“You Don’t Look Sick”

Having chronic severe head pain I don’t go out very often, but when I do it can be very awkward. For instance, grocery shopping usually wears me to the bone. I often hold on to the shopping cart and kind of let it drag me around as Bob pushes. I feel like the toddlers you see doing this. At the end when we are in line to check out, I am leaning on the cart or I go to sit down on the bench in the front of the store. I’m in a great deal of pain and I’m exhausted. People give me very strange looks, they don’t see anything wrong with me. There are times when I have to wear my earplugs (they are a bright yellow) and I get strange looks, like what’s my problem? There are also wonderful friends that I occasionally run into that ask the expected question, “How are you?” I’m never sure how to answer this one. When I’ve said fine or good, people thought that my pain went away and I was all better. When I’ve said getting by or something similar, people seem to feel awkward and don’t know what to say.

While I was in the hospital for treatment, I attended group meetings on how to deal (or live) with head pain. In one session we were given an article to read and discuss: The Spoon Theory by Christine Micerandino. This article was not written by someone with head pain but someone who had an illness that could not be seen physically. Micerandino found a wonderful way to explain what it is like to live with her illness. Since she has many of the same situations and difficulties as I do, I have modified the article to fit my life with head pain. It’s worth the read:

The Spoon Theory  By: Christine Micerandino

Modified by Lori Milne

You Don’t Look Sick

My best friend and I were in the diner talking as usual. It was very late and we were eating french fries. Like most women who get together, we were talking about what was happening in our lives. We never got serious about anything in particular and spent most of our time laughing. Then she asked me out of the blue what it felt like to have head pain and to be sick like I was. I was surprised because she asked the random question and I thought she already knew all there was to know about what I was going through.

I started to ramble on about pills, fatigue, and aches and pains; but she kept pursuing and didn’t seem satisfied with my answers. She then looked at me with a face that every sick person knows well, the face of pure curiosity about something no one healthy can truly understand. She asked what it felt like to be me.

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 needed to find the right words. How do I explain every detail of every day of how I am affected and the emotions that I go through with clarity? 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 too. I looked at her in the eyes and said, “Here you go, you have head pain.” 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 between being sick and in pain and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t need to. The healthy have the luxury of life without these decisions, a gift most people take for granted. So, I used spoons to convey this point. I wanted something she could 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 be in control, like living with chronic pain.

I asked her to count her spoons. She asked why, so I explained that when you are healthy you expect to have a never ending supply of spoons. But when you have to plan your day, you need to know exactly how many spoons you are starting with. It doesn’t guarantee that you might now 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 that she wanted more but I told her there were no more for her. I’ve wanted more spoons most days also, but they are not there for me either. Then I told her to always be conscious of how many she had and not to drop them because she can not get them back.

I asked her to list off the tasks of her day including the most simple. As she rattled off daily activities, I explained how each one would cost her one or more spoons. I told her to start at the beginning, so she jumped right into getting ready for work as her first task of the morning. I had to cut her off and and explain that she hasn’t gotten out of bed yet. “You have to crawl out of bed. Then you have to take your medicine and get something to eat or else you will be sick.” I take away a spoon. She says then she takes a shower. Showering causes a great deal of pain because of the water hitting her head and then she has to shampoo and condition her hair. It is also exhausting but she still needs to dry off, dry her hair, do her daily moisturizer, and get dressed. She will need to factor in 1-2 hours to do all of this. I take two spoons for showering and two spoons for after shower requirements.

I think she was starting to understand; she lost five spoons and the day hasn’t even begun. I explained that she needed to choose the rest of her day wisely since you only have seven spoons left. We went through the rest of the day . She learned that feeding the cat and cleaning out the litter box cost her a spoon. Emptying the dishwasher, especially if looking up, is another spoon. Typing on the computer, reading for just 5-10 minutes, running to pick up a prescription, playing fetch with Kira, and listening to an audio book for a little while are all one spoon each. That’s 12 spoons. There aren’t any spoons left and she hasn’t even made dinner, another spoon. Going out to dinner is two spoons. She was forced to make choices and think about things differently. People who are sick need to plan their day ahead of time. Others just don’t understand that last minute plans are very difficult to accommodate.

My friend had tears in her eyes and asked quietly, “How do you do it? Do you really do this every day?” I explained that some days were worse than others, some days I have more spoons then most, and other days I start with less. But I can never make it go away and I can’t forget about it. It’s always there. It’s hard, the hardest thing I ever had to learn is to slow down, that I can’t do everything I used to. I hate feeling left out, having to choose to stay home or to not get things done that I want to. When other people can simply do things, I have to attack it and make a plan like I am strategizing a war. I miss the freedom of never having to count spoons.

Ever since this night, I had used the spoon theory to explain my life to people. It has become 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 lives differently too. I think it isn’t just good for understanding chronic pain, but anyone dealing with any disability or illness. I give a piece of myself, in every sense of the word, with everything I do. It’s extra special when I get to spend time with people. I always try to save some spoons for that; but some days use up spoons from the next day and it isn’t always possible. Oops, there goes another spoon…

 

Optimism Tested

It’s been a while since I have blogged. Holidays have gone by and I have been struggling with increased pain; however, the holidays were great. Seeing my family and being together is the best. We’ve had a few chances to get together since the holidays also. I love that! I am adjusting to being home alone most days but I still get lonely sometimes.

The sun is out today for the first time in what seems like forever! I do enjoy that but I have still been struggling with keeping up my usual good spirits. It’s been more than a year since the beginning of all of this head pain. I have remained hopeful that a source of the pain would be discovered and a solution implemented. I am losing this hope. So many times I have put all of my hope into a procedure and/or appointment just to be let down. After a year, it is difficult to find hope again. I am trying.

I just had another appointment and we discussed a referral to Cleveland Clinic. I have an appointment set up there for March. Although, we have to drive all the way to Cleveland for a one hour appointment. Traveling is very difficult for me and I am afraid to build up my hope. I do not want to ride all the way there for one hour and then be told I have to come back in a week or so for testing, etc. With the travel and expenses, I wonder if this will be worth it. On the other hand, I want to do everything I can to improve the quality of my life. Has anyone gone to Cleveland Clinic for a consult? Do you know how this works?

Looking for advice and hope…