Since my MS diagnosis in November 2016 a lot of things have changed for me and the biggest one is that I now have to plan a lot more, be more organised, have a contingency plan and include self-care and proper rest. This is mostly due to they fact that I now know that even simple tasks can affect my energy supply quite dramatically. Since I don’t want to end up finding out the day after that I did too much I started to monitor certain aspects: e.g. Napping, fatigue, mood, sleep, exercise, and food. This is mostly to see if I can find triggers or relatsionships that will help me control my symptoms better. I am a scientist after all and this is just another data set 😉 The biggest culprits for me (at the moment) are fatigue and tingly to numb arms and hands. As with everything – having more information and knowledge means that I can mange my life better and limit or manage the impact of the MS and its symptoms. So armed with this new information I am being more mindful about conference attendances and how I plan for them. So here’s how I’m preparing for the EGU 2017 Genreal Assembly in Vienna at the end of April:
Accommodation: I went self-catering again and this time not just because of the price but because it will allow me to prepare my own breakfast and lunch. I have been exeperimenting with my diet and I found that certain foods do impact my factigue and therefore self-catering makes sense. It also means that I can go for dinner with other confernce particpants since having one meal a day where I am not as strict seems to be fine. This time I was a lot pickier about the location of the accommodation in regards to both the conference venue and the city centre to minimise travel times on either side of a conference day and to allow me to pop home more easily should I need a power nap.
Conference programme: I easily get carried away with all the cool things happening and therefore have to plan my conference week more carefully. With that in mind I copied my personal programme into my conference journal and added the things I had to attend for varies reasons – then I added the things I want to attend e.g. other presentations, workshops etc. And then I checked if there were any sessions of interest scheduled for the days I had some gaps in the day and added them either as want to attend or maybes. Everything colour coded of course. For break times I plan to hang out in the ECS lounge, Bier Garten or find a quiet space somewhere to do some stretches.
Conference bag: One of the main things with MS & fatigue is the fact that I use up more energy for eveyday tasks and that means I have to be more resourceful with my energy (check out this great explanation: Spoon theory). With that in mind I bought a shoulder bag & I’m taking a small backpack so I have a choice depending how I feel – both bags are too small to fit my laptop so I’m not tempted to carry that around with me. Again planning is key so I made a wee list of things that I will need during a confernce day: Conference notebook, Bullet Journal, pens, iPad, iPad keyboard, snacks, water bottle, lunch, small headphones, mobile phone, charger, charger cable, business cards, wallet. Everyhting except the lunch & snack fits into the shoulder bag and everything will fit into the backpack.
Exercise: It turns out that exercise helps me a lot in managing my fatigue, energy levels and overall wellbeing – so keeping up with the routine (especially swimming) while travelling and attending a confernce can be tough. But as with everything else knowing how big a difference it makes it will hopefully be easier to stick to my conference exercise schedule. I stretch for 10 min every morning using the Sworkit app – depending on room size I do a standing stretch or full body stretch. I will also try and go running/walking on some mornings since I feel a lot better after some cardio exercise. I use Strava and have already mapped a route near my accommodation I’m staying in. De-stress exercises – I recently started doing Body Balance and I absolutely love it – depending on the flat size I hope to be able to do some routines – as a back up in case the running doesn’t work out.
Having fun: This is a major part and just one of the reasons why I love the EGU General Assembly – it’s so much fun and I can’t wait. If you see me feel free to say Hi and ask any questions. Happy to chat about science, MS, or anyhting in between.
If you are attending EGU and have a chronic condition or disability please come to the Chornically Academic Splinter meeting I’m organising this year.
I hope some of these tips are useful if you’re travelling or attending conferences with a chronic condition – or you have some other tips then please share them in the comments.