Deterioration? Scared

[hapl808]

This must be a temporary state, not a permanent deterioration. Yes, thats it. it's ALL temporary. That's guaranteed.

Well, by definition I guess it is all temporary.

Not sure if it's an upside, but that was basically my last attempt to start my own family. I wasn't sure if I could physically handle it, but that's when I was way healthier than I am now. Now I've had a chance to rethink and with how far I declined and my quality of life, not sure I would want to pass my genes on to another generation. For various reasons my parents' blood line seems to have run its course.

 

[maddietod]

The best advice I got at the beginning of my CFS journey in the 80s was to stop everything, and then add back in what's necessary. I still do this whenever I feel crashy. Instead of starting from where I thought I was safe (but wasn't), and taking things away (oh no!! more losses!), I go back to zero and add. Do I care enough about showers to use up energy there? No, I kinda like my sink-bathing. Etc.

I always cook too much of my favorite meals when I'm in good shape, so I have full dinners in the freezer for harder times. The only additional work is more chopping, which I can do seated.

I'm really sorry you're going through this. Also thanks for bringing this up. There are some great ideas here.

 

[Rufous McKinney]

Now I've had a chance to rethink and with how far I declined and my quality of life, not sure I would want to pass my genes on to another generation. For various reasons my parents' blood line seems to have run its course.

oh, that part is something which needs to be worked through, its important.

The new baby has a milk protein sensitivity. What if she is like me? I get really freaked out, that my two little granddaughters, might be carrying my lousy genes, that have been documented going back as far as: 556 AD. (at which point, who knows what name that person had)

My stomach ache has been historically documented. (King Alfred, 760 AD)

the scoliosis: yup, THAT too. King Richard was my G-Uncle, They found him buried in the parking lot, recently. A psychic woman, indicated he was buried over HERE. And there he was.

Both my granddaughters have indicators of tethered cords. I want to scream NO NO NO.

But it seems life does not work that way. There is no real way to bargain.

There is a trampoline at school and I want to forbid it. Potential neck injuries. And my daughter, once the star goalie of the Frontier League water polo, already has problems at forty, because of the sport school forced her to participate in.

Nice, School.

 

[hapl808]

But it seems life does not work that way. There is no real way to bargain.

No way to bargain, but you can choose not to play. If I'd been healthier I would've had kids and taken the chance. If I were healthier now I might adopt - no guarantees, but that's someone already in the world.

I don't think it's a choice I'll have to make, though, as either one would require making it out of my bed or house, which isn't really in the cards these days.

 

[Rufous McKinney]

I always cook too much of my favorite meals when I'm in good shape, so I have full dinners in the freezer for harder times.

I"m extremely skilled in boiling two eggs. I sometimes go for a year or more, just having the two boiled eggs (as opposed to over easy, omelets, scrambled, diced or deviled). That hot water then cleans the bowl, and I would also save about 45 gallons of water that runs down the drain, waiting for hot to show up.

that does not solve dinner, however.

The best advice I got at the beginning of my CFS journey in the 80s was to stop everything, and then add back in what's necessary.

thats excellent advice.

Well, by definition I guess it is all temporary.

apologies for my weak attempt at being philosophical. All this is incredibly temporary. But meanwhile, how to get thru it.

 

[Emmarose47]

@Rufous McKinney I feel honoured to be in your presence me lady 😁

My home town (city) is where King Richard was found, as u say under the car park near the cathedral. I went with my dad and Granma to the exhibition they held v interesting. I forgot that and it's nice to remember that day with them x

 

[Nord Wolf]

I think much of what I would say here has already been said Emma. Ups and downs and some downs are prolonged and suck. One thing with these conditions is the predictable unpredictability.
As you know I was in horrid condition all last winter, and even halfway through spring. This summer my baseline is lower than any summer previous. But I feel it is just because the winter was so difficult on me. I hold hope that the new medication (still adjusting dose) will help keep me in better shape this coming season of ice and with any luck next summer will be an improvement again.

Being so low sucks Emma and I feel for you. I hope in time your baseline elevates again and I'm sure it will. And as you've said many times to me, in the meantime know this is temporary. Do your best to be easy with yourself and treat yourself well. 🌞

 

[Emmarose47]

I think much of what I would say here has already been said Emma. Ups and downs and some downs are prolonged and suck. One thing with these conditions is the predictable unpredictability.
As you know I was in horrid condition all last winter, and even halfway through spring. This summer my baseline is lower than any summer previous. But I feel it is just because the winter was so difficult on me. I hold hope that the new medication (still adjusting dose) will help keep me in better shape this coming season of ice and with any luck next summer will be an improvement again.

Being so low sucks Emma and I feel for you. I hope in time your baseline elevates again and I'm sure it will. And as you've said many times to me, in the meantime know this is temporary. Do your best to be easy with yourself and treat yourself well. 🌞

@Nord Wolf thank u your support means a lot.. As does everyone who has posted on this thread..
In hindsight I was an idiot (inner critic) moving, socialising to make sure I fitted in, buying a mobility scooter, stressed about trying to make this apartment a home.
Bless me I was still. Pacing and it all. Seemed fine.
I've scaled my life right back, hired someone to do food prep for me and allowing myself to be. My body and spirit feels like it's been through the wringer. I feel broken like I've been through a huge trauma and I just need lots of gentleness.. The higher powers think so too..
My mind needs so much training to turn down the doom...

 

[Rufous McKinney]

I feel honoured to be in your presence me lady 😁

Lol, at least all that makes reading historic literature, more interesting...

And watching Viking episodes. turned out I even descend from Rollo. And I'm not scandanivian.

King Richard was found, as u say under the car park

All that was super fascinating.

