True Friendship and Chocolate Cake

Two Rainbows at Dusk in Denmark.

Image via Wikipedia

I’ve gotten notes from friends far away saying “I don’t want to read  that you are in pain” when they read SOME of my blog posts. When words strike an already high-wired nerve, I have to respond. I am a woman with Fibromyalglia; Fibromyalgia does not define me. It is part of my life and it has taken a long time for me to accept it but I do. You should too. It is only a part of my life just like food and television and good friendships and my amazing family. I write about all these things.

When I am in pain, I write out my feelings which, I think, everyone in the chronic pain community understands. To the people who read my blog and don’t share a chronic illness, let me explain: when I write these things down, I am trying to heal a little piece of myself. I do not write them for sympathy or for you to feel bad. I write about all my feelings, all the different parts of my life: like having teenagers or hiding orange cupcakes in my room or my sweet, aging dog. I’m sorry if you are feeling uncomfortable about my pain and I’m sure you wish I had less of it but that is not something I can control.

When something funny happens or I fall in love with a cooking show about “Desserts” or “Chocolate” or a delicious/horrendous meal that I have had, I write about that too. A new, dear friend I met on Facebook wrote: “you sure do like to talk about food” as we discussed dinner and I made her describe the chicken and dumplings she made in great detail (hint: buy Bisquik.) I complain about the boring lentil soup I have made and she tells me which spices to add. We both have chronic, autoimmune illnesses but we don’t focus on that. Our chronic diseases are a given. Life goes on and we with it.

I see photos of her beautiful garden with red, ripe delicious tomatoes stretching towards the sun and  bright yellow ears of corn I want to bite into. I see her huge, beaming sunflowers on the side of her house and I am in awe of nature and it’s beauty and my friend’s talent. I taunt her with my (as she calls it “disgusting”) food combinations; pizza with jelly, tuna salad sandwich combined with peanut butter and jelly ( I only did that once) and all things edible. I tease her about her “texture” issues with food, anything “squishy” is unacceptable! Once in a while I will interject a questionable squishy food into a totally unrelated conversation: “raisinettes?” “shrimp?” and she understands what I mean and we laugh.

My evenings are brighter after we talk. This is a friend that has been more protective of me and more supportive than the “best friend” I had for thirty-five years. This is a friend I have made without meeting and if I never meet her, we will still be friends. It begs to ask the question: how do you define friendship? It’s given me a lot to think about. Friendships on Facebook with a common interest are special, we bond about something we have in common and in most cases (except one horrible group I was in) without judgment. Period. We don’t care about how much money people have or what religion they are or if they have a job.  Be wary of a group that say they support everybody with pain and yet they discriminate and cause extreme pain to others who might not “fit in” to their exclusive or religious group. In the other wonderful chronic pain groups, we don’t emphasize anything except friendship and empathy, nothing else matters (if you need suggestions, write me.)

See me, please, as a whole person and if you feel uncomfortable about the days I blog about pain, please don’t tell me not to write about them; you could just say you are sorry that I am in pain and that you are thinking good thoughts for me. Our illnesses are part of our lives, but most of us try not to let them define us. It’s what we have to do.

Dedicated to Katie

Advertisements

The Stranger

Robber Fly sucking the life from it's latest d...

Image by MasterTaker via Flickr

My head is throbbing, my cheeks hurt from congestion, my legs feel like tree trunks. I want to get showered and dressed and hop into the car except I don’t hop anymore nor do I skip. In the best of times it’s hard to even walk, to get up from a seated position, to lower myself from standing to sitting in the car. I’ve been robbed. I have been robbed of my physical, mental and my emotional health by some unknown force like the robber fly as he takes his victim.

In addition to Fibromyalgia and an auto-immune disease, Hashimoto’s Thyroiditis I now have a simple virus or mini-flu which in the best of times makes you feel poorly. But, a virus on top of my other two chronic illnesses makes you feel overwhelmed. I can usually handle the discomfort and pain but not now. Not this time. Is it a flu, a Fibromyalgia -up or a flu on a fibro flare? No one can even tell me what a flare up really feels like or what it does to my body. I don’t really need to know but it would be nice if I could once in a while differentiate my sources of pain. I can’t. I only know that I feel worse, that every step is agony and that I groan going up the steps and down, clutching the banister for support. What has happened to me and who have I become?

I don’t have the energy or the will to get showered, dressed and out the door. Everything I do seems to be an overwhelming task. I cannot remember what it felt like in the past to have such strength and motivation and joy to start a full day. If I can do one errand, get out of the house for one thing in particular, it’s a good day; I have achieved something major.

Fibromyalgia hurts my body, my mind and my feelings. Imagine having a disease that gives you extraordinary pain when half the world is smirking and rolling their eyes and the other half are nodding with tears streaming down their cheeks in empathy. The world, as always, is divided.

I both dread and look forward to my appointments with my Rheumatologist. Sometimes I feel that THIS time he will have the magic answers, most times I can comprehend that there are no miracle cures. I have this chronic illness that will not go away, ever. I am not the same person who used to walk with friends for 3 miles in 45 minutes, who was a size 8, who belonged to a gym with my friend Lisa, who was young and independent.

I was a different person years ago. I worked full-time and drove back and forth to work, made dinner, took care of my child, went to bed fairly late and woke up to the shrill noise of my alarm clock and my husband’s arm nudging me awake. Who was that girl, that young woman? Why did you have to keep her held hostage forever? Why not even a reprieve now and then?

I sit, I wait, I lie down, I avoid the ice, the freezing rain, any chances to fall and break another bone. I lie back against three lumpy pillows and think about dinner or when I will feel able to pick up my prescriptions from the drugstore. I am not who I was yet I don’t recognize myself either.

Who am I? I am lost.