@Managing Uncertainty on Shift.ms

Managing Uncertainty

Hi Guys! We're currently planning an MS Reporters series aimed at helping people with MS manage the uncertainty that an MS diagnosis brings into their lives. I'd be really keen to hear your thoughts on any or all (or none) of the questions below: How do you manage this uncertainty? What helps and what makes it worse? What would you say to someone diagnosed today about how to deal with it? Who do you talk to about the future? What is the best way of communicating what it feels like to someone who has never had to think about it before. Most of all what would you like a series on this topic to look at? who would you want to put questions to? and what would you ask them? Many thanks, Millar

Hello I was diagnosed a year ago. How do you manage this uncertainty? I plan constantly, I work out different options, I take notes and send detailed follow ups. Most work stuff is done via email so colleagues can pick up at a moments notice. I send weekly handover emails to my colleague, which he only reads if I go off unexpectedly. I’m set up to work from home which means I can log in and hand stuff over if needs be. Our daughter has epilepsy and I was concerned brain fog would have catastrophic consequences on her medication so we have a project board in the kitchen which captures all the relevant information. What would you say to someone diagnosed today about how to deal with it? Get as much info as you can, chat to your loved ones, seek counselling and be honest about what you need. Try not to panic and appreciate you will go through stages of grief. Who do you talk to about the future? I don’t really. It is very confronting. I try to talk to my partner but use non violent language and minimise emotion , ie. I’ve been thinking about this or I’ve observed this / I feel xyz / I’d like you to stop / it would be good if you could... What is the best way of communicating what it feels like to someone who has never had to think about it before. Same as before and with honesty. When I do x / I feel like x/ the impact on me is xx / could we... instead? Most of all what would you like a series on this topic to look at? who would you want to put questions to? and what would you ask them? I would love to know more about how people manage this while working full time. Situations they’ve had, how they’ve overcome and benefits of the diagnosis. For me, I’ve had honest conversation with senior people that would’ve never spoken to me without an MS diagnosis. Thanks Rach