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

I’ve been debating for a while whether to share this experience or not. Mainly because I wasn’t sure if anyone would be interested, but also because I thought it would come across a bit too ranty. Then I thought, why not, this blog is about me, my life and having Muscular Dystrophy. And everyone loves a good rant sometimes. As the title suggests, I had the unfortunate experience of being in the hospital last August. Being an inpatient is never a pleasant experience but being in hospital ain’t easy when you have Muscular Dystrophy or any disability for that matter. The whole experience can bring a whole host of challenges.

Grab a cuppa, get comfortable and let me set the scene.

How It All Began

This particular Friday in August started off like any other Friday. I don’t work Friday’s so I usually sleep a little later and get up about 9am and have some breakfast before my Mum comes in to get me ready.

I was feeling quite tired, but I often do (the joys of Muscular Dystrophy and muscle fatigue) so I really didn’t think too much of it. Allan mentioned that he thought I was quiet and not quite my usual self but again he put it down to me being tired.

I continued my usual routine and headed off for my shower. Everything was fine, quite normal I’d say. I was chatting away to my mum and discussing what we both had planned for the weekend. I was planning on taking my nephew bowling for the first time later in the afternoon. Little did we know that was about it change.

After my shower, my mum continued our normal Friday morning routine of getting me dressed, doing my hair and my daily exercises. By 11:15am my mum had me ready and so she left. This is normally when I sit at my computer and have a quick look at my emails, check social media, reply to comments etc before doing my makeup.

As I sat checking my emails I started to become extremely lethargic. I really couldn’t be bothered moving. The thought of putting my make up on was a chore so I sat and mindlessly looked at rubbish online, waiting for the moment I’d get a boost of energy to get myself ready. It didn’t come.

Suddenly I became incredibly cold. Allan set the portable heater up next to me and wrapped my fleecy blanket around me. He couldn’t understand why I was feeling so cold because it wasn’t even cold in the house.

I was so cold that my body started physically shaking. Then my jaw began to uncontrollably rattle so much so that my teeth were crashing against each other. At this point, we knew something wasn’t right. I couldn’t be this cold. Pain spread all over my face, chest and back. My jaw wouldn’t stop rattling. Wanting the pain and rattling to stop I placed my tongue between my top and bottom teeth, but it was so painful. I thought I was going to bite my tongue off.

My lips were blue and my face was drained of all colour. Allan immediately called my Mum to let her know that he was taking me to hospital. Luckily my Mum was only two minutes from our house, so she rushed around and could immediately see a dramatic change in me from when she left less than an hour ago.

Not wanting to waste the hospitals time I begged them to call my GP instead, but they advised my mum to call an ambulance due to the situation and my disability. Bundled up wearing a big hoodie and my fleecy blanket we drove to the hospital because I didn’t want to waste the ambulance and paramedic’s time.

We checked in at the A&E reception desk and took a seat in the waiting room. To our surprise, I was called less than five minutes later. The triage nurse began carrying out some tests to check my blood pressure and temperate. Straightaway she knew I had some sort of infection as my temperate was at 38.9. She immediately took me through to a bay to be assessed by a doctor. I cannot fault the initial assessment I received or the fact I didn’t have to wait long to be seen. I’ve very grateful for that.

Barrier To Accessibility

However, upon entering the resus area, I encountered the first barrier to accessibility as a disabled person. When transferring from my wheelchair to the hospital bed we noticed the bed was too high. To my shock, it couldn’t be lowered. Thankfully Allan was there to lift me up onto the hospital bed otherwise it would have been a struggle and potentially dangerous.

I’m not even sure if or how the staff would have lifted me if I was alone. There was no mention of a hoist when I asked if the bed could be lowered. There may be a logical reason why the bed can’t be lowered but I found it quite odd especially when the bed in my little GP surgery is height adjustable so you would expect the hospital to be the same or better.

I’m not the easiest person to get blood from so this was the next challenge. I gave the student nurse a heads up and I’m not proud of being her biggest challenge when it comes to drawing blood. Sorry! While she tried to get blood I was examined by the doctor and further tests carried out. It was proving impossible to get any blood from me or find a vain for the cannula.

