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Spending Christmas in the Hospital: The Challenges I Faced as a Disabled Patient

Spending Christmas in the hospital was definitely not on my 2024 bingo card. We had everything set for a cosy, relaxing time, but life had other plans. Here’s how things took a sharp turn and landed me in the hospital for Christmas.

In this post, I share my story of being unwell and what led me to spend Christmas in the hospital. Plus some challenges I faced being in the hospital with a disability and tips for anyone in a similar situation.

It All Started with a Cold… Or So I Thought

A few days before Christmas, I started feeling off. I figured it was just a cold—sore throat, a little headache, nothing too serious. But by day two, I felt like I’d been hit by a truck. Fever, nausea, weakness, and a nasty cough took over.

Day three was even worse. I couldn’t sleep, wasn’t eating, and couldn’t keep water down without retching for what felt like ages. Even without food or drink, I’d still feel nauseous and end up retching, which left me sore and weak.

Christmas Eve: The Doctor’s Visit

By Christmas Eve, my partner and mum were really worried so they decided to call for a GP home visit. When she arrived, I could tell she was concerned. My heart rate was through the roof, my blood pressure was alarmingly low, I was badly dehydrated and I had a high temperature.

She suspected the flu and recommended heading to the hospital for IV fluids and further checks, but offered me a couple of hours to try and drink more. She also gave me an anti-sickness injection, which didn’t help. 

When she returned two hours later and saw I had gotten worse, she wanted me to go to the hospital. Having been in the hospital once before many years ago (read about that experience here), I felt anxious about going back. The GP suggested “hospital at home” as an alternative; however, when she called to arrange it, it was fully booked.

I didn’t want to go to the hospital—no one does, especially on Christmas Eve. But I knew it was for the best. 

So, at around 5pm, the GP called the hospital to get me checked in. The hospital informed her that while I’d need at least twelve hours for IV treatment, there were no available beds, so I wouldn’t have a proper room and would be in my wheelchair the entire time. We packed an overnight bag, and off we went.

Hospital Chaos on Christmas Eve

When we got to the hospital around 5:30 pm, the clinical assessment unit was already super busy. After checking in, we were directed to the waiting room. It wasn’t long before I was taken to triage, where a nurse took my vitals and swabbed me for flu and COVID. 

Trying to get a blood draw was a nightmare—I’m notoriously hard to draw blood from, and the dehydration didn’t help. After several failed attempts, they gave up on the blood draw and the cannula and said another nurse or the doctor would try later. I was becoming anxious because I knew I needed the IV fluids as soon as possible. 

Next, we were told to return to the waiting room, where we sat for what felt like an eternity. We were told that it could take up to five hours to see the doctor. As we waited, I kept feeling worse by the minute. 

At one point, a nurse checked on me and, seeing how unwell I was, took me back into the triage room for another attempt at the blood draw and cannula. Once again, they had no luck. She called in another nurse, but she couldn’t get any blood either. I was beginning to look more like a bruised pincushion. The bruise on my hand has only just started to fade four weeks later.

Finally, a senior nurse was called in and, thankfully she did it. Blood was drawn and a cannula was in my hand. We then had to return to the waiting area and continue waiting to see the doctor before any treatment was started. 

A close up of Emma's hands resting on her lap. A cannula is in her left hand.
Emma’s hand with a cannula

At around 9pm, I finally saw the doctor. I was exhausted. He suspected the flu but given my disability and lung function issues, he ordered a chest x-ray just to be safe. 

The x-ray technician was super friendly and made adjustments so I could stay in my wheelchair.

By 11:30pm, the doctor came back with bad news: there was a “strange shadow” on my left lung. He wasn’t sure what it was but wanted to admit me for further tests and to wait for his boss to take a look in the morning.

And so, at midnight on Christmas Day, I was officially admitted and allocated a room. Merry Christmas to me!

We were quite surprised that I was given a bed as we were pre-warned that there were no beds available. We assumed they were keeping the beds for the most serious and vulnerable patients.

I was hooked up to the IV and given antibiotics throughout the night. The nurses were great and regularly checked my vitals. I will go into more detail about the struggles I had a little further down.

The Christmas Day Diagnosis: Flu and Pneumonia

On Christmas morning, the ward was filled with activity. The staff were cheerful, and Santa even made an appearance and everyone received a wee gift. But I was still feeling awful, hooked up to IV fluids and waiting for a diagnosis. We were served Christmas lunch, but thankfully I was too unwell to eat it 😂.

