Standing Still In A World That Never Stops Moving

Sometimes I just want to take my blog back to what it was when I first began, a place to chat about whatever popped into my head. The blogging world is so different to how things were when I started 5 years ago so often I get swept up in it all and find myself floating away from the core of what my blog represents: me. I just wanted to let some feelings out today that I've been having lately about one side of being disabled and suffering with chronic pain, I'm not sure how much sense it will make.

I spend my time doing not much at all. I wake up, I rest, I watch TV, I rest, I write a blog post, I rest... you get the picture. I leave the house maybe once a week most weeks and whilst I can connect with the world through the internet its very easy to start feeling lonely and isolated. As the title says, it can feel like you're standing still in a world that never stops. I see people on Twitter, Facebook, Youtube etc going about their lives doing 'normal' things like food shopping, going out with friends and working and most of the time I smile and scroll on by but sometimes, just sometimes I feel like I'm in a bubble just wanting to burst out.

photo credit: Makeup Savvy

Things move faster in this world than they ever have before so being left behind, laying in bed at home, really kind of sucks sometimes. Like everyone else though I put on a smile, say I'm okay and go back to my usual daily routine of managing pain and resting as much as possible. I remember when I was really young it was exciting being ill as it meant a day off school, having someone caring for you. It's not as fun when you're an adult and it's your daily life though.

Every now and then though I peek out of my bubble and have a good day, I go into town in my powerchair and do some shopping or see family and friends and just for those few precious hours I feel part of something. Part of the world. But what goes up must come down and soon enough I'm enclosed in my bubble again, back to the medications, doctors appointments, disability benefits and sleepless nights. I feel grateful for the days that allow me to go out but I just wish I had more of them. Sometimes you just wish you could be like everyone else for the day, going to work and then coming home to complain about it and make dinner, to most people that doesn't sound like a good day but to me that sounds perfect. Instead of getting the common cold a few times a year and the odd bump and scratch I get a rare condition with a long list of secondary conditions, every now and then I just can't help but be angry about that.

Luckily these feelings aren't in my head all the time, they come and go on. Good days and bad days. At the end of the day though I've survived 100% of my bad days, a pretty good success rate if you ask me.


  1. Well done for writing another great blog :-) I can relate to some of what you said which makes it even more of a good read. X

  2. Well written and a spot on description of how some of us sufferers live with Marfan Syndrome.
    It's knowing that the next day is always going to be as painful as the one before. Coping with meds, sleepless nights and trying to get through a pain filled day with immense tiredness.
    Like yourself, I put on a smile, mainly for my family...


    1. I completely agree, people always say that it must get easier but going to sleep at night knowing that tomorrow will be the same, or worse never gets easier. I hope today is a low pain day for you x