Emma's hand with a cannula pumping IV into her body. Being In Hospital Ain’t Easy When You Have Muscular DystrophyThey tried for almost 1.5 hours until they admitted defeat and that’s when the senior doctor came in with a little machine called ‘AccuVain’ which made my veins more noticeable. The doctor finally managed to get the cannula in my bony hand…ouch! My arms, hands and feet were not willing to part with any blood so the doctor decided to take it from my groin. Surprisingly this was much less painful than I expected. Finally and very slowly they managed to fill the bottle with my blood.

The hours past and they were still no clearer on what was wrong with me. They continued to monitor my temperature, heart rate, blood pressure and blood sugar. All of which were either too high or too low. Something wasn’t right, but what, they didn’t know.

I was hooked up to an IV drip, my vitals were checked regularly and I was given some food to bring my blood sugar up. I was sent for a chest x-ray due to the pains I was experiencing during and after my body was shaking. The technician had to make a few adaptations to the way he did the chest x-ray because I was unable to sit in the desired position unaided due to my poor trunk control and balance. After a few tweaks, extra boards and cushions we got the x-ray pictures they needed. I found the x-ray technician really helpful and friendly. He made me feel comfortable and chatted away the entire time.

The Diagnosis

The doctors began to suspect that I had sepsis as all signs were pointing towards that. They kept checking me over for any sign of wounds or infection. Since my vitals still weren’t playing ball they decided to keep me in for observations for at least 24hrs. I didn’t want to be admitted, but due to the circumstances, they were not willing to discharge me. It was too risky.

I had never been admitted to an NHS hospital before so the thought of being kept in filled me with utter dread and fear especially when they didn’t know for sure what was wrong with me. How are they going to cope with my disability? How would I manage to go to the toilet? How would they move me or get me out of bed? What if the bed wasn’t comfortable? How would I cope on my own? How would I call for help when I can’t move my arms to press the call button? Would someone be able to stay with me? So many thoughts and questions went through my head.

Emma lying on a hospital with a cannula in her hand pumping IV into her body. Being In Hospital Ain’t Easy When You Have Muscular DystrophyI was taken to the Acute Assessment Unit and the main nurse in charge was lovely. She could see I was upset so she tried to make me feel as comfortable as possible. While waiting to see a doctor from the medical assessment team the nurse took a urine sample. The results came back positive for infection. Her exact words “it’s loaded with infection”. I felt a mix of relief and anxiety.

I’ve had urine infections in the past and they always resulted in the same symptoms. This time I didn’t experience that at all. Now thinking back on the days leading up to that Friday morning I remember having pain in my back around the kidney area, but that was all. I really didn’t think much of it.

These were obvious symptoms of the urinary tract infection (UTI), I just wasn’t aware of them at the time. It’s scary to think how a UTI can affect you. One minute I was ok and the next I’m shaking uncontrollably and turning blue and needing to be monitored in the hospital. We were told by one of the consultants that the jaw-rattling is called rigor, which meanings “A chill, usually with shivering, as at the onset of high fever and chills.”.

Attitudes Towards Disability

My next problem with my hospital experience wasn’t due to accessibility barriers. It was more to do with bad attitudes towards disability. The bad attitude came from the grumpy, arrogant senior consultant who came in to assess me. He was patronising and belittled me when I misheard something he said. That might have had something to do with the fact he was really tall, stood a good distance away from me and didn’t have the decency to sit at the same level to speak to me.

When I misheard him, he striggered and then arrogantly towered over me and repeated the question in a raised voice which was completely unnecessary. I was shocked and taken aback by his manner. It made me question whether he was like this with everyone or if he thought because I was disabled that I couldn’t understand or speak for myself.

Lack Of Understanding Or Knowledge

The rest of the consultation pretty much went the same way. We tried to explain the difficulties of staying in hospital as I have a special sleep system at home, I have my partner and mum who care for me and that we have a hoist at home. His reply was “oh you’ve lost me”. Seriously a senior consultant has no idea about this sort of thing and doesn’t know what a hoist is? Completely unhelpful or failing to give any sort of reassurance, he abruptly left and had my family and I pondering what to do next. We couldn’t believe his lack of bedside manner.

