MS and Mental Health

Thirty years ago, I was diagnosed with Relapsing Remitting MS. There were no treatments and the prospect for my future looked bleak. Mobility problems, the infamous MS hug and chronic fatigue were some of my early symptoms. I was 23 and looking forward to an exciting new career in London and it felt as if this bubble of optimism had been burst. Looking back, I did not have the mental tools to help me with such a life-altering diagnosis.

As is usual when given this type of news, I had to go through a grieving process. However, I did not have the tools I needed to handle properly such a significant change in my life. I was not ready. A year after diagnosis, I had to make the tough decision to leave this metropolis and return to live with my parents in Connemara. Light years away from the Underground, red buses and the buzz of the big city. It was the sound of sheep, rain on the windows and the comfort of being back home again.

I remember one day I was in my bedroom and my mother came in to see how I was doing. The fatigue was crushing me, stealing any optimism I had. Once the question landed on my ears, I collapsed. It felt as if it had shattered my world and I cried. The heaving, breath-stealing sobs of despair, mourning the loss of who I was. It felt so dark. What could I do to have some life, when physically and mentally I was so unprepared?  

This day was a catalyst, as a friend of the family, Fr. Michael Keane visited me. He took me aside and talked to me about my MS. A kind, gentle man who could give me guidance on what I should do to help me live with this monstrous disease. The key was to focus on this moment, this day. It would not help me to live in the past, as I could change nothing, and the future had so many paths, it would be too much to deal with. He counselled me to enjoy the moment, to live my best life, now. This was real therapy. He shared how this had helped him deal with his own demons. His words were direct from his heart and have stayed with me since then.

Now, thirty years later, I still live by this maxim. There have been two additions to my routine, journaling and meditation. These techniques have helped me navigate declining mobility, fatigue and pain. I have also found having a psychologist so helpful when I have to pull myself up when I am going through dark days. That’s right, thirty years later, I still have bad days and even weeks. This illness attacks me mentally. It wants to crush me, draining me of life. Now I have  better awareness of when this is happening, when the dark clouds of negativity drop a deluge on me. Soaking me, washing away my hope.

I have learned it is better to let this happen, feel bad for a day or more, and then to begin the reboot. Pulling myself out of this pit. My technique is simple, as it needs to be. Complexity leads to me falling deeper in this hole. Small, easy steps. Eating, taking a shower, getting out of bed. This is my start. As I succeed in each of these tasks, the sunlight lights my path. My journal is open and I write down all my fears, anxieties, and pains. Purging myself, the negative is now on the page, no longer in my head. This ‘clearing off’ of the path is vital, allowing me to walk out of this negativity.

This technique works for me. Perhaps it could work for you, too. We need to learn the tools to help maintain our mental health. Chronic illnesses like MS can pull us down. When this happens, our symptoms worsen, leading to a negative spiral. We need to learn how to avoid this in the first place, and if it happens, to know what to do. Finding a trusted confidant who can help is vital. It could be family, friends or a professional. You need to find someone who suits you, to help you through this. You don’t need to do it alone.  

To learn how you can look after your mental health you can learn more here www.ms-society.ie/ms-wellness

To contact your local MS Ireland Regional office visit : www.ms-society.ie/what-we-do/regional-services

 

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