• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Spooning Tips

gbells

Improved ME from 2 to 6
Messages
1,491
Location
Alexandria, VA USA
Nobody has started a thread for spooning tips so I will do it here. Spooning is rationing your energy so you don't have a ME crash. After you learn to do it, it becomes a lifestyle and you'll find ways to work less and still get things done. Here are some things I do. Please add with anything you do to save energy that hasn't been covered.

  • When grocery shopping only make one or two trips to the car to bring up groceries (I live on the third floor so it's taxing). I leave anything that doesn't require refrigeration and isn't freezable (in winter) in the trunk and get it the next day when I return for a walk.
  • I use the dishwasher every two or three days to do dishes. Putting them away when I have energy.
  • I place bowls in positions that minimize me having to perform repetive acts. For example, when filling capsules with bulk powder I have bowls at arm level and try to do two capsules at a time.
  • I take baths less often and usually just wash my face.
  • I wear the same clothes for a few days until they start to smell funky to do less laundry.
  • I rinse out non-meat bowls and store them in the fridge to be used again the next day. This cuts down on dishes.
 
Last edited:

YippeeKi YOW !!

Senior Member
Messages
16,047
Location
Second star to the right ...
Spooning is a great theory, and it may work for members whose condition is mild, and isn't too debilitating.

For a lot of others, tho, the concept of even 3 ingredient dinners is like a dream to aspire to. And making " ..only ..." one or two trips up to the third floor after grocery shopping in order to bring in the bags is another aspirational hope, along with actually being able to go the mkt and DO the grocery shopping....

Managing to keep ourselves clean and presentable is a major, major energy output. I remember weeping every night as bath time rolled around. I'd long since given up on showers, because I couldnt stand long enough to lather up, let alone rinse myself off. But the nightly bath, a standard I just couldn;t let myself fall below without feeling like ' ...game over ...', was screaming hell.


It often still is. And yet I persist, to DB's great relief .....

Spoons may make sense to members who are functioning, to whatever degree, in "The Real World", but to many of us, it's pretty close to useless, since almost any effort lays us out flat, and becomes a saddening reminder of how far behind we've fallen.

 

wabi-sabi

Senior Member
Messages
1,458
Location
small town midwest
Spoons may make sense to members who are functioning, to whatever degree, in "The Real World", but to many of us, it's pretty close to useless, since almost any effort lays us out flat, and becomes a saddening reminder of how far behind we've fallen.

Yep, I feel you on that one. Showering makes me crash every time. I still do it, when I'm terribly itchy and can't stand the smell, but also when I have the ability (like enough food cooked and ready to zap in the micro) that I can crash safely and still be able to feed myself.

I still find the idea of spoons theoretically useful and I can use it to manage how badly and how frequently I crash. But I have passed the point where I am able to prevent crashing unless a homehealth aide, housekeeper, chef and chauffer magically show up on my doormat for Christmas.
 

gbells

Improved ME from 2 to 6
Messages
1,491
Location
Alexandria, VA USA
Spooning is a great theory, and it may work for members whose condition is mild, and isn't too debilitating.

For a lot of others, tho, the concept of even 3 ingredient dinners is like a dream to aspire to. And making " ..only ..." one or two trips up to the third floor after grocery shopping in order to bring in the bags is another aspirational hope, along with actually being able to go the mkt and DO the grocery shopping....

Managing to keep ourselves clean and presentable is a major, major energy output. I remember weeping every night as bath time rolled around. I'd long since given up on showers, because I couldnt stand long enough to lather up, let alone rinse myself off. But the nightly bath, a standard I just couldn;t let myself fall below without feeling like ' ...game over ...', was screaming hell.

It often still is. And yet I persist, to DB's great relief .....

Spoons may make sense to members who are functioning, to whatever degree, in "The Real World", but to many of us, it's pretty close to useless, since almost any effort lays us out flat, and becomes a saddening reminder of how far behind we've fallen.

