- Chronic Fatigue Syndrome / M.E.
- Interviews
Mayden92's interview
How did all start?
With growing pains and crushing fatigue during high school!
Do you already have a diagnosis? How long did it take you to get it?
12 years old when starting to show symptoms. A few days before my 18th birthday when I got my diagnosis. A long long wait. Unfortunately no real help from the diagnosis, just a slight understanding of what I’m dealing with.
For what medical specialties have you been treated? What has been the most useful specialty for your?
Perrin treatment helped the most, I look forward to starting that again. I’ll never push that ad a cure but it helped me feel some improvement.
What has been the most useful thing for you so far?
Learning to pace, surrounding myself with supportive people and learning that it’s okay to be unwell.
What have been your biggest difficulties?
Accepting myself as I am now.
How has your social and family environment reacted? Have your social or family relationships changed?
Naturally. Initially everything became very strained as there is little understanding, and even those well meaning often got it wrong. Fortunately now I only surround myself with people willing to work with me on my health, even if that just means accepting that I’m not always available to do things when I initially agreed due to health. They don’t need to be a hands on carer to be massively helpful in my life.
What things have you stopped doing?
Working. Working was killing me. I became bedbound due to it, not only can I not work at the moment but I refuse to be guilted by people who think I can and should. I’m simply too unwell.
What do you think about the future?
Depends on my mood, sometimes I feel pretty bleakly about it, sometimes positive. It’s never going to be easy and I’m never going to do the things I aspired to do, for now I’m settling for - just getting through day by day is good enough, focus on that rather than the future, because you never know what could happen.
So far, which years have been the best years in your life? What have you done during them?
This past year. I met my current partner who also has ME. He’s incredibly supportive and understanding. We moved in together (with support!) and we’re doing a brilliant job of managing a house together despite both being so poorly. He changed my life for the better and have me my independence back. We get out more now, we have less dark days. It’s incredible.
What would you like to do if you didn’t have your condition?
Work, horse ride, dance, travel. So many typical things.
If you had to describe your life in a sentence, what would it be?
Frustrating, but worth it.
Finally, what advice would you give to a person in a similar situation?
Be kind to yourself, do not compare your life to others. Focus on your own health and well-being and everything else will fall around it. Reach out to communities, indulge in the things you love. Do not feel guilty for being sick.
