That is a tough one. I've often described how I feel as "all my life force had washed out of me" or}the bottom fell out". Both these statements are inadequate just like tiredness, fatigue, brain fog, lethargy and depression all rolled into one horrible feeling. I don't think anyone can know what it feels like unless they have experienced it themselves. It helps to surround yourself with empathetic people.

blancorivergirl - thanks for responding to my email. My husband keeps pressing me for how it actually feels inside. I don't know if it's the writer in him or what, but then he says I have to know how to tell the doctor. I haven't been diagnosed yet, but so far other things like MS, Lupus, etc. tests are show normal. I have my second time with the Neurologist on the 19th. I'd more experiences with longer recover times then before my first appointment. I felt so fatigued I could hardly tell him, a stranger, how I was doing. He spent so much time looking or typing on his laptop....I wasn't used to that. He cut my husband off once at the beginning of the appointment which threw me too. I felt like I was exhibiting but he didn't know me to know this is not how I am before all of this happened.

It's soon to be 4 months from onset. How do you keep yourself together while you wait between doctors appointment and tests. My world has gotten so much smaller. I'm trying to keep myself emotionally stable with al of this. Any recommendations?

The only way I've ever managed to get a sense of it across is through my poetry. This one isn't only about the aspect you're asking about, but I hope it might help. I have printed out a copy which I am going to give to my doctor the next time I see her in hopes that it will help her understand.




They dont understand, but how can they?
I tell them that I am tired all of the time
and they imagine the tired they know
Its a tired that ends.
Their tired starts with a lack of sleep
or busy-ness or hard work.
There is something out there causing it
something which can be pointed to,
understood.
They know the cause and the cure.

Circumstances might trap them and they
fight on through the barrier,
endure.
Its hard, wearying, a tough grind
which can shred your nerves
make you want to cry.
I remember that kind of tired
I yearn for it.

I have fond memories of muscles
worked to their limits,
Of being tired and knowing there was
a job well done.

There are less fond memories of all night
at a hospital, worrying,
And the day which followed and had to
be faced despite lack of sleep.
I also remember illness that left me drained,
too wrung out to care about anything
but resting.
Even depression has touched me,
dragged me down,
made me feel useless.

Yet now I would welcome those fatigues
all but the last.
It hovers too close, ready to take me again
should I cease to fight it.
And fight it I must, constantly,
because the others are gone.

I no longer have the job well done,
nor satisfaction in accomplishment.
Now a joyless triumph is getting the laundry done,
or the dishes, before sinking into exhaustion.
It used to be that to read a book was to rest.
Now it is a task so often beyond me.





19.12.11





One of my greatest joys has always been
to create, to produce: food, craft, words,
a recreation to build me up.
I no longer have the energy for that,
even in the most basic form, for days on end,
sometimes weeks.

All too often I cannot drive, my mind too much
of a fog, my concentration gone.
Nor can I enjoy the simple things:
a walk along the beach,
a lunch with friends.

So I am trapped alone with the little I can do,
computer and phone linking me
to the outside word.
Television and video save my sanity
for the most part.
When days turn to weeks and months pass
a solid diet of nothing more palls.
I was not designed to simply sit by,
turn off my brain and vegetate.

Then there are my bad days, when I
cannot achieve anything
cannot create, cannot read
nor even watch.
My brain will not hold thoughts,
my body too tired to move.
My limbs may as well be lead,
the fatigue so bad that it
almost hurts.
And there is no relief because neither can I sleep.
To surrender to gentle slumber
would be bliss.
Oh, I dont not sit up into the night, tired but
wakeful in the darkness,
frustrated.
At least, not often.
No, I sleep easily nine hours a night,
quite often more
and wake unrefreshed.
My body clock says time to rise and will not
be ignored, so I obey.
And face the day exhausted but not sleepy
condemned to wakefulness.





