Frequently Asked Questions
What it's like for friends and family.
First I want to say how thankful I am to all of you, my friends and family. This page has three parts:
1) what it’s like for me (and other CFS patients) in dealing with friends family and work, public etc.
2) what it’s like to have a CFS patient in your home, as a friend, at work etc,
3) a bulletin board to post your reflections and comments
1) what it’s like for me (and other CFS patients) in dealing with friends family and work, public etc.
1a) The Spoon analogy is a helpful tool. Please click tabs below for three articles on spoon theory
1b) Frequent interactions (what wish was understood)
I wish I wasn't always 'going on about' CFS (and related illnesses) as I inside I'm not that negative/ill/complaining/upset person (which is part of why I cry out so much!), and of course would prefer anything to the experience.
Unfortunately I wrestle with feelings of not contributing enough, helping etc.
Please don't assume anything if I don't reply to texts/emails/calls and if I don't send texts/emails/calls as I'm likely in an episode.
Even when I'm doing well, I still have the symptoms and condition so still feel tired.
Planning the simplest things is difficult. For instance, going to lunch means being in public (getting dressed and ready, or being comfortable with being uncomfortable about being shabby) which means stimulus, and standing and sitting instead of the option to recline and interactions, and planning/arranging/navigating transport/parking/finding restaurants etc.) and other things that are simple to those without CFS - which can feel difficult to those with CFS. Sometimes we'll feel like we may be able to go yet want to retain veto rights without upsetting or repercussions, as we don't know our energy and focus level 10 minutes or an hour later, much less a day or more, this is common to those with energy challenging illnesses (such as Lupus and other autoimmune illnesses) as well as the depletition of energy and focus during outings felt by those with head injuries and other conditions involving dysfunction in executive functioning.
Though ridiculous I will go to great lengths for romance as it is theraputic and beneficial and that drive runs along older/sturdier channels (nurses remark how even the very ill eek energy/motion and drive for sex).
SUBJECT: What would like from you understanding and house examine my conclusions and ask others who could check site notes 5 and money and come over make plan visit my place, checkin on me with txt etc
When putting out there is not what intend or really the nature of that person and regular you feel bad when you're not able to help or all this regular things, wish could show up more and such, what is
but or being disappointing or every time I ask and it's like a thorn in your side because you just wish people would stop asking you anything to do anything at all I mean actually really anything is unfair but you try yourself and you somehow do it when you can but you have to keep explaining yourself which is frustrating because no one gets it and that's why I'm writing this the other thing that is a is a factor is that you're trying to do this tonight and you don't like to be a burning or seen that way but at the same time people expect stuff from you and so if you somewhat have it together they think you can do anything or stuff or whatever but also being out sometimes can just seem difficult but too much stimulation even if it's something simple and sometimes things and the thing about feeling like you're in jail what's worse is that not only on your tail but you feel you've been robbed and it's hard even to have the energy to give love to those who love or patiently listen or care affection or attention or anything that ordinary people would want to do and you wish that that people would approach you with viable Solutions but you have to wind up asking and even then unless you figure it out completely on your own nothing's really going to happen to help anyone oh that's what it was it must be very difficult on those around you I can't imagine because if we're unstable and such then they don't know how to respond by being helpful or not or they should try to force you to do stuff for sometimes they try to get you help but it's not inline or and they keep forgetting constantly especially if you're showing signs of being better at all and then you have to explain again because it's not you really that they're working with its just a temporary you know Escape pod version you know with a small crew and a general lack of focus and power resources ability and the fact that I haven't built up incredible jealousy and resentment and such as really awesome but I or amazing but it's still super duper frustrating and it makes me sad that I have to put my family through this of course rather be a whole other type but I plan for when I'm going to be tired and I tell them ahead of time and I keep my limit slow but when asked what I'm going to do in an hour I can't say I can't even plan one hour ahead that's the crazy thing you just never know from moment to moment and sometimes for days are you going to feel an especially because I've developed apri anxiety now about going out and being caught same thing happened with IBS or you're afraid to go out because you remember being extremely tired in public and and such
