When your world shrinks

ME/CFS

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One of the things that is hardest about being sick is that your world shrinks. I’ve gone from living abroad and being able to take trips on a whim to living the majority of my life within the five kilometre radius bordered by work and home. My days are basically work, home, rest, dinner, sleep. My social circles have shrunk. My professional opportunities have shrunk. My budget has shrunk. My hobbies and interests have shrunk just from sheer lack of energy to pursue them. Some days the vertical blinds in my flat feel like prison bars.

I feel like I am no longer an interesting person because I am so tired all the time. This weekend, I planned to finish reading a book, and a report for work, but my body had other plans and I’ve been too braindead to do it. Sometimes I struggle to make conversation with people I don’t know very well because I simply don’t know what to talk about and my brain is sluggish and too tired–it then makes me anxious to feel like I can’t even make banal conversation. I’m also struggling with just sheer apathy – it’s an election year, and I can’t summon up the energy to care. And now, I get questions from people who don’t know about my whole illness situation, or who still don’t understand it, like: “you’ve been working there a while, what’s next?”, “what’s your next overseas trip?”, “I haven’t seen you for ages, you must be busy”, “how many times have you been up to PNG/to see the project? Are you going to X conference? What research are you doing now?” and so on. It’s all just salt in the wound.

I really don’t know what to do to make myself feel OK about this situation. Whenever I try to break out of the routine I end up crashing – last weekend I went to the coast, by Thursday I was crashing. I’ve been sick and exhausted all weekend.

I was feeling a bit better over summer but then I burnt out or something, who even knows, and now I’m pretty depressed and miserable again. Winter is on its way, which only makes things worse. And I’m about to clock over another birthday, which just makes me wonder how many more will pass by before I can have my energy and life back and feel like I can make choices and do things and escape the big hole this illness has dug for me.

2 Responses to " When your world shrinks "

  1. wendybaconblog says:

    Thanks for your honest posts Ashleigh. I remember you so well when you first came to UTS and what a great student you were. I am sure your health will return. Do you have confidence in the treatment and advice you are getting? I do feel concerned for you when I read these posts and just hope you are OK. You still seem to be achieving a lot at your work which itself was a great initiative.

    • Ashlee says:

      Thanks Wendy – unfortunately there aren’t any real treatments, I’ve tried various things but they haven’t helped so far. I am lucky my work has been supportive through this whole mess. It’s just incredibly frustrating and sometimes the frustration boils over. Hope you are well.