This post is part of the #ThisIsME blog chain set up by the Get Up and Go Guru for International ME/CFS and Fibromyalgia Awareness Day. Below is a list of 5 things you may not know about me (in general) and 5 things you may not know about my life with ME/CFS (Myalgic Encephalomyelitis /Chronic Fatigue Syndrome). It also has a new name Systemic Exersion Intolerance Disease (SEID). Through these questions and answers I hope to create a little more awareness about #ME/CFS.
I took part in this blog chain last year and a couple of my answers remain the same, but mostly I hope you’ll learn something new!
What is your name & how long have you had ME / CFS?
I’m Julie and I’ve had 2 episodes of ME. The first lasted 5 years and I completely recovered. I enjoyed 7 years of active, vibrant health before it started again. I’m now another 7 years in (last year I optimistically miscounted) but because I know how to manage the illness well my symptoms are very mild.
Where do you live? (Country, State, City – however detailed you want)
I currently live in Capileira, in the Alpujarras, in Spain. It’s a beautiful, tiny white village hanging off the sides of the Poqueira Gorge on the lower slopes of the Sierra Nevada mountain range.
Age (if you’re willing to share)
Tell us 5 things about you that the people in your life probably don’t know (non-illness-related):
- I’m a fan of herbal teas; My favourite at the moment is liquorish and peppermint. I’ve found they taste different with different water supplies and my previous favourite doesn’t taste quite so good out here in Spain!
- My guilty reading secret is that I love Nora Roberts novels (except for the Mils and Boons). They’re just so easy to read. I feel a little less guilty at the moment as I’m reading one in Spanish, so at least I feel as though I’m improving my Spanish whilst I’m indulging in a trashy novel.
- I often have the company of a bat whilst I do my T’ai chi on my terrace in the morning. Today it flew within about 1 meter of my head! I’ve also seen a pair of golden orioles flying around the last couple of mornings. I love being so close to such amazing nature!
- I am living my dream! OK there’s definitely room for development and perhaps I would dream a bit bigger if I had full health, but I’m so happy to be living where I am living and doing what I am doing!
- I really enjoy facilitating a support group for European social entrepreneurs I met online on Ryan Eliason’s amazing social entrepreneur training which I took part in last year.
Tell us 5 things about you that the people in your life probably don’t know about your life with CFS / ME:
- I no longer wake up every morning feeling like I’ve been run over by a bus during a big night out. I only occasionally feel stiff, heavy and achy, exhausted and hung-over. I still quite often have a headache and rarely feel rested but a sore throat is now a rare sign that my body is struggling with something. My T’ai Chi, essential oils, several mugs of hot water and meditation are still very effective a getting rid of the majority of these symptoms.
- I still have a love hate relationship with self-discipline. I love my routines and self-help practices because they enable me to live life at the level I do. Because of them I can do far more and am rarely in pain. But sometimes I hate the structure and planning that goes into my life. I hate not being able to be spontaneous.
- As well as having to plan my energy really carefully I also have to be really careful about what I eat! I have a ridiculously long list of food intolerances. I’m now used to them and find it relatively easy to prepare food for myself. However it’s a major obstacle to me spending my energy on sociable activities which involve eating away from home!
- Nowadays I feel well about 80% of the time as long as I am really careful about what I do with my energy and make sure I stick to all my self-help routines. It’s still really frustrating and disappointing that I can’t control the other 20% of the time but I’ve learned to live with it as an inevitable part of having a chronic illness. I’ve learned to befriend my feelings of frustration, disappointment and loss.
- Feeling well 80% of the time sounds good doesn’t it? And I make sure I am appreciative of that. I take responsibility for my own happiness and chose to focus on enjoying the life that I have. But I want to be clear, without this illness I would be doing a lot of things that I can’t even contemplate now. If I tried to live life at a level of a healthy person I would be bedbound within a week!
What one thing do you think most people wouldn’t know about living with ME / CFS that you’d like them to know?
I’d like people to know that even when you are really good at it, living with ME/CFS isn’t easy. Managing this illness well means learning a lot of new skills and paying a lot of attention to putting them into practice. This needs energy, the more poorly you are the less energy you have for illness management so the more difficult it is. I’m good at illness management but I’d love to be spending my energy having fun instead! What we really need is a cure!
What is the most frustrating aspect for you of living with ME / CFS?
Probably the most frustrating thing for me is how difficult it is to not do too much when you’re feeling a bit better. When my energy increases, when I’m making progress or even just on a good day, that feeling of having a little extra energy is intoxicating. I feel compelled to make the most of it but I know I have to hold back if I want that progress to last. The consequences of not holding back are feeling unwell and having lower than average energy for a few days to a few weeks. We often refer to this as a crash.
Anything else you’d like to say before finishing?
I think it’s important to believe that we can get better but not putt our life on hold until we do! I believe that little by little we can help our body to heal until one day it will have found enough resources to sort itself out. In the absence of a cure this is our best hope!
Facebook: ME/CFS Self-help Guru
Any other bloggers who want to join the blog chain, take a copy of this and fill in your own answers. Then email Louise@GetUpAndGoGuru.com or send Louise a tweet @GetUpnGoGuru so she can link to your blog post in her original post.
A small favour: I’d be very grateful if you could rate this post using the stars below the related posts. Thank you x