Health and hospital update - October 2026

So I’m still finding things tough with my M.E; I’m struggling to adapt to my ‘new normal’ as there’s been no improvement since my M.E declined end of last year. I’m in a bit of a rolling crash where I’m exerting myself which can just simply be my morning routine which later in the day causes a Post-Exertion Malaise crash. I then I don’t have chance to recover before I exert myself again like doing the following day’s morning routine again, which will again cause more PEM crashing on top of yesterday’s PEM crash which repeats the rolling crash cycle.

As well as my M.E bothering me this year so has my Ehlers-Danlos. I’ve been in a lot of joint pain especially recently but more-so my bladder problems caused by a mixture of EDS and having a neurogenic bladder. I’ve been in an incredible amount of pain with my bladder the past few months sometimes to the point where I can’t function because of the pain and my sleep has really been affected too. The lack of sleep has also been making things more difficult with my M.E too. My EDS also causes problems with others organs and I’ve been waiting for quite some time to see gastroenterology.

Because of all the pain I’m in at the moment my GP is referring me to the Pain Department at the hospital. The community pain service that is privately outsourced is useless. I’ve seen them a few times and they were no help at all. My GP didn’t know that the hospital had a Pain Department but when I ring for urology there’s an option to go through to the pain department so I knew it existed which I why I asked for a referral to be made there.

Image made from the
book cover of ‘Be Patient’

This state of my M.E at the moment really worried me about going into hospital for my surgery. Even before my M.E wasn’t as bad as it is now going into hospital would make my M.E much worse; sometimes to the point where my body shutdowns - when this happens I’m unable to move or speak. I also can’t take my bed setup* that I’ve developed at home into hospital, something I find helpful and essential when I’m bed bound like I am in hospital.

*(click link to read the blog post all about my bed space)

There are certain accommodations I need in hospital to help me manage my M.E as best as possible as well as managing my mental health needs and autism. The main accommodation is having my own room. I need a space of my own and one that I can keep dim and quiet with few people such at during ward rounds. Being on a ward is not something I can cope with at all for so many reasons. I also need my different communication methods understood from verbally speaking to using communication cards to squeezing a hand for yes and no. Pain and all that comes with it, like for example seizures and sickness which also needs to be managed. Having M.E and EDS makes simple things more complicated and that needs to be understood and addressed. Such as putting me under a general anaesthetic for a procedure as many EDS patients like myself don’t respond to local anaesthetic. I also need support with pretty much everything and my PAs come in to support me - I am waiting for my social worker to create a hospital care plan that will outline my needs in hospital, such as what care and equipment I need (both equipment that needs providing and what I’ll bring from home, like my hands-free water bottle). She’s also going to create a PA care package for when I’m in hospital that will be different to the care package I have at home. It will include hours for my PA’s to come in periodically during the day to care for me, such as getting me washed and dressed, fed, getting drinks, sorting out my catheter. Though the ward does have Health Care Assistants they don’t have the time to fully carry out all my care needs as I need them too especially when they have to divide their time between other patients all needing a lot of care too. Plus there just isn’t enough staff to go around to give each patient the time they need and my PA’s know me better are are more attuned to my needs and how to care for me. They know without me saying when I’m in pain, or how best to wash and dress me, and to move me without upsetting my EDS joints. This hospital care plan will mean that my PA’s can come onto the ward even when it’s not visiting hours as they’re there to care for me. It will also be helpful too as my PA’s can also do things like fetch things from home for example.

When I got to the Day Surgery Unit initially I was put in a communal room. I did explain that I had explained that I needed and explained that I needed a bed as I couldn't stay in a chair for long periods. The last thing I wanted was for my surgery to be cancelled because I’d be in a chair for too long and my dysautonomia flared up and I ended up fainting or my blood pressure wouldn’t be safe enough to have the procedure. Unfortunately I didn’t get a bed but I was moved to a room of my own and the nurses helped my PA to recline the chair so I was more-or-less in a laid position. The nurses and my PA Emily were great. Emily especially went above and beyond for me that day. The ward manager in Day Surgery came and spoke with me about the pre-planned care which reassured me. The nurses also let me and Emily loose on the trolly cart of pillows so I think I got at least 6 pillows and made myself a body pillow out of them. Normally one pillow is all you’re lucky to get!

The anaesthetist came and I managed to get most of the medications I needed to mange the surgery and afterwards. When the consultant came he defiantly wasn’t clued up on Ehlers-Danlos Syndrome and how local anaesthetic doesn’t work for a lot of EDS patients like myself. I did have a card in my Medical History Passport which the nurse had taken away that explained this. Emily advocated for me on this matter as she also has EDS and local anaesthetic doesn’t have much effect on her either. So as my PA and fellow EDS-er she spoke up and we managed to go ahead with general anaesthetic as planned.

