This Lupus Life

I am the dancer and Lupus is my music. I want to make it look beautiful

Interviews with the parents

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These last five days have just been so hard. I am really starting to feel the toll. The contradiction here being the fact that actually I have been less active than usual, so justifying my lethargy and idleness is much more difficult.

Following the wonderful Easter weekend my university has been on the first of two semester breaks. This is normally a chance to focus on completing assignments, catching up on lectures, readings and sleep or partake in independent research and study. I had been excited at the prospect of watching all the lectures from one particular unit again so as to better understand the content.

My week did not go according to plan.

My mother came to stay with me on Tuesday. I had an ultrasound in the late afternoon to investigate my persistent lower abdominal pain. The ultrasound was of my lower pelvic region. I had a great conversation with the sonographer and his student assistant. I recognised him from another scan I’ve had at some point in time, though he did not remember me. The sonographer advised me at the end of my scan/screening/whatever-this-test-is-called that he did not believe there were any areas of concern in this region of the body.

This was good news as it eliminated Endometriosis, ovarian cysts and some forms of tumours as being the cause of the pain. Considering the amount of potential issues that can be caused by these three things I was pleased to know the field was narrower than it had been. Yet I was more puzzled as to what there was left for the doctors to test in the way of identifying the origin of the pain. Even though I am not a doctor I have been in the game long enough to recognise the pool of possible tests is rapidly drying up.

My mother stayed in Perth with me for the week. When I had informed her of my persistent skin irritation adding on to my list of frequent health complaints her mothering instincts kicked in and it was easiest for me to just smile, nod and try to stay out of her way. The two of us both having strong, stubborn personalities means that we lock horns often. Thankfully that has not happened this time because I have been strongly sedated since the ultrasound. When the invisible, inexplicable skin irritation first reared it’s head I had rushed straight down to the pharmacist to collect some prescribed antihistamines to treat it. I’d had this script for Endep from a similar incident last year. After a few days the unfortunate situation arose in which I was still breaking out every morning with this skin irritation, inspite of taking the pills each night as recommended. The irritation was not suppressible alone with tepid/ cold baths of Pinetarsol or with over the counter antihistamines such as Fexofenadine and so in the end I had to resort to taking an Endep each morning and sit in the bath until my skin stopped crawling. At this point I’d like to mention the Australian Summer disappeared in a flash to be replaced with early autumnal cyclonic storms and heavy rain and my baths were more on the cold side of tepid. My cared for me and kept my mind occupied. Gallowe and I talked when he wasn’t working. My father came up on Friday.

I hate the entourage of parents that I sometimes take to the doctors and I know they think it is a bit funny. It certainly makes me feel like a child when they follow me into the examination rooms. It is not that they don’t trust me to ask the right questions or to relay the correct information. They just need to hear it first hand and know that I haven’t skipped over anything or explained something wrong. Usually I don’t let them come.

‘I am an adult,’ I tell them. ‘I want to be treated like one.’

They respect this. That doesn’t mean they always listen. This times they are attending with me. They are going to do the speaking, not me. This is another point which always concerns me, and so they are rarely allowed to speak and ask their own questions. Usually they write them down for me to ask. with the answers recorded on my phone or written down to relay back to them.

So I am not speaking. They have my questions. I am not so much drowsy with this antihistamine medication but rather I am extremely compliant. I wonder if they prefer me this way than when I am arguing for the sake of it and questioning the way things occur in life, society, value systems, institutions and such. I know I do.

I have one more appointment today and some follow up tests and appointments in the next few days. I am loathe to report too soon the results of anything, especially since the three of us are about to leave for the Neuro-Immunology Clinic at Royal Perth Hospital. I am really glad my folks are coming along.

I hear all too frequently the sad stories of parents with adult children who suffer from chronic illnesses like myself. Unlike myself these other children have pushed their parents away and maintained a solid, heart-breaking barrier between the two. It shames me to admit this is something I can understand only to well how and why this happens.

Too often I talk with my parents about this exact thing. If I hadn’t been through so many different counsellors, read so many different texts and talked so much with other unwell individuals I may have been one of those children too. It has taken time, and perhaps it is in part due to my free-spirited nature which sees me returning to the nest every few years to leave in a new direction which has allowed me to grow into adulthood while still living under my parents wings. I am an adult. Since the time I entered puberty I wanted to ‘make it on my own’ as many adolescents do. Yet even in the early years of adolescents I was unwell and so my defining years of growth were instilled with the knowledge that whenever I ‘tripped and fell’ in any aspect of my life I would be welcomed back to the fraternal place of security. My early years of adulthood were interwoven with the awareness of my autoimmunity and health deficits. Each time I experienced a period of six months of good health I was practically forcing my parents out the door and raging at them to give me space to be an adult, ignoring them for weeks or months at a time. Then the pain, swelling and symptoms would return and I would be on the phone numerous times a week begging like a child for my mum to care for me, rub my feet, make me soup, talk to the doctors.

My adult independence was established at the same time as my understanding of breasts, boys and periods. My relationship with my parents hinges upon my current health situation and part of me will never fully allow from that childlike need for them to heal my hurts. If I had formed a meaningful relationship with a partner during my late teens and early twenties it is incredibly likely I would have pushed my parents out completely, I know this and I am sorry for it. My pride won’t let me admit the depth of my illness to my parents and it is only there patient, attentive care and placidly, forceful attempt to remain important figures in my life that keeps them there. They stay well educated so I don’t have to and so they get to play in my game. We all know this and we all pretend, for my pride’s sake, that I am a fully independent adult in my late twenties.

I cannot speak for individual people, but I hope maybe this insight may help some to better understand why I am not one of the many. There are many. It may hurt on the other side, but know that you are not alone. You are only following the instinct to protect your offspring, while they are only trying to prove they can make their own way in the world without fraternal reliance and dependence.

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Author: Chevron Spots

I am in my mid twenties and fighting my battles to discover who I am and where I fit in to this zany, beautiful world. I was diagnosed with Lupus in in 2008. This takes up most of my focus, as I want to share the experience of trying to live with and rise above chronic invisible illness, so to speak. I would like to stress very much the information regarding medications, medical procedures and illnesses are discussed from my point of view, and with my understanding, colloquialisms and metaphors. I do not attempt to be legally and precisely accurate for the general population, rather I try to be emotionally and descriptively true to my experiences. I hope I can help in understanding others with chronic illness by providing one more personal recount of just how spontaneous and difficult these lives really are. One day I hope to visit every continent, climb some pretty high mountains, sleep in an ice cavern, marry a wonderfully understanding man, have children and teach more children. Mostly, I just want a simple life, you know the house with a husband and kids. Oh, and no pain.

3 thoughts on “Interviews with the parents

  1. Nice words Jess. Nice words.

    Like

  2. Pingback: Act Three: The resolution is exposed to the protagonist | This Lupus Life

  3. Pingback: Over The Counter Pain Management | This Lupus Life

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