Article Looking Ahead to a New Year With ME/CFS

Looking Ahead to a New Year With ME/CFS

by Jody Smith​

Hey, it's the beginning of a new year. And 2020 has a nice fresh ring to it. This time of year are you thinking about the future? I'm not talking about New Year Resolutions. I ditched those years ago.

Me, I have a hard time looking to the future. When it comes to scheduling and planning and organizing, I can only deal with a couple of weeks at a time. But I am not one of those people who has a One Year Plan, a Five Year Plan ... and I can't even conceive of anything further ahead than that.

I envy those people who do this, quite frankly. But ... my brain can't handle it and I'm afraid to look forward. And besides that, any plans I might make are liable to be overturned against my will at a moment's notice.

Starting a day or two before any appointment or coffee date or family event, I begin hoping that I won't get up crippled or addled, and have to throw everything over yet again.

At the beginning of any business phone call or conversation with a clerk in a store, I have in the back of my mind a concern that I could suddenly lose the thread completely as a mental haze descends upon my ability to form thoughts and words.

So I have a certain distrust for the usefulness of planning. I have learned that no matter how intensely I want to do a thing, no matter how important it might be to me or to others ... this doesn't guarantee that I will be able to follow through.

Mind you, I do make plans, but they are almost always tentative, penciled in as it were, with the oft unspoken understanding that it may never happen. All concerned must be aware that I may have to back out without notice.

Let's say I've promised to babysit one of my grandchildren on a particular day. And let's say that the night before, my foot (or arm or shoulder — take your pick) begins to ache, swell and become weak and limited in motion. And let's say by the next morning it's gotten so bad that I have to phone and cancel and leave my family in the lurch.

Or maybe it hasn't gotten too bad, and I decide to risk it. And halfway through the day I realize I am not going to be able to lift my arm to carry that grandchild or turn the steering wheel or get my coat on ... And someone has to come and rescue me.

Family birthday get-togethers have been torpedoed because I am too unwell to be able to sit in a chair without severe pain, or I am dressed in a ratty night shirt and housecoat, due to being slathered with castor oil.

If I've recuperated somewhat over a period of days or a week or more, maybe we can go ahead with our plans, but the grandbabies have to be restricted in how much they can climb on me because just one wrong move can throw me back into a relapse.

Or let's say I have a dentist appointment. And the night before the muscles in my neck or shoulders start to cripple up. Or my foot becomes swollen and I couldn't put my shoe on if I tried. I have to cancel my appointment on the day of, and either have to pay anyway or at the least be an inconvenience for my dentist.

When this kind of unpredictability is on the agenda, let's face it. Planning is for suckers. For masochists who like to disappoint themselves and others.

And events have to be chopped up into little pieces if they are going to work well without sending me into a crash. I was out grocery shopping the other day — something which I know many of you can only dream of doing. I know I am fortunate to be able to do it at all. There have been several years when I could not.

I'd been in the store for an hour and a half. My head was getting fuzzy, it was getting hard to focus on my list. I had to lean on my cart because my legs were getting heavy and I was feeling out of breath. This all caught me by surprise since I hadn't felt that way entering the store.

Then I looked at my watch and all was made clear. After 90 minutes, I run out of steam, for just about anything. I have developed such a habit of dissecting my days into 90-minute increments or less that ... sometimes I forget that I really can't last longer than that. It was time to drag home and be mindless for the rest of the afternoon.

I am healthy enough these days that I do tend to forget that I have limitations. And I know that most of the world to look at me would have no idea that there is anything amiss.

People may know that I visit my dad at the nursing home or babysit my grandchildren. They'll see me in stores in my town, in a restaurant with a friend. They might see me driving a car or going for a walk.

And that's why I write about it. Because whether it looks like it or not, for me and for the ME/CFS community around the globe, there is something wrong. And it's important. And other people should know about it.

Because while we may look alright when/ if they see us, we're not. Because while maybe there are things we can do — perhaps there's lots of things we can do — we are constantly defined and restricted and molded by all the things we can't do anymore.

I can't drive to the city. I can't fly on my own because what happens if my brain winks out mid-way? I can't follow a conversation involving numbers to save my soul.