I feel honoured to be in your presence me lady

A bunch of my grandparents came to Virginia on Day 1 of The Landing and Take Over. 400 years later, the relatives got about thirty miles away from there, and the front page of the paper in 1908 says DESTITUTE.

But I feel it is just because the winter was so difficult on me. I hold hope that the new medication (still adjusting dose) will help keep me in better shape this coming season of ice and with any luck next summer will be an improvement again.

You're someone who inspires others to persevere, despite all this. I want to thank you, for that precious gift.

 

[Rufous McKinney]

I've scaled my life right back, hired someone to do food prep for me and allowing myself to be. My body and spirit feels like it's been through the wringer. I feel broken like I've been through a huge trauma and I just need lots of gentleness.. The higher powers think so too..
My mind needs so much training to turn down the doom...

its really hard after these big pushes.

I did so well today, my four year old grandaughter left me in tears. Oh, Im a real grown up here.

She stuck her tongue out at me. She's angry about something. but I have very little internal resilience.

So I let a four year old leave me in tears?

 

[Emmarose47]

@Rufous McKinney were allowed to be in tears. Over anything.. Vunerable Fragility is part of our experinece... Take it gentle.. Children can be triggering just like adults x

 

[Emmarose47]

Thing is I was pacing all. The way up to the move and once here.. The flare in Feb /march was pretty easy to take given I feared I'd end up forever bedbound..
May and June proved the car crash was to come..
July and August relentless
It's officially been the shit est summer in the history of me since 1973

 

[Emmarose47]

Don't want to live like this yet don't want to die... Where does that leave one oh yep miserable and suffering..
Oh well I'll keep dreaming of good things..

 

[Emmarose47]

Here here - I am truly and totally exhausted of the ups and downs of this condition.

That said, do keep your hopes up. There are breakthroughs all over the last few months regarding many systemic illnesses and their root causes including ALS, Multiple Sclerosis, and Long Covid. The research and activity in systemic diseases has never previously been successful at finding ANY root causes until now, and now there is more than enough data (and even some successful resolutions under lab conditions in mouse models) to clearly indicate that each of these do have determinable and treatable causes.

I don't have exact solutions to improve things for your particular situation, but I recently added Methylene Blue to my treatment, with good results taking me back a few years in my progression. It's another band-aid. Carry enough band-aids forward and maybe, together, we can hold out until a real treatment is found.

Please hang in there, for all of us!

Praying for you.

-Ken

@Slushiefan do u know what root causes they have found of the conditions u speak of? I've not well enough to take it too much info but briefly I'd appreciate. If u have the energy of course

 

[Emmarose47]

Hi all
October update gee October!
Weather here is sunny but I'm flaring..
I spent some time speaking to my neighbour with dementia the other day. Thought I wouldn't crash as she is so mild and meek, gentle energy that I didn't think would effect me but....... Yep it did. GROAN
Well just gotta ride it out hey..
The positive is my energy is coming up some to get lunch and then around 3.30 - 3.45 I get another boost.. Its strange that so often that time of day is a boost energy time... Must be the energy in the cells rejuvenate enough? Anyone know the science on this?

 

[Slushiefan]

@Slushiefan do u know what root causes they have found of the conditions u speak of? I've not well enough to take it too much info but briefly I'd appreciate. If u have the energy of course

Hi Emma, The following is poorly written, but I wanted to respond. We all need hope to hang on.

Here is one article very related to what I am speaking of, just released today. This one is focused on autoimmune diseases in particular. Autoimmune disease are systemic in nature.

https://medicalxpress.com/news/2023-10-link-gut-bacteria-pre-clinical-autoimmunity.html

Systemic diseases (diseases that affect multiple body systems), of which CFS is one, have been notoriously hard to resolve. Some of the first causes of systemic diseases were discovered to be rooted in vitamin deficiencies.

Up until very recently (last 2-3 years) almost all treatments for systemic diseases that medicine could not resolve yet were limited to symptom control, meaning they could only treat some symptoms, and not the cause. It is because these causes were exceedingly vague given our limited diagnostic abilities (no biomarkers).

Recently though, advances in microbiology analysis have allowed scientists to enumerate the bacteria in the body. Links are showing up that illustrate that the cause of many of these systemic diseases are rooted in intestinal bacteria.

Under some circumstances, it seems that some particular bacteria triggers issues, causing a cascade of failures, eventually leading to at least some of these systemic diseases.

Like finding a needle in a haystack.

For example, Multiple Sclerosis (MS - which is very similar to CFS) has been resolved in mouse models through complete sterilization of the gut microbiome. So they know the cause of MS is in there, somewhere, rooted in the gut bacteria. But what is not known is which one (or several) of the bacteria is the cause. Since there are hundreds to thousands of bacteria in the gut, it is a long process to narrow that down.

Not to mention, we don't know if the cause is the bacteria itself, a waste product it produces, a genetic oddity where the same bacteria may not cause a problem in some but does in others, or even issues that are mechanical in nature (eg leaky perforated intestinal walls).

There are around 450 bacteria in the average American gut, so finding which one or ones are responsible will take some time. The good news is they are working on it, and showing good progress.

This is one study discussing MS and gut bacteria.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9881072/

Finally, resolving that is also necessarily complicated. For example science doesn't have the ability to take out just one or two bacteria types with antibiotics, they have to take out many. So treatment will also take some time.

IMHO, it is a matter of <10 years, before they will have found the causes of many of the systemic disease, which will include ours of ME/CFS.

I hope that helps us all keep the faith - I need it as much as you do.

 

[Emmarose47]

Thanks for posting @Slushiefan yes we def need all the hope we can get! We're living in the best times out of our past brothers and sisters with M. E cfs for research and more hope.
Anthony Williams medical medium has vast information on pathogens, bacteria, viruses and toxins being the cause of all chronic diseases..
Epv bigger a big contender.