I’m not okay

This one feels very personal but I am still going to post it because I know it will strike a chord with many others. I mean no harm in publishing it. It is nobody’s fault, just another observation about life with chronic illness.

I saw some friends recently and, as has happened before, I was left with that bittersweet feeling afterwards; hearing about the ins and outs of The Real World. My life has changed so much. To them it was just a couple of hours in a busy week. For me, it was my whole week. 

This time that bittersweet feeling, and the over analysis of how I might have come across, was worse because I know what they thought. They told me. They thought I was crazy and weird. They said it affectionately but I know there was truth in it too. They said it was a side to me that they hadn’t seen before. I was just trying to be myself and I was perhaps more honest and open than I have been before. 

I think I was overexcited and overtired. I was scatty. I came across as drunk apparently. I feel so foolish and embarrassed. Mortified even. And I feel pathetic; that my life has been reduced to this. I felt I was just being myself but it’s not a person they recognised. Am I starting to lose my marbles after years of being cooped up? They must wonder whether I have a dual personality, but it’s the impact M.E. has had on my ability to be myself and to be ‘normal’.

And my dad seemed just as excited too; that I had visitors. And they might have thought his excitement was odd too; that a grown man seemed so happy that his adult daughter had friends round for a couple of hours. 

It was probably the best and liveliest they’ve seen me in years which is, of course, great! But it comes with me now having to learn who this Anna is: in this next phase of my M.E. journey and I don’t think you can fully understand the idea of that unless you’ve been there yourself. I have been shoved out of my comfort zone by the most recent steps along the road to recovery. I am yet to find a new routine that I’m comfortable with, what with my parents being away and my brother having moved home after university.

And the constant analysis is getting to me. “Is it a good day?” “You seem to be able to do more recently?” I feel so lost. I don’t know who I am. I have to find my feet, and my balance, all over again. How I hate M.E. and chronic illness and all that comes with it. I can’t do this anymore! I just want to scream. I think it has finally hit me that I’ve had my 3 year anniversary and I’m heading towards my fourth birthday as a poorly person. I feel very low. I am struggling in general at the moment. There, I said it. 

I don’t know how to ‘be’ around people anymore. What is the etiquette? What are the rules? I feel so out of touch with The Real World. I feel very much like I no longer belong; I feel so far removed from those who were once my peers.

I’m not okay, but that’s okay. Maybe I will be tomorrow. 

4 thoughts on “I’m not okay

  1. First of all please receive a huge hug! It sounds like you need it. I'm sad that you are having such a hard time at the moment.

    Secondly, I'm concerned that your friends seemed unable to recognise you. It sounds more like an difficulty with empathising with the kind of challenges you're having to go through. Don't they understand that life can be incredibly dull when you don't have the energy for a social life, so that when you do finally have a little, it seems really exciting? I guess its hard to really get how tiring that kind of excitement can be for someone who has never experienced this illness. But I do think that you still need to be able to be yourself! You seem to be judging yourself harshly because they had some difficulty understanding how this illness impacts on you at the moment. However I doubt that they were judging you as harshly as you are, it was just out of their realm of experience and difficult for them to see the world through your eyes. If they are good friends they will continue to want to try and understand better. They will understand that the real you is still there if they are willing to see past the symptoms.

    Try to remember that you are a wonderfully valuable and worthwhile human being even if you can't express yourself in the ways that you used to! Give yourself time to adapt to each new challenge this illness provides! you will learn and you will grow! Give yourself a break today, allow yourself to be thoroughly fed up with it all, tomorrow will be another day! lots of Love!

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  2. Thank you for posting this, it's so tough. I think you can focus on the fact that being more open and honest with them is a good thing and I hope results in more understanding about your illness and how it affects you. Healthy people do take things for granted and often don't fully realise how something so minor & 'normal' for them is such a big deal for us, but appreciating the little acheivements is a healthy perspective regardless. Even after being ill for over 10 years now, my dad was still confused by the idea of me taking a photo when I managed to go to ikea, about 10mins away, he didn't fully appreciate the significance of the outing which to him was rather mundane activity rather than an acheivement 😉

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