Dating someone with chronic fatigue syndrome
Other days, I might be able to do some housework and go for a walk, but my brain fog won’t let me concentrate long enough to send an email, talk on the phone or watch anything on TV.To make matters even more complicated, I don’t know when my energy — whatever kind it is — will run out.To make sure I can do the things I need to do to survive — eg working — I have to limit the non-essential things I do, like socialising.I can’t risk socialising during the week in case it uses up all my energy so I can’t work.So I might feel fine in the morning but end up back in bed in the afternoon.In short, I live with daily unpredictability, and that causes me a lot of anxiety and means I have to do a LOT of planning, prioritising and risk-assessing.Things really aren’t bad, not like they used to be.
Non-spoonies often don’t have the faintest idea about the mega-complexity of spoonie life when they first meet us — especially as we are often invisibly disabled (i.e. This can lead to all kinds of misunderstandings, and the burden of having to constantly explain, educate and convince can further exhaust us.Not only do I not know how much energy I’ll have each day, I also don’t know what kind of energy I’ll have.Some days I might have a brain that works pretty well, but a body that doesn’t, and I’ll be able to sit in bed and work in my pyjamas, even if I can’t leave the house.He rolls over with that excitement in his eyes and in an instance I can see his disappointment. I know the foods I have to eat, the exercise I have to do. Sometimes I need to be looked after and that is OK. Sometimes I will need my boyfriend to sit with me while I cry, yell and scream. Ultimately, I know this is not his battle to fight, and for that reason I have found that seeing a therapist has made it far easier to manage the effects this has on me and show up in a healthier way. Phew…it’s tough admitting that, but in doing so it allows me to create the space so I can show up more fully in my life. I don’t want to lie in bed all day depressed and watching re-runs of Grey’s Anatomy. Due to my inability to handle my own illness and the grief and depression that surrounded it, I lost many friends. Because of the social pressure I felt I stopped answering my phone. It became so draining to be around people and pretend I was fine that I found it was far easier to isolate myself. Trying to understand what it must feel like to be suddenly overtaken by this unavoidable, inescapable fatigue. How do we have a relationship with another human being when our relationship with our body has to be our number one priority? And when my boyfriend gets angry, we yell, we cry and we process it together. I exit the daily grind of my work, my relationship and my life to give my body a break. And also, and most impressively, I meet partners who stay and show up. What potential partner can’t see the amazingness in that?!