This Lupus Life

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

Looking through the cracks

3 Comments

I have been struggling for the last two weeks with a mixture of my circumstances and just everyday life in general. Normal people stuff. I must confess to becoming a victim to the lifestyle of a student and allowing procrastinating moods to overcome my study periods. I must also confess to allowing things which are out of my control to over take that which is in my control.

My university semester began in the last week of July. It will continue until November. There are two weeks during this period where I am not required to attend lectures, and then one week to prepare for exams, which are in November. I began my new course of medication, Imuran, Epilim and Prednisone, in June following my stroke seizure. I have been living with the largest brain mass so far in the language and memory center of my brain from May and likely some of it is still there. Recently my cat Polly has been exhibiting signs of stress by extreme misbehaviour, which in turn has caused quite a lot of stress and turmoil both in the house and within my family.

I lost sight of my most practical and basic thinking ability with this latest mass development and it created problems. Walking down the street I learned through some very near misses I had to stick to the pavement and footpaths. Even crossing through carparks. Gone were the days of walking with my headphones in or making calls. These were too distracting. I couldn’t shop with just a backpack but needed always to take my full roller bag. I have a list by my bed with things that I have to have when I leave the house, otherwise I forgot them.
-purse has cash, debit and credit card, licence, student card and travel card
-keys on a carabiner to hook on my bag
-water bottle (full)
-hanky
-note pad and pen
-bandaids
-glasses
-lip gloss
-panadol
-hat

In each room I enter regularly I keep a pen and paper to write things down in case there is something I think of that I need to remember at some point.
-shopping list
-things to do daily/weekly
-people to contact

Everything feels so basic. Too basic for me. Yet it feels so necessary to me that I perform each task with pleasure one step at a time. I get what I want done one step at a time, one foot in front of the other, no short cuts. It pleases me to perform my tasks as they should be.
Never cross a street without looking both ways three times. Actually LOOK too, not glance. Mentally acknowledge what I see. When I am certain it is okay I continue.
I feel like a child. If I wasn’t so sure it was essential for me to be this way I would start to wonder about my sanity, my mental health, my cognitive function. But I keep optimistic that I am healing and I will recover and I need to be this way so I don’t hurt myself. These thoughts keep me sure and positive.

The Prednisone stops my concentration and prevents me from focusing. It also gives me strong impulses of irritability and stubbornness. Once upon a time they would have made me irrational and uncontrollable flashes of anger or depression. The kind of thing that b*****es are made of. I would like to think that my meditations and emotional developments of self-awareness through my yogic past have helped me to become a person that just gets unbearably pushy instead of hurtfully aggressive.

Maybe it is just that I’ve grown up.

My studies have suffered but I am at peace with that and know I can repeat any subject I fail. I also acknowledge and accept that I do not need to achieve 80% or even 60% in my units. I need to pass and understand the content. I know that if I pass with my present illness I am doing extremely well. I know that there is no cause to worry if I do need to repeat units because there is no external pressure on me to complete my entire course first time around or within the time frame the university suggests for full-time students. It is better for me to take my time and do what I can, when I can, to the best of my abilities.

I have just handed in two major assignments. My tutors know I was having difficulty, one even proof read half of my assignment. A friend who is very insightful into written assessments and anything textual has been helping me edit my work and providing me feedback, as has my mum. I didn’t realise until after one assignment was submitted that I had answered a different question than what was asked. I was confused. I told my lecturer but I don’t worry. It is in my past and what I have considered as my narrow-minded focus of existence does not allow me to reflect on past assignments at the moment. I will just look further ahead to the next assignment and perhaps start it early.

Mum stayed last weekend and we spent much time together but more apart. It is the most time we have spent apart when we are together. I know I will be stubborn and unwittingly boss her around so I tried to tell her each day what I expected my plan would be, ask her what hers was and then sit in silence. She would make me teas and sit in another room reading magazines. I couldn’t speak to her sometimes when we were out as I felt it would come out harsh. I had to ignore her sometimes even as I felt irritable and didn’t want to be rude. I needed to walk on my paths or stop at intersections, even in malls, so I didn’t run into people. Sometimes she asked questions or spoke when I was trying to put one foot in front of the other. I think sometimes I gave her strong looks. Perhaps she thought I was angry at her, but I was too far in my own head, concentrating on getting to my destinations.

I walk a tightrope line, balancing always between who I am and where I am. My existence is fragile. My movements are delicate. I know the Prednisone is working because my functionality is returning to normal slowly. Until then I will just take my time and and watch my life unfold as an observer, the real me watching through the present me.

Advertisements

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 “Looking through the cracks

  1. Hi Jessica, Though my life circumstances, and my illness, are different from yours, I can definitely relate to your struggle. I suffer from bipolar disorder & I’ve been stuck for weeks in a deep depression while having problems getting the medication which has sustained me in the past. Luckily, I have friends & family who are aware of my predicament & who are supportive . . hang in there! . . Sam

    Like

    • Thanks Sam, I know it’s hard to keep normal functions when things are tough but I feel good being able to share and know others feel the same things. I hope you as getting on track also.

      Like

  2. Pingback: Exposed | Nitya Nata

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s