It all started with me choking (again) on food in the kitchen at home and that seemingly sparked an FND flare in which my body decided to target my fight, flight, freeze or flop response towards swallowing.
It felt like I was trying to swallow a golf ball.
I struggled daily to take my essential medications.
I tried using huel drinks, protein powder ice creams (they caused IBS flares because of the ingredients) and smoothies.
I went to my GP asking for liquid nutrition support, asking for help with my swallowing. At this time I had no idea what was going on. I didn't know FND could cause this chaos. I didn't know severe ME could make digesting and swallowing food so hard.
You see, from doing too much in May and June (I assume that was the spark), my body was exhausted. It had nothing left to give. I had used all my spoons for the coming months at once without knowing.
The strange thing is that after a couple of days I stopped feeling hungry. Yes, I woukd look at my family eating some foods longingly and wish I could eat them too, but there was no stomach rumbling hunger.
My GP surgery sent me to see a student GP with my printed out information and my husband in tow for support (and because they seem to listen more when he is there). I have the student GP my notes, which stated I hadn't been able to eat for 10 days at that point, that protein powders were making me unwell, that I had the feeling of swallowing a golf ball, that I was concerned because I needed support and requesting liquid nutrition. It said I have pre existing esophageal dysmotility and diffuse spasms He asked if a dietician had written the note. When I said no he put it on the desk and refused to read it.
Then he told me that GPs couldn't give me liquid nutrition support because the system simply didnt allow it, that he couldn't refer me to the dietician and to keep drinking protein shakes.
Useless
We were shocked.
A week later I was struggling with headaches and had visibly lost weight. We tried to get a GP appointment and were told once again they "couldn't" do anything. So I complained. Loudly. It got the attention of the partner and he phoned me directly. He said I was to go to A and E immediately as I was severely dehydrated. He offered me a home visit but I said there was no point if his advice was to go to A and E.
Off we went. We took a doctor letter with us and we're taken quite speedily to AMU. I was admitted there for fluids and vitamins. I was referred to SALT who came to see me a couple of days later.
I was fortunate to see a SALT who knew about FND and ME. On admission none of the doctors or nurses knew what either were and I was losing faith in their care. The speech and language therapist picked up on my communication card saying I have autism and got me a hospital passport. The ward staff kicked off loudly about that and were not happy that she was "sticking her nose in" to help me. That morning I had had an argument with a cocky doctor who had lied to me. He had said one thing to me and another to the nurses. When I called him out on it he took offence and got confrontational. I didn't need that. I just wanted him to be honest.
She put in the passport that I need things explained fully to me and clearly and then my husband filled the rest in with my help. That passport is now on my hospital record.
I was sent for an endoscopy. As expected, it was clear.
She and her colleague sat with me over a couple of days and explained the mechanism of what my body was doing. They explained and showed me what the FND was causing to happen and gave me some strategies to help me eat again safely.
I was moved to another area of AMU so the dieticians coukd cine to see me and it was explained that they woukd weigh me, discuss my calorie needs and difficulties and come up with a plan with me. What actually happened was that they got as far as the ward desk but didn't bother coming to see me at all. They had a list of my intolerances and still prescribed me a liquid nutritional support drink containing milk. Good job I always check the ingredients!
I obviously sent it back explaining why I couldn't have it and I never heard off them again.
The doctors were talking about putting a feeding tube in and possibly a PEG as a ling term solution. I didn't want either. So I forced myself that night to eat half a jacket potato filling. I was so overjoyed that the strategies had worked! I was amazed. It made me feel a little crazy though, how was it that easy?
Except it wasn't. That night I was up three times.
I decided the next day that if I coukd keep down some food and drink then I woukd discharge myself. I was so desperate bit to have a tube.
But in the morning I had a mint tea and felt so unwell. I became very hot and nauseous and needed to take anti nausea medication. But I didn't want a tube. So I ate half a bowl of gluten free cornflakes with almond milk.
When the morning round got to me I told them my plan and to my shock and surprise they deemed me medically fit for discharge there and then.
