A journal of healing

Invisible

Penguins

I was very inspired by this post written by Christine Miserandino called the Spoon theory. I thought I would share the concept here and talk about what it is like to have an invisible disease. There are so many people with chronic illness out there.  This is  meant to be  an awareness campaign and to help others maybe understand what it is like.

http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

To paraphrase the Spoon theory: You are allotted everyday so much energy. Christine in an attempt to help a friend understand what her life is like with lupus tells her by using spoons to represent the amount of energy she has. Before she is out the door to work, she has used up so much energy in showering and dressing that she depletes the 12 spoons by half. She did not address that because of the pain you did not sleep well and so sometimes you do not even have 12 spoons to start with.

She talks about the choices that healthy people get to make about their day because they have unlimited energy. And when I typed the word healthy, I cringed because that is the first choice you lose when you are inflicted with one of the many invisible chronic illnesses that are out there. You do not choose to get this disease.  No one really knows why these chronic illnesses manifest. It can be genetic.. It is a crap shoot. You do not get to choose lupus, Psoriatic Arthritis, or MS and you often cannot prevent it.

Christine explains to her friend that she chooses garments she wears by whether or not she can button them. My choices have to include whether or not my skin is crawling and that the cloth will irritate me all day. Some days I want to get out of my skin, not just my clothes. I have no choice not to shower as I have something called inverse psoriasis, which burns like hell all day if I do not shower and apply medication. But I have to be careful because showering too much activates the regular psoriasis and makes it flare.

I have a friend who I have known for a few years who has chronic pain. She has been to different doctors and they cannot seem to find what is wrong. They are looking for a simple fix. She struggles to explain how one day how she can be really great and the next day feel like someone ran over her. Finally a doctor is going to test for an auto-immune disease and I wish her well.

I used to have days where I could rip through life, do everything I want and then pay for it later or the next day usually in staggering bone deep pain. No one would listen to me either. But they could only see that I was fat and that was the only disease they could see. Doctors are the first and sometime the hardest person to convince that there is something wrong. But be your own advocate. I kept a journal and my handwriting deteriorated so bad because I could not hold a pen. It was not until the progression of my Psoriatic Arthritis (PsA) got so bad that my toes and fingers started to curl up that she ran the SED rate test.

Then by running the required tests, and there are several because it is hard to diagnose, they believed me. Then they filled me with all kinds of drugs which have had dire consequences too.

I am now on a spiral of a pretty bad dive into my PsA. I was in remission for several years until the Enbrel I took stopped working. It took almost a year to realize what happened and to get in to see the rheumatologist. He changed my prescription to Simponi, which took another six months to get and then have an effect. In August, I had a reaction to the drug which raised my blood pressure to stroke level. I had to come off. It took another three months to get in and get a new prescription which I started in November. The Cimzia I took was horrible and raised my blood sugar to over 345 and I gained almost 10 pounds in a month. I am struggling now with getting the weight off and the blood glucose levels down. I am afraid this will make me have diabetes, which is something I have fought off for years. I have to wait until February before I can get in and see the Dr. again. The result is I am in full bore flare all the time. I cannot walk without limping and I have no energy at all. The pain I am in is constant.

I have only touched the tip of what it is like to have a chronic illness. I live with it. I have no choice. I make the best of it by being careful with what I do. Everything I do has a consequence. But I have also try to not let people’s reaction to me affect me. For example, yesterday my family and I went shopping at Costco. It is a huge building with a horrible cement floor. I had to run to the bathroom twice and each time, it was on the opposite side from where we were. By the time we left there, I could hardly walk. I do not use a cane. I wanted to just cry from the pain. I saw people look at me limping and lumbering by and I see the distain in their eyes. They do not see the woman who is in chronic pain, they see a red faced fat being rumpling by them. I would be lying if I said it didn’t bother me. But I do not want the choice to go out taken from me too.

In the spirit of compassion, try to look at other people with understanding that you do not know the whole picture. As much as I hate whining about this, I know there is a need for advocacy for my fellow suffers who have these invisible diseases. Judge not unless you walk the same walk.

The Spoon Theory by Christine Miserandino http://www.butyoudontlooksick.com – See more at: http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/#sthash.sD7SEFgH.dpuf

 

 

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Comments on: "Invisible" (1)

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