I can’t risk socialising during the week in case it uses up all my energy so I can’t work.If I want to go out on a weekend, I must make sure I can be flexible about work the following week, because it’s likely I’ll be extra ill afterwards.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.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.Life for me is like waking up every morning and, before I can even start my day, having to complete a fiendishly difficult puzzle for which I don’t know the rules — and sometimes half the pieces are missing.Every morning I don’t know what my brain and body are going to present me with.
Gabrielle Roth says, “Your body is the ground metaphor of your life, the expression of your existence. How do we create an equal relationship based on love and independence and freedom when sometimes we need to be completely looked after? We look at chronic fatigue as our child, and if we nurture her and look after her, she will grow, flourish and bloom. They ultimately know no one is perfect and your illness is also your badass superpower. These partners process with each other when it all gets too hard and I see them taking responsibility for themselves and their emotions that come up. If the relationship of yourself to your body is unavoidable, then what about the relationship your partner has with your body? How do we manage a romantic relationship when one of the people in that relationship is also managing a chronic health condition? How do we manage this third entity that shows up at totally inopportune times and rips the life right out of us? While all the therapy in the world will not take away the guilt I feel at seeing my partner’s sad eyes as he realizes I won’t be coming with him to a party again…I now know pushing my body to act in ways that don’t feel good will end up holding me back from a whole lot more than just that one party. I meet partners who leave because it’s too hard, I meet partners who stay and end up becoming caregivers. I now see my chronic fatigue as my wonderwoman strength. The very thing that has hurt me has become my friend because it has forced me to stop and care for myself in a whole new way.