Yet some things have to be done.
I prepare breakfast, eat it
and then rest.
I force myself into the shower,
struggle through washing
sway with fatigue as I dry
and then rest.
Shopping for one does not weigh a lot
but a supermarket is a long trudge.
Its harder to push myself than the trolley
at least it provides support,
something to lean on.

I put it off as long as I can but the time comes
when it can no longer be delayed.
And each time I pay the price for pushing on
for days after.
Muscles burn from the smallest effort
my head swims, wont remember,
thickly hurts.
My breath grows short, it is hard to
balance well enough to stay upright.
And I must rest a few hours or a few days
before I can venture out again.

Yet none of it really shows,
other than in my slowness.
When I meet people, I talk to them,
smile and sometimes laugh.
To do less would be to give up, fall back
into the pit of depression
to fail.
Most get my standard reply, Oh, not too bad,
after all, if I was bad, I wouldnt be there
but at home, resting.
To a few I know well and trust, I tell the truth,
Tired.
So much in one small word.
They encourage me, wish me well
but they dont understand.
They think that with rest I will recover
after all, they do.

Even those who come closest get it wrong
Just do what you can, they recommend,
gradually build up.
Thats when I feel like crying again.
The basics they barely notice are beyond me.
Already I do more than I can.

Like today.
The pressure built up too much, the frustration
had to be released.
So I put down the words.
Now its time to pay the price
and rest.

Oops, I forgot to allow for the formatting and the date I wrote the poem has ended up in the middle of it instead of at the top of the second column.

Thank you the poems help me feel a kinship and some understand of what I am going through. Thank you for writing them and sharing them.

I fortunately have a husband willing to shop for me, however early on I do go with the cart. I've even thought about tootling around on the motorized cart, but I feel even that would wear me out. I try to us time out of the house to go to church for a little while. There getting myself down the hall and set up in a foyer chair that is brought into the chapel set between the pews for me when I can come, as the pews make me work to hurt to support my body. I pad the arm rests with crocheted shawls and put a small pillow behind my head to get kind of a support more relaxed position. It has so far helped me get to stay longer. I can sing in my Alto voice but not in the choir. projecting is to much work for my body. I haven't been able to perform in the two choirs I've been involved in, but I am thankful that I can at least sing the hymns out loud in a quieter volume. I usually have to come home and lay down for a while then if I'm doing OK I'll have lunch and then recline or lay back down for a while longer. It's to much to curl my hair and put on all the beauty products, skin care, and so I just keep it simple with eyeliner and blush and lip gloss. I put my hair up in a clip because it's so wild otherwise and make sure if I wear a necklace that's lighly weighted. I still try to go looking like me as much as possible but making sure it's not to much fuss to get on. Days before I have my hair washed because I can't wash my hair even with only one time thru now, and seated, and have to dry hair naturally as its to hard to blow it dry now without a lot of extra resting in between. I can't do this shower before 10:00 church otherwise all my energy is spent getting ready instead of being there. My meal is something fast and easy because I can't stand on my feet longer then 15 seconds without feeling like I need to sit down. I thank the Lord above that I was able to have one blessed day at the beach in Monterey before this terrible thing came on me.

I have nine doctors, and lots of well meaning family that didn't get it for a long time regarding my fatigue.
I've found the best way with both sets of people is to start with something they may have experienced, which is the flu. I tell them that having cfids is like that day after the worst day of the flu. You can get out of bed but it's a terrible effort and you tire quickly and are so weak and achy and still can't think straight. Then for new docs, I show them the info starting that patients with cfids are as tired and weak as those with end stage cancer or aids...and with family I use the spoon theory, they get that concept easier http://www.cdc.gov/cfs/symptoms/index.html
http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

That second link you shared is a real gem Nina.