The surgery I had was to inject Botox into my bladder. I’m still feeling quite fragile and worn out so I’m just trying to rest. When I was reading about treatment options many things I read recommended Botox especially when other treatments, like in my case, have failed to work. I’ve tried many options; I take medication that is specifically for bladder spasms, I’ve done iAluRil installations and done dietary changes like cutting out tomatoes, caffeine and spicy food. 

The Botox will help in several way, relieving the spasms I get in my bladder and helping my overactive bladder. The Botox will take up to a few weeks to start working but I hope it will be the answer and offer me relief as I’ve been in despair and the pain has had a huge effect on my mental health. Urology is going to do a follow-up in 4 months. The Urologist I met in hospital who discharged me was the best urologist I’d met. He really listened to me when I expiated about the pain and the effect was having. Other consultants never wanted to listen to me they just wanted me out the door as quickly as possible. I also found out from him that strawberries affect the bladder too and I eat them a lot so that’s another food to cut out. He told m off for drinking coffee but I explained that I did as for decaf but the hospital didn’t have decaf and the nurse vouched for me that decaf isn’t available. (So in future I’ll have to pack sachets of decaf coffee to take into hospital.)

I’d asked for a particular medication to be given to me just before I go to theatre to help with my seizures, I hoped this would be IV but the Day Surgery Unit only gave out tablets. There were other medications I hoped I’d get IV but I was only given IV medication in theatre. Before going to theatre and back on the ward my medications were all liquid or tablets. The reason why I hoped for IV medication at least overnight before I return to liquid and tablets in the morning like at home is that because of my EDS I have delayed gastric emptying. Because of this medication especially tablets take longer to absorb and take effect. At home all my PRN medication is liquid or effervescent (dissolvable) which slightly helps as they absorb a little quicker than tablets. Thankfully in hospital they listened to me on this and the vast majority of time my paracetamol was given to me in liquid form alongside another liquid pain relief medication.

I got really good care from the nurses and Health Care Assistant's both in Day Surgery and on the ward. They really liked my catheter bag covers and valve covers and agreed that they look much nicer than a bag of wee! Another nurse thought I sounded really posh as I had my own personal team of Personal Assistants. The staff loved my wheelchair too.

While in hospital I wasn’t kept waiting long at all for pain relief after asking for it which was a huge positive. In the past I’ve been kept waiting hours and in the Emergency Department it’s a disaster. The only time I was kept waiting was when I had bad nausea and I wasn’t due my usual anti-sickness medication so I was waiting for a doctor to prescribe me an alternative. In the end i was allowed my usual medication early. I take it four hourly at home anyway but in hospital they’d written me up to have it more spaced out than that.

I was so glad that I was always given a room of my own. This really helped my mental health, my autism and my M.E. I just cannot cope on a ward for a multitude of reasons and I need my own space that I can keep low-sensory. It makes a huge difference.

Also to help keep things low-sensory I wore my sunglasses durning my admission instead of my tinted glasses for added low sensory-ness and to also make my light sensitivity more visible. I also wore my noise cancelling headphones the vast majority of the time, mostly because I was listening to my book and different podcasts to keep me entertained and distracted.

When I’m in hospital or have had surgery I’m usually not well enough to do much for entertainment. I usually just listen to things and it gives me a good distraction too from pain and nausea. I didn’t really sleep in hospital as I wasn’t that comfortable and I was in pain. I just rested throughout the night with my headphones on and I listened to a variety of podcasts and I managed to finish my audiobook as well.

My Dad did visit me too on the evening of the night I was staying in hospital.

I have a follow-up with urology in four moths to see how I’m doing with the Botox. I’m really hoping it will be effective. It’s been a week and a half now and things are looking positive. If it does help and work it’ll be a procedure that’ll be repeated every 6-ish months depending on how long the Botox stays working. It’s just unfortunate I can’t have the procedure done as an outpatient like a friend of mine has it or even just day surgery. I have to stay in as I live alone and I don’t have overnight care and I’m a falls risk. I’ll just have to take in my own sachets of decaf coffee but I feel more confident in going into hospital and knowing my needs will be met and I’ll be cared for. Especially as I feel like a zebra in a hospital full of horses at my local hospital and they’re not always great at treating zebras, especially how I feel in outpatients and in the Emergency Department. However with communication and planning they did manage to treat me as a zebra this time for this procedure and having to stay in as an inpatient and meet my needs and accommodations.

For now I’m just resting at home. My catheter site has become infected since I came out of hospital so I’m just dealing with that at the moment and my catheter change got delayed but the community nurses have been great. I was in a lot of pain initially when I first came out of hospital for just over the first week but things are settling down now. I’m happy to be back in my own home in my own bed with my PA’s.