I used to love to cook, I loved to bake, I enjoyed swimming, I constantly fidgeted. I loved fashion and was dedicated to my school work. I sang and I loved movies. Nearly all of these are past tense now, I used to love to cook, I used to love to bake, I used to love to swim, I miss fidgeting. I can’t watch many movies anymore.
Having M.E is a mixed issue, I have gained a lot but it comes with enormous sacrifices. I have changed as a person, I can’t do any more education and I can’t do the things I loved anymore. I am comfortable to use the past tense for my present. Those hobbies and the things I loved are no longer accessible to me and it grates on me when people use the present tense. I can’t do them even if I still love them.
I don’t want to feel like I am stuck in the past because I need to keep moving forward. The person who got M.E isn’t who I am today, there are unchanged elements within me but a lot has changed. I don’t know if I suddenly got well if what I loved in my early teens would still be how I chose to spend my time. Since being ill I have always wanted to make my body strong so maybe more active things would be how I chose to spend that energy.
Who I am and what I’m interested in today can all change. So trying to have a ‘goal’ to do the things I used to love in some ways seems pointless. There are so many barriers it’s not just about enjoyment or practice to get me back to cooking or baking. I can’t lift anything heavy, I can’t cognitively keep track of the recipe, ingredients and the cooking time. I feel like it would be like trying to squeeze myself back into that teen’s clothes. They won’t fit no matter how hard I would try.
If I do improve then I’d like to start from a clean slate. What interests me now and what I see value in exerting energy into. People change and that’s okay, I just want to look forward rather than recreating the past.
Seeing M.E In Reality 
Well said, and beautifully put. I used to hike miles with my husband and dogs every night, and then I began collapsing. My heart began stopping. Now a pacemaker keeps my heart beating but it can’t do a thing when the brain fog gets overwhelming and my muscles are too weak for me to stand or move. I used to sail and swim, and I loved my job, managing a marina. That’s over now. I have Hypokalemic Periodic Paralysis, and it has left me with permanent weakness and episodes of full body paralysis, and has completely changed the course of my life. Plans I’d had, things I enjoyed and was working towards, I’ve had to accept they aren’t an option now and most likely ever. In my honey-badger brain, I can’t be stopped. My sloth body, however, has only one speed and I’ll admit coming to terms with that reality wasn’t easy. Nothing is easy anymore. I’ve had to let go of much; I think that was the most difficult part of the transition into who I have become. But letting go of the frustration, the anger, the feeling of loss, once I did that, that’s when I was able to move on and turn my limited energy to better use. Thanks so much for your post – your insights and outlook are inspiring.
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Thank you for your comment. I’m sorry you’ve experienced so much it can be hard to create a new life out of what is left.
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It is, but in some ways I’ve found more purpose now that I must be selective where I put my energy. It’s given me a new direction and a new perspective on life.
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I agree with the change in perspective. Life is short and you have to squeeze what you can out of it 🍋
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