Hi, dear. Wow, it's a loaded question, isn't it? How do you describe it to someone who is inclined to not believe you to begin with? Sure, there are doctors who will believe you. I was diagnosed at Johns Hopkins in Maryland. They do understand there, but none of my local doctors have ever understood. There really aren't words to describe that crushing exhaustion that comes 2 or 3 days after doing too much. It often takes me by surprise. Like 2 days later, I'll be sitting there thinking, "Why am I in so much pain and want to lie down all day?" So, then I have to backtrack and then I remember what fool thing I did that I'm suffering for now. I think the thing that the doc or your friends will have trouble identifying with is the fact that the exhaustion never really goes away. It just gets worse at certain points. So, even describing it like as if you "had the flu" still doesn't give the same meaning as what you face every day. Probably the issue is to find a doctor with empathy (good luck!) and when you have that doctor, he may be more willing to really listen to what you are saying. Many blessings.

Thanks ladies. I'd seen something about spoons but didn't know the story. I saw it on pintrest. I grew up in Glen Burnie, MD and was seen at John Hopkins as a teen for other reasons. My parents still live there. I hope I'll be able to find someone who understands doctor wise. right now their in the elimination stage.

I guess I did something that spend all of my morning spoons, as I got completely ready and then couldn't go to church. I knew that if I did I'd just be coming right home before getting there. I was in bed all quiet with my mind going for 4 hours. I sat up and had lunch my husband fixed then I've been reclining on the couch on my Kindle Fire.

How do you figure out how many spoons you have? Is there any way to figure that out?

Blancorivergirl last night I said to my friend that I feel so scared about how my body feels when I feel so depleted, that I feel like I'm laying on the edge of a cliff or the edge of my bed felling that any moment I might fall off. I told her that if I would get any worse I'd probably want to go to the emergency room. I told her that that is why I'd would have my other friend call me every 15 minutes and told her how to get into the house if I didn't answer. As symptoms get feel a bit better then I lengthen out the time. I do that when my husband is away at work quite a distance away. Today I didn't feel quiet that very bad point, but those are the experiences when it takes me days to get back to my new "normal".

How do you know how many spoons?
It comes with time and experience, but you could try a backward situation where you literally take spoons, put them in a cup and take one out when you do something and see how many you use before you exhaust yourself. In time it will be instinctive and you'll be able to convert the spoons thought process to energy when you wake up in the morning.... like knowing how much gas is in the tank as it were. (I like muscle cars)

I came across this description yesterday after a massive crash while my elderly mother was visiting. It's the best description of what I've been going through for 30 years that I've come across:

"The CFS label is misleading because profound fatigue is only one of a constellation of symptoms associated with the condition as noted below. What has been referred to as fatigue is much more closely akin to a dramatic collapse of both physical and cognitive abilities."

I love the term 'dramatic collapse of both physical and cognitive abilities' as that's what happens to me.

Here's the article it's from:

http://www.cfsknowledgecenter.com/mecfs.php

Look into the role of D-ribose and magnesium in CFS/ME/fibro. I started taking high doses of both a few years ago and my energy increased to the point I've actually had a partial life. I've had this for over 30 years and was to the point going to the grocery store wiped me out of days, but do okay overall so long as I stay within my comfort zone.

How do you know how much to take?

I've done a lot of research, seen a naturopath, had vitamin injections and been told by him that he believes my body doesn't hold onto nutrients so I experiment with the magnesium to see how much it takes to get me to sleep, keep my gut functioning and prevent muscle spasms. I take 800 to 1100 mg of magnesium a day depending on how I feel. I spread it out over the course of the day, and often use transdermal magnesium oil as it helps raise the cellular magnesium that is generally very low for fibro/CFS/ME sufferers. You need to take calcium, vitamins D3 and K2 with it for them to be absorbed properly, and it's best to take it on an empty stomach if possible. Check out the work of Drs Carolyn Dean and Mark Sircus on youtube for more info.

With the D-ribose I also go with what it takes for me to be able to function at somewhat of a normal level. When I've overdone it, I take extra as I've found there are times I'm literally too tired to sleep. The D-ribose has made it to where my crashes have gone from 6 weeks of doing nothing but laying on the couch or sitting on the computer to about 3 days of that. I'm at the tail end of a big crash thanks to the D-ribose.