Have you forgotten I have CIDP?

    • Anonymous
      June 23, 2012 at 5:24 pm

      I have a long time friend who just doesn’t or can’t understand I’m not well. This lady can be loud and has loads of energy. I mean lots and it’s hard for me to be around a whirlwind when I’m have 50% energy or less myself. I have tried to tell her how CIDP had affected me and what it means in respect of what I can do. A while ago she came over when I was having my home infusion and my nurse later said my friend was extremely self absorbed and had no idea of how ill I was.

      OK guys, help me out here and humor is encouraged. I don’t think there is a way to not hurt someone’s feeling/ego. I’m just tired today. Maybe I need a 12 month break from this relationship.

    • June 25, 2012 at 2:45 am

      limekat i think it is hard for people to understand because we do not look like we have anything wrong. if this is a friend you want to continue a relationship with, maybe you could try initiating the visit, and arrange to meet her at a movie or for lunch. This way it is kind of a limited time frame plus a relaxed atmosphere where she wont wear you out.
      but then again if she is always self absorbed, and you don’t really enjoy being with her…..then yes, take a break from her–maybe a permanent one!!!

    • Anonymous
      June 25, 2012 at 11:19 am

      Have your friend read the folowing:

      The Spoon Theory
      by Christine Miserandino http://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 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 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 her 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, “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 “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”.

    • Anonymous
      June 26, 2012 at 4:13 am

      Thank you both. I have not been able to go to the movie theater in many years since my legs may need to be elevated. I have been going to my friend’s house out in the country when I can and then I can leave when I have to. It’s the noise and her energy that is overwhelming (noise when in public bothers me). She has been a dear pal and I realize I must structure my time with her. She just does not get it how ill I am. I’ll figure out how we can get together and how to graciously excuse myself when I’m ready to go home. I value this 35 year friendship too much to let it go completely.

      In the last 6 months the CIDP has slammed me and I’m trying to still do the same stuff. The lovely heavy weight of CIDP fatigue is always present even after a good night’s sleep. I’d say the majority of my friends and neighbors have no seen this latest development because I’m always wearing a smile. Some people can not see something unless it has unfortunately happened to them.

      More and more I enjoy the peaceful atmosphere of my home where I can do what when I want.

    • Anonymous
      June 26, 2012 at 10:01 pm

      I have been working on a “Dear John” letter, would you help me type it? It goes like this — Every time I forget my wheelchair I cannot walk. Every day when I wake up I hurt. Every night when I go to sleep, or try to, my body aches. Sometimes my friends can’t remember this. But I still love them all.

      And then tell her that you need 30 copies.

      Dick S

    • Anonymous
      June 27, 2012 at 2:46 am

      Thank you, Dick. You said it well. I needed a little humor.

    • Anonymous
      June 30, 2012 at 11:19 pm

      Inconsiderate people aren’t worth having as friends.

    • Anonymous
      July 5, 2012 at 4:06 pm

      My husband is one of those who is very stubborn about not letting anyone know he has CIDP-MADSAM. We went to a CIDP conference once and they gave name tags to the attendees. Mine said my name/family and his said his name/CIDP. He was extremely annoyed with the labeling and refuses to attend another conference again. He has an atrophied hand and forearm and drop foot, and gets IVIG q 3 weeks, but as far as he is concerned that is a non issue–just a reality that keeps him from getting worse. I just let him do his thing. We started ice skating last Fall after 40 years of no skating. He would splat like a beached whale frequently as his gait is impaired, but all I could do was make sure he had knee pads, and elbow pads. But it sure made him happy to be out there on the ice–so we continue to go. Our friends know that he has CIDP, but since hubby never brings it up they have forgotten. About the only way he limits himself is post IVIG when he is tired for a day or two, and then he might mention that he needs to rest–he will avoid people for a couple of days after treatment. We all are so different in how we deal with the illness. He prefers to pretend he doesn’t have it.

    • July 5, 2012 at 8:38 pm

      Im with your husband Laurel—–very few people know i have cidp.

    • July 6, 2012 at 2:35 am

      Most people look at me with a blank stare when I tell them I have CIDP, but if I tell them it is like a cousin to MS they say ooh! and realize that I do have a serious illness and back off and become much more understanding about my limitations.
      MS and Parkinsons get all the PR and funding, but suffer no greater impairment then what we with CIDP endure.

    • Anonymous
      October 12, 2012 at 4:20 am

      What you said was so true. I just have been recently diagnosed with CIDP yet everyone expects now that I have the diagnosis after two long years I can still live and do all the same things I am used to doing. Nothing has changed. Even after I explain to them about CIDP the general answer comes well, at least now you can begin a treatment plan to get better. They fail to realize sure I was diagnosed but I have all the same issues (symptoms) I had before. Now I am at the point that it is not even worth the effort to explain to anyone why I can’t go shopping all day, why I feel so fatigued. And I do not want to tell anyone because the last thing I want is pity. You are so correct when you said the words it is a cousin of MS. That I am hoping they will understand. You are very grounded in that you have this disease but you are not defined by this disease only the limitations it places upon us. Never have I felt more alone than I do now so I am trying to work on educating myself about this, realize my limitations but I still do not know how to make people understand without them thinking I am looking for pity. Sorry for the rambling but your post really stood out and helped me today. For that I thank you. If you ever want to email me I am at cindymoet@hotmail.com. I don’t know how this site works yet but thought I would give my email address in case you just needed someone to listen to what a rotten or wonderful day you had. Thank – you!! Cindy-Lou.

    • Anonymous
      October 28, 2012 at 11:59 pm

      These posts have been good for me to read.

      No matter what any well meaning person tells you, people treat people with disease differently. Usually from a distance. I don’t tell very many people that I have CIDP, 1. Because of the pity factor that usually doesn’t translate into any real empathy or understanding because most people don’t take the time to educate themselves and frankly I don’t have the energy to be a constant poster boy for CIDP. and   2. Often people disappear rather than get closer.

      I have never really been a complainer over the course of my life but with invisible illness it seems that the squeaky wheel gets the oil in the sense that it really has to be drilled into peoples heads to get through to them. The spoon story is a great analogy.

      I have to admit that before I got this I didn’t really understand what MS was. And it seems that unless a disease has a famous spokesperson and a sexy name it’s difficult to get on anyone’s radar. It also doesn’t help that it’s 8X more rare than MS.

    • November 14, 2012 at 12:32 am

      The spoon story is really great. All the other posts have also helped me with my frustration with CIDP.


      Thanks a lot,