Self-Advocacy Is Crucial

Realising we weren’t getting any help from the consultant, my mum spoke to the lovely nurse instead and explained our concerns. She went straight-ahead and requested an airflow mattress and a private room for me to help make things a little easier. It was appreciated but didn’t make it less scary.

Once in my own private room, I was able to relax a little and try to get used to my new digs.  Having not ate much all day we asked if it wasn’t too late to get some dinner. There was no real vegan and gluten-free options so I opted for a salad. Although I struggled to eat much of it as I was still feeling horrible and nauseous.

It was almost 9.30pm and no nurses had entered the room. We decided that it would be best for my mum to stay with me in the hospital and for Allan to go home and try to have a good sleep so he’d be fit to look after me once I got home. Unfortunately, there were no folding beds available for my mum to sleep on and the reclining chair next to the bed didn’t even recline. Not good for my Mum’s bad back after years of manual lifting.

Emma's private hospital room. Being In Hospital Ain’t Easy When You Have Muscular DystrophyIt was now 10:30pm and still no nurse. I was supposed to have my medication a while ago. My mum went to ask for a nurse. The nurse came in a short time later and tried to give me different pills from what I was supposed to get. Thankfully we noticed and made her aware before I took them otherwise I might have had more problems than I already had.

It was late, I was exhausted and feeling awful. We started to get ready for bed. Despite having a physical disability and despite the staff knowing I needed someone to stay with me because I wasn’t able to do anything for myself, still, no one offered to help my mum get me changed or take me to the toilet. We were left completely to do it all ourselves. Whenever my mum went out to the corridor there was barely any staff and the ones she did see were chatting about their personal lives or busy.

I finally got settled into bed and my mum tried to get comfortable in the chair. We didn’t get much sleep though because our room was right next to the ambulance bays. It was a busy Friday night as well so I think we got about an hour’s sleep. I was supposed to be frequently monitored and have my vitals checked every few hours, but that didn’t happen either. A nurse came in at 3am and that was it until around 9am. I would have been better off at home as I wasn’t receiving any care or monitoring from the staff. Is this really how NHS hospitals are treating their patients, especially vulnerable, the elderly and patients with severe or complex needs?

My heart rate and temperature were still not at a suitable level so there were some concern and talk of another possible night in the hospital. I was seen by the arrogant consultant again and he was even more arrogant than the night before if that was even possible. He explained that they’d keep checking my vitals and only if they improved would they let me out. They were concerned that if I went home I’d possibly go downhill again and end up back up in the hospital.

Trying to lighten the mood with urine bowls as hats. Being In Hospital Ain’t Easy When You Have Muscular DystrophyThe morning rolled into the afternoon and I kept feeling worse, not better. I was now on antibiotics which were making me feel extremely nauseous. On top of that, I was also running a really high temperature so Allan had to constantly sit and fan me with a urine bowl to keep me cool. The urine bowl had a few proposes that day. 1) to fan me 2) in case I was sick and 3) to wear as a hat to lighten the mood. Win-win.

Muscular Dystrophy & Muscle Fatigue

Having not slept much at all the night before I was now completely exhausted and could barely keep my eyes open. My muscles were feeling weaker, I was sore and uncomfortable. All I wanted to do was sleep. I was desperate for my readings to improve so I could be discharged and go home to my own bed.

Emma's private hospital room. Being In Hospital Ain’t Easy When You Have Muscular DystrophyHours and hours passed and still no solid confirmation if I’d be going home. Then one of the lovely nurses came in for a little chat and to check me over again. She could see how miserable and exhausted I was feeling so she promised I could go home in an hour or so if I stayed the same or improved a little.

My family tried their absolute best to get my temperate down and finally I was given the green light to go home. Allan and Mum continued to care for me at home. What followed from my infection was a long week of feeling horrendous and nauseous 24/7. The infection and antibiotics completely drained me leaving me with very little energy, which, unfortunately, lasted months. Yes, months.

