I don’t ever really wish I didn’t have one…. I do have moments where I wish I didn’t have condition/s. Much like I don’t ever really wish i didn’t have glasses but I do have times where I wish my vision was better…. (Though I absolutely hated my nasogastric feeding tube – the one that went up my nose).

The journey to getting a feeding tube can be quite harrowing and scary as you watch yourself wither away and become weak and wonder how low your bloodwork can possibly get whilst trying to force more and more food down hoping against hope and constantly doubting yourself thinking maybe you could try this or that or maybe you are doing this wrong….. basically crash dieting but with the intention of gaining weight…… that by the time you get a feeding tube and once your over the initial shock and have figured out how to ‘plug in and set up’ it is such a relief and is on the whole so simple and routine.

My Feeding tube for me I just another tool that enables me to function and live better, for my it is a positive thing, without it I wouldn’t be functional. It’s just another pair of ‘glasses’. I can even accessorise with different covers 😍

I am not defined my feeding tube anymore than I am defined the colour of my hair. Yes it forms part of my overall picture and identity but it is merely a tool I use.

Thank you for taking the time to garner a deeper understanding of tube feeding this week. It has been surprisingly cathartic and enjoyable.

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