Tube feeding is often, certainly in my case, the result of multiple medical issues and comorbidities. Of which many by nature are ‘invisible illnesses’, that is illnesses that are not noticed by joe blogs walking down the street. Sometimes a feeding tube may be the only ‘visible, ‘tangible’ or ‘noticeable’ component of someone’s rather complex and challenging medical journey.

Visually for the general population a Feeding tube can draw a lot of attention, focus or interest and can garner a lot of comments such a ‘I don’t know how you do it’ or ‘that must be awfull’ or ‘I couldn’t do it’. For me tube feeding is such a tiny part of my story and is, now that it’s established, such a relief. I LOVE my feeding tube!!! So it can be challenging responding to those comments because what another person views as severe hardship can actually be one of the easier things I deal with, and I NEVER want to deter someone from deepening their understanding. So my response can come across flippant or self diminishing however it truly is a minute part of my day/routine, though the journey to getting one most definitely was not!!! It can also be challenging to face the thoughts of ‘oh yeah I’m not normal’ that those comments can sometimes trigger. Though I would MUCH rather have the discussion with someone and help them come to a place where they are more comfortable then feel someone’s nervousness or uncomfortableness. As a conversation no matter how awkward, is but a moment in time and once done the relationship overcomes however if the conversation does not take place that awkwardness can linger.

So please, I think this goes for any ‘condition’, ask your questions, deepen your knowledge and understanding of people and the many things they face. That is community, that is living, and that is connectedness!!!

#tubefeedingawareness

WARNING ADULT THEMED POST

The added appendage, the leash, the tummy knob, the alternate tickler………

Sharing the bed with an extra non pleasurable tube can take the wind right out of your sails. You have to be more thoughtful, take added precautions and most importantly spontaneity is not your friend. There is nothing pleasurable in having free flowing stomach juices join the mid coitus party.

Unplugging/disconnecting is a must as there are enough limbs without adding in an appendage. Making sure the clamp or valve is securely closed and if possible putting a cover on so that any leakage is contained, it is after all stomach acid … it burns!!!

Seriously though, yes it does make things awkward for a little while, yes you need to be careful etc…… but you absolutely can, much like after you have a baby or after many life changing events you adjust to you new reality and your relationship acclimatises because let’s face it the only thing more unfulfilling then awkward coitus is self loathing awkward coitus….

Tube feeding can mean that you get to enjoy that clean sheet feeling more often 🤪!

Seriously though tube explosions, connector fails, button leaks and pump alarms are all regular occurrences! This along with increased bathroom visits, the detangling frequently required (strangulation by tube!!) and the noise of a pump all mean that sleep is often interrupted for the tubie and their loved ones.

But I do love me some clean sheets!

#feedingtubeawareness

One of my biggest difficulties around tube feeding has been mealtimes and going out for ‘coffee’.

Mealtimes and/or ‘coffee’ are such an integral part of our interpersonal relationships. The majority of socialising we do as adults is structured around meals and or coffee. Likewise family mealtimes are integral in building family culture and strengthening family bonds.

Mealtimes also play an important role in the pacing and rhythm of our day to day existence. Not participating in mealtimes can mess with your sense of time, mess with your ability to know when you need a break and can leave you feeling isolated, withdrawn and lost.

It took a while for me to regain confidence in cooking and regain ownership over mealtimes and ‘coffee’. Yes we still eat as a family, yes I still love going out for coffee, Yes it can be awkward (mainly for whomever I’m with now as they don’t know what to do).

I have always, and absolutely continue to, thoroughly enjoy cooking for others. In fact I probably feed people more now then I did before. Food and mealtimes are so much more then the mere input of calories, they are a multi-sensory, social, connective and grounding experiences. They are the cornerstones to our day and a gateway to connecting with the world.

Can you imagine a world without ‘coffee’……. I can’t ……. please don’t let something like tube feeding stop you from utilising the experience of ‘coffee’ to connect with someone.

#feedingtubeawareness