Being Reliant On The Unreliable

A sentence I’ve repeated many times to various people that sums up my thoughts on tube feeding: how terrifying it is to be totally reliant on something so unreliable. 

Due to gastroparesis, I am completely dependent on a naso-jejunal feeding tube. This has been the case since August last year. All of my nutrition medication and hydration go through this flimsy little tube that likes to kink what feels like every five minutes. The longest a tube lasted for me was a month and a half, the shortest was when it flushed in endoscopy but by the time I got wheeled back to the gastro ward nothing could flush through it. 7 tubes in under 6 months And most of those tubes were in short succession. There was a further 2 occasions where It kinked but the tube was saved at the hospital by repositioning it. 

Through all my health issues this has been the hardest thing mentally of all. The tube can absolutely control my life, being on constant alert for any signs it might be about to stop working due to a kink or block, jumping at the sound of the pump alarm for an occlusion because of all the times that sound is the start of a trip to hospital and it terrifies me. As minor as it may sound it’s the self-confidence issues and missing seeing my whole face. Feed leaks and exhausting medication rounds. Endoscopy after endoscopy when sedation doesn’t even work for you is awful. The uncertainty of making plans but unsure of if you’ll end up in hospital instead because most of the time it really happens with no advance warning. 

These pictures are some tube feeding moments from the last six months. From day one having the pumps on my pole to med rounds and throwing up tubes, PH strips showing it’s flipped into my stomach and hospital trips for replacements. Pretty tape and the giving sets entertaining my cat. And the days where thanks to my tube keeping me alive, and helping my health thanks to properly absorbed nutrition, I can do makeup and have a nice day. 

Being tube-fed is so challenging, it’s scary, it’s unstable and like living on a knife edge in terms of if it will cooperate. But tube feeding is also keeping me alive and that’s something I’m so grateful for this tube for.

2024 Over and Out

This year has been one of extremes. It’s really hard to round it up. The highs and the lows have had my mental and physical health bouncing back and forth. 

If it sums it up, I’m already crying whilst writing this and I’ve only done a total of three sentences. I’m crying because I’m proud of myself for surviving, and I’m crying because I’m traumatised by what I have survived. 

2024 I think has been one of, if not the hardest year of my life. Which given how 2020 and 2021 was for me, it says a lot. 

My health has been split, some of my illnesses have been the best they’ve been in years, some have reached new lows. 

I have had more trips to hospital this year alone than any previous years combined (though at least none of the admissions were as long as the seven month one before). 

An abscess and a lingering infection of it, a bad kidney infection following months of UTIs, just under a four week admission due to no longer tolerating any oral intake in which I got an NJ tube which has led to so many more admissions because my tubes have been very problematic. Six new tubes in four months and a further two times it kinked and needed manipulation in endoscopy or A&E. So many other things, such as family member deaths, care struggles etc. 

But whilst I’m leaving 2024 with a feeding tube, I’m also leaving with an incredible accessible annexe, a beautiful loving cat, still running my small card business @bykatiecards and improvements in the ME aspect of my health which meant I had my first two outpatient hospital appointments (which were the first non emergency trips out of the house) in just under four years. And then I went out and up the road for the first time in over four years. This was a non medical trip in my wheelchair which was just unbelievable. 

And I can say I have survived it. So have you. Im proud of me, and of you. Here’s to 2025

 

Christmas Gratitude

This Christmas has looked very different to Christmases over the last few years. Both in good and bad ways. And that comes with the complicated mix of my health issues where I am so lucky that some have improved and yet some are the worst they have ever been. 

I may not have been able to actually eat christmas dinner in terms of swallowing it but I got to taste it by chewing and spitting which I am so grateful to have knowledge of thanks to this community. I got to be at the table with my family to enjoy the food in this way and when so many christmases have been alone in bed or even in hospital I am so lucky that I got to be sat in my wheelchair with them, to laugh, to talk, to enjoy. 

After the amount of hospital admissions I have had this year I am also simply just lucky to be at home. 

So I’m grateful. Today had the spirit of Christmas, it had family and joy. It was a healing day for a family that have been through so much in the last year. And I’m so privileged for that, not privileged despite but privileged including. Including needing to rest for most of the day, not swallowing food or drink. I am grateful. 

Sending so much love to those who were unable to participate and also love to those who did at the expense of now suffering for an unknown period. 

Thank you to all my wonderful friends who helped make my christmas, and who make me feel loved everyday.

My first time out

A highlight of the year. 

I went out for the first time in my wheelchair, and I went out for the first time in over four years to somewhere other than a hospital. Which even that has, apart from two outpatient appointments this year, all been emergency admissions. 

