Dear Me (in response to Phylor’s blog)

Cast all your anxiety

Image by Lel4nd via Flickr

Dear Me,
I keep asking myself why I hurt so much. Why do I feel like razor blades are cutting into my shoulders, why does my back feel so tight that it could break completely in half at any minute. My joints ache yet I haven’t been diagnosed with Rheumatoid Arthritis….yet but a friend told me she tested a false negative for five years. Is that something I am supposed to look forward to?
My mind and body are also anxious. It comes out of nowhere and I don’t know why it’s been happening lately. I do get anxious once in a great while but this has been going on for a little while already. Stop. OK, please stop. I’ll do anything to get rid of those pests inside my brain and my body that are hammering on my insides until they get through to my skin and I want to attack them like I would swatting at flies.
I’m not happy, nor am I happy. I feel dull, blah, not joyful yet not tearful. I want to feel something but I am incapacitated at the moment. Perhaps I fear my own fear. The world at large is a very scary place, I want to help, I can’t ignore it but we have no control over our lives. None. That is some scary stuff right there.
Just when I want to have an adventure I have to think about my Fibromyalgia and Hashimoto’s Thyroiditis. Why did I have to get these together? I can’t even differentiate pain anymore because I ache all over. Muscles, joints, legs, all of it together, all the time. I am getting scared and angry at this stupid disease that doesn’t even have a cure for it yet. I’ve tried all kinds of pills, I’ve done everything I can do, yet nothing helps. Worst of all, some people don’t even believe that what we have is real. Why would anyone make up pain? So, there it is, my ups and downs, my sad to bad feelings, my utter feeling of helplessness in a world that is scary enough without any control whatsoever.

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Sadly, The Biggest Fibromyalgia Fog Ever (And Food)

Stairs.

Image by ЯAFIK ♋ BERLIN via Flickr

A few weeks ago on a Saturday morning, my husband woke us up from a deep sleep at 7:45 am, which on the weekends is basically the middle of the night. We went to meet his parents for brunch “in the middle” of our two houses in two different States. What I thought would be a one hour drive ended up being two hours for us. Two long hours, coiled like a bright pink hair scrunchy  in the front seat of a very small car. I didn’t move around in my seat, didn’t ask to stop the car so I could stretch, I just sat there like a block of white marble. Why? What was I thinking? Apparently, I was NOT thinking.

During the trip there I totally forgot that I had Fibromyalgia. How could I forget that I had a chronic illness? I really don’t know but that is exactly what happened. It didn’t occur to me until I felt locked in place and could not get out of the car. I couldn’t turn, I couldn’t extend my legs out, I couldn’t move and finally, the long, first step from the car to the pavement was pure agony.  It was the greatest Fibromyalgia Fog of all:  Blissfully forgeting I had Fibromyalgia…until we got there.  Had I remembered the illness I would have stopped every half hour to get out of the car, stand up and stretch. I should have been prepared, physically and mentally but I wasn’t. I just wanted to arrive at our destination. When we got there every inch of my body hurt like thousands of razor blades performing a pain symphony.

We walked up a long winding, flight of stairs, my new arch-enemy, to get to the restaurant we were going to for the brunch buffet. I looked up the winding staircase and had no idea how I would be able to get up. Being stubborn and independent I clutched the banister with the strength I had left, my stiff legs and knees protesting at every step; I walked like a small child, one step with both feet at a time. I realized anew that Fibromyalgia is a horrible, debilitating disease and forgetting about it entirely was a terrible burden for my body and my feelings; I felt stupid and embarrassed. “Loser” I muttered to myself.

Finally upstairs we were treated to a lovely meal. The brunch was a buffet, a man played the piano, my teenagers were well-behaved, there were mimosas available and it looked festive. We feasted on made-to-order omeletes, mine with mushrooms and cheese. On display were cinnamon buns with drizzled, sweet vanilla icing. They served eggs benedict. an array of cheeses and fresh vegetables and Belgium waffles with a vat of whipped cream and another close by filled with bright red, plump strawberries. They had croissants and rolls and blueberry muffin tops coated with brown sugar. They had serving stations of steak with horseradish mayonnaise and grilled sirloin, all too carnivorous for me so early in the day. There were smoked salmon platters and my personal favorite, a lovely poached pear, the color of burgandy, with brie and walnuts.

Once we were finished I dreaded walking down my nemisis, the evil staircase. I had to take a deep breath with every painful inch that I could move. Each step sent electric shocks down my legs, my hands were red and swollen, as if arthritis had landed in my body unannounced. I stayed behind the family this time and managed with one hand to clutch the banister down and with the assistance of my husband holding on to my other arm. I felt like a 95 year old grandma and while I appreciated my husband’s help, I loathe that I need it. I don’t like feeling dependent, at all. The food cheered me up, it was lovely and presented gorgeously. I tried to remember that and not getting there or going home. Next time, please, someone remind me so I can avoid a Fibro Fog as stupid as this one.

Soggy Cereal, Wilted Lettuce, Elizabeth Hasselback and Me

I am too tired to think, speak, eat. Too weary to walk, talk, move. My body is aching and sore from being in the car yesterday for more than 4 hours total. In the car, out of the car, each movement is painful, uncomfortable and is such an unbelievable effort. It was visiting day at camp and we were NOT going to miss out on seeing our kids, who are  really not kids anymore, they are 16 and almost 18. They will, to us, always be our kids, our grown-up babies.

The Imuran medication which I take for the aches and pains of an auto-immune disease, Hashimoto’s Thyroiditis, an Inflammatory Disease, Fibromyalgia and possibly Arthritis, has not done a darn thing; at least not yet even though I have been on it for six weeks. I know, I know, I will give it 2 more weeks, just in case.  I’m tired of being a patient, even more so, a patient, patient. I want to stop all the wretched stiffness now; my body is wearing me down and my mood is plummeting. I don’t even think a good dinner would cheer me up and that speaks volumes,  for anyone who knows me. Food is Life, Life is Food. Too tired to even eat? Something is very, very, wrong.

I am part of a club that I don’t want to belong to.  Here I am amongst the champion women of chronic pain, chronic tiredness, chronic everything survivors club. These other women/friends have such better attitudes than me. Tonight my attitude is pure, personal, chronic misery. I feel dreadfully, chronically old. I am 53, I still feel 5 in my mind and over 85 in my body. I think young, I act young and child-like (ok, childish too sometimes) but I move like a very ill old person whose limbs  and joints hurt. Everything hurts me. I know it’s not the end of the world and there are far worse things, but I’ve been going through this for the last three and a half years. It gets better with one medicine and then I have to stop the medicine because of evil side effects. This is medicine number 3 and I don’t see myself going for a 4th. I’m so done.

I am even (gulp) considering a gluten -free diet when I return from vacation (a free cruise, I can’t start now!!)  and when school starts. I’m thinking it over and as much as a foodie as I am my health is more important than the taste of food. I hope. Did I just say that? Seriously?  I wish. I truly believe that because being on a gluten-free diet AND not feeling well will definitely put me over the edge. That, as Oprah says,” I know for sure.” I know there are gluten-free cookbooks out there but honestly, I will not spend my money on Elizabeth Hasselback’s cookbook, no offense. I will probably buy the “other” gluten-free cook book just because I find Elizabeth annoying. I am not saying she is a bad person but she is definitely annoying (not to mention way too conservative).  And so I sit, and wait and creak. Any comments or suggestions from you, my friends, about gluten-free diets would be greatly appreciated especially if you can talk me into being enthusiastic about it!