The other day I was talking with a young freelancer, about what is a good wage ... and within minutes I had to terminate the conversation because the numbers were all jumbling in my head. I knew I had experience that would have been useful but I was helpless to be able to formulate or present it.

I can't work in a store or a restaurant, both of which I have done in the past. I can't commit anything to memory, I must write down everything if I don't want to forget. I can't carry on a philosophical debate for more than about 10 minutes before my grasp of the language and ability to enunciate my words begins to deteriorate.

For some reason I can write for long stretches. And I make use of this ability here, and anywhere else I can to draw attention to my community.

By nature I'm a pretty private person. Sometimes I look at what I share with the rest of the world and I am amazed at myself and what I'm putting out there.

But I never question why I do it. We are papering the Internet. For every one of us that can speak with our voice, we represent countless others who cannot. And we'll keep doing it till all our invisible members are acknowledged and cared for.

How do you deal with planning for the future?

Image by Vitali Kalasouski from Pixabay

 

But I am not one of those people who has a One Year Plan, a Five Year Plan ... and I can't even conceive of anything further ahead than that.

Do any PWME have a five year plan? I think a day or two ahead, and plan to go into town again in around 3 weeks when my latest batch of library books orders come in. I might have a seasonal project, but that's more of a day-by-day thing with a distant finish somewhere.

As I see it, any long term plan depends on probabilities in the same range as the chance of researchers making a breakthrough, which would change everything, so there's no point in planning.

 

What an astute and insightful article @Jody. Home Run There!!!

A goal for one year from now was recently- discussed here. I considered it and maybe put it on an internal goal calendar. (Me relocate to a foreign country, and then manage this situation from there, instead of here).

If I just do small individual actions...and maintain calm, this is possible. I CAN DO THIS.

 

Do any PWME have a five year plan? I think a day or two ahead, and plan to go into town again in around 3 weeks when my latest batch of library books orders come in. I might have a seasonal project, but that's more of a day-by-day thing with a distant finish somewhere.

As I see it, any long term plan depends on probabilities in the same range as the chance of researchers making a breakthrough, which would change everything, so there's no point in planning.

Wishful,

I couldn't have said it better myself.

 

What an astute and insightful article @Jody. Home Run There!!!

A goal for one year from now was recently- discussed here. I considered it and maybe put it on an internal goal calendar. (Me relocate to a foreign country, and then manage this situation from there, instead of here).

If I just do small individual actions...and maintain calm, this is possible. I CAN DO THIS.

Thanks Rufous

Small steps over a period of time -- that is the way I get anything done. Good luck with this!

 

Do any PWME have a five year plan?

*raises hand*

Life happens, but it's actually a good thing to have a roadmap to consult when the brainfog descends. Planning, and then knowing it needs to be reviewed regularly, and sometimes changed at the drop of a hat. It semi-works.

 

so there's no point in planning.

Don't lay out alot of plans here, either.

However, I have this unique dilemma- my one daughter moving to the foreign country, and then: when am I coming ?

Two days in Vancouver on Easter Weekend did not equal Foreign Travel. I could barely taste anything exotic (except the discover that there are two doors into a bar: one for men, and one for women escorted by a man. No door for unescorted females (this was 1974). And as I sit in this bar: they bring two beers, never one.

And people are whopping it up in a corner and I look up and pretty young gal is dancing with nothing but silk scarves. EGAD is this CANADA?

****
But somehow, I am to relocate to this foreign country, reside in an exotic place with this here ME. And the plan is: Next Feb 2021.

No wonder I dreamt- who is steering this car, clearly its not me.

 

Don't lay out alot of plans here, either.

However, I have this unique dilemma- my one daughter moving to the foreign country, and then: when am I coming ?

Two days in Vancouver on Easter Weekend did not equal Foreign Travel. I could barely taste anything exotic (except the discover that there are two doors into a bar: one for men, and one for women escorted by a man. No door for unescorted females (this was 1974). And as I sit in this bar: they bring two beers, never one.

And people are whopping it up in a corner and I look up and pretty young gal is dancing with nothing but silk scarves. EGAD is this CANADA?

