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. I’m a day late because of another post I already has planned for May 12th, but I wanted to take part in this too. I love the idea of sharing things you may not already know about me.
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. 7 years later it started again. I’m now another 5 years in 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 Shrewsbury, UK. Where I grew up. (I’ve lived in a few other places in between though!)
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 favourites are sweet chilli yogi tea and pukka after dinner tea.
- My guilty viewing secrets include Buffy and Angel, Nashville, NCIS, Bones, Castle and The Mentalist. Oh! Perhaps the guiltiest is Millionaire Matchmaker but I seem to have weaned myself off that one recently.
- I recently took part in a 21 day free guided meditation program with Deepak Chopra and Oprah Winfrey called finding your flow. I loved it and would buy the CD of I had money to spare.
- I rashly invested some of my pension savings in a social entrepreneur coaching program. It’s the best decision I ever made. I’m confident I’ll be paying it all back in before the end of the year!
- My favourite treat is Boots no added sugar Belgian chocolate seashells.
Tell us 5 things about you that the people in your life probably don’t know about your life with CFS / ME:
- I wake up every morning feeling like I’ve been run over by a bus during a big night out. I feel stiff heavy and achy, exhausted and hung-over. I always have a headache, rarely feel rested and often have a sore throat too. My T’ai Chi, essential oils, several mugs of hot water and meditation usually get rid of the majority of these symptoms.
- I 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 in a lot less pain than I would be without them. But sometimes I hate the structure and planning that goes into my life. I hate not being able to be spontaneous. There are days when I resent having to do my yoga in order to feel well enough to go to work!
- I plan my energy use very carefully. Surprises are generally not good because it means something else that I’ve planned will have to go. If that’s a self-help tool, then it means I’ll have less energy tomorrow. I may seem well most of the time you see me, but that is only because I plan things so carefully. The more energy an event may need, the more time I need to plan it as I’ll need to make sure I can have a really quiet few days before and after!
- 4. I have a love hate relationship with pain killers. I believe that as well as their beneficial effects they add a toxic load to my body that impedes my natural healing ability. Sometimes though, the stress that pain puts on my body is worse than the toxic load of the pain killers so I choose to take them. I hate the fact that about 1 in 10 of my work shifts are only possible because of pain killers.
- Because of my skill at managing this illness I am lucky enough to feel well a lot of the time. When I say a lot of the time that’s because I choose to see the world through rose coloured glasses. If I face up to it, I probably feel unwell, on average, about 50% of my waking hours.
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. I often find it difficult to hold back so there’s always a crash to follow a feel good period, eventually.
Anything else you’d like to say before finishing?
I used to love climbing mountains, dancing all night or skiing down a mountain at ridiculous speeds. I no longer dream of these things. But I do still dream. I still believe that the small steps I take towards better health will all add up until one day my body will be able to heal itself (as it did before). I know this will take time though so I have learned how to be happy in the here and now and I dream my dreams in stages. I look forward to getting close enough to be able to dream of mountain activities and all night dancing again!
Facebook: ME/CFS Self-help Guru
Any other bloggers who want to join the blog chain, please copy 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