Managing MS - Part 1
My first appointment at the hospital was very confronting, I remember walking into the specialist clinic and seeing many people with and without disabilities waiting to see neurologists, I tried very hard not to cry. My number appeared on the screen and I was called in. The neurologist referred to my MRI results and once again confirmed that I had RRMS, I cried. He asked some questions including “do you smoke? do you drink alcohol? do you want children?”. The first two questions were fine as I didn’t smoke and rarely drank however I found the latter question odd. I then found out that some of the treatment options were not suitable for people who would like to have children. He suggested I see a nurse who would be able to assist me with choosing a treatment option.
Straight after my appointment, I met with the nurse who was so supportive, she explained all the treatment options available for RRMS and their side effects. Once again, I cried. She gave me the brochures to all the medications and told me to take them home, go over them and decide which medication I would feel more comfortable taking.
I recall thinking, ‘how am I going to choose which medication to take!’. I have always been the type of person to try and avoid taking medication and on top of this, now my choice would need be based on whether we wanted to have children or not! The nurse told me that I didn't have to make a decision straight away however the sooner I made the decision, the better. To look at it as if I was making an investment in my future.
I took the brochures home however every time I tried to read about the medications, I would cry. It took me 2 to 3 weeks to be able to read the brochures and make a decision. After much consideration and discussions with the nurse, I ended up choosing a medication called Copaxone which was a daily injection. The relapse reduction percentage rate was lower than the other medications and I wasn’t entirely comfortable with the side effects however it was the only one I felt comfortable taking compared to the other medications and their side effects.
My husband and I went to the hospital and the nurse provided training on how to administer the daily injections. The medication came with an autoject device (below) which assisted with injecting.
My first injection was done at the hospital in my stomach, I recall feeling ok however the area was a little sore and red. The nurse advised me that it would take a few weeks for my body to get use to the medication. I felt so scared however grateful to have my husband and the nurse supporting me through this process.
The daily injecting began, I would take out my medication 1 hour prior to injecting every night and in order to reduce pain and infections, I would ensure the area was clean, heat up the area that I was going to inject with a heat pack, inject the medication using the autoject device and cool the area with an icepack afterwards to reduce the pain. I recall being positive and thinking, ‘it’s fine, I can do this, hopefully this will work!’.
Within a couple of months, I was dealing with bruises, lumps and pain so I seeked further assistance from the nurses. I was constantly crying, getting headaches and feeling mentally exhausted, it was a real challenge to keep positive. On some occasions I couldn’t inject the areas on my own so I would have to ask my husband to assist. I recall thinking, ‘I don’t want to be a burden, I don’t want him to have to be my carer’, I felt like I had lost my independence. On other occasions, I would have to work up the courage to inject in the area which would sometimes take over an hour!.
Within 6 months, I received a letter in the mail from the hospital for a review. I recall feeling anxious in the lead up to my appointment. Again, my husband and I were confronted with many people with and without disabilities at the specialist clinic, this time I cried. My review appointment consisted of the neurologist checking my vision, balance, reflexes and how I was going with my medication. It was also an opportunity for me to ask the nurse questions and provide feedback. Thankfully my check up went well, everything was normal, I hadn’t had a relapse and I had recovered. I asked the nurse if there was anything else I could do, such as change my diet to support my condition however she advised me that there was no specific diet for MS and it was best to follow the Australian Dietary Guidelines. She also advised me to exercise and to continue having regular blood tests to monitor how my body was functioning. It was important for me to manage my vitamin D level as it is believed that a deficiency in vitamin D could contribute to MS. I was given another 6 month script for my medication and an appointment for another MRI scan was scheduled.
A year had past since my last MRI scan and it was now time for my next scan. I recall feeling anxious in the lead up to my appointment, I was anxious about having the MRI scan and receiving my results. Once again, my husband lovingly accompanied me however I still had thoughts like, ‘what happens if there is an emergency and they leave me in the MRI machine? what happens if I need to scratch? what happens if I start feeling claustrophobic? what should I do if I need to go to the toilet during the scan?’.
For those that don’t know much about MRI scans, a brain and spine MRI scan usually takes 40-50 minutes and a brain MRI scan usually takes 15-20 minutes. Brain MRI scans consist of placing ear plugs in your ears, a foam wedge is placed on either side of your head to keep your head still and a cover with a little mirror over your eyes is placed over your face and is locked in for safety. You are given an emergency pump in one hand and are instructed to stay as still as possible to ensure clear and accurate imaging. It can be a terrifying experience and some people even opt to be sedated.
This MRI scan was with contrast dye which was another new experience for me, this also contributed to feeling anxious, I had thoughts like ‘what happens if I have a reaction to the contrast dye?, where does this contrast dye go!?’. I found that increasing the air flow in the MRI machine made me feel more comfortable and holding the emergency pump also helped. A tiny part of me wanted to squeeze the pump to make sure that it worked however I decided to stay as still as possible to try and get the scan over and done with as quickly as possible.
After my MRI scan, another anxious wait began as my next appointment was scheduled for a months time. The appointment arrived, I received my results and we were advised that I had no new lesions and my condition was stable. I recall looking at my husband with so much joy - this was such a relief!. The medication seemed to be agreeing with me so the neurologist advised me to continue doing what I was doing.
Upon receiving this great news, we felt it was now the right time to travel and finally reschedule our trip to Europe!
I'm participating in The May 50K with my amazing team the ‘Wellness Warriors'! Yes, we've decided to take on the challenge to walk 50km’s throughout May to raise vital funds for MS Research.
Research is the KEY to changing the future of MS.
You can show your support by sponsoring me and/or my amazing team at the following link:
https://www.themay50k.org/fundraisers/mirellapetrucci
Thank you, your support truly means so much xx