Two years ago, September 2017, I stopped being able to swallow properly. My diet suddenly dropped to include less than a handful of options. This was to be the start of a significant change in my health and life.
In November I was admitted to hospital for the first time in my life. For three hellish weeks. I repeatedly explained to numerous people what was going on with my swallow. Repeatedly I was disbelieved. Tests came back saying I was fine and nurses reacted by telling me there was nothing wrong so I could swallow. I had my first NG tube and when I got distressed and questioned the level of discomfort I was experiencing with it the nurse told me I should have just eaten so I wouldn’t have needed it. It was clear I wasn’t being listened to with open minds. The first 16 or so days I was in hospital I was getting no food and very little (very very little for me) fluids and no medication. So that included no pain relief, no antidepressants and no antihistamines despite horrific allergies. No one seemed to understand why I thought this was a problem. I would later be sent home with ‘magical medication’ which would surely fix me and told it’d be reviewed in four weeks.
This meant four weeks with very little food because the tablets would take time to work, if they worked at all. No one seemed to understand, or at least acknowledge, why I was distressed by this. Everyone was just focused on how great it was I’d be home for christmas. There was no back up plan.
Six weeks after that, in what my nice gastro described as ‘a bit of a pickle’, I was finally re-admitted to hospital. By this point I was once again starving, dehydrated and was violently sick every time I moved. I was so ill that they couldn’t give me the NG tube I had begged for through tears just two weeks earlier. Most drs still didn’t believe me. One refused to tell me what the plan was once an NG tube was in because I wasn’t co-operating (I was violently sick when they tried to put the tube in but she read that as uncooperative). She had earlier decided that the way forward was refering me to the eating disorders team which I know is a long wait and I also repeatedly told her it wasn’t a relapse of my anorexia. She just kept asking how would I know? She went on to get me assessed by the mental health team and thankfully they realised I was in a drastic situation and was reacting much as most people would, that my mental health was suffering but wasn’t causing my swallowing issues.
I have since found out that in the run up to that second hospital admission j was hallucinating . I knew things were bad but until recently I didn’t know how bad…
Eventually the good dr won out and I was able to get the PEG tube that we both knew I really needed. The first try failed because my stomach was in the wrong place … so it took a second attempt to get the tube in me. During this hospital stay I had multiple days of being nil by mouth or tube, more days like that than days being able to eat or drink I think, because various tests were being run. They were concerned about my blood sugar levels which was ridiculous because if you havent eaten in months, they were going to be squiffy…
Whilst still in hospital I had issues with my care company and it became clear I needed to change. This has been reiterated by the much improved care I’ve had with the new team. But getting used to new staff, getting people trained up etc is all tiring, hard work. And I was recovering from starvation and all my EDS symptoms got worse whilst I wasn’t able to eat. I also gained new symptoms.
One of these new symptoms was wobbly lenses in my eyes. This limits how much I can read at once, how well I cope with movement and can lead to me feeling very seasick when all I’ve done is scroll through instagram. Yet another thing to adapt to and change to cope with. I now have pink tinted glasses which help a lot but I still have symptoms because of my eyes and I can’t see distance as well as I used to, something that means it’s incredibly difficult to use binoculars and which affects my ability to see through my camera viewfinder.
I also lost physical strength as well as awareness of my body. When I was in hospital the second time, if my eyes were closed, i didn’t know if i was laying down or sitting up. And that is something that hasn’t fully recovered although is vastly better than it was.
Today, two years on, I am incredibly grateful for my feeding tube. I no longer have to worry about my calorie intake, or how I manage to maintain my high fluid needs or how im going to swallow my medication. I have figured out the random things I can and can’t eat or drink and I’m happy with where things are. I have the energy to get out of bed, to leave the house and even to go on holiday. Everything has changed significantly. And what I’m most grateful for is that I got to share my two year ‘anniversary’ with my best friend who had shared a room with me almost exactly two years ago. A couple of weeks after my swallow broke, she put up with my odd eating and awful exhaustion. Months later, despite being 200 miles away, she spoke with my doctor and fought with them to get me the care I needed, and I love her.