Chronic Fatigue Syndrome Support Group
Chronic Fatigue Syndrome (ME/CFS) describes a sense of exhaustion and post-exertion malaise, even when you have gotten enough rest and sleep. The disease is characterized by six months of incapacitating fatigue experienced as profound exhaustion and extremely poor stamina, and problems with concentration and short-term memory. The cause is unknown, but it is a...
Hello all,
I have had treatment at the fatigue clinic at the Royal Free Hospital in London (UK) for last few years and am currently having a course of Adaptive Pacing Therapy with an occupational therapist. It seems to be about learning how to structure your life to balance activity and rest so that you can make maximum use of your energy resources. Obviously not any sort of cure but designed to help you manage the illness better. I have been seeing the therapist for about a month now.
It all makes sense to me when I am with the therapist and sounds quite straightforward but I struggle badly with putting it into practice.
I think I am getting somewhere and then everything falls apart again and I feel hopeless and defeated and despondent about whether I will ever find anything to help.
Wondered if anyone else had experience of this type of therapy?
Am interested to know whether anyone else has done this and whether it gets easier to do with time and whether it does work?
I so want it to as I am desperate for my life to change!
I have had treatment at the fatigue clinic at the Royal Free Hospital in London (UK) for last few years and am currently having a course of Adaptive Pacing Therapy with an occupational therapist. It seems to be about learning how to structure your life to balance activity and rest so that you can make maximum use of your energy resources. Obviously not any sort of cure but designed to help you manage the illness better. I have been seeing the therapist for about a month now.
It all makes sense to me when I am with the therapist and sounds quite straightforward but I struggle badly with putting it into practice.
I think I am getting somewhere and then everything falls apart again and I feel hopeless and defeated and despondent about whether I will ever find anything to help.
Wondered if anyone else had experience of this type of therapy?
Am interested to know whether anyone else has done this and whether it gets easier to do with time and whether it does work?
I so want it to as I am desperate for my life to change!
The advice I've been given is pretty impractical for everyday living. I've been told that my day should be divided into 15 min chunks, and for every 15 mins "activity" I should have 15 mins complete rest (lying down in complete silence). When they say activity they include, reading, watching tv, driving etc. In real terms I should watch tv for 15 mins then rest for 15 mins. Practically this doesn't work as it means driving to the supermarket (15 mins), then sleeping in my car for 15 mins, 15 mins to run round the shop before sleeping in the car again and then driving home.
As anyone can see, you simply can't live like that, and when I asked them for clarification apparently that what exactly what they meant!
I really can't see how that would help as I'd get more stressed trying to cram things into 15 mins (like shopping) than I would if I just simply took my time and tried to do things in a relaxed way.
One thing I do agree with though is that mental activity is just as tiring as physical activity and even concentrating on an email / tv program is tiring. Multi-tasking is a thing of the past ;-)
I still make mistakes with this, because I try new things. But on the whole, I'm extremely efficient and economical with my energy now. I know if I save here I can spend over there. If I charge up, I might even do that other thing. Once you get the habit ingrained, you learn not to so much as scratch your backside without considering the energy drain involved.
Come to think, that's really it in a nutshell - is the itch worth the scratch? They can only tell you so much about it, anyway. Nobody knows what itches or exactly how much but you. Nobody knows the true cost of either but you, and they both burn some energy.
You'll get there. Just hang in.
I do work a 2-minute pacing rule. Takes practice, but it works well. Example - I am going to the kitchen. I am going to nuke something for 2 minutes. Since I'm standing, I unload the dishwasher quickly and go into the bathroom, where I have a bottle of windex and paper towels on the counter. I take a swipe at the countertop WHILE using the john, wash up, retreive my meal and go sit down to eat. When time is up, it is UP. There IS no 'just one more thing'. That's the discipline part of it. I may not get up again for an hour or two after that, but when I do, I will operate another carefully planned, super efficient, 2-minute flurry of activity. If you can get a flow going that actually sustains your life, then you've done it.
That's pacing. There is no 2 minutes, then 3 minutes thing involved. For me, the very idea of walking steps or riding a bike that goes nowhere is the hugest waste of my energy I can imagine. That's the very same limited energy I use to feed, clothe, and house myself, going absolutely nowhere. A deep knee bend had better also produce a can of soup or a dust bunny or a clean pair of socks, or it's not happening.
It's precisely what Bucky Fuller wrote about - "more with lessing". He talked about global resources, I'm applying it to a single human's resources. The only time I have trouble is when other people want to impose their time limits on my flow. I'm busy learning (ongoing) how to keep them from creating social friction that robs energy from my personal little ecosphere.
(Heh - tell Al Gore to put THAT in his recycled pipe and smoke it, lol!)
unfortunately i think that the best way to feel even a lil better is accepting that your ill and learning your bodies limit, and trying to stick with it! or if you have to push yourself to make sure you take it easy the few days around then!
i've learnt the hard way :p that i can't do what i want and that i have to listen to my body or pay the consequences oo its good fun. i dont know if any of this makes sense as today i can barely remember what im doing :p
xx
Good luck! I know the discipline is hard cause right now I should be resting but really want to be on the computer!