I understand where you're at. As an ME patient I have a very high level of functioning. Frankly, if I was at that level I wouldn't be able to maintain my Section 8 apartment (there is a mandatory yearly inspection) and, since I have nobody to take care of me, I would die. My lease specifically states that the apartment must be clean but they usually don't enforce it except for inspections. Hypothetically, if you don't ask for a reasonable accommodation for advance notice for inspections (I ask for 2-3 weeks) HUD would fail the apartment and take my housing assistance away.
 
Last edited:

IThinkImTurningJapanese

Senior Member
Messages
3,492
Location
Japan
I can't remember the member who first said it, but I have to agree with them. I have to rely on push and crash to get anything done. :D

I take baths less often and usually just wash my face.

I do this as well, something has to be dropped, especially during the winter when it's more reasonable. But in doing so, I find I'm missing one of the major detoxification pathways.

And of course, steam helps with keeping sinus cavities healthy.
 
Last edited:

YippeeKi YOW !!

Senior Member
Messages
16,047
Location
Second star to the right ...
Frankly, if I was at that level I wouldn't be able to maintain my Section 8 apartment and, since I have nobody to take care of me, I would die.
I'm not sure which is worse .... living with the fuller spectrum of ME debilities, or having that possibility hanging over your head, and the constant dread that would accompany that.


Personally, I think the constant dread would be worse. I'm truly sorry that you have to live with that potential dogging your heels, day in, day out.
ME kills most people by either suicide or cancer eventually
By ' ...most people ...', I'm assuming you mean the fairly small number of ME patients who actually do die from ME, yes?


I wasn't aware of the connection between ME and the eventuality of cancer. That's a frightening possibility. Can you post some studies or citations? I did a quick google and couldnt find anything specific, so I'd be deeply grateful....
I have to rely on push and crash to get anything done. :D
I'm with you. If I can work up the motivation to get something done and actually have enough oomph that day to do it, there's no way that I can stop when it would be prudent. It's not like I could just pick up where I left off the next day. Or week. Or whatever ....


It's a bitch .....

EDITED .... for that irritating loooong empty space at the end of my post. Slight OCD. Can;t help myself ....
 
Last edited:

gbells

Improved ME from 2 to 6
Messages
1,491
Location
Alexandria, VA USA
I'm not sure which is worse .... living with the fuller spectrum of ME debilities, or having that possibility hanging over your head, and the constant dread that would accompany that.

Personally, I think the constant dread would be worse. I'm truly sorry that you have to live with that potential dogging your heels, day in, day out.

Recognizing what will happen allows me to prepare, reducing stress. I know I have to get the immunotherapy right and that makes me do the cost to benefit to weigh the risks of side effects from the treatment against dying from cancer. If I just went into denial it would just cement the outcome. As the Rush song Freewill goes,

"When I choose not to decide I still have made a choice."

By ' ...most people ...', I'm assuming you mean the fairly small number of ME patients who actually do die from ME, yes?

I wasn't aware of the connection between ME and the eventuality of cancer. That's a frightening possibility. Can you post some studies or citations? I did a quick google and couldnt find anything specific, so I'd be deeply grateful....

The causes from death were determined here:

Chronic fatigue syndrome (CFS) is a debilitating illness affecting thousands of individuals. At the present time, there are few studies that have investigated causes of death for those with this syndrome. The authors analyzed a memorial list tabulated by the National CFIDS Foundation of 166 deceased individuals who had had CFS. There were approximately three times more women than men on the list. The three most prevalent causes of death were heart failure, suicide, and cancer, which accounted for 59.6% of all deaths. The mean age of those who died from cancer and suicide was 47.8 and 39.3 years, respectively, which is considerably younger than those who died from cancer and suicide in the general population. The implications of these findings are discussed.

(Jason LA, Corradi K, Gress S, Williams S, Torres-Harding S. Causes of death among patients with chronic fatigue syndrome. Health Care Women Int. 2006 Aug;27(7):615-26. doi: 10.1080/07399330600803766. PMID: 16844674.)

