As anyone with a chronic illness will tell you, sometimes your body just doesn’t do what you want it to do, it says nope, I have had enough. At that point you end up maybe cancelling any plans you had and hoping that maybe you can actually get out of bed to get to the sofa. I have been thinking recently about the concept of a guilt free lazy day. We went away for Christmas this year and my husband and I had a conversation in bed one of the nights about how nice it had been to do nothing all day. We had enjoyed a thoroughly lazy day, we slept in, we watched movies and I did some knitting, it was lovely. After saying how nice the day was, I of course joked that nowadays unless I have hospital appointments most of my days are like that. However, it is what I said after that, that is quite telling and what got me thinking. I said – It’s just nice not to feel guilty about it. I feel guilty most of the time for being ill. I have seen one of the leading specialists in the world for my heart condition and there is nothing they can do and the Ehlers Danlos is genetic, so that’s not going anywhere – so am I supposed to spend the rest of my life feeling guilty. Maybe it is a sign that I haven’t really accepted my new life, the reality that I am now in.
My cardiologist and I had a long chat about my ability to go back to my job, or should I say my inability. At some point I will have to accept retirement from my job, I think when this happens it will help me to accept that this new life is my life. Until that day maybe there are some small things that I can do to help me get used to this situation. Firstly, I think I need to stop calling it a ‘lazy’ day. I am not being lazy I am giving my body time to recover. Maybe I should call it a recovery day or a thinking day. I think I then need to work out a plan for the future, I need to work out what I can and can’t do and how far I can push myself. On that note I am seeing my doctor next week to discuss a new therapy for the orthostatic intolerance and autonomic dysfunction; which hopefully will help me to feel a bit better on a day to day basis and less like I permanently have a stinking hangover. Which is particularly annoying given I don’t drink alcohol!