Lisa
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 dont try to explain this, how could I ever expect her to understand. If I cant 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 doesnt 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 with excitement. She didnt understand what I was doing, but she is always up for a good time, so I guess she thought I was cracking a joke of some kind like I usually do when talking about touchy topics. Little did she know how serious I would become?
I asked her to count her spoons. She asked why, and I explained that when you are healthy you expect to have a never-ending supply of "spoons". But when you have to now plan your day, you need to know exactly how many spoons you are starting with. It doesnt guarantee that you might not lose some along the way, but at least it helps to know where you are starting. She counted out 12 spoons. She laughed and said she wanted more. I said no, and I knew right away that this little game would work, when she looked disappointed, and we hadn't even started yet. Ive wanted more "spoons" for years and havent found a way yet to get more, why should she? I also told her to always be conscious of how many she had, and not to drop them because she can never forget she has Lupus.
I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said " No! You dont just get up. You have to crack open your eyes, and then realize you are late. You didnt sleep well the night before. You have to crawl out of bed, and then you have to make your self something to eat before you can do anything else, because if you dont, you can't take your medicine, and if you dont take your medicine you might as well give up all your spoons for today and tomorrow too." I quickly took away a spoon and she realized she hasnt even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didnt want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another 5 minutes for feeling badly that it took you 2 hours to do all this.
I think she was starting to understand when she theoretically didnt even get to work, and she was left with 6 spoons. I then explained to her that she needed to choose the rest of her day wisely, since when your spoons are gone, they are gone. Sometimes you can borrow against tomorrows "spoons", but just think how hard tomorrow will be with less "spoons". I also needed to explain that a person who is sick always lives with the looming thought that tomorrow may be the day that a cold comes, or an infection, or any number of things that could be very dangerous. So you do not want to run low on "spoons", because you never know when you truly will need them. I didnt want to depress her, but I needed to be realistic, and unfortunately being prepared for the worst is part of a real day for me.
We went through the rest of the day, and she slowly learned that skipping lunch would cost her a spoon, as well as standing on a train, or even typing at her computer too long. She was forced to make choices and think about things differently. Hypothetically, she had to choose not to run errands, so that she could eat dinner that night.
When we got to the end of her pretend day, she said she was hungry. I summarized that she had to eat dinner but she only had one spoon left. If she cooked, she wouldnt have enough energy to clean the pots. If she went out for dinner, she might be too tired to drive home safely. Then I also explained, that I didnt even bother to add into this game, that she was so nauseous, that cooking was probably out of the question anyway. So she decided to make soup, it was easy. I then said it is only 7pm, you have the rest of the night but maybe end up with one spoon, so you can do something fun, or clean your apartment, or do chores, but you cant do it all.
I rarely see her emotional, so when I saw her upset I knew maybe I was getting through to her. I didnt want my friend to be upset, but at the same time I was happy to think finally maybe someone understood me a little bit. She had tears in her eyes and asked quietly Christine, How do you do it? Do you really do this everyday? I explained that some days were worse then others; some days I have more spoons then most. But I can never make it go away and I cant forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, I have learned to live life with an extra spoon in my pocket, in reserve. You need to always be prepared
Its hard, the hardest thing I ever had to learn is to slow down, and not do everything. I fight this to this day. I hate feeling left out, having to choose to stay home, or to not get things done that I want to. I wanted her to feel that frustration. I wanted her to understand, that everything everyone else does comes so easy, but for me it is one hundred little jobs in one. I need to think about the weather, my temperature that day, and the whole day's plans before I can attack any one given thing. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. It is in that lifestyle, the difference between being sick and healthy. It is the beautiful ability to not think and just do. I miss that freedom. I miss never having to count "spoons".
After we were emotional and talked about this for a little while longer, I sensed she was sad. Maybe she finally understood. Maybe she realized that she never could truly and honestly say she understands. But at least now she might not complain so much when I can't go out for dinner some nights, or when I never seem to make it to her house and she always has to drive to mine. I gave her a hug when we walked out of the diner. I had the one spoon in my hand and I said Dont worry. I see this as a blessing. I have been forced to think about everything I do. Do you know how many spoons people waste everyday? I dont have room for wasted time, or wasted spoons and I chose to spend this time with you.
Ever since this night, I have used the spoon theory to explain my life to many people. In fact, my family and friends refer to spoons all the time. It has been a code word for what I can and cannot do. Once people understand the spoon theory they seem to understand me better, but I also think they live their life a little differently too. I think it isnt just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they dont take so much for granted or their life in general. I give a piece of myself, in every sense of the word when I do anything. It has become an inside joke. I have become famous for saying to people jokingly that they should feel special when I spend time with them, because they have one of my "spoons".
2003 by Christine Miserandino Butyoudontlooksick.com
Please note that this story is copyrighted and should not be reprinted in any form without permission from the author. Feel free link to The Spoon Theory at www.butyoudontlooksick.com/the_spoon_theory - Thank you!