M.E- THE INVASION OF THE BODY SNATCHING ILLNESS

[hellytheelephant]

Hello! My latest Blog is about my time of

living with mild/moderate M.E and working full time. As someone who has been seriously affected for the last decade, it is easy to forget how very tough life can be when you are trying to hold down a job and a life. I hope this rings a few bells with some of you.
https://thechronicelephant.blogspot.com/2022/06/me-invasion-of-body-snatching-illness.html

 

[BrightCandle]

Good luck stealing my body and getting it out of the building. I would however appreciate the time off.

 

[hellytheelephant]

Good luck stealing my body and getting it out of the building. I would however appreciate the time off.[/QUOTE
it would be amazing to have time off from being in a sick body, and having to manage all the symptoms!

 

[Rufous McKinney]

living with mild/moderate M.E and working full time. As someone who has been seriously affected for the last decade, it is easy to forget how very tough life can be when you are trying to hold down a job and a life. I hope this rings a few bells with some of you.

that was me...just pulling off work takes over and the rest of life is set aside. The social life went during that era.

Then Just pulling off work gets iffy.

Factors that allowed me to work longer than otherwise would have ever been feasible:

1) home office, able to take breaks when I needed them
2) food is there all the time.
3) limiting meetings out/ eventually I could not drive to meetings (last two years)
4)federal program allowed me to use my accumulated sick leave (for pacing, PEM)

Otherwise I worked a forty year career with mild ME. I would have infrequent bouts of getting too run down. But would sort of recover.

 

[YippeeKi YOW !!]

Good luck stealing my body and getting it out of the building. I would however appreciate the time off.

....

 

[YippeeKi YOW !!]

Thank you @hellytheelephant for posting your recent blog entries here, I really enjoy keping up with your unique views and equally original and unique art work ....

I migrated from the INVASION OF THE BODY SNATCHERS post (one of my favorite movies, a metaphor for the Communist scare and the HUAC hearings), to your post about tea .... over here, our 'cuppa' is usually coffee, and like you, after being deprived of absolutely everything other than water and 3 forms of cheese, I found myself facing a life of mornings without coffee. Mournings. Whichever. I survived that for over 3 years. Don't ask how. It's a total mystery, but it had to do with the court of " ....no other choice ...". So you have my deepest empathy.

How did the matcha tea (something else I had to give up) work?


ANARCHY IN THE UK....or is it?!
https://thechronicelephant.blogspot.com/2019/10/tea-anarchy-in-uk.html

 

[hellytheelephant]

that was me...just pulling off work takes over and the rest of life is set aside. The social life went during that era.

Then Just pulling off work gets iffy.

Factors that allowed me to work longer than otherwise would have ever been feasible:

1) home office, able to take breaks when I needed them
2) food is there all the time.
3) limiting meetings out/ eventually I could not drive to meetings (last two years)
4)federal program allowed me to use my accumulated sick leave (for pacing, PEM)

Otherwise I worked a forty year career with mild ME. I would have infrequent bouts of getting too run down. But would sort of recover.

That's sounds very hard to manage. As you say working from home helped at times. I kept ending up in ER and/or losing my voice/having antibiotic infections. I kept changing jobs but that was like re- arranging the deckchairs on the Titanic!
People have no idea of how long most of us struggle to keep going, and how much courage it takes...and the toll on mental health.

 

[hellytheelephant]

Thank you @hellytheelephant for posting your recent blog entries here, I really enjoy keping up with your unique views and equally original and unique art work ....

I migrated from the INVASION OF THE BODY SNATCHERS post (one of my favorite movies, a metaphor for the Communist scare and the HUAC hearings), to your post about tea .... over here, our 'cuppa' is usually coffee, and like you, after being deprived of absolutely everything other than water and 3 forms of cheese, I found myself facing a life of mornings without coffee. Mournings. Whichever. I survived that for over 3 years. Don't ask how. It's a total mystery, but it had to do with the court of " ....no other choice ...". So you have my deepest empathy.

How did the matcha tea (something else I had to give up) work?


ANARCHY IN THE UK....or is it?!
https://thechronicelephant.blogspot.com/2019/10/tea-anarchy-in-uk.html

I am so glad you are still enjoying the Blog.
The blog about tea was when I was determined to get a bit better by clean eating/healthy living and even splashed out on a homeopath...
Three years later and I do not think I could have got through the Pandemic, and 2 major bereavements without tea ( although I appreciate that I am highly priviledged to have the choice.)
The Matcha was disgusting and affected my tummy...!

I am sorry you can't have coffee- that must be SO hard. Mournings indeed. P.s. Spoiler alert:the homeopath didn't work!

