ME crash and FND flare together

I knew June 2026 would be a busy month between it being pride month, good weather and the month for horse shows but I never imagined it would get this bad.

I very quickly went from sitting in the shade to avoid the hot sun in the first of the heatwaves this year to this...

....being unable to swallow food for over two weeks and struggling to get liquids down and being sent to hospital by my GP with severe dehydration, twice.

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 

Naidex 2026

Yesterday we went to Naidex 2026 at the NEC. It wasn't our first time there so we knew what to expect. 

First stop was Boccia

 I played two rounds of the game and wasn't very naturally talented at it - but with some practice it could be fun.

I.looked up the Boccia England website to find a local club and there isn't one 😒

From there were went on to look around all of the stands. We saw some good body wipes and shampoo caps but didn't buy them on the spot. Then we saw lots of wheelchairs and got serious wheelie envy over the all terrain and rising wheelchairs available. Sadly way out of our price range

A quick stop for lunch in the food court (we bought a drink so we could eat our picnic there. Too many dietary requirements to eat out safely).

It was then time to go to the book club talk at the Village Green where the author of my most recent audible book gave a talk about herself and her books (life of Pippa online).

This finished at the same time as the next talk I was interested in began on the main stage. I left my husband to buy Pippa's new book for me whilst I shot over to hear the next talk about going from non disabled to disabled. By then I was tired and in a lot of pain so had to recline my wheelchair to try and relieve some of it. The talk was by a former Marine talking about how he managed to create his own wheelchair which helped his.mental health. The financial side of his story didnt really ring true with me so he lost me a bit there. His chair was amazing though.....more chair envy.

We took another little break -essential for me to be able to last a day anywhere

 Took an energy tablet and had a liquid IV drink

Then we headed off to see the stands we had missed, bought some sensory toys, picked up some magazines, saw some old person wide shoes (I need to find some nice ones for summer), popped to the loo and that was us done

A successful day, rounded off with a debrief at Starbucks in the atrium before we headed off to our van and home for the next event in life

Even though my visible band showed me I had only used half my daily points, I was, and still am, exhausted from the day. I wish the visible app picked up social and sensory energy better.

Today I have no plans except my earlier GP appointment (which went surprisingly well). Lots of rest and relaxing today to recover

Goodbye holiday homes trust

This week we had our last holiday with the holiday homes trust. They are closing later this year sadly after operating for decades. Another victim of the costs of living in this country.

We took our daughter's friend with us on this holiday in the hopes that they woukd do some activities together and she wouldn't spend the entire holiday in her bed as she usually does. They came out with us most days and went to the tots disco most evenings too. There were still days and vast periods of days where they were in their room, daughter refusing to go out and friend bored and stuck there.

We were able to leave the caravan and go to the bar, pool, entertainment, beach and shop knowing they were safe and close by. Our son was able to go out to the shop and arcade and not have to babysit for us all the time. We changed our diet completely for the week and I dont want to have chips for some time now, but it was all eaten without complaint.

 We had all the toddler foods along with bacon for breakfasts from the on site shop.

Spending money was a point of contention as daughter refused to spend even 1p of her pocket money, only using the extra we had pricided for the week, despite at one point her having more money than we did and we were paying for 5 people's drinks and meals!

Being able to get around, access everywhere and feel less of a burden was everything.

Our caravan was truly accessible although I dont understand why they insist on not having a double bed for disabled people. We do get married too. I spent the week sleeping in the gap between the two beds we pushed together.

Today we are travelling home in the rain, again stopping for chips en route, then back to clean the house as our pet sitters have historically left it in a dirty mess and then with loads and loads of washing to do of all our clothes, bedding, towels and swim wear too. Worth the break.

Having a crown fitted

OMG I got myself so nervous and scared when it came to having an hour appointment at the dentist for a crown to be fitted. When she told me she was going to fit a crown I asked her if  it would hurt and she said yes, it can be painful. So, being naturally nervous and wary of dentists since knocking my top front teeth out as a pretender and going through a lit of painful dental restoration work then, you can imagine how I was feeling at this prospect. I have had teeth extracted (one of the joys of having fibromyalgia and ME is that your teeth and gums are affected and it is common for teeth to crumble and need extracting). I convinced myself in the end that whatever she needed to do it couldn't be worse than having a tooth extracted. The noises and pressure of that I find almost unbearable  but then I went onto Google this morning to see what the process of fitting a dental crown is exactly so I knew what to expect. It all told me a post would be fitted to my tooth and a top cemented on to that. I know that is what I have in my top front teeth. Several times when ai was younger the temporary crowns would fall out and the post was visible. I read that it woukd hurt at the time and afterwards too and got myself to anxious I nearly backed out altogether. But then my husband reasoned with me that I woukd just be delaying the inevitable. So I made the final decision to bite the bullet so to speak and get it done.

When I arrived there was a full waiting room so I had to hover out by the front door. Then a dental nurse told me they wouldn't be long and soon enough the dentist came out to get me. I told her how scared I was and asked if it was OK for me to put a podcast on in my earphones. She explained the process was very like having a filling, something I am sadly used to. 

She rubbed numbing gel on my gums, gave me two painful injections to make my even more numb and then put a filling on the tooth. Then the dreaded drill and suction combo came into play as she drilled and shaped the filling to allow for a crown to fit. All of that was ok. She caught a painful bit a few times but apologised and reacted when I let her know it hurt. 

Before I knew it she said it was all done!

Then the dental nurse who was also the scanning nurse used a really cool piece of technology to scan inside my mouth. I had a probe a bit like the crevice tool of a hoover inside my mouth and it made a fast clicking noise. It was taking thousands of phitis and creating a 3D image of my teeth and gums on the screen. When that was done they ordered the crown and made me an appointment to go back in a week. She then stuck a temporary crown in which was painless and quick.

Since then my gum has been sensitive in that area but she said that is perfectly normal. I haven't had any pain at all. Hopefully this will work and be a solution to my repeatedly lost fillings but only time will tell.

The Proud Place

We visited the proud place for the first time this weekend. Usually going to a new place involves hours of me researching the location online, in reviews and on Google street maps. This time was different.  When ai looked at the information for the event we planned on attending it included a section about accessibility as part of the main information sheet. Not hidden in a menu or drop down part of the screen, actually clear for all to see with the date and time for the event. I was able to confidently mention this event to my family knowing for certain that we would be able to access it. No questions asked. 

Such a refreshing approach. 

Despite this, on the day I was nervous. That is based on previous experiences elsewhere though. The old 'yes, we are fully wheelchair accessible, we just have two steps to get in' or ' oh, it shouldn't have listed us as accessible' was on my mind.

We arrived in the rain, parked in a nearby disabled bay and found the whole place easily accessible. The front door was a bit tricky with It being automatic but also on a buzzer intercom system but once we were through that it was all open plan, easy to get around and people were very accommodating. 

When there was a breakaway meeting I chose to attend in a smaller space I panicked about not fitting in the room. A volunteer simply moved chairs and steps out of the way to make space for my chair. I didn't even have to ask.

When they came around taking food orders (which we didn't even know happened) they had a gluten free vegan option available. We told them our extra needs with food and all were no problem, easily accommodated. We were actually able to eat food that other people were eating, at the same time and in the same place. That really blew my mind. I thanked the kitchen volunteers and told them how rare that was and their answer was simply that they try to be as inclusive as possible with food. 

If you have a transgender person in your life I whole heartedly recommend the proud place to you and to them. Look them up.

(No photos due to people's personal choice and because unfortunately transpobes choose to exist)