5 Important Milestones From My MS Journey
This weeks post is part of A Chronic Voice’s September Linkup Party which is a monthly get together for people with chronic illness to share and learn from each others experiences.
September’s Writing Prompts were:
In this post, I share 5 important milestones from my MS Journey. From struggling to accept my diagnosis to learning about my illness and accepting change. I hope you enjoy this post and find some solace in knowing that no matter where you are in your journey, change will come.
My MS Journey
When you are first diagnosed with a chronic illness, you are told the name of the disease you have, what causes it, the symptoms you display and the treatment options that are available to you. What no one tells you is that receiving such news will trigger many emotions, and how you feel about yourself, your life and your diagnosis will change over time. And like grieving the loss of a loved one, you will experience different stages as you come to terms with your diagnosis. Each stage will be temporary, and when you look back, they become milestones in your journey.
Everyone’s journey is different, and this is mine…
I really can’t recall anything but fear when I received my diagnosis. All I remember from that day is the words “you have MS”, then the world took on a surreal, dreamlike quality until the day I finally came to terms with my fate.
Why is struggling a Milestone you may ask? Aren’t milestones positive things? Well, not always, a Milestone is a marker used to describe a significant event or moment. By this definition, the initial struggle of coming to terms with my diagnosis is an important milestone as it marks the beginning of my MS journey. When I was first diagnosed, my biggest struggle was trying to understand why this had to happen to me. I initially thought that I was to blame for my MS. Of course, this is ridiculous. You don’t develop MS as a result of something you did or did not do. There is nothing I could go back in time and change to make things any different. But for more than a year after my diagnosis, I struggled to accept that my MS diagnosis was beyond my control and there was nothing I could do to change that from happening.
In the first few years of my diagnosis, there was a lot of resistance in the form of doubt about my MS. My MS is mostly of the ‘invisible’ kind. There is nothing that gives away my illness by just looking at me. Months after I was diagnosed I had to move interstate and had to find a new GP. There was a lot of scepticism when I told my new doctor that I had MS and due to the unexpected move, I had very little in the way of medical history for my GP to refer to. All I had was a bunch of sensory symptoms that were difficult to verify and could be the result of more common causes. I had to undergo the diagnosis and elimination process for the second time, and I began to doubt my diagnosis as well. Then one day my MS progressed, and I had a severe relapse. There was no denying it. I had MS. And even though this chapter in my life was one of the hardest I’m glad that it was over and there was no longer any doubt about my diagnosis.
This milestone marks the transition from the surrealism of being newly diagnosed to regaining control, growing and moving forward. Once doubt and denial were resolved I wanted to be back in control of my life, I was ready to fight back. Learning about my MS and the way in which I could take care of myself better was one of the first steps towards regaining control in my life. Through the help of my MS nurse, I learnt how to make modifications in my life so that I could still do the things that mattered to me the most. I learnt that putting my health first was not selfish and by doing so I would be able to accomplish so much more. I collected advice and tips from as many sources as possible and tried everything my doctors said was safe for me to do. There was a lot of trial and error, some things I tried provided no results but when I found something that worked, it would change my whole outlook on life.
Building my support network was a milestone towards realising that this journey I was on wasn’t going to be the lonely place I thought it would be. I had people around me who wanted to help, they just didn’t know if the support would be well received, and they also weren’t sure of how to be of help. The first thing I had to do was ask for their support, and this is hard to do when you are used to being independent. I swallowed my pride and said the words, can you help.
The next barrier was to eliminate the feeling of not knowing what to do, which people often feel when supporting loved ones. This meant educating them in how to support me best. I took my family to MS information sessions and my appointments. It wasn’t long before they were able to help turn a major incident into just a bump on the road through their support.
Change is inevitable and is probably the only thing I can count on happening from this moment on. I’m going to call change my final milestone in my MS journey because I now understand that coping with MS is really just about adapting to change. The difference this time is that I am more resilient than I was when I started on this journey.
That has been my MS journey, so far…
My advice for anyone experiencing the early stages of a chronic illness diagnosis is, whatever you are feeling now. It is temporary. Even if your illness isn’t.
And when that stage passes, especially the difficult ones, you can look back and say I survived that. It will become a milestone in your journey, and that is cause for celebration. So be sure to celebrate them, even the bad ones.
Images courtesy of Ulrike Mai
Check out other posts from the September 2017 Linkup Party @ A Chronic Voice