A green food tray with roast potatoes, mashed potatoes, brussels sprouts, and carrots on a plate. A glass of orange juice and a Christmas cracker are also on the tray.

The doctor finally came by just before lunch and confirmed I had Influenza A and pneumonia. I’ve had the flu once before, years ago, but never pneumonia. Hearing that diagnosis scared me because I know pneumonia can be very serious for someone with muscular dystrophy – it can even be life-threatening.

We talked through the diagnosis and discussed my treatment options and action plan. The doctor mentioned that while I was unwell enough to stay in the hospital, he believed I could recover faster at home with my family’s support in the comfort of my own home and bed.

He gave me time to make my decision, but after some thought, I decided to go home. He set me up with two types of antibiotics and anti-sickness meds. He also gave us the number to call if anything changed and I needed to see him.

We left a few hours later. While leaving I felt awful, experiencing nausea, dizziness, and overall weakness on top of a chesty cough. I struggled to drive my wheelchair because I was so fatigued. Once we stepped outside into the freezing cold, I somehow felt even worse. 

Emma a wheelchair user sat in a hospital room on a ward hooked up to a IV. An emoji with a face mask is covering Emma's face
Emma hooked up to an IV bag in the hospital. She has a Christmas gift on her lap from Santa

Recovery at Home

The drive home was horrible. Every turn or bump we drove over made my dizziness and nausea worse, and I wondered if I’d made the right choice by leaving the hospital. But in the end, it was the right call.

The next few weeks were tough. I had to rely on my cough assist machine to help clear the mucus from my lungs. It was a literal lifesaver. Without it, I struggled to clear the secretions. My home ventilation team visited me once I was home, providing advice and checking my cough assist machine to ensure it was set correctly to assist me while I had pneumonia. 

It took a week after returning home from the hospital before I started to regain my appetite. Drinking was still a challenge, but I forced myself to hydrate. As expected, it took weeks for me to start feeling like my usual self, gradually rebuilding my strength. I’m grateful to have had my partner and mum who took care of me around the clock.

Challenges of Being in the Hospital with a Disability

Fortunately, my hospital admission was short, but it was tough due to the complexity of my disability. Here are some challenges I faced and tips for anyone in a similar situation:

1. Needing Special Equipment: Lack of Staff Training

Since I was admitted overnight, I requested an airflow mattress to prevent pressure sores and a hoist for transfers. Although there was a bit of a wait, once the equipment arrived, it was time to get ready for bed.

The nurses were lovely, but they admitted that they weren’t entirely sure how to operate the hoist or fit the sling. The sling was “one size fits all,” but in actual fact, it was way too big. It was so oversized that it wasn’t supporting me properly.

With three nurses struggling to put the sling on me, I was flopping in all directions! I felt like a rag doll. Being shifted back and forth and side to side as they fitted the sling while feeling sick was exhausting and only made my sickness worse.

I couldn’t help it, but my eyes filled with tears. They were doing their best, but all I wanted at that moment was for it to be over. After twenty minutes of struggling, I was finally in bed at 1 am.

The experience highlighted a real lack of training. I appreciate they won’t often have patients with my level of disability, but I honestly thought they would at least use a hoist on a somewhat regular basis for elderly or immobile patients. Hospitals really need to train staff to use hoists and transfer patients safely, especially for those with more complex needs.

The following morning, I needed to go to the toilet, but we realised we couldn’t put me in the hoist with no clothing on the bottom part of my body and push me through the ward to the toilet. There was also no way we could fit in the toilet on the ward with the hoist as it was too small. Instead, they brought the hoist and commode into my room. 

There wasn’t enough space for the equipment, making it a tight squeeze, which felt dangerous as the three nurses had to twist and turn, step over me and crawl under to hoist me out of bed and into the commode, which was wedged between the bed and the wall.

Again, I was flopping all over the place, and it was a workout for them to hold and support my head, upper body, arms, and legs all at once. These nurses were different nurses from the ones on shift the night before. They were also super lovely and really trying their best to look after me and keep my dignity in a not-so-dignified situation.

My experiences with the hospital hoist were so bad that I was worried about having to use it again during my stay. So my partner brought my hoist from home to the hospital to make my transfers much easier for me and whoever was assisting me.

My advice would be to take your own sling with you if you will be staying in the hospital. If you have a different type of hoist, such as a stand aid, as I do, then I recommend bringing that with you. 