****
But somehow, I am to relocate to this foreign country, reside in an exotic place with this here ME. And the plan is: Next Feb 2021.

No wonder I dreamt- who is steering this car, clearly its not me.

Wow! That's a big one Rufous! Good thing you have a year to work on this. Maybe it will be wonderful once you get to the other side of it though.

 

Maybe it will be wonderful once you get to the other side of it though.

Its is very wonderful there...and for me...it would be good to be in a new biome...as it generates more lift (that something, often in short supply around here).

So far- we visited for one whole month ...Then a year later we came for three months. Unfortunatly, my condition appeared to worsen between these two visits...and the three monther was pretty tough as PACING was really challneging. I talk...to my daughter I sing to the baby. Talking and singing- cause the Crash..

The other odd thing- is that here, I have very confortable chair and furniture to sit in....

There- its alot harder on my physical body. I can't sit here- on this wooden chair eating tacos. Ii've lost weight...and I am sitting on two bones. I was having to bring a pillow into the restaurant.

I can't hold this head up...odd things like that. Its four wheel drive, cobblestone and potholes...- the neck gets tossed about while driving..I had to not go on some of the drives.

And its really hard to get decent supplements.

Literally- they send the defective materials to Mexico. My daughter got a full refund from Bic on razor blades....they had no blades in them. But then sent them to Mexico anyway. SHe wrote and complained- they sent a check for 18$ American.

 

Its is very wonderful there...and for me...it would be good to be in a new biome...as it generates more lift (that something, often in short supply around here).

So far- we visited for one whole month ...Then a year later we came for three months. Unfortunatly, my condition appeared to worsen between these two visits...and the three monther was pretty tough as PACING was really challneging. I talk...to my daughter I sing to the baby. Talking and singing- cause the Crash..

The other odd thing- is that here, I have very confortable chair and furniture to sit in....

There- its alot harder on my physical body. I can't sit here- on this wooden chair eating tacos. Ii've lost weight...and I am sitting on two bones. I was having to bring a pillow into the restaurant.

I can't hold this head up...odd things like that. Its four wheel drive, cobblestone and potholes...- the neck gets tossed about while driving..I had to not go on some of the drives.

And its really hard to get decent supplements.

Literally- they send the defective materials to Mexico. My daughter got a full refund from Bic on razor blades....they had no blades in them. But then sent them to Mexico anyway. SHe wrote and complained- they sent a check for 18$ American.

Transitions are hard on us. We don't adapt well to new situations. I feel for you!

 

Its is very wonderful there...and for me...it would be good to be in a new biome...as it generates more lift (that something, often in short supply around here).

So far- we visited for one whole month ...Then a year later we came for three months. Unfortunatly, my condition appeared to worsen between these two visits...and the three monther was pretty tough as PACING was really challneging. I talk...to my daughter I sing to the baby. Talking and singing- cause the Crash..

The other odd thing- is that here, I have very confortable chair and furniture to sit in....

There- its alot harder on my physical body. I can't sit here- on this wooden chair eating tacos. Ii've lost weight...and I am sitting on two bones. I was having to bring a pillow into the restaurant.

I can't hold this head up...odd things like that. Its four wheel drive, cobblestone and potholes...- the neck gets tossed about while driving..I had to not go on some of the drives.

And its really hard to get decent supplements.

Literally- they send the defective materials to Mexico. My daughter got a full refund from Bic on razor blades....they had no blades in them. But then sent them to Mexico anyway. SHe wrote and complained- they sent a check for 18$ American.

@rufusmckinney
Hello.
A cobblestone street is my idea to of a nightmare. Been dealing with instability for awhile.

 

Do any PWME have a five year plan? I think a day or two ahead, and plan to go into town again in around 3 weeks when my latest batch of library books orders come in. I might have a seasonal project, but that's more of a day-by-day thing with a distant finish somewhere.

As I see it, any long term plan depends on probabilities in the same range as the chance of researchers making a breakthrough, which would change everything, so there's no point in planning.

