Dating can be hard enough at the best of times. The question of what to share, what to keep to yourself, and how to broach difficult matters is never easy. But for someone with a chronic illness, things are even harder. Many people have a hard time getting to grips with the effects of a life changing illness, and are unsure how to approach the matter, even when they’ve reached a high level of intimacy. We’ve got a few tips from people suffering from chronic illnesses, sharing their experience and providing a rough guide for how to navigate things.
Raise your hand if you’ve been looking forward to lounging on the beach, eating gelato and getting lost in a good book? Make the most of the season with these 16 inspiring ideas for a happy and healthy summer!
What’s it really like to live with chronic health problems every day? How do you deal with the physical symptoms, emotional turmoil and practical problems? In this interview series, real life ‘spoonies’ share their experiences and tips.
Carole Rey is a French photographer living in the Netherlands. Her online magazine Good Enough Darling provides serene, calming photographs and helpful stories about embracing life with burnout.
Tell us a little about yourself.
I’m French living in the Netherlands. I studied French modern literature and specialized myself in didactic and intercultural communication. I’ve worked as a language trainer and lecturer for about 15 years, most of the time as freelancer.
At some point I wanted to explore new paths so I started a full time course to become an Interior Designer; I needed fresh air, new challenges. To still have a minimum income, I had to increase the amount of freelance work because my husband (who is also a freelancer) did not have work at all due to the economic crisis. The combination of my study, preparation/correction of portfolio, lessons to give, two very young kids plus the worries about my husband situation was awful. Nights when I could sleep four hours were the special ones. I was constantly under pressure and had to produce a lot of work and not to mention the way too often heavy headaches and migraines.
In order to work more (because of our financial situation) and to be able to manage all the tasks at home, I quit the Interior Designer studies; it broke my heart and I felt like a looser. A few months after that, I started to suffer from my right shoulder, it hurt a lot and I had difficulties carrying my kids. The physiotherapist told me that it came from too much stress, but I ignored his diagnosis, because I thought I had no choice and that I must carry on in order to protect and care for my family.
A couple of months later, while I was giving instructions to a group, I blacked out and could not speak at all anymore. I knew what I wanted to say but I just could not manage to talk, produce sounds and articulate. A very heavy migraine started, it lasted four days when I could barely open my eyes, talk and move. When I finally managed to go to my doctor, he told me that I, obviously, had a severe burnout.
With Summer approaching, are you dreaming of a holiday getaway? Breaking out of your daily rut, relaxing and exploring new surroundings surely is fun, but traveling with chronic illness comes with challenges. Have a look these world-class tips to make your journey and stay a little easier.
You’ve probably read the term before: spoonies. It’s a nickname for people with chronic illness, that unites individuals with all kinds of health problems on social media.
Because spoonies all share a common struggle: how do you get things done with the small amount of energy that you have? How can you take care of work, home life or even your basic needs when you’re always exhausted, in pain and have limited mobility?
Having to pace yourself is a concept that’s hard to understand for healthy people. Because getting dressed, making meals and doing the dishes is something most people do without even thinking about it. But when you’re chronically ill, those daily tasks can take up much – if not all – of your energy.
One day, lupus patient Christine Miserandino found a striking way to explain to her friend how difficult it is for her to get through the day, by using the items in front of her: spoons. Her Spoon Theory became a widely used metaphor to describe what it’s really like to live with chronic illness.
Have a look at this in-depth infographic from Burning Nights on what the Spoon Theory is and how you can use your daily spoons wisely.