And you wonder how much is yourself and your own doing and what triggers and what you could have done better or should be doing better and like all kinds of forms of Kilz and it's just on and on like that so you have to find other ways and in managing it it makes it well I don't know I'm not sure what the right where it is somewhat acceptable ich
I'm very happy grateful you know that sort of thing for all the things that are working got to say that and it is scary thinking of people who don't have a support network there's not much that they would be able to do so be nice to helpSUBJECT: With money have clinics, and then thehealing power of romancetouch etc, though if midclas cant access and drawn in to thngs online scams and pills and nonspecilised trades tht dont work
Sometimes whether the atory naratv is real or fearvapdifonlyatmomntntmvyet thats ntbc of mvmnheisnverg and other antietc
Quandries where can have several simultaneous thoughts
And like hal when opposed confused, also like video house ep4 and finding peace in nature and powtry meditation and coffee
Illequiped minor stresors
I might not look at people say that I seen peaceful and collected but I'm actively suffering on the inside and you have to understand that every time I repeat myself it's like it pains me so when I already expressed that on my only day when I'm sort of okay that I need to take care of things when I'm invited to stop and rest it's like if I slow down then it's just back to the same again I have his limited window and someone others are slow around me and such it's like stealing from me or something that's what it feels like it's very difficult situation to have to continue this way
Most5,10,50 things gotta choose one or two
And when overwgotta go asap and others slow diff endur
No one says or does anything to help and thise tooweakarent gonna ask so really a partner spobsor prog
Maybe crisis ofdisconnection
2) what it’s like to have a CFS patient in your home, as a friend, at work etc,
3) Below you'll find a bulletin board please feel free to share your experience (if it doesn't load in window below, you may click here to open page in a new window).
1) But you look ok, and seem to act alright in social situations and at work
2) What's it feel like for other patients?
3) Haven’t you seen doctors to help with this? What do they prescribe?
4) You keep changing your mind about what you have, are you a hypochondriac?
5) What does it feel like for me?
6) What are you doing about it?
► Spoon Theory Introduction
► Article on spoon theory
► Artcle two on spoon theory
Please click tabs above ▲ for articles on spoon theory
The spoon theory is a disability metaphor (for a combination of ego depletion, fatigue, and other factors) and neologism used to explain the reduced amount of mental and physical energy available for activities of living and productive tasks that may result from disability or chronic illness. Spoons are a visual representation used as a unit of measure in order to quantify how much energy a person has throughout a given day. Each activity requires a given number of spoons, which will only be replaced as the person "recharges" through rest. A person who runs out of spoons has no choice but to rest until their spoons are replenished.
This metaphor is used to describe the planning that many people have to do to conserve and ration their energy reserves to accomplish their activities of daily living. The planning and rationing of energy-consuming tasks has been described as being a major concern of those with chronic and fatigue-related diseases, illness, or conditions. The theory explains the difference between those who don't seem to have energy limits and those that do. The theory is used to facilitate discussions between those with limited energy reserves and those without. Because healthy people typically are not concerned with the energy expended during ordinary tasks such as bathing and getting dressed, the theory helps healthy people realize the amount of energy expended by chronically ill or disabled people to get through the day.
Spoons are widely discussed within autoimmune, disability, mental and other chronic illness online communities, as an emic descriptor. The term spoonie is sometimes used to refer to a person with a chronic illness that can be explained with the spoon theory. (from https://en.wikipedia.org/wiki/Spoon_theory)
The Spoon Theory
by Christine Miserandino www.butyoudontlooksick.com
My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time. We never got serious about anything in particular and spent most of our time laughing.
As I went to take some of my medicine with a snack as I usually did, she watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?
I started to ramble on about pills, and aches and pains, but she kept pursuing, and didn’t seem satisfied with my answers. I was a little surprised as being my roommate in college and friend for years; I thought she already knew the medical definition of Lupus. Then she looked at me with a face every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like, not physically, but what it felt like to be me, to be sick.
