I promised myself and others that I would create this post today to keep track of and share my experiences while taking a course of steroids (oral prednisone) for the treatment of ms. I have a limited window of time so will jot down whatever comes to mind then add more as and when I can. I will organise all ms-related posts into a category called 'My Life with the ms Monster' (a possible book title I've been planning for years now). My intention is to: keep a record for myself; to reach out to others who might benefit in some way from reading about my experiences; and to give insight into my life as a person with a disability. This last point was inspired by those who have already shared their stories in support of the campaign for a National Disability Insurance Scheme for all Australians.
First and foremost I will start by saying that this past week is in no way typical for me! The overwhelming fatigue that accompanies ms means that I must usually 'nanna nap' for up to three hours every day. Increased energy (occasionally almost manic!) and sleeplessness are just a couple of the side effects of steroids that I love because I get so much done! For example, this week I have managed to stay on top of most of my household chores and even cook a couple of pancake- and bacon-and-egg- breakfasts for my husband and son (Tig and Kai)! In a non-steroid week, the washing, folding, shopping, meal preparation, dishes, tidying etc etc often consumes all my energy and ends up swamping me.
In addition to all the tedious yet necessary life maintenance chores, this week I was able to go sailing twice, do a whole lot of spring cleaning, work in the garden, do my stretching exercises, go for a couple of 40 minute swims, enjoy dinners with friends, finish my January blog for AT Wire, be on hand to prepare school holiday meals and snacks for Kai (now 9) and his friends, attend to some long overdue household administration tasks, write endless 'to do' lists, and indulge my addiction to playing Words with Friends! As I said, no way typical.
One of the not-so-great aspects of the steroids is that my strength improves ever so slightly to the point where I feel confident enough to speed up a little when using the wheelie walker to take the couple of steps from my shower seat to the bench where I dry my hair. Result: a huge fall backwards, a scare for Tig and Kai and an undignified lift back into my chair. I am still discovering more bruises!
First and foremost I will start by saying that this past week is in no way typical for me! The overwhelming fatigue that accompanies ms means that I must usually 'nanna nap' for up to three hours every day. Increased energy (occasionally almost manic!) and sleeplessness are just a couple of the side effects of steroids that I love because I get so much done! For example, this week I have managed to stay on top of most of my household chores and even cook a couple of pancake- and bacon-and-egg- breakfasts for my husband and son (Tig and Kai)! In a non-steroid week, the washing, folding, shopping, meal preparation, dishes, tidying etc etc often consumes all my energy and ends up swamping me.
In addition to all the tedious yet necessary life maintenance chores, this week I was able to go sailing twice, do a whole lot of spring cleaning, work in the garden, do my stretching exercises, go for a couple of 40 minute swims, enjoy dinners with friends, finish my January blog for AT Wire, be on hand to prepare school holiday meals and snacks for Kai (now 9) and his friends, attend to some long overdue household administration tasks, write endless 'to do' lists, and indulge my addiction to playing Words with Friends! As I said, no way typical.
One of the not-so-great aspects of the steroids is that my strength improves ever so slightly to the point where I feel confident enough to speed up a little when using the wheelie walker to take the couple of steps from my shower seat to the bench where I dry my hair. Result: a huge fall backwards, a scare for Tig and Kai and an undignified lift back into my chair. I am still discovering more bruises!