Concepts of Disability - Systemic Lupus Erythematosus - Essay Example

Systemic Lupus Erythematosus (SLE) Section A I am a 32 year old male living in Hughenden in North Western Queensland with my wife and a small child. My wife is almost 30 and she is employed as a nurse in Hughenden hospital earning an average monthly income. I am currently jobless and my wife is the bread winner of the family of three. My wife’s workplace is approximately 10 kilometres from our home. We live in a two bedroom apartment which has a stair case of twenty steps that leads to the bathroom, toilet and the two bedrooms. The ground floor of the house has the kitchen, lounge and the dining room. The house also has an outside veranda that we share with several other families that have rented in the same apartment. I am disabled and living with systemic lupus erythematosus, which is a chronic disease. Many know it as lupus and it is neither common nor rare. It is a tough disease to diagnose, treat and in most cases it is usually over diagnosed (Lahita & Phillips, 2004, p. 51). Living with the disease is difficult and calls for a person with a strong will to persevere. Section B The disease has cost me my job as I can barely perform my daily routines. Before being diagnosed with the disease, I used to feel unwell especially during the winter season. This was after the prolonged summer period and I later came to learn that the sunlight was the cause as a result of the build-up of factors that trigger symptoms much later. I am usually fatigued especially during the morning and late nights. My appetite has drastically reduced as I do not have an urge to eat at most times, which are other symptoms of the disease (Faust & Buyon, 2004, p. 58-59). During cold seasons I experience severe chest pains, dryness in my eyes and mouth, and hair loss. I find it hard to sleep and also I get irregular sleep disorders as described by Hanger and Andrea (2003, p. 192-193). During nights when I am sleeping, my legs feel restless and due to this I cannot sleep most of the nights. My skin is also dry and full of rashes and this rashes lead to scarring. Rashes are severe especially in my face and scalp. Skin rash has caused my face to be red and I often have mild skin sensitivity. The rashes do not itch and are painless but they have resulted to alopecia due to scarring as noted by Wallace (2008, p. 12-13). Over the bridge of my nose, I have a red, flat facial rash. Though painless, it is annoying and mostly gets the attention of many people. On exposure to light, the rashes itch extensively and this is also the case when I get exposed to too much heat I also have joint pains and the pains in most cases are accompanied by swelling and redness. These pains last for few days, weeks or up to two months. The pain starts from one joint and then shifts to another and it ranges from mild pain to severe. I experience severe pains in the morning and at night. Mild pain is normally during the day. My fingers, wrist and elbows are parts of my hand that hurt; and the knees and ankles parts of my leg experience severe pain too. However, my spine and neck joints do not hurt at all. At times, I have fever though the fever only lasts for a few hours. Skin rashes are coin-shaped and scaly. My scalp has hair follicles and there is significant hair loss as explained by Balch (2006, p. 547). I have big and deep red bumps on my leg and red welts are in almost every part of the body. On my fingers are marks of purple lesions. The purple lesions are mostly on the pads of my fingers, toes and near the finger and toe nails. With time, these lesions burst to form blisters and this is usually a painfully process for me. I find it difficult to talk as the lesions have also formed blisters in my mouth and throat, which result to extreme pain. My hair has rapidly fallen off and I tend to experience muscle pains from time to time. The muscle pains have are accompanied by severe coughs that result to chest pain in most scenarios. I find it hard to breathe due to the chest pains and my moods change from time to time (Balch, 2006 p. 548). There has been a significant change with respect to my personality and I tend to be angered by insignificant things. The tendency to get mad has resulted to high blood pressure and this has come with its consequences; for example, I am always forced to go to hospitals for regular checkups due to the high blood pressure. I have also developed inflammation in my kidneys and I have once had a heart attack. Nowadays, I can hardly walk due to constant pain and I sometimes cannot think straight. Fatigue is one of the symptoms that I find hard to cope with. I rarely feel up to anything. Consequently, I have been put on a wide variety of medications for seizures, high blood pressure and chronic pain especially in my stomach and body joints as described by Varelas (2010, p. 260). My leg pains sometimes become intolerable and I have difficulty in swallowing food. My wife is the best thing that happened in my life as she can cope with my illness although sometimes I feel like ending the relationship in fear that one day she may need more than I can offer. My wife understands the pain I go through and her career has helped her cope with me. My small daughter has no clue of my disease though she knows that I am always sick and weak. Some organisations such as the National Advisory Council on Disability have come forward to help me. They monitor me and offer advice on how to cope with the disability. The organisation also ensures that reforms are taking place in our government