This is probably one of the most blogged about subjects. 

I see so, so many posts with headlines like - "look after yourself" etc...

The truth is though; it's quite hard as a carer, to care for yourself as well as the person your caring for. 

I find it pretty hard to answer questions like "how are you feeling?" and "are YOU okay?"

Because how should answer? 

A vague "Yes I'm fine thanks!"

Or a drawn out answer which usually just ends in, I'm worn out - Absolutely. Burnt. Out. 

From the minute I wake up (usually somewhere between 1am & 3am), I'm shattered, counting down the hours until I can crawl back into bed. 

Being constantly tired doesn't help to motivate you to do anything other than autopilot yourself through the day. 

There just isn't enough time in a day to 'care' for yourself. 

I wake up, get my son out of bed, carry him downstairs, make his breakfast and draw up his medications for the morning - 7 and 2 flushes to be precise. Administer his medications via his gastrostomy, clean his site, feed him his breakfast (which is a huge fight as he has a lot of feeding issues!) and then get him dressed - ready to take him to school. 

Nowhere in that time do I get chance to even think about making myself breakfast or anything else. 

I usually end up with around 5 minutes to brush my teeth and get dressed, and I have to do this whilst keeping a constant eye on my son.

 

By the time I've taken him to school, dropped him off, come back home and done all of the washing and cleaning, it's time to go and pick him up again (he only does half days at the moment).

So, off I go. Collect him from school, bring him home, carry him inside, and make his dinner and a milk feed to go through his gastrostomy tube, feed him his dinner, get him changed and then try to keep him entertained/stimulated for the rest of the afternoon. 

Tea time - same again, make tea and a milk feed to go through his tube, feed him, change him and start getting things ready for bed - bath, etc... The 'usual' stuff.

After carrying him up and downstairs to the bathroom, I'll dry him off in front of the fire, bathe his gastrostomy site, dress him and administer his night time medications. I'll spend the next hour or so trying to get him off to sleep!

By the time he's eventually asleep, usually around 9pm, he's due another pump feed. So, before I take him upstairs, I prepare a feed, carry the pump, flushes and extra giving set upstairs, and then come back downstairs to get him to take him to bed.

Once he's in bed I start his feed and collapse on my bed in exhaustion. 

I think to myself. "Do I 'really' need a shower tonight? Can it wait until tomorrow? My hair doesn't need washing, it'll be okay for another day."

Now if you would've told me a couple of years ago, before I had my son, that I would've missed out on a 'relaxing' shower or bath I would've laughed. But they really just aren't all that appealing when you’re too exhausted to even move. 

So my answer when people ask "how are you feeling?", should be, "I'm tired, I'm in a constant state of worry/panic - ptsd stemming from our birth trauma, I'm angry - why me, why us?, I'm upset/sad - sad I don't get to do much 'normal' stuff with my son, I feel unhealthy - it's so hard to eat a balanced diet when you’re always on the go and craving carbs and sugar to keep you awake, my eyes hurt because I've only had 2 hours sleep, my back hurts from carrying my son and resisting against his back arching, and basically. I'm just worn out".

But my answer, just to keep it simple, always has and probably always will be. "I'm okay".

 

Emmy blogs for Firefly Garden, where you can read more about her adventures with AJ.