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.

Reflections on 3 Years of Severe ME

 A picture of me at the start of my 7
month admission 3 years ago

 Today 3 years ago I became bed-bound with Severe/Very Severe ME. 

For three years I have laid in bed,

For three years I have needed care,

For three years I have been trapped in one room, in bed, for months at a time,

For three years I have been unable to walk, 

For three years I have needed medical help but have been traumatised by the experiences, left worse than before,

For three years I have wondered when I will get better.

Another year of ME. Another year of suffering. Another year of waiting and needing a cure or at least some treatment. Another year I’ve missed out on living. Another diagnosis to add on. 

I often feel like I’m just counting the days. Counting the events I miss. All the things I can’t do. Wondering how I can catch up in life. A depressing outlook I know. It’s not something I think every day but it’s natural for it to cross the mind occasionally, particularly around anniversaries. 

It's hard to know what to think when it comes to anniversaries like these. And it's hard to find words to express those thoughts. It's all so much to process, the illness itself but also the trauma of the treatment I went through. 

Naturally, grief is one of the big thoughts. I grieve the life I could have had without illness and even the limited life I was living with moderate ME. 

I feel anger at the world, and at the professionals who had the wrong type of impact on my illness. 

I have guilt for how this has not only affected me but also my family. 

And I have questions, so many questions! Why me?! But why anyone?

I also feel proud of my survival, of what I have learnt and how I have grown.

I am grateful for the support I have and the friends I have made and getting closer to family. How I’ve learnt to value quality of life (limiting symptom severity) over productivity and learnt to pace. I’m grateful I have started to make improvements for the first time in this period. 

There's a lot of dual emotions when it comes to chronic illness: 

I have learnt both how fragile life is and how strong and resilient I am. 

I have a lot of feelings about the word resilience and others like bravery. I'm not choosing to go through this, many times I crumble under the weight but I think resilience can still manifest even when you're being forced through something. It is not just being able to bounce back but also to adapt in the face of adversity. 

I have felt so isolated at times and at others so surrounded by love in this community.

I have lost so many friends through this and lost opportunities for social connections yet I've found even more powerful connections online. 

I have felt so silenced but that has blossomed into sharing so much and advocating. 

Medical professionals made me quiet, I lost my voice and felt belittled. I have made myself loud by sharing my story and advocating for better understanding.   

I have felt so hopeless yet so hopeful 

At times I have felt I will never get better, and at others I've been so sure I will. I have seen the power that pacing can have when privilege allows for it. And I have started to improve myself. 

I have been put through untold hell and whilst I am not out the other side yet I am emerging. It has taken every ounce of strength I have to survive. More than I ever knew I could have, more than anyone should ever need. But I've got it. 

A year ago I wrote my post 'It's all for that 15-year-old girl' The words are still more current than I thought they would be. It is often still a struggle, it remains hard. 

”For now, I’m rebuilding myself away from them - for her, for the me that exists now and for a future where I hope to never experience this again”

I am still rebuilding myself and I will always carry on for her. 

The words that will always be true and that I'm glad I still remember

“They may have power but we are stronger than them.” 

And we are. They took away my power for a good while there but I fought for it back, and now I’m stronger than ever. 

I never knew about Severe and Very Severe ME or the more severe symptoms people can experience with ME. Neither did my doctors...

ME has a very wide spectrum of severity and symptoms. Many scales don’t go severe enough to reach the depths people experience, leaving out quite a large and definitely important percentage of people. Or they don’t properly distinguish enough between the severities. Which admittedly is hard with such a wide breadth and range of symptoms. But it tends to be the severe end that isn’t distinguished - arguably the people who need clear definitions the most. 

No recognition of the difference between those mostly housebound, housebound, mostly bedbound, and 100% bedbound. Those four generally end up as two categories, sometimes just one! All under the same Severe ME label, making them appear the same severity.  And that’s not to make it a competition but about accuracy. Because if doctors have ever heard of severe ME (and many haven’t), you’re lucky they might think mostly housebound but not as severe as it gets or needs to be recognised. They have to know the severity a patient is at and how to act appropriately!