This article suggests that chronic multiple viral infections are causing ME. HHV6 virus causes abnormal ECG rhthyms (suggesting heart disease) and depression. EBV predisposes to cancer. Both are very common in the population (around 70%).
 
Last edited:

gbells

Improved ME from 2 to 6
Messages
1,491
Location
Alexandria, VA USA
Managing to keep ourselves clean and presentable is a major, major energy output. I remember weeping every night as bath time rolled around. I'd long since given up on showers, because I couldnt stand long enough to lather up, let alone rinse myself off. But the nightly bath, a standard I just couldn;t let myself fall below without feeling like ' ...game over ...', was screaming hell.

I'm the same with showers, they are a once in a while thing. Usually I take baths but getting out of the tub is difficult. I have clamp on and suction cup handrails installed to assist. It's gotten easier with more energy but it still isn't easy.

As for appearance, I tend to let that go unless there is an occasion where I need to look good. I tend to:
  • Trim beard with short clippers instead of shaving.
One thing I've learned by being relatively poor (low end of middle class) is that society targets you as an easy mark and that you have to anticipate a lot of problems, catch developing problems early and have systems in place to deal with them.

Here are some traps I've dealt with,
  • An apartment complex was negligent in fixing known roof leaks. When I demanded they repair them correctly they exaggerated a tenant's complaint and filed for eviction in small claims court with the false claim that I was stalking them. Because I belonged to Legal Shield I was able to have an attorney defend me in court and settle it so I could move out. Falure to win the matter would have cause loss of my Section 8 housing assitance.
  • Incorrect Sec 8 information which nearly doubled my rent so it was no longer affordable. I had to investigate, fully audit the figures and submit complaints to the appropriate channels in the correct way and this resulted in bringing rent back down to an affordable level. Many tenants who failed to do this ended up evicted due to unaffordable rents.
  • SSA disability hates young males (I was 38) because it doesn't want to pay years of claims and rejected my claim. I had to get additional neuropsychological testing to prove that I had a non-ME disease diagnosis, nonspecific somatoform disorder, and won the case on appeal after the ALJ hearing. I have met numerous homeless people who failed to win disability despite being disabled because they didn't learn about the many traps relating to disability claims. These include.
    • Technically rejecting patients who saw nurse practitioners or physician assistants as their primary care doctor.
    • Picking a doctor who doesn't believe in disability and/or doesn't properly document functional capacity and symptoms on visit notes.
    • Picking a doctor who won't sign off on supplements so they can be deducted from income when determining Sec 8 rent.
    • Not hiring a lawyer when reconsideration is denied.
  • Having ways to minimize dental expenses.
    • Living within commuting distance to a dental school.
    • Keeping a Physician's Mutual dental insurance reimbursement policy to reduce costs.
  • Lowering Food costs
    • When at the supermarket entering the expiration date for expensive meats (organic whole chicken) in my calendar and then showing up the day before to get a markdown.
    • Picking up free food from churches when they have food bank events.
    • Shopping at the lowest cost supermarkets (Aldi, Walmart) or online to get the best price. Asking for a discount on items in dented cans.
    • Identifying the lowest cost item sizes which sometimes isn't bulk.
    • Preparing items at home instead of purchasing them prepared if it saves money.
    • Shopping at dollar stores (Dollar Tree).
    • Purchasing surplus during sales if the item will store well and is regularly used.
  • Lowering shopping costs
    • Price comparing from different online stores (Amazon, Aliexpress, Ebay), dollar stores.
    • Purchasing electronics at discount on Ebay but only if marked as new or have a decent warranty from the seller.
    • Buying the previous version of an item if there isn't a compelling feature that is needed so demand and price are lower.
    • Shopping used at thrift stores and pawn shops but pretreating risky items (seal in a plastic bag with a No-pest strip 10 days) to prevent bedbugs.
  • Lowering car repair costs
    • Locating qualified mechanics who do side work and buying parts online.
    • Researching car problems to find solutions before problems get bad.
      • Using Tribotex products to fix car minor engine and transmission wear.
      • Increasing oil viscosity to compensate for reduced oil pressure due to worn engine bearings
Doing this allows me to have a sufficient buffer to generate positive cash flow, and live quite well considering my situation. People without these skills live on the edge and are devastated when callamity strikes.
 
