Lucy Phillips was diagnosed with relapsing remitting MS in 2016 – just three months before her wedding day. Here, Lucy talks dealing with loneliness, finding support, and staying positive.
I was diagnosed with MS in April 2016 – three months before my wedding day. I smiled the whole way through my appointment with my neurologist, thanked him for seeing me and left. My partner insisted we talk about it; we stopped in the hospital coffee shop on our way out and I remember him just staring at me. Waiting I guess. Then it hit me, the reaction he was waiting for came.
But strangely enough, as much as the diagnosis was not what I wanted, not for one minute, I felt relieved to finally know what I had been suffering with for the past five years. The numb legs, tingling up and down my arms, the constant fatigue.
I found the next few months extremely overwhelming, the whole process off reading up on medications, choosing the one which would be best suited to me and knowing I could be taking it for the rest of my life.
I slowly began telling people and I was offered more support than I could begin to explain. I have a great support network of family and friends so I am incredibly lucky. But even with all of these amazing people around me, I still found my experience with MS incredibly lonely. As much as people try, they can’t understand. When I forget my words in an MS fog moment, or feel my body completely exhausted and drained, but too tired to even sleep.
It’s made me realise a positive mind set is the most important thing you can have. And even though some days it’s hard, it’s got me through a lot
Earlier this year I started filling out online market research forms, it was great because I even learned things about the condition that I didn’t know before. I was then invited to a group interview in London, and decided to go to find out more about it. I was met by a room of four other women, all had RRMS, all from different walks of life and all on the same treatment.
The hour and a half I spent listening to these women talk about their own experiences living with MS and sharing what they knew about it with me was more than I could ever have imagined. I no longer had that ‘loneliness’ and I knew that all these strange things that were happening to me were kind of normal. I heard the women tell me how they have had families, and live as normal a life as they can.
If I had to give someone in the same situation any advice, I would definitely say find local groups and speak to people who have the condition; see that there is a ‘normal’ life after diagnosis. I would also recommend the MS Trust. I was recommended the MS Trust website by an MS nurse after I was diagnosed and it has been so helpful. I have particularly liked following on social media, and reading other people’s posts and stories.
Being diagnosed with MS has changed my outlook in lots of ways. It’s made me realise a positive mind set is the most important thing you can have. And even though some days it’s hard, it’s got me through a lot. I have a positive outlook on my life now, not everyday, some days the negative or sad thoughts creep in, but I know I still have lots to look forward to in life, lots of new experiences to have and enjoy. And the MS is just tagging along too!
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