I cannot begin to explain how huge this is. And many won’t understand how 5 minutes up the road to a postbox and back can be so huge. But to the girl two or three years ago and her absolute physical lowest with very serve ME this is everything. To me right now who has survived so much more than I can even comprehend, this is everything. I have hoped for years things like this would happen again. It’s indescribable to explain the feeling of these things coming true. 

Right now I feel so incredibly lucky. The negatives of the situation that others may think, in a wheelchair etc, and the impending PEM, don’t touch on my happiness. And that is something I wish for more of. Pure joy and magic. 

Though I guess I’m immediately faced with the inaccessibility of the world since I could get near the post box but not to actually put the letter in myself!

I am holding everyone in my thoughts unable to do this, I hope this day comes for you 💗

Turning 20

Today I turned 20. It marks the official end of my teens. My teenage years have had their challenges, a lot of them. 

I got ill at 13, a month after my birthday. 
My 14th I was struggling with depression mainly due to friendship issues which were so bad that day 
I became bedbound at 15 
My 16th was spent in hospital during covid 
My 17th was the last time I saw my old best friend who treated me badly once I got ill. It was spent in bed with awful symptoms. 
My 18th I had shingles 
My 19th I finally felt like things were coming together, yet the age 19 was one of the hardest ive had with constant challenges thrown my way. 

Its been a rollercoaster. But a rollercoaster that I have survived. And there has been joy, good memories and so many wonderful friends made along the way. 

Just four weeks before my 20th birthday I had an NJ feeding tube placed due to not being able to keep any food or drink down. It really looked like I was going to have another birthday in hospital. So whilst today has not been the day ive been imagining it is better than I feared. 

Here’s to my twenties. Let’s hope they’re a lot better than my teens.

Gastroparesis and a new addition

 August was quite the month. It was gastroparesis awareness month and boy was I aware. 

I got admitted to hospital once again unable to keep any food or drink down. Only this time I was already on all the different treatment options and they said there was nothing more they could do. 

Eventually they put in a NJ feeding tube which bypasses the stomach. There was many issues with the first tube so I had to go back to endoscopy another two times but eventually I had a working feeding tube. After being told by every single doctor I saw I wouldn’t be allowed home with a feeding tube the nutrition team consultant came and said that as long as I was tolerating it they would get me set up at home. 

So after three and a half weeks in hospital I am home with a new attachment. I am so relieved to be home but also so overwhelmed. When my GP got me admitted I hoped for a short admission with a solution. I have no clue how long I am going to need a feeding tube for. The discharge plan is to wean me of the tube in the community. I hope its possible. But as the nutrition consultant said, there is no cure for Gastroparesis. Im already feeling very burnt out from dealing with tube things, this is a really rough journey. 

My mental health is a mess, it usually is in September anyway with it being the anniversary of becoming bedbound. The 9th of September will be four years. It is also my birthday on the 23rd of September and that may look very different this year. i’ll be turning 20 and my teenage years will be over, having been ill for all but a month of them. 

Life has thrown so much at me this year and it’s hard to cope with. I really hope things look up from here.

Severe ME awareness day

It is very difficult to understand Severe ME, particularly Very Severe ME. With very severe ME, even on a day like today that has the purpose of trying to understand the stories of the very worst of ME, when we need to hear them, listen to them, learn from them and support those going through it, we can’t as they are too unwell. Many are too unwell to speak, to use a phone. Even if and when people may improve from it, it’s so hard to describe just truly how horrific it is. The time I was at my worst is in a blur. Anything I do remember clearly is so awful and upsetting and is impossible to express accurately. 

By the NICE definitions, I am still very severe but my life is so different to how it was. The scale doesn’t account for the very worst, my health now, whilst not good, is not comparable to how it was or to those worse than I’ve ever been.

The severest of my ME was pure darkness. black-out blinds with black-out curtains on top. An eye mask or sunglasses. 

It was silence and needing noise-cancelling headphones or earplugs. 

It was pain in every part of my body at every moment. My head, my muscles, my gastro system, even pain from breathing. So many different types. Constant agony with no rest. 

It was the presence of people making me worse, even when silent. 

It was a thick fog in my head that thoughts froze in. 

It was a torrent of endless symptoms cascading down leaving no break. 

I wasn’t well enough to wash. At my worst, I was only managing a strip wash in bed once every 10 days. 

I wasn’t well enough to feel bored despite doing nothing all day, no TV, music or books. All I could do was endure my symptoms. 

I wasn’t well enough to be myself. Very severe ME was smothering my personality, trapped under layers of symptoms. 

I wasn’t and still am not well enough to access the healthcare I need. 

I wasn’t well enough to tolerate the care I was dependent on to stay alive. 

Every little thing made me worse so pacing was practically impossible. When you’re that severe with that many factors you can’t control factors that cause PEM. 

So when I hear someone say severe ME, I know it is torture in every sense of the word.