I will start with the facts.
I was told by my neuroimmunology specialists on September 12 that there was more inflammation in my brain. The inflammation is caused by my Lupus Cerebritis, which is an over active immune response causing the build-up of lymphocytes in the blood vessels of my cerebellum. Most often these build-ups and blockages, lesions, occur in the right occipital lobe of my cerebellum. I have a minor scar present due to a past lesion which has caused some ongoing residual effects. There are things such as a lower level of coordination, tendency to misunderstand spoken language and a bad short term memory. As well as now having epilepsy. A frequent occurrence, depending on the location and size of the lesion as well as that I develop depression. A certain flatness. Almost a lethargy for life. Overall you can say I was coping with everything.
When I was informed of the new brain lesion activity
it was a blow to me and the family. We had anticipated the Rituximab (Rituxan) infusion from last year would have lasted longer. The doctors know I (my immune system) responds well to a high dose of steroids in quickly minimising the lesions. The answer therefore was to go back on a 50 mg dose for 6 weeks to see if there was any improvement. This may seems like a simple thing, but if you have been on this dose for any longer than a week then you can appreciate how much this can drive you insane.
I am flat. I do not need a stronger dose of antidepressants, I know this won’t help me. I have realised I need at least 90 or more minutes of physical activity each day to burn the excessive energy and agitation. Yet the lethargy that comes with the medication brings an ambivalence to engaging with life. The agitation is enhanced tenfold when I come in to contact with any other conscious being. Yet if I do not engage daily with these beings I become as equally agitated. I have a need to control, to be in control and to be organised by someone else. I am sucking my way through so many packets of menthol lollies and barley sugars just to keep my mouth occupied from not eating everything in sight.
I cannot concentrate for more than ten minutes at a time. Focusing on one specific topic, rather than trying to juggle five is an immense struggle. I hope you can begin to comprehend what a challenge I have been facing as I exist through the big bout of pre-practical experience assignment submissions at the end of the semester. This is the hardest part of any semester and I start my practical placement at my school next Monday.
My clothes do not fit. Because I cannot tolerate the excessive appetite increase. I am eating well, healthy and a lot of fruit and vegetables. But all of the time I am eating. And without an actual ability or the finances to engage meaningfully with a physical exercise program there is no outlet for my energy and the food I am taking in. Except when I walk. And we all know that this September the weather has not been kind for the people who need to travel on foot everywhere. So my clothes don’t fit. And it is all I can do to sit at uni and at home thinking about how they don’t fit.
you may be able to get a glimpse into my mind and how well I am not coping on the steroids.