I miss me and feel so lost!
I miss doing the things I did, wearing make up because I felt like, now even doing my hair is a task I can’t master every day!
I miss not aching and feeling fatigued after a shower. I miss getting into a bath without worrying how I will come out because even though it relieves some of the aches, it hurts trying to come out, so it is not even worth it!
I miss exploring and experimenting with cooking and baking and sharing those experiences with my girls. My 9yo remembers what it was like doing so with mummy but my 2yo doesn’t and although she cannot miss what she never knew, I miss the mum I could be with her.
I miss going out on an impulse, last minute, no thought or plan before hand! I miss how fast I could go grocery shopping, have a list and be in and out in less than 5 minutes, just like supermarket sweep, queue and all!
Now when I am lucky to have the sort of pain that I can actually get there and get out of the car because I parked close enough, I get there and start shopping and go to random aisles, back and forth because I keep forgetting the location of all on my list and can’t figure out in my mind how to get them in any sort of order.
Through it all I feel my pain rising and my fatigue taking hold of me, so I worry I will be home in time to collapse on the sofa m, from either pain or exhaustion!
I miss not having to worry about who I spoke to, or how! I am a communicator, so chatting was my thing, but in a bad day – I worry if I am having a stroke – my words are mumbled, completely out of place, and my brain feels like it is either in water or with a debilitating headache!
I miss running after my girls, dancing with them, now I can dream of doing it but all the while worrying about how I would pay the price, and what would come charging – acute pains, all over pain or fatigue or all three.
I miss me before Fibro took control!
This is a reflection on how a chronic condition can get us mourning who we once were, how much we did. All this without the reassurance of a brighter tomorrow!
In this reflection you got a glimpse of a “good” day and a glimpse of a bad day – the good, the bad but not the ugly! I am still coming to terms with how inhumane this whole journey can be and how demoralising and frustrating it is to fight in some many arenas of our lives, when in fact , what we would love it to do is rest, and get the understanding of those around us, like loved ones, colleagues at work, our communities and yes – I will say it – The doctors.
Now, I have been fortunate with my doctors so far – touch wood! They listen, are not dismissive and work with me to find a better way forward but, there is so many limits in what can be done it is unreal! However, this has to be the topic for a whole new blogpost, because there is a lot to be said about it.
Going back to my reflection, if I had to sum it all up – Fibro is robbing me of my joy, my youth, my time with my family, my marriage, my finances, my body! I see it happening and yet I feel completely powerless to do something about it, something that may make a difference.
Above all this fibro is robbing me of myself!