Disclaimer: This is just my experience and sharing my feelings in my journey. I am not against medication and I understand there is certainly a time and a place. Everyone is on their own journey and that's ok, this is the path I chose, and I'm forever grateful that I did!
It's the same time every year and it brings up the same emotions and thoughts... 'Am I making the right decision?' ‘Should I be medicating?’ ‘Why do I bother getting these scans when I know what the neurologist will say and how this whole process makes me feel?’ - I know I am making the right decision for ME but I still have these thoughts. I am 100% happy with the decision I have made but these appointments just bring it all up again.
Sometimes I forget I have MS but these appointments always bring me back to reality.
I have never found a Neurologist that I really connect with. I have seen 3 different ones in the past 4 years and I haven’t truly been happy with any of them.
One comment that has always stayed with me is, 'What kind of a mother do you want to be?' This was referring to my decision to not medicate. Who actually says that?! I found this so rude and insensitive!
This particular doctor then palmed me off to see another neurologist for ‘a second opinion’, which I (and Dave too) was very open to. Whether this was the case or not, I just felt like he was sick of seeing me and me telling him I was still not looking to medicate.
So my next appointment I saw a lady who was nice and somewhat respectful of my decision, she still was unsure why I wasn’t considering medication. After that one appointment she moved on to another hospital and left the Royal Melbourne MS Clinic. I decided to stay and got referred to another neurologist for my future appointments. Maybe the next one would be different and will show me the respect I deserve, after all, it is my body and I get to decide what I put in it, right?
Am I asking for too much? Perhaps I am…
So just quickly... what would my life look like if I were to medicate?
I have done so much research and have gotten advice and opinions from many professionals, naturopaths and people living with this disease, that I trust and appreciate.
MS is an inflammatory disease that attacks the central nervous system; brain, spinal cord and optic nerves in your eyes. In MS, the immune system attacks the protective sheath (myelin) that covers the nerve fibres and causes communication issues between the brain and the rest of your body.
So the idea of the medication is to suppress our immune system so that our body does not attack itself and consequently, making you a sponge for any kind of infection. Not to mention all the studies of the horrible side effects and health complications that come with them too. It's scary!
Knowing what I know and what I believe in, going down this path for now, is the best decision for me.
The last appointment (2018) I saw another lady who had obviously seen my history and I was in the appointment for about 5 minutes. This was the first appointment that mum had come to with me. I told her before we went in, she will do all the checks, the same sort of tests I got the very first time I saw a neurologist: balance, eye sight, strength etc. However, this time was different.
She pretty much got straight to the point and asked me if I had changed my decision to not medicate, she briefly spoke about new medications out there now and that was it. She could tell I was not interested in it and sent me on my way.
I guess I shouldn’t be surprised, they are doctors, they get kick backs on the medication they prescribe and that is what they are taught and what they are all about.
I am sticking to my guns, I feel great. My lifestyle is dedicated to reducing the inflammation in my body, through my regular exercise, daily self-care rituals and my nutrition. Dave and I will continue to share our journey of creating our Healthy Lifestyle. It is forever changing and we are always making small changes every day to help improve and maintain our health.
Why would I want to put drugs into my system knowing all the side effects they can have on my body?
Don't get me wrong, I totally respect anyone taking medication, there is certainly a time and place for medication but for me, right now, I choose not to.
Is it unreasonable for me to want some respect for my decision from my Neurologist?
I still want to keep track of my disease progression, if any, in my body, but I have questioned if it is worth it, for my emotional wellbeing. Is it worth me lying in that MRI machine for half an hour listening to the jackhammer noises and vibrations, feeling claustrophobic and anxious during the process? Not to mention the Neurologist appointment, the feeling of judgement and questioning why I choose not to be on medication.
For now, I will continue to get my annual scans and see a Neurologist every 12 months. I think it is important to keep an eye on what is going on and one day I believe I will cut back to maybe 5 year check ups. How great would that be?
One last thing, I just want to say a huge THANK YOU for the support that I (and Dave) have got from our Family and Friends along this roller-coaster ride, through the diagnosis and life journey of my MS. I am so lucky for the people in my life who continue to support us in any way they can.
I am super positive and will continue to do life the way I choose, knowing that I have the love and support behind me with any decision I make.
Just keep smiling :)