Today I had two great meetings with people that got me reflecting on how has my work been affected by MS? When I was first diagnosed I was finishing my BA with great plans to change the world. I then joined this amazing campaign (@fordhallfarm) that I thrived in for 2.5 years working insane hours. At the same time, I held 3 part-time jobs on the side. So, basically I was always an extreme over-worker. In 2010 I completed a MSc from Wageningen Uni. But this is where my MS (and diabetes) doubts really kicked in like a little black cloud hovering in the background. I started studying International Development with the plan to work abroad, but I changed it to Rural Sociology, my work history, as I thought working abroad in such challenging environments would cause problems receiving the medicine I needed. Whilst this wasn’t a huge sacrifice – I still had options and skills so its all relative – it was the first time that my medial situation really became an obstacle to what I wanted to do. Since then I have struggled to find my feet. I am living in a different country so I am already at a disadvantage and must start over from the beginning (a common tale). But now I have to be realistic about what I CAN do. I know it is impossible to hold down a full-time job. I am also wary of taking on a new job for fear that the stress would cause an episode, or that I would find it too much and fail at it, or that maybe I can’t react as quick as I used to etc etc, you know the drill. It is incredibly frustrating. I have a great education, excellent skills, and yet this MS monster is a big brick in the way. Relatable? It’s not all bad news by any means, but it is also ok to admit that there are challenges. I needed time to ‘grieve’ this loss of a career I had aimed for. Since then, I have started my own company so I can work on my own terms. And I have co-founded an amazing social enterprise (@arnhem_together) which is keeping me busy. I am very happy with what I am doing and feel good about it, but it isn’t where I thought I would be when I began the employment path. I still have so much to offer, but it feels that this disease casts a rope on how much I can do. Please note, this isn’t a sob story. I am not feeling sorry for myself. But I do think it is ok to admit that things haven’t turned out how you expected them to be. I now get so much energy from the work I am doing, meeting people and creating new opportunities for them. But it also costs me energy. I have to make choices and that usually means I can’t do everything I would like to/used to be able to. That is hard and can be confrontational. Sometimes on a day basis. For me, MS means not achieving my dreams and having to make everything a bit smaller and a bit less exciting.
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