It has been far too long since I last shared my thoughts through this forum; forgive me. I confess it is sometimes hard to write when one is busy trying to process so much change. I have been on Flolan since the 9th of December and have been adjusting to constantly having my pump at my side. At first I was constantly walking off without it, but as this invariably resulted in a painful tug on my central line, I was quickly cured of that habit.
Kristi spoiled me on Christmas day with a wonderful gift: a box full of ribbons, all in the colours I usually wear. The hideous black strap of my pouch was immediately hacked off, and has since been replaced with an array of beautiful ribbons, which I sling over one shoulder to attach my drugs to.
It has not been too easy arriving at university with an oxygen machine, mobility scooter and a drug pump. All the normal first-year anxieties about acceptance, the workload and finding routes around campus felt a little bit worse when I considered all the equipment that I cart around with me. I was lucky enough to have Tayla, my fabulous cousin, staying with us for 2 months at the beginning of the year, and even luckier that she was keen to tag along to some of my orientation sessions.
With her at my side I was able to manage the physical snarls, and now I that I know my way around silly things such as lifting bags on my desk space or finding wheelchair-friendly routes don’t seem quite so daunting. In fact, the Humanities buildings which house my tuts and lectures seem to be wonderfully accessible and I have found I can manoeuvre around campus with relative ease. There is one elevator which is very creaky, claustrophobic and creepy… but, all things considered, I have been pleasantly surprised. Go University of Cape Town (UCT)!
I am currently doing Philosophy, Psychology and English. I want to major in Psych and Philosophy, and have been loving the courses so far! English has also been incredible. I think, however, that I might slow my degree down and drop a course just for now. I will pick all the work up later. I can definitely manage the workload if I push myself – as I did in matric – but the more I think about it, the more it seems ridiculous to maintain a schedule that will tire me out, when there is no pressure or urgency. I’d rather have less stress and be able to focus on the fun of university life.
It has reached that time when we should be seeing evidence of the Flolan working, and I am pleased to say there have been a few small signs of improvement. However, patience is required and we cannot say with certainty that the drug has changed things, especially seeing that I have had a nasty cold, which has stubbornly turned into a chest infection over the last two weeks. To monitor my symptoms is one thing, but to isolate the cause of each rise or dip is nigh impossible. Thus only time, and some more 6-minute walk tests – will tell.
It is hard to believe that it is March already. This year has had a bumpy, confusing start, yes, but overall it has been fun – a time of reconnecting with family and friends and finding new beginnings. There is much more to say about life on Campus, and I hope to share my stories soon.
All my love and gratitude J Jen xx