@Wishful
I'm new here, but chose to put 2021 into my username for the declarational powers of hoping for something great next year.
But about your point of a five year plan. Five years ago, I embarked on trying to do everything to get rid of this illness. I thought often in those years, that I was 3-6 months away from my goal only to be thwarted from time to time with more wretched crashes (but also with great experiences in between).
Unraveling so many aspects and components of this disease is tiring and cumbersome in and of itself.

I was happy to make it to five months. And I'll be delighted to see the good things I hope my long 18 month journey has for me in 2021 which is seven months away. I'm actually dreading five years from now. I know the likelihood of my three most dearest animals and fur babies being on this side of the rainbow bridge will be minuscule.

Life of loved ones is very precious. My family has already experienced a loss from corona and it's cytokine storm. I lost a fur baby before my 18month crash and I've been preparing myself for how best to manage the grief should more family members or friends pass from the virus. I have several older family members with metabolic syndrome and they aren't yet willing to make the changes to get on a stronger metabolic path. I travel often to the doctors and who knows if I can fair a second exposure to the virus. (The first time was end-January when no one really knew that it existed, so testing wasn't an option).
When I was dealing with living day to day during the first 8 months of my epic crash, I took a lot of time preparing for what my heart and mindset would be should I be faced with those last 2-3 minutes. Was I okay with passing.... would by spirit and soul be settled enough in its groves and structure to leave (probably not peacefully) but at least toward peace and happiness.
My five year plan is to remember and stay guided by keeping my spirit's structure and guidance to be fulfilled in its needs. And hopefully to give generously to those that matter to me in a way that they can appreciate in some small way.
My family in their articulate and specialized lives and occupations are often quite brilliant folk. But like many brilliant doctors are clueless about this disease even after it is gently and harshly explained and referenced. I had misspent much of my energy trying to educate them. So not going down that path is part of my plan too. Should I become strong enough to travel, I do have a desire to see and spend time with them. But I'm not willing yet to hear their snide comments about why I've been away for years and years.
I am of the plan to do new physical things that help me create a stronger vestibular sense and patterns. I want to be delighted and humbly proud of little accomplishments. The other day I balanced on a tiny and mostly buried log at the beach. Not well and not graceful and truly only 1-2 inches above the neighboring sand, but it was a benchmark.
In five years, I hope I have a catalogue of good and joyful memories that while they will be insignificant to most like this one is, they will have me closer to my goal of having a great and rich life outside of this disease.

how about you? Since you wrote this earlier this year, did new things come to mind? Or different circumstances?
Thank you for writing your earlier post. It was a very therapeutic time for me to contemplate and then respond. What most ppl wrote were also things i very much vibe with too.
I'm new here and it's nice "meeting you."
Thank you.

 

Nothing new in my plans. In my 19 years of ME, I've learned that aggressively pursuing treatments...was a waste of time. The things that did work were accidental discoveries. I could make an effort to try lots of new things, to increase the chance of finding something else that helps, but raising the probability from something like one in a billion to 5 in a billion just doesn't seem worth worth the effort.

Biggest recent event? I evicted my woodchuck. I do try to get along with my wildlife, but this rodent just went a bit too far. I can accept it eating my spinach (I don't like it that much), but eating my little lettuce plants and my one lupine blossom was just too much. I expressed my displeasure with some burning rubber in its burrow (major stinky!), and filling the openings once it had fled. I'm surrounded by forest; it can make a home elsewhere, away from my garden.

Just idling through life...

 

Nothing new in my plans. In my 19 years of ME, I've learned that aggressively pursuing treatments...was a waste of time. The things that did work were accidental discoveries. I could make an effort to try lots of new things, to increase the chance of finding something else that helps, but raising the probability from something like one in a billion to 5 in a billion just doesn't seem worth worth the effort.

Biggest recent event? I evicted my woodchuck. I do try to get along with my wildlife, but this rodent just went a bit too far. I can accept it eating my spinach (I don't like it that much), but eating my little lettuce plants and my one lupine blossom was just too much. I expressed my displeasure with some burning rubber in its burrow (major stinky!), and filling the openings once it had fled. I'm surrounded by forest; it can make a home elsewhere, away from my garden.

Just idling through life...