As I tried to gain my composure, I glanced around the table for help or guidance, or at least stall for time to think. I was trying to find the right words. How do I answer a question I never was able to answer for myself? How do I explain every detail of every day being effected, and give the emotions a sick person goes through with clarity. I could have given up, cracked a joke like I usually do, and changed the subject, but I remember thinking if I don’t try to explain this, how could I ever expect her to understand. If I can’t explain this to my best friend, how could I explain my world to anyone else? I had to at least try.
At that moment, the spoon theory was born. I quickly grabbed every spoon on the table; hell I grabbed spoons off of the other tables. I looked at her in the eyes and said “Here you go, you have Lupus”. She looked at me slightly confused, as anyone would when they are being handed a bouquet of spoons. The cold metal spoons clanked in my hands, as I grouped them together and shoved them into her hands.
I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.
Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control.
She grabbed the spoons... (to continue article click here)
The Spoon Theory Gave Wrong Idea About My Illness
Many people with disabilities that affect energy levels have adopted the Spoon Theory as their mantra. Indeed, when I first read it, the words struck a chord with me — so much so that I posted them on social media and asked friends and family to take a look. I wanted them to better understand me. That may have been a mistake. You see, I’ve come to the conclusion that the Spoon Theory doesn’t fit my life.
Firstly, for those not in the know, I shall give a brief description. The Spoon Theory is a concept written by Christine Miserandino whereby energy is equated to spoons. Basically, as a chronically ill person I would have a finite amount of spoons per day. Each activity I do would remove some spoons until eventually I had none left. The point of it is that we don’t have endless reserves of energy/spoons.
This is very, very true. In basic terms, the Spoon Theory is an excellent way of describing life with a chronic condition. However, I find I just can’t embrace it.
One reason is on a given day I have no clue how many spoons I will have that day. For me there is no set amount I wake up with. I cannot bank on having six or 12 or even one spoon. The theory states that going over your energy reserves on Monday will take away from Tuesday. This is certainly true. But I can have a completely restful day, and still have nothing in the tank for the next day. Until I open my eyes and take that first wakeful breath, I have no idea what kind of day it will be. Even then, I can never be sure.
Often I wake in a morning and think, “Yes! Today is a good day!” Then, within hours, or even minutes, the tides have turned. Maybe my spoons are ninjas? Maybe the borrowers have been rifling through my stash? Whatever it is, I can go from having just enough energy to less than zero quicker than a scrambling fighter jet. Sometimes it’s due to a weather change, sometimes it’s stress. Often I have no clue whatsoever what happened.
On top of this, the amount of energy activities take changes on a day-to-day basis. I cannot plan my day around how much energy things will take from me. Because I do not know. A shower may be doable on Monday. On Wednesday it may feel like bricks are pummeling me rather than water. My joints may feel stiff and rusty. Everything could take 10 times more energy. I cannot count on being able to do tomorrow what I managed today.
Finally, there’s another complicating factor: Pain. Let me tell you now, you can have all the energy in the world, but if you feel like someone just drove a dumper truck over you, you’re not going anywhere! Pain entwines through my entire body in a daily basis. I never know how tightly it will grip. On a good day I can hide it. On a bad day it consumes me.
So yes, the Spoon Theory is fantastic. But unfortunately, it gave people the wrong idea. They thought if I rested, I could then plan activities. If I worked my day so I didn’t have more than one thing happening, then I could do that one thing. They had the impression that I had some vestige of control. I do not. I try. I try not to let my health rule me. But at best, I’m flying by the seat of my pants through an ever changing roller coaster of pain and fatigue. At worst I’m being pulverized by a Hulk-type monster. Either way, it’s a whole lot more complicated than simply rationing my Spoons.
Though I’ve come to realize it doesn’t fit me, the Spoon Theory is still worth a read!