Tag Archives: nerve

‘To Lose Time’

‘To Lose Time’

To Lose Time


What happens when you realise you have suddenly lost a whole month…..or, worse, a term.

You find yourself on the couch, crying, because no matter how desperately you want to get out for a walk. To breathe some air, fresh air, you know that you are unable to reach the end of the street. Your body will just not allow you to move how you want.

At the end of our flat, easy to walk along street lies a bus stop. All I have to do is get out the back door, walk along the road, get on a bus, and I’d have some freedom, some conversation, some socialisation.

But between that, I have three children to cajole and convince out the door. I have a pram that is not unfolded waiting for use, it is packed up in the boot. People would not believe how many times that pram unfolded has led to me being unable to venture outdoors. You see, it’s just too many challenges. And for a woman like me, burdened with chronic pain, you have to calculate the risk benefits. We spend our lives looking at the steps, working out what we need before we go up or down them. We have two annoying steps in our kitchen, and I beg my husband to put a ramp in, because as stupid as this sounds, by the end of the day, I have to step over them in two steps just to avoid the pain. I have to plan what I need on one half of the kitchen, and put off using those steps as long as possible. Then, once I’ve gone up the steps, I’m aware of the pain I’ve now caused myself. It doesn’t happen later, it is immediate. As soon as I gone up those two stupid steps I feel it in my pelvis, and it is all part of the toll that sends me to bed with my heat pack early each night.

To leave the house, I have to dress the kids (pain), bending down to put on shoes (pain), bending over to help with toileting (pain). Packing bag (extra steps to get stuff, pain), strapping into pram (pain), packing spare things under pram (pain, unless I can convince the girls to do it).

Then the actual walking (pain). I can only walk so far before I need to sit down. You won’t see me in pain, you will only see us having a drink of water and a chat. Getting the water bottle out of the bag (pain), bending down to give baby a drink (pain).

Lifting pram onto bus (pain). Putting bags under pram in place for the bus (pram). Sitting down on the bus (pain). Getting up (pain).

So today, my pelvic pain has been complicated with a bladder infection. Only, there is never an infection. My body just goes all crazy and the nerve endings are on fire, sending me to the bathroom every five minutes, minimum. No exaggeration, I wish it was. I get up to use the bathroom, get the kids some food out, pass them the food, then use the bathroom again, then sit. It’s a delightful way to spend the day. All I can tell myself to get through the banality and the urge to scream at my stupid bladder telling me to ‘go’….is that I get a day at home with my kids, to cuddle and enjoy some quality movies with. Only, then I accidentally look on fb, or Instagram, (please, hold the hate, I’m actually a huge fan of both, thanks to the ‘connectedness’ we have with family and friends on the other side of the world) and see the awesome, amazing day out other mums have had with their kids…I would desperately love to take my kiddies somewhere special, or even just a playground with them (we did that Monday…hence the overdoing it, again)…..but, today, as nice as it is has been cuddling inside in the rain, and I know I should be grateful for having three gorgeous kids……I can’t help but feel really disappointed with my failings, and annoyed at how much my body imprisons me. It also imprisons my kids because not only are they stuck inside staring out at the world, but they are excluded from group activities that I’m just not up to (thank goodness they aren’t aware yet of how much they miss out on).

Another day…..lost at home with my Endo, and my stupid sore leg (post on leg later). I know, my kids are beautiful, and they are healthy . I need to breathe them in and just be happy with that. I’ll try, hold back the tears, then get back to you.


Post – Please don’t feel sorry for me, I know I’m lucky. I do. I just want people to know a) what chronic pain looks like {you don’t see us because we are home when we can’t move, and when you do see us, it’s hidden in our ‘coping’ ways such as sitting down and ‘resting’. I know I’m lucky, it’s not terminal. One day I will walk, and run and be the active sporty girl I used to be. Just not yet…..