I can’t stand the pain anymore; I just can’t take it another second. I am having a hard time accepting that this is my life. I am not coping well today; I am not coping at all. Another day of stomach pain and too much sleep, no energy and endless trips to the bathroom, not leaving my home. Is it my long-lost enemy IBS revisiting me? Is it the side effect of the Cellcept that I am taking for my auto-immune disease, Hashimoto’s Thyroiditis? I don’t know, I really don’t know. I could easily start crying now, I just don’t know if I could stop.
I don’t know what to do and I hate that feeling, I feel powerless. I have no energy to fight or to make any medical decisions, minute or radical. I don’t have the strength or state of mind to start going to doctors anymore, again. What if I do nothing? Stop the medications and live like that? I’m scared. The medicine is supposed to be making me feel better and in some ways it does, except for the horrible side effects. Unless it’s a virus….See? There’s no way of knowing and I feel helpless, truly helpless.
People try to be nice, “Hang in there!!!” they write or say with heartfelt warmth. No. I can’t. I just can’t do it anymore. I’ve been pushed beyond my limit and I don’t know if there is a way to pull me back on board without me kicking my legs, punching fists in the air. I refrain myself from starting to scream obscenities like an absolute crazy person. I take an orange pill for anxiety, I drink a cup of ginger tea from a yellow ceramic mug. I droop.
It is clear I can’t continue to live my life this way. I’ve seen more doctors than I would like to see in a lifetime. Friends and relatives yell out well-meaning ideas: homeopathy, acupuncture, massage? There’s a doctor in Massachusetts, in Israel, two towns away? Try gluten-free, try vitamins, go to Dr. Weill, to this woman we’ve heard about in Brazil, how about the Mayo clinic for a minimum of $50,000 dollars and no guarantee?
I don’t want to talk about this, I don’t even want to write about it anymore except for the other “friends” who have painful and annoying chronic illnesses like me. They understand, they are the only ones who understand what it is like to live hour by hour. It’s not life-threatening, true, so we don’t get much sympathy but we have no lives to speak of. What about us? The lost souls that linger in our beds, hoping for a surge of energy, a sign of life? We are not part of the statistics because really, who knows about us? Who cares? We are not in hospitals or reporting ourselves to the CDC. We are not checking in to one specialty hospital because they don’t exist. We have symptoms all over the map, we are not just one disease. There are many, many of us who are unhappy, who are fighting each and every day ; we feel sorry for each other, because only we can understand the struggle, the fight, the emotional and physical pain that live with us just about every, single day.
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