-4- SHORT ESSAYS ON FRUSTRATION AND RELATED EMOTIONS FRUSTRATION I Frustration is a very large stress producer for those of us stricken with a chronic illness, and CFIDS/ME in particular. Frustration comes in many guises, sometimes open and blunt and at other times slow and crafty. Frustration can keep you enraged. Frustration can keep you down. Frustration can drive you mad. FRUSTRATION II I am frustrated with myself. My body is the prime offender of my psyche. My mind may be willing, but then the body decides to collapse. One day I have the energy to enjoy a pleasant afternoon puttering about my garden. The next day I may not be able to crawl out of bed. If I endeavor to utilize the power of positive thinking to force my body into action, I only manage to hurt myself. The disease wins every time. I push myself today and it makes me pay for it for the next week. Forced inactivity. Forced inability. Forced imprisonment. I could howl my frustrations like a wolf baying at the moon. I would rant and rage my frustrations out in a torrent of activity and emotion if only I could. But I cannot, I have strength enough only to fume and none to act. ANGER Slowly I anger, in simmering annoyances Ingredients added with minor annoyances and interruptions Stirred with repression Fired by suppression Until the pressure grows and builds And I explode in anger With harsh tones and words. P. Griffiths. 1989. FRUSTRATION III I am frustrated with those I live with, my so called caregivers. Caregivers, what a word. One who cares? One who gives care? I often feel like no one truly cares. I sit alone with only my muddled thoughts as company. Thoughts running round and round focusing upon every little trouble that is or might be. Thoughts of what once was and now is not. Thoughts of what had once been planned but now cannot be. "If only, if only, if only..." Only by focusing on activity or conversation can these noisy ramblings be shut off. I am shut in and alone. I may not be able to do much more than sit, and sit alone. The loneliness and isolation are terrible foes. There is ever so much that I would do if I had the strength to do it. But the chains of fatigue bind me in place, unable to break free. I cannot do for myself. Some days I cannot even tell others what I need even if they were there to listen. The frustration of it all makes the ruminations louder and more fearful. I am helpless and without help. DEPRESSION There is a dull grey cloud that surrounds my being and fills my mind with a fuzzy purple haze. Nothing feels real, nor firm, nor is anything my senses say is true. I feel bloated, enveloped by mitts and gloves and blankets as if dressed for winter's fury. My thoughts are dull and grey, floating and darting without focus or direction. Nothing is worth the effort to do or even worry about or plan for I feel without worth and without substance, or emotions I feel only deep seated pain. P. Griffiths. 1989. FRUSTRATION IV I am frustrated with the whole health care system. I have only a few hours per week when I can have my brain working and my body working at the same time. If I need to get any "work" accomplished I need to do it then. I have found it extreamley frustrating trying to track down what health care/ homecare/handicap services I qualify for, what services are available, and what services I can afford. Then I must track down the right people and make appointments to see them. I feel like an idiot at times. It isn't an easy task to admit the areas in which a person needs help. I have found no one offering the information to me on what is available and who to contact about getting it. I need to call phone number "A" to get referred to phone number "B" to leave a message for person "C", to be referred to person "D" at phone number "E", to make an appointment for me to see person "F" in order to fill out forms "G", "H", and "I" , and then get form "H" signed by my doctor and back to to the rest of the alphabet. I then must follow up by calling back person "F" for another appointment just to find out what is happening, since no one will tell me over the phone. Then drag myself to the appointment only to find that I must wait another six weeks for an answer to my request.... and I will be notified by mail whenever some judgement is made on my application. Getting the runaround was hard enough on my patience when I was well. Now the confusion it entails puts me into the proverbial tailspin, so that I crash into a numb and unfunctional heap upon my bed. FRUSTRATION V To top things off, this doesn't even touch upon the frustration and exhaustion involved in getting myself to those darned, often useless appointments. If I'm having a good day on the day of the appointment, it may take me only two days to recover. If I am having a bad day and then run into problems with transportation, I can be bedridden for weeks for my efforts. FRUSTRATION VI Those around me see me as I was, not as I am. Their expectations of my abilities are based upon what I could do ... before. Before, when I was active. Before, when I was able. Before, when I could rely upon myself and my own abilities. Before, when I was the primary caregiver and caretaker for my family. Before, when I was a significant contributor to the family's income. But that was all before the illness took over my body. I want to be as I was, to do all I did. I am frustrated by my inability to do what they ask of me. I am not able to fill the roles in their lives that I once did and now I am abandoned and alone. Thrown off like old wornout shoes. No matter how hard I try, I cannot do anywhere near what I once found easy and invigorating to accomplish. Why should they then not abandon, me when it seems to them that I have abandoned them? I mourn the self that was. ALONE alone there is pain of body and of mind no relief no respite an empty tunnel of despair that has no end in sight emptyness and echoing sounds of hearbeats boom like cannons pulsate witin the brain body spasms and writhes beyond hope beyond anguish alone. P. Griffiths. 1989 FRUSTRATION VII Frustration, as I cycled in and out of sickness and wellness with never any satisfactory explainations from the medical professionals from whom I sought help. I seemed to have an immune system that advertised free housing and meals to every virus and bug within 200 yards of me. Whatever was going around would hit me hard, and repeatedly. I've become someone who never manages to escape a single round of flu or colds. That became a fact of life. I would feel miserable for two days before my white blood count would confirm infection, which frustrated the doctors and my parents as much as it did me. We all became convinced that I would just have to manage with an over-sensitive immune system. I could expect just to feel unwell on and off for the rest of my life. I wasn't really ill; just over-sensitive. It did not matter to anyone how much I hurt or how ill I felt. I was expected to simply get on with things regardless. When I couldn't do what was expected of me, I was punished. I would be shamed and ostracized if I failed. As a child an adolesent I was sometimes even hit. If I failed I would be abandoned, and abandonment in times of helplessness has always been my greatest fear. Over the years I had good spells between the bad. The good periods were wonderful in that the over-sensitive part of my immune system seemed to have gone on vacation. Everyone around me could be sneezing and coughing, and I would be fine. I could be intelligent in high school or university studies. I could garden, bike ride, sew, cook, go camping.. all to my heart's content. I could take care of my kids, manage committees and volunteer in my community. I could do anything I wanted to do. I was the Superwoman of the '70's and '80's, determined to be able to have it all and it do it all well besides. I was on the top of my world and it felt glorious indeed. Unfortunately the periods of glory were always interrupted by spells of gloom. What had been a short time before another challenge for me gleefully to conquer now became a large hand slapping me down. The old over-sensitive immune system had returned, and I was returned to square one. Again. I would simply wake up one morning sneezing, and I would know what was to come. My energy disappeared. My strong and stubborn will evaporated. I could not make decisions, let alone thrive in crisis. My mind became packed in cotton batting that refused removal. Where I had been "brilliant" in my academic life one semester, the next one found me fighting to understand what the professor or teacher was saying. I could not balance my check book or follow a recipe for that matter. All I could do was muddle along, sometimes hoping that a "real" sickness would come along and finally give me a "valid" reason for my suffering. Shame often overwhelmed me. I felt like a fraud and a failure. I was a failure as a mother, as a student, as a wife, and as a person. It became so that every time I did recover and bounce back I felt afraid of being found out to be the fraud who really couldn't cut it. I would be five years up, then down for three months, up for three years, down for six months. The periods of glory were each shorter in turn. The periods of collapse and failure became longer each turn. My self esteem took another beating with each cycle. Whenever I sought help the effort was worse than not trying at all. It was always another exercise in...... FRUSTRATION. -----