Read my review of the hoist I use at home: Molift Quick Raiser

2. The Need for Family Support

Living with muscular dystrophy means I need help with nearly everything. Laying in a hospital bed, I’m even more reliant on assistance as I can’t sit up or lay down by myself, I also can’t move my arms or legs, so tasks like repositioning myself, drinking, or using the call button require help.

My mum was allowed to stay with me overnight, and I’m so grateful for that as my partner was also unwell with the flu at the time so couldn’t stay with me. Without my mum, I would’ve completely relied on the nurses, who were busy with other patients.

My mum could position me in bed and assist me with anything. I kept experiencing a tingling and itchy sensation in my arms and feet. I started to worry that I was having an allergic reaction to the medication or the IV. The doctor reassured me it was normal and was just the IV travelling through my body.

It felt so strange and irritating that I couldn’t relax or sleep. This made me restless, and my poor mum had to keep sitting me up and laying me down and repositioning my arms and legs over and over again. This went on for a few hours until the sensation eventually settled down. 

Without a family member or carer by my side, I would be completely reliant on the nurses for assistance with everything, even simple tasks like moving my arm. However, nurses are busy tending to a full ward of patients, so they can’t dedicate all their time to helping me.

I feel fortunate to have family who can be there for me. Sometimes, I wonder what I would do without them, especially in situations like these. 

3. Cough Assist: A Lifesaving Piece of Equipment

Muscular dystrophy affects my respiratory system, making my lungs weaker. This means that getting colds and chest infections can become very serious for me. So I rely on a cough assist machine to clear secretions from my lungs.  

This machine has become my little lifesaver, especially when I had the flu and pneumonia. I experienced a lot of coughing, which was exhausting, and I struggled to bring up the excess mucus on my own. The cough assist did an excellent job of clearing it by inflating my lungs, clearing secretions, and producing a strong cough. 

cough assist machine philips e70
Philips CoughAssist E70

The doctor was keen for me to use the cough assist during my hospital stay, so my partner brought it in for me. Using the machine in the hospital helped me to clear secretions and provide samples for testing.

My advice for anyone in a similar situation is to not rely on the hospital having a cough assist machine available. While some hospitals might have one, it’s best not to rely on that. If possible, bring your own, especially for longer stays.

4. Accessible Toilets: Not So Accessible

Finding a suitable accessible toilet in a hospital can be difficult and almost impossible if it’s a Changing Places toilet you require. During my long wait in the waiting area, I needed to use the toilet. Because I felt weak from being unwell, I needed both my partner and mum to help, but the toilets were cramped and barely big enough for me, let alone two people to help me. 

We decided to ask two passing nurses if there was a larger accessible toilet available. One said no, but the other said yes. She kindly guided us to the large accessible toilet, which had plenty of space for us to move around and transfer safely, but it was located in another area on a different ward. 

Without that nurse’s awareness of that particular toilet, I’m not sure what we would have done. We would not have known about that toilet or have been able to enter the locked ward ourselves.

Hospitals need more large, accessible toilets and Changing Places facilities. It’s unfair and inconvenient to roam around the hospital in search of a suitable toilet while waiting in designated areas for treatment, appointments, or admissions.

Currently, I can manage without a Changing Places facility, but I know that won’t always be possible. Many wheelchair users fully rely on Changing Places toilets. What happens when we have to wait for hours in a hospital waiting area or are admitted to a ward without access to appropriate toilet facilities?

The Road to Recovery

The recovery process after being discharged was slow. I had trouble drinking and eating, but gradually my appetite came back. The weeks that followed were challenging, but having my mum and partner take care of me made a world of difference. Eventually, I started to feel like myself again, but it took time.

Looking back, Christmas didn’t turn out as I had expected, but I’m grateful to be recovered and back to my usual self. I won’t lie; the entire experience was really frightening for me and my family. I feel incredibly thankful to have them in my life. It’s true what they say: poor health has a way of putting things into perspective and a reminder to prioritise the important things in my life and appreciate the small things.

Have you ever had a hospital stay? What were your experiences like?

Where Next: You Might Also Enjoy

You can also read about another time I was in the hospital and the challenges I faced in the posts linked below:

Being In Hospital Ain’t Easy When You Have Muscular Dystrophy

How To Improve The NHS Crisis And Accessibility Of Hospitals For Disabled People

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Meet Emma

Hi, I’m Emma! I'm an award-winning accessible travel and disability blogger, writer and content creator. My mission is to show you the possibilities of accessible travel through my travel guides, tips and reviews. I also share personal stories, live event reviews and more.

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