emptively (job-wise) acting now.

The local CFS/ME support groups seem limited in what they could offer me and, although there is the Centrelink (unemployment/disability pension) catch-net, I don't want that to be the first go-to option. Unemployment benefits or a disability pension are not sustainable incomes.

My hope in moving away from here is to a cheaper area where I'd burn through my income slower. Sounds like wishful thinking? well... all thoughts/ideas are on the table right now.

Thanks for reading and I look forward to your constructive comments/suggestions.
Hi again,

I am settled in now as I joined at the same time as you and I have some resources for you to look over should you wish to. I am still adding to all this.

(1) Search results | Phoenix Rising ME/CFS Forums

Here are my threads hope they can help. Ask as many questions as you like in the relevant threads. Same as you I am still on message delays so apologies for that, will respond asap.

Hope its useful to you :)

Daniel
 

Long Haul Mono

Senior Member
Messages
122
Thanks Daniel. Unfortunately, that link gave me:

Oops! We ran into some problems.


As suggested in my original post, I'm trying to be realistic about this within the confines of my variable limits. I guess the old saying "The journey of a thousand miles starts with a single step" may fit here, and as I sit here writing this reply, with noise-canceling headphones on due to neighbour/environment noise it just confirms to me it's time I get started with it.

I'd also like to hear the recovery story that you mentioned (post #8) in my introduction post (for some reason I couldn't link to it). One of the early challenges I have is to get my energy level stable and sustainable. I have made some progress but it may still be a way to go yet.
 

Rufous McKinney

Senior Member
Messages
13,495
Having read other posts I'm aware there are those (like me) who find lengthy posts 'taxing on the energy levels' so I'll start with a dot-point brief and read on if interested and if your energy levels allow.

I'm appreciating your very calm and logically developed write up including the lovely bullets, as a Once Bureaucrat myself, I tremendously admire your skill.

"Hire This One"! I say. When things get toxic in the workplace, its best to clear out. It just has a way of spreading and contaminating.

There maybe very well be: this someplace else which costs less, yet meets your needs, and keeps you going.

I wish you the very best in working thru these issues.

I"m going to do a pretty major Sea Change thing myself, exactly when is a bit vague. I'll be leaving the country to live nearer to my daughter. It raises the Spector of many many challenges. At least I have some moral support and help from her.
 

CSMLSM

Senior Member
Messages
973
Thanks Daniel. Unfortunately, that link gave me:

Oops! We ran into some problems.

As suggested in my original post, I'm trying to be realistic about this within the confines of my variable limits. I guess the old saying "The journey of a thousand miles starts with a single step" may fit here, and as I sit here writing this reply, with noise-canceling headphones on due to neighbour/environment noise it just confirms to me it's time I get started with it.

I'd also like to hear the recovery story that you mentioned (post #8) in my introduction post (for some reason I couldn't link to it). One of the early challenges I have is to get my energy level stable and sustainable. I have made some progress but it may still be a way to go yet.
I am sorry I am new to online communication I have been isolated essentially by my condition and never reached out much.
Only having the energy for my research and self care mostly. I guess I cannot link the page all my threads are on for ease.
Thank you for informing me and making me realise I need to link each individual thread so it will work.

I suspect it is because I have added more threads thus changing the page address, I think thats the case anyway from my limited knowledge in that area but am trying to improve as I go.

Here are some links to individual threads-
(1) Members Only - Hi everyone at Phoenix Rising | Phoenix Rising ME/CFS Forums
(1) Members Only - Amazing resource (video) on Caryophyllene the science and potential! | Phoenix Rising ME/CFS Forums
(1) Members Only - My Recovery Experiences- A Place for Answered Questions by CSMLSM | Phoenix Rising ME/CFS Forums
(1) Members Only - Cort Johson`s blog post about ME/CFS/FIBRO May 27, 2020. This! | Phoenix Rising ME/CFS Forums
(1) Members Only - A place to ask Questions about Caryophyllene + related stuff! | Phoenix Rising ME/CFS Forums
(1) Members Only - What music can you listen to or not because of ME/CFS..Share here. | Phoenix Rising ME/CFS Forums

I hope I have solved my deficiency :)

Daniel
 

Long Haul Mono

Senior Member
Messages
122
...I tremendously admire your skill. "Hire This One"! I say....

Thanks Rufous. Unfortunately, all the better-paying jobs seem to be confined to the big cities, and big cities are what I'm trying to avoid.

I moved interstate in 2003 to where I am now, and don't recall it being such a hard thing to do. How times change hey? :mischievous:

All the best for your move as well, and if you have any tips/suggestions post-move, I'd love to hear them.
 
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