For this blog, I am looking back over the last 12 months of my Life with MS. I’ve had a lot of fun going back through my diary and social media to refresh my memory of a busy year!
New Year, New Meds
The start of 2019 was, thankfully, uneventful for me. I started Tecfidera in November 2018, and it made me feel unwell on and off for the first 6 weeks or so. By the time January came around, I was feeling much better, and loving the fact I didn’t have to inject anymore! We went on holidays in February to New York, one of my favourite places, and it was so much easier to travel without needles, sharp bins and wondering about having a room with a fridge. Travelling can leave me very fatigued and the long flight can cause some of my balance and stiffness symptoms to flare up, but I didn’t find the trip too bad this year. I love travelling, and hope it is something I can continue for many years to come.
If I thought Tecfidera had made me feel sick, it was nothing like the nerves of having to go on live TV! I was invited to appear on Ireland AM in March, in response to the huge media coverage Selma Blair had received after her MS diagnosis. I am so glad I did the interview, and everyone was lovely, but oh my goodness I thought I was going to either faint or vomit in front of everyone eating their breakfast at home.
Kiss Goodbye to MS Ball
I recovered from my telly nerves in time to be part of the KGTMS Ball committee again this year. On the 25th May, MS Ireland hosted its 2nd ball, which raises funds for research into MS. It was a wonderful night, and a great reason to get dressed up and have fun with friends. The committee arrange the ball – the venue, food and entertainment – as well as sponsorship and prizes, which are donated from all sorts of businesses and supporters of MS Ireland. Kiss Goodbye to MS is an international initiative and I loved being able to play a small part in the Irish side of things. https://kissgoodbyetoms.ie/
“My Invisible MS” - the annual MS Ireland Conference
The conference is one of the main MS events in my diary since I started going to conferences about 5 years ago. I get so much out of meeting other people with MS and hearing their stories. This year’s conference was held in Limerick, and the theme was “My Invisible MS” – this is something I think about a lot. My MS is invisible most of the time; my dodgy balance and occasional drop foot aren’t very obvious to others. I sometimes think that this makes it hard to explain MS to others - the dreaded “but you look so well” when you feel like rubbish can be hard to deal with. I enjoyed some of the talks, although I find the day very long and my concentration tends to fade after lunch. I had to call it a day before the final talks, but I was able to catch up online afterwards - https://www.ms-society.ie/what-we-do/annual-conference
MS and Me Blog Team Meet Up
The day after the Conference, I got to meet up with some of the MS and Me Blog team. It always amazes me that the little blogger group that I joined back in 2013 has now grown to almost 20 people. As you can imagine, it is hard to get all of those people in one room at the same time, but we try to meet up every year. This year only a small number of us were able to attend, but I am so glad I could go. We spend a lot of time chatting to each other on social media, and reading each other’s experiences, but you can’t beat a face to face catch up. Hopefully it won’t be too long until our next one!
MS Sessions - Bucharest
Organised by Shift.MS and the European Multiple Sclerosis Platform, MS Sessions is a Festival for young people with MS from all over Europe. It was a very enjoyable weekend and gave people a chance to speak to others about their MS, while socialising and having fun. In a group like that, nobody cares if you have to leave early to rest, or if you stumble or have a tremor, nobody comments or wonders about it. I am at the older end of the age-group now, so this was my last Sessions, and I would thoroughly recommend it. It is not an annual event, but it is one to keep an eye out for!
2020 and beyond
2020 is a big milestone for me. I will be 10 years diagnosed in the summer. Back in 2010, I wasn’t sure how my Life with MS would look by now. I know nobody can predict how their lives will turn out, but with a diagnosis it can feel like you are free-falling into uncertainty.
There were some tough times in 2019 too, but I try to focus on the good stuff. MS has taken things away from me, but it has given me other opportunities which I am glad I got to take. Looking back over the positive things I got to do in the last year makes me excited for the year ahead.
Wishing all readers of MS and Me, my lovely MS friends near and far, happy, peaceful and healthy Holidays. Chat to you in the New Year!