How it started
Back in February of this year, I was scrolling through my social media feeds, and as always, stopped to read the latest from Shift.ms.
They were looking for volunteers to become “MS Buddies”, to offer support to newly diagnosed MSers.
There was no hesitation on my part! I completed the online form on Shift.ms Facebook page, and I hit that “submit” button! I then received an email from Ellie at Shift.ms to arrange a meeting/Skype call to have a little chat and to explain why I wanted to become an MS Buddy.
After the Skype call
After the Skype call with the lovely Ellie, I was then sent information via email to read about becoming a Buddy, together with a short personal bio template to complete, which I completed and then emailed back to Ellie. Everything was so straightforward!
The preference forms and the personal bio are completed to give insightful information as to where you live geographically, what type of MS you have, and whether you would like to communicate with your new MSer via email, telephone, or to meet up in person. This information helps to match you up with a newly diagnosed MSer with similarities to yourself.
In only a few weeks, I was matched with my first MSer and recently I have been matched up with a second! My matched MSers’ preferred method of communication is via email, and it is going really well! Topics of discussion are varied from vitamins, relapses to recipe ideas!
Ellie is my contact, and keeps in touch with myself and my fellow MSers so we are never alone.
Why I decided to volunteer as an MS Buddy
Well, I have MS. I have had MS since 2010, and diagnosed with mild MS in 2012. Due to one too many relapses in 2014, I was then diagnosed with RRMS in 2015.
Although Shift.ms has been running since 2009 and there are various MS sites out there to offer support, I just didn’t want to know back in 2010. For the first two years I really didn’t have a confirmed diagnosis, and I was told that “it could be mild MS”, so I was definitely in limbo land, and I was definitely in denial for those two years also!
I remember those days back in 2010 though. I was so scared and I felt so alone. Fatigue was scary. It came on so quickly and I didn’t know what to do about it. Relapses were beyond frightening. The thoughts which ran through my head as to what was happening to my body scared me and I would sob for days, full blown sobs, and every day I would cry myself to sleep. I also didn’t have the social media links and the online support I have these days, and as I was in denial, I definitely wasn’t going to go looking for online help and support.
However, I would have loved to have been able to talk with someone who knew exactly how I was feeling mentally and physically – to tell me to be easy on myself, to give it time, and although it feels scary now, to hang in there and not to give up.
I now believe, after 9 years of living with MS, I can share my experiences and offer my support and compassion to a newly diagnosed MSer. To offer that little bit of reassurance, that little bit of hope, and to tell them to hang in there and not to give up. I personally believe if someone is offering their support that has first-hand experience in the same symptoms and concerns as you; it really does make a big difference.
I am by no means an expert. I am still learning. I am still learning about MS every day – but my caring, empathetic, supportive and listening nature will always be with me, and always with you.
Hello! My name is Toni, and I am a 46 year old Aussie now living in the UK. I love nature, practicing Yoga/Meditation, coffee and naps! Oh, and MS has been living with me for 9 years. You can follow my MS journey at https://mymsrollercoasterride.wordpress.com/
Other guest blogs