I was concerned about how I was feeling after my infection cleared up so I contacted my amazing Neuromuscular Physiotherapist who is a fountain of knowledge and expert in Muscular Dystrophy. She explained that what I was feeling was the effects of post-infection weakness and that intercurrent illness is one of the biggest causes of secondary fatigue. The fact I had antibiotics meant my good bacteria was attacked leaving my body fighting to build reserves. All I could do was be patient, rest as much as required and continue my good diet to build my strength back up.

One-on-One Care

As much as they may want to, NHS hospital staff can’t provide disabled patients with full one-on-one care to the level we require. I don’t believe they have the time or resources. Sadly, in some cases, it may be that they just can’t be bothered. Had my family not been by my side the whole time I was in the hospital, would the staff have been able to care for me? Would the nurses and doctors have been equipped to look after me? Or would I be left lying for hours and hours unable to move, eat or drink?

There was no sign or mention of any hoist or equipment to get me in/out of bed or to the toilet. Not one single nurse asked if we required help. We were left to get on with. What if I didn’t have any family? What if I wasn’t able to verbally speak up for myself? It leaves me with the question, are hospitals equipped for disabled inpatients?

What Others Have Experienced

I knew I wasn’t the only disabled person to experience this sort of thing in hospital, either as an inpatient or outpatient. So I asked my fellow Muscular Dystrophy Trailblazers to share their experiences and here is what they said.

Vicki, who is also a wheelchair user explains “I have had bad experiences where they will not move me and didn’t have a hoist so my partner would have to be there from 8am – 11pm as they wouldn’t get me out of bed for the toilet etc”.

Kim is always extremely concerned when her daughter who has Muscular Dystrophy is in the hospital because “the skill to look after her is not there and that she’d be at risk. She cannot move herself at all. I stay with her in Paeds and would insist on doing this in adults too, however, our continuing care team cannot come into the hospital and worse still are not paid while she is in, leaving me exhausted at the risk of losing a great team”.

Ally also didn’t have a good experience when admitted for a few days. She explains “I was left in my wheelchair from 9am until 7pm.” The staff eventually found a hoist but the batteries didn’t work. It wasn’t until they found the fourth hoist that it finally worked. They knew very little if not anything about Muscular Dystrophy as they do very rarely see someone with it. Over the 3 days, I was there, I was out of bed for half an hour in a chair. I noticed a huge difference in physical ability when I got home”.

Others shared that they had to sleep in their wheelchairs because the bed was so uncomfortable while others explained that the staff thought they were annoying because they asked to for help to change their position in bed as they couldn’t reach the remote buttons for the profiling bed.

What has your experiences (good or bad) been of NHS hospitals?

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Meet Emma

Hello I’m Emma. 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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9 Responses

  1. Unfortunately this problem is not only with hospitals in the UK. In June my husband landed in hospital in the Netherlands with a uti, same symptoms as you, a few days after visiting the urologist for a bladder procedure. No hoists in the ED, there were hoists on the wards but most nurses didn’t know how to handle them. Neither could they handle the unfamiliar medication. I spent a lot of time in the hospital providing a lot of the necessary care including getting hubby in and out of bed. None of the nurses had a clue how to deal with a prosthetic leg, or a hemiplegic.
    After a day in hospital someone turned up to take hubby for an echo. Nobody had a clue how to move him from his bed. Good thing I was there, although nurses complained I was there outside visiting hours.

  2. Sadly this happens in every hospital…. when my husband had his stroke, after two days being in hospital, we felt we couldn’t leave him alone as it was too dangerous! He was unable to speak and we witnessed senior nursing staff trying to make him eat when he was nil by mouth, taking bloods from him when it should have been from the man in the opposite bed. They forgot to strap him in a chair so he slid to the floor…..I could go on all night. Consequently, I dread him ever having to go in hospital! Although he has SOME speech, he has aphasia, so can’t always find the words even for his own name and that puts him in such a vulnerable position. As for tablets, they NEVER give you what you need on time! As you say Emma, they say you need to stay in then don’t even monitor you, I too believe you get better care at home. I think disabled and old people get the worst deal in hospital. You have to be young and fit to survive it!!!!

