Mum, you were with me. We sat in St Vincent’s Private waiting for my appointment, looking at the magazines. We had a great chat about Daithí O’Sé, he was on the front of RSVP or VIP magazine. It was late June, so probably the start of Rose of Tralee season. Poor Daithí got a bit of a ribbing. To me he has always been a grown up, yet here we were reading that he is only 4 years older than me. How was that possible? Him a grown man, an old man, and me still a kid with my mum taking me to the doctor.
When I got the news from Prof Tubridy, Mum asked all the sensible questions. I sat and nodded. I knew it was going to be MS. I just felt it. I wasn’t that scared or upset – I was glad to finally have a reason for feeling so awful for so long. I reckon I’ve had MS a lot longer than the last 12 years. Chatting to Mum since, I probably had mild flare ups as a teen.
That appointment felt like a safe wee bubble in a way. Mum was there to ask the questions. Prof Tubridy was there to answer them. We were going to work out a plan. I was going to be minded. Of course, I was in the middle of a huge relapse at the time, so who knows how much I was taking in!
Afterwards, things got real. I’ve had some tough times. The first treatment I went on didn’t agree with me. It was back to the drawing board. Then I went on a different treatment, with daily injections. They took their toll too; my stomach has never fully recovered from the impact of the jabs. I had a second big relapse in 2014. I flared up badly every May-July from 2010 – 2015.
I remember Dad, the time you rang me to tell me about some information you had read on Google. You had gone online to see if you could help me. I was so chuffed you’d done that. Google doesn’t come handy to Dad!
It took me about 5 years to get to grips with managing my symptoms. For the last few years, I have been well. The medication I take works for me. I changed the way I eat. My MS is behaving. I try not to take that for granted. It’s always bubbling in the background. I am lucky.
I am lucky too with the support I’ve had from my family. And that starts with Mum and Dad, and my sister Deirdre. My MS has never been a problem for you. You’ve all just taken it on as part of me. You’ve accepted when I need to rest or to drop out of plans. The times I’ve called you to have a rant, you’ve listened and agreed with me when I needed a lift. Disagreed with me too, when I’ve gone too far, and need bringing back to earth.
I am sure you have been frightened by my MS. I definitely prefer that I have it, instead of watching one of you go through it. I hope that now you see it’s not to be feared. It’s only a small part of my life these days, and hopefully for a long time in the future.
Thank you for your kindness. The kick in the ass when I need it. The support. For everything you do and say, for reading all my blog posts. For shaking buckets. For sharing my story with people who are having their own troubles. I hope my story helps them.
Thank you for keeping your homes and hearts open. For being my biggest supporters.
You’ve minded me, in your different ways, for a lifetime. You still mind me now and I am really, finally, a grown up.
I am only raging I never got to the Rose of Tralee.
Wee Neevie x
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