 

[Treeman]

I lived like that for about 25 years, but got severe about 5 years ago and had to swap work for my bed.

I changed job about every 1.5 years, in a endless attempt to find something that would work, it never did.

No social life during that time, even less now.

However the constant headaches etc. have now changed to occasional, so there is a silver lining of sorts......

 

[YippeeKi YOW !!]

I am so glad you are still enjoying the Blog.

I love it !!!

The blog about tea was when I was determined to get a bit better by clean eating/healthy living and even splashed out on a homeopath

Yessssss .... been there, tried that, didnt work, what a surprize ..... this is re the 'clean eating' part ....

I haven't bothered with a homeopath, because finding a good one, trained in the classical school of homeopathy that Vithoulkas is so good at (an old friend of mine was lucky enough to get an appt with him, said he was incredible and while his treatments were difficult and demanding, they worked, at least they did for him) is slightly mre challenging than sourcing The Golden Fleece ....

Once homeopathy came out of the closet, every chiropractor who needed another income stream apparently took a 2 week mail order course and hung out that extra shingle.

Some are better than others, but it's too much of a crap shoot ....

Spoiler alert:the homeopath didn't work!

Stunned.

I am sorry you can't have coffee- that must be SO hard.

Actually, as I gradually worked my way out of being bedbound and locked inside a body that simply wouldnt function and a brain that couldnt process or remember anything. At all....once I improved a bit from that, and after about 3-plus years of abstinence, I was able to add very weakly brewed coffee back into the morning rotation, with a little cocoa in it, it's heaven !!!!

I had to start with weakly brewed decaf, then gradually added small amounts of real coffee while decreasing the decaf, until I arrived at what my body could tolerate, and I'm just so grateful for that little blessing, I could literally cry .... a little Droste cocoa, a little coffee, a small amount of sugar blended with a fair amount of stevia ..... yummmmmmm!!!!

 

[hellytheelephant]

I lived like that for about 25 years, but got severe about 5 years ago and had to swap work for my bed.

I changed job about every 1.5 years, in a endless attempt to find something that would work, it never did.

No social life during that time, even less now.

However the constant headaches etc. have now changed to occasional, so there is a silver lining of sorts......

that is good news on the headaches.
aside from all the physical strain of pushing yourself I found the mental toll was huge. un
So ironic that we are seen by society as malingerers when we have to work so hard at managing illness and managing life. It's back breaking.
i am unfamiliar with the concept of having a 'social life' !

 

[YippeeKi YOW !!]

i am unfamiliar with the concept of having a 'social life' !

Wait !!!! Wait !!!! I remember this one !!! .... it has something to do with .... uh ... hmmm .... with ...... damn. I lost it. Something to do with .... friends and .... uh ... you know.... doin' stuff .... damn.

 

[Rufous McKinney]

I found myself facing a life of mornings without coffee. Mournings. Whichever. I survived that for over 3 years

I just did over two months no coffee. the cup of coffee "might" actually give me a reason to get up.

I had one cup yesterday and after the initial GREAT WONDERFUL coffee alertness, I felt dried out and pretty awful most of the afternoon. .....so ....forget the coffee, for now, I guess....

 

[hapl808]

I lived like that for about 25 years, but got severe about 5 years ago and had to swap work for my bed.

I changed job about every 1.5 years, in a endless attempt to find something that would work, it never did.

I wish I had a better idea of any job that I could do. Many of us here seem to have some good abilities and some who were 'lucky' enough to be fully severe at an older age (started around 40 for me) have some good resume stuff. But what job can I do when I have maybe 5-6 good mental hours per week and another 5-6 mindless hours where I could probably answer some emails. I get too tired out by video chats (and look like crap), and have trouble following new information.

 

[Rufous McKinney]

what job can I do when I have maybe 5-6 good mental hours per week and another 5-6 mindless hours where I could probably answer some emails. I get too tired out by video chats (and look like crap), and have trouble following new information.

I recall trying to get a different job in a different geography area...a few years before I actually retired. I must have needed my head examined. What stopped me ultimately was when I had to complete an online job application process. When I could not get that to work, it was apparent I cannot even do the job I'm trying to get.

I stayed put thank goodness, did the job I could do, in a faking it more and more capacity. (calling into meetings, video chats, winging it, reading big reports laying down in bed.)

 

[BrightCandle]

I tried to take on part time work from home for a bit but I got zero bites from any companies. Before I got sick I was beating work back with a stick but once I couldn't do a full week any more no one was interested at all. I gave up years ago, the brain fog reduces what I can do immensely anyway. Once you become disabled you sure find a lot of companies not interested anymore that before the disablement would have jumped at the chance to interview you.