A few years ago, for ME/CFS awareness month, I took part in a blog chain called #ThisIsME set up by the lovely Louise, the ‘Get up and Go Guru’. Today I wanted to start writing an awareness post for ME/CFS Awareness month but I was at a bit of a loss for where to start so I though I’d revisit the structure that Louise set up. It’s a fun way to get to know me a bit more personally and to get to know more about ME/CFS.
Name, Age & how long have you had ME/CFS?
My name is Julie, I’m 53 years old, I’ve had ME for a total of 18 years. Although it started 25 years ago, I initially recovered after 5 years and had 7 years of full and vibrant health before it hit me again
Where do you live?
Tell us 5 things about you, that the people in your life probably don’t know (non-illness-related):
This is quite hard as life is so limited at the moment there isn’t much to talk about so most people in my life know everything there is to know, but here are a few things not everyone knows.
- I’m nearly 4 months into a paint by numbers painting which I work on nearly every day, and I’m still only just half way through it.
- A lovely friend made me a faery doll that I have hanging over my painting table, near by where I work. She’s a lovely reminder to believe that life is magical and amazing things can happen.
- I’ve struggled to find comedy programmes that guarantee a laugh every episode apart from Big Bang and Friends (do you have any suggestion?)
- I suspect I may have got myself addicted to caffeine again, as I really enjoy drinking green tea and have about 4-5 cups every morning. I used to see having a cup of decaf coffee as a treat, but I was offered one yesterday and just wanted my green tea. Hmmmmmmm. In fact, I need to go and make myself one now!
- I’m still running a social entrepreneur mastermind group, over 6 years after we started. We meet on zoom, every Monday morning to inspire each other to move forward with serving our purpose.
Tell us 5 things about you that the people in your life probably don’t know about your life with ME/CFS:
- My health went severely downhill last year as a result of a virus and my functioning is more limited that ever before (except perhaps for the first few months 25 years ago). Being an expert at illness management I can still feel relatively well a lot of the time, as long as I don’t do too much. But my ‘too much’ is now very little and my world had dramatically shrunk. I can now only work a well-paced 1-2 hours a day. I can’t walk more that about 700m without payback for a few days afterwards. Some days I have to choose between having a shower and being able to go for a short walk. My social life consists of zoom chats with my friends that can’t last more that 30 minutes and I can’t do more that 2 a week if I want to be able to do my work.
- I now claim limited capability benefits. Having the pressure taken off to earn enough to support myself, has made it much easier to do what I need to, (or rather not do, what I need to not do), to be as well as possible. I work the absolute minimum to keep my business ticking over, and it’s frustrating because I have so much I want to share, and so much more I want to do!
- Every day I have to find a difficult balance to continue to believe that I will be well again, or at least that my health will improve substantially, whilst at the same time, accept life as it is and surrender to this reality, at least for the time being. Without the acceptance and surrender there is no joy to be found in the here and now, but I also really need the hope!
- I have learned to be happy by being present to the moment and finding joy in the little things. My daily joy comes from watching the wildlife in the garden, 20 minutes of painting, creating and eating nice food (whilst considering multiple food intolerances), choosing to enjoy my rest (I have to do a lot of it), being present and laughing with my parents, looking at the trees and the flowers when I walk around the block, maybe sewing some seeds or doing a few minutes of gardening. I also watch at least 1 comedy programme a day.
- One of my biggest challenges with this illness recently is that I’m also very sensitive to chemicals and allergens. I get crushing headaches when pollen is high, particularly tree and flower pollen. So, although one of the things that has always brings me joy is connecting with nature, I often have to spend a lot of time indoors with windows and doors shut, at one of the most beautiful times of the year.
I think what people don’t understand is that with ME/CFS it’s not so much about what you can’t do in the moment, but more about how much you’ll pay for it if you do. For example, I could probably walk a mile or more if I pushed myself, without collapsing. And I might even get through the rest of the day, But I’d probably end up in bed, exhausted and in pain, for the rest of the week or longer if I did. So, if you’re out with someone with ME and you push someone to do a bit more or spend a bit more time with you, it might look like they can do it, but please think about the pay back that they might suffer if they do.
Also… Routine is also important when you have ME, as it guides your energy expenditure and can help you manage not doing too much. When I’m talking to someone, or seeing someone, I have to plan my day carefully and cut back on things I would normally do, in order to have the energy spare for the visit, or call. Spontaneity is not our friend. Please consider that if you want to make contact with a friend with ME. send a quick text to make sure its a good time to talk, plan a visit carefully and make sure you turn up on time and leave after the suggested time!
What is the most frustrating aspect for you, of living with ME / CFS?
My spirit has so much to give and my body just won’t let me
Anything else you’d like to say before finishing?
Probably, but right now I’m just too tired to think of anything, my brain refuses to work anymore.