to accommodate people living with disabilities like me. They also provide advice on proper mainstreams policies to better meet the needs of persons with disabilities. Another organisation is the Tasmanian Department of Health and Human Services. This organisation assists by offering education and information about various kinds of disabilities. They also offer short term support and I have been a beneficiary of their program. Their offices serve as a point of contact for people with disability. The service responds to referrals on individual basis and thereon, determines the type and extent of assistance to be provided to a disabled person. Others include the Ministerial Advisory Council for Disability Services, the Disability Advisory Council of South Australia, and the ACT Disability Advisory Council among others. Section C I am not a fan of mornings since I was diagnosed with this disease. I find it difficult to get out of bed and sometimes my wife has to intervene in the process. Getting out of bed is a tiresome activity for me. After waking up, I can barely spread the bed so my wife does it. I visit the toilet with difficulty and I have to do it alone to preserve a little dignity for myself. I have no rails to use or any other form of walking device to help me with my walking so I have to strain to get to the toilet. This is a painful process that I have to undergo at least three times in a day. After visiting the toilet, I have to go downstairs for breakfast and this is another part of my life that is really frustrating. With help from my wife, I get downstairs as I can barely handle the staircase by myself. My meals have to support my immune system and therefore I have to take balanced meals. I have also learnt to avoid some foods especially caffeine as it results to pain. After breakfast that takes almost an hour and a half, I head to the veranda as there is nothing much to do. My wife leaves for work and I have to handle things around the house. My small daughter, Peyton, helps me perform several chores. After resting for a while, I decide to go to the hospital for a check-up. Having to walk a distance of 10 km is very tiresome so I have to call a taxi. This is costing us financially. My wife being the sole working person, meeting basic needs has become increasingly difficult thus spending any amount of money on secondary wants is deemed as extravagance. At the hospital, I receive fast treatment as my wife assists in the process. Getting back home is hard and this takes me up to three hours if I am boarding a bus. I cannot perform duties around the house so my young daughter almost does everything. By the time my wife gets home, nothing has been prepared and she has to prepare everything from fixing supper to washing the dishes. I can barely perform anything around the house so I just sit and wait for the day to end. At night, I am accompanied to bed as going upstairs is harder than walking downstairs. By the time I sleep, I am weak and really hurting due to pains in almost every corner of my body. Sleep comes after struggling and sometimes, I do not sleep throughout the night. The pains particularly in my joints are the reason behind my idle days. My worst fears are waking up to another day full of troubles and pain Section D Since I was diagnosed with lupus, I have lost almost all my friends. I no longer carry out my normal daily routines and this has resulted to loss of contact with my friends. I no longer go to social places as I cannot cope with the activities that go on in such places. I have also been forced to stop working and my condition cannot allow me to engage in any gainful activity. My condition was viewed as permanent and I have had to resign from work. As is the case, I cannot engage in any learning activities, I have been forced to put my academic aspirations aside. The same applies to application of knowledge. Since I cannot work anywhere, my acquired knowledge cannot be practically put into use. I can barely perform general tasks such as house chores. Communication has been difficult as no one really communicates with me other than close family members and close friends. I am forced to stay indoors most of the time due to irritation caused by sunlight. I also face a lot of criticism from neighbours who do not understand my condition. This has been exceptionally difficult to handle and has largely contributed to my immobility. Some people have been unsupportive as they tend to think I am exaggerating the level of my suffering. Immobility has been a major issue as I can barely go anywhere without being a cause for alarm. I am unable to cater for myself and most of my activities are coordinated by my wife. When she is not around, I am left at the hands of my daughter. Simple things like calls of nature require someone by me. I cannot operate any machines as my condition will not allow. Electric machines are kept out of reach and I have been made to understand the reason for this. Domestic life has been difficult for me. I have to spend almost an entire day indoors. This has been the case due to social reasons. I have few interpersonal interactions and these are mostly with family members. Close relationships only involve my immediate family because since my diagnosis, all my friends lost contact with me. The community assists as they make visits from time to time. Coping with the environment has really been hectic. To begin with, sunlight is a major issue. During summer, I experience a lot of scarring and itchiness. My condition goes from bad to worse and the only way to avoid the itchiness