The forest life sounds idyllic. I get to see redwoods, my favorite and everyday the tall swaying eucalyptus here.

a woodchuck? They are comical. Nice that you sent it away nicely. I used to do huge garden and landscape projects and then later, oversee them or just start pieces and then crash out. LOL.
Here however there are too many rabbits and deer and other eaters of roots. So I just enjoy what is here.
I am glad I pursued my biohacking therapies though. One shower in a week or bee hives of tangles in my hair and not being able to move about... well now occasionally twice a year I can manage the hair dresser and get to wash my hair almost whenever I want to. And prior to this big crash, it was a highlight of fun to go "jams and jellies" as my favorite interior designer on a home show calls toiletries. And on most days, I could carry the bag inside too from the car.
Did you in your list of things try PEMF therapy? I've met a man with ME who actually did it and b12 shots and lives a normal-ish life as of two years ago.
Mine enabled me to make long and slow hikes 45min-to occasionally 1.5 hours with my high energy dog. And then when I combined ketone esters with espresso and PEMF we could do 1 hour at a faster (albeit slow by everyone else's standard) take a good break and then do some frisbee training at the water's edge which she completely loved. The best year of my life so far.
I'm just about 1.5 months to being able to walk and I'm very hopeful that I can take her out into the redwood forest again.... 15 minutes would be just fine. She doesn't have a watch, so she's not critical of my abilities.
it was really lovely @Wishful to hear about your clever woodchuck eviction and your wisdom of 19 years. I'd love to whenever you feel so motivated to hear more of your wisdom. Thank you for this Sunday morning chat. I'm near the coast of the Monterey Bay in California. Where do you live?

 

The forest life is at least quieter than urban life. Not totally quiet, as the birds and frogs and other wildlife keep it from silence, in a nice way. Spruce, aspen, and balsam poplar here (Alberta, ~200 km west of Edmonton). I think going for regular long walks, or any other sort of significant exercise, does make me feel slightly better overall. I've been doing less walking than usual lately because it's either hot and buggy (mosquitoes), or it's too wet and I don't have comfortable waterproof footwear. Winter is limiting with deep snow, though I have gone for long snowshoe hikes.

No, I haven't experimented with PEMF, even though it would be simple enough for me to build a device (could probably cobble one together in minutes). I just haven't seen any scientific evidence to support it.

 

There are of course competing companies who say their tech is best. One says it must be nano second fast to really advance what happens or isn't happening in the ion channels. Others want to talk about frequencies and another about sound and frequencies.
I've two devices and am very thankful.
Each one has saved or combo of two but in different situations has saved 3 of my animals. My two kitties- one from severe cachexia and her third round of cancer and my senior dog twice - once from life threatening level of sepsis and currently from bladder cancer. A side benefit is his two cloudy eyes have cleared up. He's had them cloudy for about 1.5 years even though he's keto.
Everyone is different. Don't skimp on the copper. What I've noticed is the devices that have a very large amount for the coil are of course more expensive but also get better testimonials than the rinky dink ones.
Think copper so heavy that most ppl would say this is HEAVY.
I'd love to make a few myself too. But I'm afraid of soldering and electric cords.
Seeing numerous photographs from horse owners and hearing their experiences and how substantially their horses health improved is what sold me on that I was going to get one.

 

@Wishful see above ... forgot to tag you

 

But I'm afraid of soldering and electric cords.

I don't see why soldering would be scary, but you could build one with a solderless breadboard. Battery power should be adequate. The circuitry would be simple. Actually, you could program a computer to generate the waveforms, and connect the coil to the audio output (might need a simple amplifier to provide the proper voltage for the coil). It would be really quite simple, and give you far more options (frequency, waveform, power level) than commercial units, and could even add sensors to monitor heart rate, EEG, or whatever, so the program could sweep through different frequencies or power levels and plot any measurable effects, to find out what's optimum.

Look at https://www.picmicrolab.com/waveform-generator-using-raspberry-pi/ for an example of using a computer to generate waveforms. I haven't looked, but I wouldn't be surprised if someone has already posted a 'how to turn your computer into a PEMF unit' article. A PEMF unit is really, really simple. There's no reason why it should cost more than a few dollars, especially if you use a computer to generate the waveforms.