Getting My Shit (MS)

On Thursday 20th February 2014 at around 11.15am my world fell apart.
I went from being a strong independent self-starter to OMG how am I going to cope with this and feeling like an invalid in the space of a few words. All it took was the doctor to say “I’m afraid I have some bad news”. You hear them in movies, your hear stories from friends who hear them, but when you actually hear them yourself the world seems to stop spinning on its axis for a very brief moment of eternity. It is almost comical because the world and the people in it do not change but you do, instantly.
I had been feeling dizzy and light headed for a couple of days. I have high blood pressure but when it is running towards the high side I usually feel nauseous and sickly and this wasn’t how this felt. I felt stoned. And not in a good way. That revolting feeling when you turn your head and your brain only follows a second later. That’s how was was feeling and it wasn’t cool. I was trying to run my business and take care of my “massive” empire whilst feeling like an out of control drug addict. I went to see my GP. She seemed to think middle ear infection and said I needed to see an ENT or a Specialist Physician. I have a friend with a brain tumour so I, in my usual casual fashion asked if that is what we were looking for. She never answered.
The fastest way to get into the healthcare system is to go via an emergency room, so the next day that is exactly what I did. In fact I grabbed my mum and said let’s pop down to the hospital quickly. I wasn’t expecting to end up being booked in overnight after an MRI and a myriad of blood tests.
I think I knew then that whatever was going on was going to be serious, this wasn’t going to be a simple middle ear infection…
Of course, the toughest thing you can go through is the wait for results and the night was very long, and very fraught with all manner of anxieties and the doctor only showed up at around 11am the following day. Maybe if he hadn’t showed up at all the following days would have been a little less bleak but one cannot really shoot the messenger in this day and age if one doesn’t like what he has to say “I’m afraid I have some bad news, you have lesions on your brain that could be one of three things. You need to see a neuro ”
I was very casual and incredibly cavalier in my response to him. I said when you speak to the neuro please tell him I will come in on Monday to see him. I had my first ever, first ever solo, sculpture exhibition opening that Sunday afternoon and nothing was going to stand in my way of being there. Nothing! The Neuro had other ideas and I was instructed to present myself immediately, the next hospital was waiting for my arrival. So I drove myself home and then got mum to take me to the next clinic, at least this one was a little closer to home and this doctor I had already met before.
I was dispatched for a lumbar puncture on arrival and then got to spend the next 14 hours either on my stomach or on my back so as to minimize headache that was going to follow. The doctors were looking for MS (Multiple Sclerosis) and they found it.
The MRI had confirmed 3 lesions on my brain that hadn’t been there a few years previously and with the results of the fluid from the lumbar puncture and a couple more blood tests it was confirmed. I have been diagnosed with MS.
The news was a shock that I have only just begun to get over. It could have been worse, it could have been a brain tumor. It could have been worse, I could not have had a medical aid. It could have been worse, I could have had to face this alone, without the incredible support of my mother, family and friends.
This journey is just beginning… Now the medical aid needs to be petitioned to pay for the huge costs of medication. I have to work towards changing my life, reducing the hours I work, changing my diet, reducing the stress in my daily existence, no mean feat in this country. These things are a challenge but they are doable, and I intend to try because not trying means giving in to this really ugly disease and letting it take control of my life instead of me taking control of it, one day at a time.
I have spent the past week grieving for the future that might have been but the truth is I actually have no idea what the future might have been anyway. It isn’t like I intended to climb Everest before this diagnosis but it does mean that I intend taking that hot air balloon ride rather sooner than later, that I might not ever hike the Otter Trail but I will enjoy the walks in Delta Park with my faithful Amiga, even more now that I used to and that although that slice of cake looks awesomely delicious I may just enjoy that fresh plum a little more.
From here on it is about living life, loving life and trying to be a better person if only because I can be
This is the beginning of my journey and you are welcome to come along for the ride……

6 thoughts on “Getting My Shit (MS)

  1. Oh Mandi! And there you were, so bravely facing the world at your exhibition! I’m so sorry, lovely woman. Thank you for sharing this difficult story with us. You will be stronger for it. You are amazingly brave and strong and talented. Big Love. x

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