Patient Advice

Doug: I need plenty of rest, so I have to balance my day quite well. I make sure I do something positive each day, something that motivates me to just carry on living. I adapt this to my situation, so that I can rest when I need to.

Tatum: I have really struggled with feeling boring as a 25 year-old. I felt like this especially when I was with a partner who was very active. We did a bit of travelling together, and I found it really challenging because I couldn’t do some of the more strenuous things. I felt like the boring girlfriend, but what you have to understand is that you can only do so much and you do enough anyway.

Donna: It is important to be mindful of what you’re capable of today, rather than what you have lost. You don’t want to wake up one day and regret spending so much time focussing on what you couldn’t do, rather than what you could.

Hannah: When I get fatigued it obviously has an impact on my concentration, so before I started working, there was a lot of anxiety around how I would cope in the workplace. However, in reality I have managed better than I expected. I have got adjustments like a supportive chair and have been open with my employer. I think I am lucky that I work for a disability-friendly employer, but I have also proven that I can do the job. Since I know they are happy with what I am doing, I don’t get so worried about the fatigue anymore. My advice would be not to rule things out. Initially, I discounted a lot of jobs, thinking there is no way I would have the stamina for them. My advice is to try things and stay open to solutions. In the worst-case scenario when it doesn’t work out, you can look for an alternative role, with a better understanding of what is suitable for you. I think once you have positive experiences, you get more confident with trying things.