is to stay indoors. During cold seasons, my joints experience a lot of pain and in most cases I can barely get out of bed. People’s attitudes towards me have taken a different direction. The disease has changed my personality greatly. I am no longer confident among people and try as much as possible to restrain myself from social place. When I am out, I have to be accompanied by someone. This is so especially due to traffic as I cannot cross roads by myself. My condition has deprived me simple things. The general status of my domestic life is in wanting condition. My disability has deprived me of the simple things in life like the fun of being in town and checking in a hotel for a meal or drink. This is because I cannot feed myself. Luckily, there are policies in place that make lives of disabled people easier. Owners of buildings are required to put in place means by which disabled people can move up and down the buildings without much difficulty. There are also parking spots meant exclusively for the disabled in several places and this has really helped in improving our welfare. There are also products for the disabled (Pullin, 2009, p. 10-15) Products like special needs clothing are available to the disabled. There are also reading aids that the disabled can access. I have been a beneficiary of these products that were being distributed by a good will organisation in Hughenden. I received hearing and reading aids that have assisted me in many ways. I also have access to recreational facilities that have been put up. There are also personal hygiene products for the disabled and utensils that assist in our meals. Technology is also favouring the disabled people as there are several gadgets to assist us in our daily routines. Products like the ablephone -a hands free phone reveal that the producers are aware of the needs of the physically disabled. There are products that assist in grooming and self feeding as well and they have helped the disabled society to move a milestone. Lifts and other transfer devices have helped improve my mobility. When I was diagnosed with lupus, I began missing work, losing friends, and separating from family. I missed work sometimes for a week and it was not long that I was forced to quit. At age 28, it was clear to me that the disease was bound to change my entire life. As days turned into weeks, weeks into months and months into years, I stopped counting bad days and started counting good days as it was easier than counting the bad days. I am still under medication but my condition is somewhat under control. I have learnt how to live with my disability and much as the disease is life threatening, I have learnt how to be positive about my condition. Over the years, my self-esteem has grown significantly. I am slowly accepting the fact that I cannot perform to my full potential. Sometimes it is hard to be positive but I assure myself that it is going to be fine. Support from my family also helps me stay strong as they have been and still are with me every step of the way.  I know that this illness will shorten my life and understand that my quality of life will get worse and I may lose more of my memory, but I keep moving. I can't let this condition define me. I still have constant ups and downs but my symptoms are a little suppressed. My condition has taught me to live one day at a time and make the most out of each day. I have built great strength over the years and I know I can make it through everything. Accepting that lupus has changed my life has been difficult but I have learnt to be patient and live a happy life. My self esteem is slowly building up and I am no longer worried about being troubled by the disease. Generally, the history of treatment and attitudes towards persons with disability has often been marked by societal fears, pity, intolerance, prejudice and ignorance regarding disability. People with disability have undergone torture and several other inhuman atrocities but this is not the case anymore. The society has now accommodated people like me and according to me, the disabled can now live comfortably with the rest of the world. I have been to many places and my condition has not caught the attention of many people as it was the case several years back. I have learnt that I can do many things despite my condition and I try to do some of the things I can manage. I am however restricted from some activities and there are limits to the extent of work I can do. People around me are accommodative and their tendency to be pitiful has changed. With my change of perception that the illness is part of me, I can now have some freedom as I am allowed some form of independence. Ignorance has greatly reduced as the society is willing to help me in many ways. I am positive that my disability will not be an inability. References Balch, P 2006, Prescription for Nutritional Healing, Penguin, California. Faust, B & Buyon, J 2004, The Autoimmune Connection: Essential Information for Women on Diagnosis, Treatment, and Getting On With Your Life, McGraw-Hill Professional, New York Hanger, N C & Andrea B, S 2003, The First Year--lupus: An Essential Guide for the Newly Diagnosed, Da Capo Press, Massachusetts. Lahita, R & Phillips, H R 2004, Lupus Q & A: Everything You Need to Know, Penguin, California. Pullin, G 2009, Design Meets Disability, MIT Press, Massachusetts. Varelas, P 2010, Seizures in Critical Care: A Guide to Diagnosis and Therapeutics, Springer, New York. Wallace, D 2008, The Lupus Book: A Guide for Patients and Their Families, Oxford University Press, Oxford. Read More