I went home very nervous but was very relieved to be home.
But, preductably, four days later I was struggling again. Another very concerned GP sent me back to hospital. This time I was finding light too much to bear. I was in A and E having blood tests and hydration with an eye mask and face mask on.
I was taken up to the same ward area again. I was given more vitamins and hydration through IV and the topic of a feeding tube came up again. I said I didn't want one.
A dietician came to see me. By then I had dropped 10% of my body weight in 2 weeks. I had been told I woukd need a feeding tube and had come around to the fact that a tuby might get me home and safely getting some nutrition at least.
That is where my problems started.
By then I had realised my FND and ME were the presenting issues. I had done my research.
I understood how things were going.
So when a gastro doctor stood there and told me I needed a new medication to help withnmy GERD and Esophageal spasm I declined. I explained that with ME I get every side effect from every medication so woukd need to start on the lowest possible dose, but that my present issue wasn't gastro. It was ME and FND and the energy needed to swallow. I coukd functionally swalliw but it was exhausting me.
He said 'I' gastro' over and over. So we said thanks but no thanks and he left
The dietician came and weighed me. The first time I had been weighed in hospital. But she discounted my weights from home and said I hadn't lost enough weight to need any support, hadn't lost enough muscle mass to need support and asked what I wanted her for. We told her I had dropped 10% of my weight in 2 weeks, that I coukd no longer self transfer because I was too weak, rhat I couldn't sit upright unaided now because I was too weak and that I wanted some support in getting enough hydration and nutrition because I was exhausted.
She said no.
Then a SALT came to see me. One I hadn't seen the last time I was an inpatient. She asked if she coukd see me swallow. I said yes, no priblem but it woukd have to be tomorrow because I didn't have anything with me to show her me swallowing at that time. The hosoutal had nothing i coukd eat last time I had to do a swallowing assessment so I knew from experience that my husband woukd need to bring food in for me. She said OK, no problem. She asked what I was looking for help with. I said I realised I needed a feeding tube because everyone kept telling me that, that I just wanted support withnmy hydration and nutrition.
Then the ward round doctor, a respiratory doctor, came to seenme and told me I shouldn't be in hospital because they weren't doing anything for me and i woukd just pick up an infection. She said this as i was attached to IV hudration and had just finished IV vitamins.
So I self discharged.
And went on my NHS app.
It showed me the doctor in A and E had written that I was presenting with weight loss ajd abdominal pain following bariatric surgery. I took this up with PALS. Who did nothing.
It told me a referral had been made by the GP to SALT in the community.
So I waited. I was dropping weight and left waiting. I was terrified I was going to die because nobody was helping me.
I was vomiting and heaving just from the effort of going to the toilet. My husband was lifting me into and out of bed.
I self referred to local OT help for equipment to support my husband.
I then heard from SALT. Their letter said they were nit able to see me because they don't deal with swallowing difficukties caused by FND, Autism and mental health
That wasn't the issue.
So I emailed them to complain. I was then told by email that they wouldn't see me because I coukd swallow, because the dieticians had said I had not lost any weight, because I had not lost any muscle, because I had tikd the hospital dietician and SALT I wanted a feeding tube. I argued all of these points via PALS. They did nothing.
So I found a private dietician to get some help.
She understood ME and FND ajd understood my weight loss was because I was too exhausted to eat.
She wrote to my GP requesting liquid nutritional drinks.
And they prescribed them!
So now I know how many calories I need a day to maintain my weight and have a way to get them without too much energy being needed.
Imagine if the GP I saw at the start had prescribed me the drinks I was asking for
All of this nonsense and harm could have been avoided
I would have never become to unwell
Now I need to remain in my hisputal bed at home unless I am hoisted out to my tilting commode.
I am too weak to withstand a shower.
My ME crash is ongoing.
My orthostatic intolerance is ridiculous.
I struggle massively to sit up unaided for any length of time.
I cannot self transfer
My and my husband now sleep in two single beds pushed together and had to put our double bed into storage
All of this because the NHS would not help
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