  3. Hi Emma. I don’t usually get involved in social media but your story really got to me. You had a terrible time and luckily your family were there to intervene and keep you safe which should not be necessary and anyway many people do not have family to look after them. I have a Spinal Cord Injury. 12 yrs ago I was paralysed from the chest down. Many of the procedures I have had in hospital involve transferring onto a bed and often it is too high, usually just by a couple of inches. This means I can’t transfer safely on my own and having to get a hoist usually takes the nursing staff by surprise. Why?? Many SCI patients going into a general hospital have similar experiences like you did. The nursing staff can be great but don’t have the necessary experience of moving someone with mobility issues, pressure relief, etc. I carry a card in my wallet with my needs if I go into hospital but I could see this being ignored by someone like the arrogant consultant you saw. As someone else has said I could go on about this for hours. The problem is obviously education and training for hospital staff. We can only hope this improves sometime soon. Keep up the good work.

  4. I’m in the US.. but problems in the hospitals here too. The bathrooms in the hospital rooms are often not wheelchair accessible, and the toilet equipment, like bedside commodes, is made for disabled people who can stand (the arms don’t move). They have to search all over for that one commode chair with movable arms that may exist on the rehab floor or orthopedics floor. I have spinal cord injury and often nurses and aides do not understand my bladder management – they offer me a bedpan. Sometimes hard to get in and out of beds that I am not used to. Staff is very busy and sometimes don’t even come around with soap and water so I can wash myself.

  5. Oh I’m sorry to read that you had such a tough time in hospital, it must be awful. But from all the comments it looks as if it something that happens in other countries too. Let’s hope that more people like you share your story and change will happen.

  6. Wow, I had very similar thing happen to me in November – ended up in A&E with ‘massive UTI’ after getting super ill at home and passing out head first onto bathroom floor. I don’t have a disability, but still felt a bit helpless. I couldn’t walk because being up right made me feel faint. Random people occasionally swinging by to ask questions but no one saying much about what was going on. I’ve had some good and bad experiences in NHS hospitals. Some lovely nurses and consultants, and some horrible bullies, or just plain lazy. It’s frightening enough being in hospital when you don’t have a diability, I can only imagine what it must be like if you do. I’m glad you had your family around to help you.

    And congratulations because someone loved this post so much, they added it to the #BlogCrush linky! Feel free to collect your “I’ve been featured” blog badge

  7. I was very fortunate in the care and help I received when my left leg was amputated below the knee. Staff helped me in and out of the wheelchair and assisted in the toilet until I could do it myself. The wound did not heal and so another amputation was made above the knee. The consultant was a little distant but one of the nurses said it was because he was painfully shy. I was in hospital for 3 months and only had a serious falling out with one Auxiliary and one nurse despite the fact I was hallucinating due to some of the drugs I was on and kept moving about and disturbing others for about a week. When the second leg had to come off I got great and treatment with the exception of one Auxiliary which was sorted out by the Nurse in charge.

    Later I got a Urinary infection and was semi conscious when a friend came to visit. A 111 call resulted in a visit from a doctor and a trip to hospital in an Ambulance. Again I was fortunate in the care I got. I do have say that some of the disabled toilets in the hospital were NOT the best designed.

  8. I can relate with this article so much. I was in hospital one time for 6months because of a pressure sore, not once was I given a full body shower, only ever bed baths, my hair was only washed when my sister or mam came in to do it. When I asked could I have a body shower it was always brushed under the carpet or they would tell me they were too busy and they’d do it later. Later never came. I’ve spent nights in hospital ringing the bell or trying to reach the bell for it to be left un answered. Theres no way my parents could stay either as theres no facilities. The hospitals are a joke when it comes to disabled people. They havent a clue about different disabilities.

    1. Hi Sam. Thank you for your comment. It’s great to hear from you. I’m so sorry to read about your awful experiences of staying in hospitals. I hope you don’t have to spend any more time in the hospital and if you do, I hope it is a much better experience for you. Take care and thank you for sharing your story 🙂

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