Last edited by a moderator:

YippeeKi YOW !!

Senior Member
Messages
16,047
Location
Second star to the right ...
This article suggests that chronic multiple viral infections are causing ME.
Yes, among many other ME-causative subsets. I fall into the EBV/viral infection subset. Others fall into the CCI subset, etc .... there are quite a few different, which is why this creepy little haunted house of an illness is so hard to diagnose, other than elimination tests for other illnesses that could cause the same symptoms, and so very, very difficult to treat with any repeatable success.
HHV6 virus causes abnormal ECG rhthyms (suggesting heart disease) and depression. EBV predisposes to cancer. Both are very common in the population (around 70%).
These more or less track the gen pop in terms of morbidity.

And using 166 already fairly compromised patients as a reliable indicator of the over-all, full ME population of several millions seems like sloppy science to me, by researchers who were aimed at a producing a particular determination.

There's a lot of effort in various ME communities to maximize the severity of ME outcomes, ie, morbidity, in order to get lobbyists behind a push to extract more gov't funding for research and development aimed specifically at the ME/CFS population.

While I applaud any effort to generate greater interest in and knowledge about ME, I think that this kind of somewhat disingenuous juking of the stats as well as their possible, unproven, implications, has the opposite of the intended effect; it opens patients up to even greater dubiety (if that's possible) among the medical community, already anxious to dismiss us all as head cases. This kind of manipulation of 'facts' just increases their resistance to taking us seriously.
 

YippeeKi YOW !!

Senior Member
Messages
16,047
Location
Second star to the right ...
As for appearance, I tend to let that go unless there is an occasion where I need to look good. I tend to:
I go for the bare minimum: I put my hair up in a poufy, messy bun, and slap on some lipstick on my better days, which almost always makes me feel a little better than I would otherwise.

But I've been living out of the same three sets of loungewear, which have now been laundered so often down the years that they're falling apart .... which is pretty depressing. As is my general disinterest in spending my available energy on-line, looking for replacements. I'd rather spend it doing research, or even just hanging in the community lounge threads if focus and cog are totally whack that day.
 

gbells

Improved ME from 2 to 6
Messages
1,491
Location
Alexandria, VA USA
And using 166 already fairly compromised patients as a reliable indicator of the over-all, full ME population of several millions seems like sloppy science to me, by researchers who were aimed at a producing a particular determination.

Given that it matches what we have learned about the viruses I think it's valid. Remember, you just need 30 patients per group to have statistical significance.

I fall into the EBV/viral infection subset. Others fall into the CCI subset

Given that the CCI patients aren't cured from ME what I think is going on is that viral ME predisposes people to CCI so the CCI patients also have viruses.
 

Wolfcub

Senior Member
Messages
7,089
Location
SW UK
Thank you for all those tips @gbells :thumbsup:

I agree with @YippeeKi YOW !! that many with ME/CFS can't even utilise some of those tips, but it would certainly help if one was able to function to some "normal -ish" extent.
I feel crappy most days, but have to remind myself that I am still literally able to do many of the things that for some, would make them crash just to think about them.

"Literally able" does not mean "wise to do". But I live alone and have little choice.

I used to have a shower every morning, but now I can't manage the shock of it all.....the cold bathroom (no heating in there and no way to get any as the stove's warmth is very vague upstairs).....the standing, sluicing myself down. I would start to shake all over and feel nauseous. Then my legs would threaten to collapse. I didn't want to lie naked soaking wet on a cold bathroom floor.

So now I have a bath every other day. The bath is easier. I went seven days without any kind of major wash....just wipes.....during Covid, and found I didn't stink at all. (nope -I didn't lose my sense of smell, even though that's supposed to be a symptom)
So I definitely think many of us are trying to live up to standards that aren't even necessary, or possibly even feeling guilt about not being able to. Aren't we supposed to be squeaky clean?? Isn't that "normal"??

