Diagnosed.. but what now? HELP FRUSTRATED

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Sarah J
New Member


Date Joined May 2006
Total Posts : 2
   Posted 5/15/2006 6:29 AM (GMT -7)   
Hi,
 
This is my first post on here! I have been unwell since my honeymoon last August. Having gone in and out of hospital and had every test under the sun i was finally diagnosed with CFS in March of this year.
My GP has been somewhat hostile throughout it all. Everyone seemed to think that it was all in my head because they couldn't find anything. When the consultant (who i had been sent to because of the digestive problems i had been experiencing) finally uttered the words that i had the esptein barr virus in my system and that he had formally diagnosed me with CFS i was almost relieved (you know what i mean). He signed me off work for a further 3 months and told me to completely rest. He said that i should pace myself. Resting for 3 weeks completely then trying to walk a few hundred yards.. then a bit more and so on and so forth.
 
I've been ok for a while because i've been resting. On Friday i tried to go to work for 5 hours (just in a random bar). This has now completely floored me. I have been in bed for 2 days with my legs feeling like they are being held to the bed. My sick note runs out in 3 weeks and i'm supposed to be starting a new f/t job in 3 weeks. My old company were going to put me through to capability procedure (i.e. i'm not fit to do my job so were going to fire me) so i quit and got another good job. I'm now really scared about going back to work. What if i can't do it? i can't afford to live off nothing and there is no chance of my finding my kind of work part time.
 
What can i do to help myself? i've had no follow up from my GP, she is completely disintrested and don't really know where to turn. My husband gets frustrated becuase i've been so much better, i still don't think he really understands. Like today he told me to stay in bed because we have to go somewhere later and that by doing that i'll be fine by the time he gets home. It doesn't quite work that way i keep telling him. Though on the whole he has been supportive
 
Feel like now i'm stuck in limbo and don't know what to do :(
 
Can anyone give me any advice?

hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 5/15/2006 8:56 AM (GMT -7)   
Welcome Sarah, I'm so sorry you have been sick and that it has affected your life so much. THis must be especially hard for you since it's all pretty new. Unfortunately it is hard for healthy people to understand CFS and there are people who will think it is "all in your head", but remember that it is definitely not all in your head. THere's a great story written by a woman who has lupus and she found a way of describing to others what it is like to live with a chronic illness. The great thing about this theory is that it can be applied to other illnesses such as CFS. I printed out several copies of "the Spoon THeory" and gave it to family and close friends. It really did help them understand. Here's the link (I don't know how to make it a clickable link, so you'll have to copy and paste it):

http://www.butyoudontlooksick.com/2006/02/the_spoon_theory.php

I don't have a lot of advice as far as work, except that you may need to get an extended leave from your doctor - possibly FMLA if you are elidgable. SInce you were starting a new job, it might be harder for you to get. Some people eventually file for disability, but it is very hard to get and can be a stressful process.

As for your doctor, it sounds like it is time for a new GP. Is there anyway you can see the consultant who diagnosed you? IF not you could call to different doctors offices and see if there is any doctor in any of the clinics who is familiar with and treats CFS. There are some meds they can try to help with the fatigue - it's kind of a trial and error.

I'm really glad you joined HealingWell - you are among people who truly understand. I live with terrible fatigue everyday (somedays are better than others). I was diagnosed with CFS in 1991 but I went into what I call a remission for almost 10 years with little flare ups here and there. But in 2004 I got really sick again and now have a lot of lupus symptoms and I'm sure the CFS has raised its ugly head again. Please feel free to ask any other questions or vent if you are having a bad day.

Take care

Diagnosis:  Suspected Lupus 2004; Raynauds 2006; Sjogren's 2006; CFS 1991; Mono 1985

Meds:  Plaquenil 400mg; Tramadol 100mg 3-4x daily; Amitriptyline 10mg; Neurontin 200mg; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/


FallenAngel311
Regular Member


Date Joined Nov 2005
Total Posts : 90
   Posted 5/19/2006 9:58 AM (GMT -7)   
Well I've had CFS/CFIDS for 10-11 years now, and just finally got my diagnosis on February 24th of this year. I've been on Provigil, and it's helped me greatly since then. I am working a full time job (911 Dispatcher)... still doing training, but I haven't really had all too many problems. Except for when I'm having to alternate from 2nd shift to 1st.

Anxiety/Stress can make CFS worse... I have mild anxiety too. THe more you stress yourself out about "what if I can't do it?" "what if I can't do this?" What if..... I know it's scary and frustrating not being able to do things you once could... and it only adds to it when people keep thinking it's all in your head. Definately try to find some CFS support groups near you, or even remotely near... and see if they know of someone who is familiar with it or specializes in it anywhere in your area. Provigil I know is not for everyone, but before I was on it/perscribed it,... I don't know if in my situation I could be doing this well in this job right now.

Learn how to pace yourself, and try not to get too frustrated if you can't do something. Find a doctor that is familiar with it and go over your options.

I know a lot of it is in your outlook too. Just remember that no matter how many clouds are in the sky for you right now, the sun is still shining. Things will get better, and there's always a light at the end of the tunnel.

Keep on truckin' ;)
Hugs,

Nikki

I have chronic fatigue syndrome, anxiety (at this current moment), and some minor abdominal pain which still hasn't been figured out yet... need a break from all the testing ;)

Medications:

CFS: Provigil 200mg, once a day
Anxiety: Lorazepam .5 or 1mg 3xs a day or as needed


faye50
Regular Member


Date Joined Mar 2006
Total Posts : 138
   Posted 5/23/2006 4:22 AM (GMT -7)   
here is the spoon theory so you don't have to find it.

The Spoon Theory

My best friend Jenni 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 this time, with a 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. Jenni 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 “Jenni, 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 choice, 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 didn’t 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 doesn’t 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. I’ve wanted more "spoons" for years and haven’t 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 don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t 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 don’t, you can't take your medicine, and if you don’t 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 hasn’t even gotten dressed yet. Showering cost her a 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 didn’t 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 didn’t 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 tomorrow’s "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 didn’t 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 wouldn’t 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 didn’t 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 can’t do it all.

I rarely see Jenni emotional, so when I saw her upset I knew maybe I was getting through to her. I didn’t 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 can’t forget about it, I always have to think about it. I handed her a spoon I had been holding in reserve. I said simply, “Jenni, 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 “Jenni, don’t 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 don’t 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 isn’t just good for understanding Lupus, but anyone dealing with any disability or illness. Hopefully, they don’t 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".
It is the Gateway to freedom. Do you not see it? All you have to do is believe then open it... else there is nothing but a wall blocking your escape!

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