I didn’t easily find anything that reflected my reality until joining this community. All I saw were things like “what are the 7 symptoms of CFS”. Nothing about the paralysis and the terrifying symptoms, nothing about the people far worse than me, unable to speak or swallow. Nothing to make my Dr understand that this was ME just a severe manifestation, something they hadn’t ever seen before. Instead, I, like so many other Severe and Very Severe ME patients ended up with a misdiagnosis of FND because they didn’t recognise the symptoms as ME - which they think is just fatigue. 

Sometimes I think some people are scared to talk or learn about different severities due to the very real and present fear of worsening. It often feels like many turn their back on this side of the illness particularly when people actively unfollow for sharing the truth. And most health professionals don’t address it or warn people, particularly since many of us ended up Severe due to their mistreatment and GET. 

Even charities fall short, mentioning the effect something has on the housebound but not mentioning the greater effect on the bedbound.

“It is important to realise there’s a severe end to the spectrum of ME and that the average GP may only see one case in his entire life, and these cases are almost unique”  - Dr Nigel Speight

It’s no wonder they are uneducated but they have to learn. And there has to be more of an effort to educate.

So please do talk about the reality of Severe ME. It’s so important because Severe and Very Severe ME patients are often missed in healthcare settings, in research, by some charities, by some of the advocacy accounts with the highest followings and missing most from living. Many unable to speak up themselves or even access this community. The people who need the most support and awareness.  

Help educate, help people understand. Empower ME patients by sharing knowledge. Make your friends, family and anyone, medical professionals if you can, aware and of the true extent it can be for some. 

Had I known three years ago what Severe/Very Severe ME was, the symptoms rarely spoken about that I experienced, my story may have been very different. My diagnosis journey may have been very different. My quality of life may have ended up very different - in better ways. It’s crucial it can be recognised quickly to avoid further worsening. It can be life or death!

It's all for that 15 year old girl

It’s all for that 15 year old girl,

The girl who 2 years ago found herself laying scared in a hospital bed. Who had no idea what she was in for, or how scared she should actually be. She didn’t know she would be broken by them. The girl who two years later is laying in a hospital-style bed at home, even worse than before. 

It wasn’t that she gave up or caved in. Wasn’t weak. She tried to fight till she shattered under their weight. Till she learned her words were not enough against the power they had. Till she lost her voice. Till the professionals made her feel she knew nothing. Questioning everything. Small and insignificant. 

Experiencing it was like watching in the third person - let alone when the memories whirl around my brain and I’m back in that room. A mix of words, a mix of pain. The barrage of it and I feel like her again. Measly, imprisoned, desperate to say no but unable to, or saying it and ignored. They froze her strength. Trapped it away like she was trapped by the hospital walls. 

The fight of advocacy was a thinner line than she knew. The risks of saying no were huge. But she did her best. Learnt to do it through the hardest of ways. Tried to balance on the tightrope of pleasing them and stopping harm to her. She did everything right. She does not need to feel at fault or to blame. And now two years later I am finally beginning to win for her. Finally starting to get to the other side of their looming doom. 

One day, I hope those doctors realise the impact they had on us. How destructive they were to our families and us when using their misplaced power. I hope they learn how we hear their words for years and feel their actions. Hope the memories hit them like a brick and overwhelm them instead of me. I hope one day it swirls around their head instead of mine. It’s for them to feel regret, not for me. 

For now, I’m rebuilding myself away from them - for her, for the me that exists now and for a future where I hope to never experience this again. Each day is for the 15 year old girl who laid scared in those hospitals. When those memories crush me under the weight, I carry on for her. I carry on for my mum who has lifted the weight off me whilst crumbling under it herself. I carry on for every person who never got the chance to escape the hospital walls. 

Things may be overwhelming for me right now but I’m slowly healing. No one should ever have to, but I am. 

They may have power but we are stronger than them.