Hair wash? Once a week. Sometimes 10 days. Once I went 2 weeks. Does my hair stink? Nope. I do what African women do and "smoke it". I burn frankincense and Myrrh or some other nice thing on a charcoal on a big river rock, and let the smoke go through my hair. Plus I put drops of lavender oil on it with a tiny drop or two of almond oil, and comb it through.
Actually, my hair is in far better condition for not washing it too frequently. No more split ends.
Who made the "wash your hair every day" a rule? Huh?
 

YippeeKi YOW !!

Senior Member
Messages
16,047
Location
Second star to the right ...
@gbells
I think that you're wrong on both counts.
Remember, you just need 30 patients per group to have statistical significance.
A group of 30 patients would be laughed out of any consequential consideration of whatever the results were. Given that there also was no time frame given for the expression of those results, they become even weaker. This is, at best, poor science, and at worst, poor, self-serving 'science' ....
Given that it matches what we have learned about the viruses I think it's valid.
You'd have to include a precis of your understanding of what it is that we've learned about " .... the viruses ...", and which viruses precisely, before I could agree or disagree, but considering the not inconsequential confusion there is about many facets of all Corona viruses, from the common cold, which hasn't yielded much to any treatment thrown at it, to COVID, which has swept thru this country and the world like an unstoppable scythe of death, as well as the hit-and-miss nature of the annual flu vaccines, it seems that there are substantial gaps in our knowledge.
Given that the CCI patients aren't cured from ME what I think is going on is that viral ME predisposes people to CCI so the CCI patients also have viruses.
That is such a huge, unsupported assumptive leap that I can only hope you have a jet pack to soften the landing, doncha' know :jaw-drop::jaw-drop: :) .....

I don't really have the energy to keep at this, so let's just accept that you have your view, I have mine, and let it go at that. Otherwise, we can expect a visit from the already over-stretched mods, who deserve better treatment .....

Here's a link to a thread I think you'll find really interesting. THe articles neither support nor refute either of our positions, they're just really informative and useful, and might provide information that could help in dealing with the effects of ME, COVID, etc ...

Antivirals Effective Against Coronavirus, PR
https://forums.phoenixrising.me/thr...gainst-coronavirus.79014/page-20#post-2311736
@dave11 ’s links …. the first ones I’ve read are just chock-full of useful information

EDIT ... for really stoooopid typo. Tyops. Whatever. And I'm just going to let that last one stand....
 
Last edited:

Wolfcub

Senior Member
Messages
7,089
Location
SW UK
You'd have to include a precis of your understanding of what it is that we've learned about " .... the viruses ...", and which viruses precisely, before I could agree or disagree, but considering the not inconsequential confusion there is about many facets of all Corona viruses, from the common cold, which hasn't yielded much to any treatment thrown at it, to COVID, which has swept thru this country and the world like an unstoppable scythe of death, as well as the hit-and-miss nature of the annual flu vaccines, it seems that there are substantial gaps in our knowledge.
I definitely agree with you about that.
 

YippeeKi YOW !!

Senior Member
Messages
16,047
Location
Second star to the right ...
We are soooooo on the same page .....
Hair wash? Once a week. Sometimes 10 days. Once I went 2 weeks.
I'm now on my 5th week because, you know, just can't.

Like you, I've found helpful work-arounds, and my hair doesnt smell and seems to be in generally better condition than the every-other-day punishment ....

I think I'll try your 'smoking' hack ...... or maybe because I burn incense pretty much constantly, I already am in a small, indirect way ....
Who made the "wash your hair every day" a rule? Huh?
I have no idea, but I'd looove to treat them to a few rounds of ME and see what that produces by way of attitude adjustments ...

Good to see you around, Howlin' .... sending a large, largely unshampooed hug :hug::hug::hug: :woot::woot: