Hello everyone. Last week I started to tell you about my covid-19 story Today I want to tell you the rest of the story. So if you’re all sitting comfortably I’ll begin……
Ward 8B and my roommates
On leaving ICU I was moved upstairs to the Acute Respiratory Ward. Although off the ventilator, I still needed extra oxygen and this was supplied by a tube that sat just below my nose.
When I first arrived on the ward I was put in a side bay with two other ladies. The first of these was a beautiful old lady. She was 94 years old and had dementia. She was very confused, but every now and again would look over and give me the sweetest little smile and wave.
In the bed opposite me was a slightly younger lady. During the first day I thought this lady was just being chatty, and because I had just found my voice again I was up for a good natter. But it slowly became apparent that she was a little troubled.
For one thing she never stopped talking. If she wasn’t talking to me, or on the phone to her relatives she would talk to herself. Very loudly. This was a bit annoying, but not a big deal in itself. The problem was she was also paranoid and extremely nosey.
I’m sure you’re aware hospital bays are not designed for privacy, but generally you expect people to show others some respect. Not this lady however. I tried facetiming Mr A, but she would listen in to our conversation and try butting in to talk to me. When the doctors did their rounds she would answer their questions to me before I had a chance to open my mouth (for example how long I’d been in the ward or what I’d eaten) . This was despite the curtains being pulled round my bed.
The final straw came when the psycologist who had been assigned to the hospital to help Covid patients came to see me. She pulled the curtain round for privacy, and at my request we communicated in writing to avoid being overheard. However the lady didn’t like not hearing what we were talking about and she began screaming that we were disrespecting her by keeping secrets and talking about her behind her back.
Luckily the psychiatrist stepped up and told the ward staff that it was an intolerable situation and I was moved to a side room.
Learning to walk
Once I moved to the ward the focus of the physio team changed from breathing to walking. During the last few weeks in ICU I had gained a little movement in my legs. I could bend my knees a little and straighten and flex my feet.
The next step was getting me on to my feet and bearing my own weight. Its worth noting this weight was far less than it had been when I entered hospital. I lost over 2 stone while in ICU, although some of this was muscle mass.
To start with I had to practice sitting up at the side of the bed. This sounds like no big deal, but my back muscles hadn’t supported me in 7 weeks and needed retraining. The first time I tried it, I became very dizzy within seconds and without the support of the physios would have fallen off the bed.
After a few days I could sit unaided for a few minutes. The next step was standing with a frame. The physios all commented in how strong I was and said I’d be running around the bed in no time. So on the first time using the Sara Stedy frame as it was called there were expectations.
The frame had a foot plate for you to stand on, and bars to grip so you could steady yourself when standing. I gripped the bars and concentrated on making my legs stand, but even with the physios supporting me and pushing me up nothing happened. I hadn’t expected to be able to stand properly but no movement at all was heartbreaking and I broke down and sobbed. I thought I would never manage it.
The physios however were not going to take these failures to heart and the next day we were back at it. I managed to get my bum off the bed on the second day and by the third I could stand. It is worth noting that the physios visited once a day. The rest of the time it was the nurses and health care assistants (HCAs) who helped me move about.
The nurses were pleased I could use the frame to stand and said it would help me get out of bed and into the chair next to the bed. The advantage of being in the chair was sitting upright helped my lungs expand, improving my breathing.
However the chair was significantly lower than the hospital bed, something they must have been aware of. So when I asked to be helped back into bed later I couldn’t use the frame to stand because my legs were too bent to lift me. They didn’t seem to know what to do about this.
This led to me being stuck in the chair for another hour while various different people came and tried to get me to stand using the same frame. No one seemed to understand that it wasn’t a case of me not trying, I couldn’t do it. And the longer I tried to get my legs to stand the more tired, upset and in the end angry I got. Eventually they had to get a hoist and hoist me out of the chair.
It was a little uncomfortable and very undignified. Further more the incident dented my trust in the staff a little. This may sound dramatic, but when you’re physically at the mercy staff this leaves you feeling very vulnerable.
Once I mastered standing my progress started to stall. I seemed to be doing the same thing every day and this led to the real belief that this was as good as it was going to get. I would remain in hospital unable to walk forever. In reality I was getting stronger, I just couldn’t see it.
After 3 weeks on the ward I was given the news that I was moving again. This time to a community hospital that was more set up for intense physio therapy. At the time they didn’t know which hopsital I would be going to but there are 2 local to us, so I was confident it would be closer to home.
Life at The Dilke
I ended up going to the community hospital in the middle of the forest. My departure from the ward wasn’t met with the applause of last time, but I still shed a few tears (crying as you’ve probably noticed is a constant theme of these posts).
I was taken to The Dilke in an ambalance. Because I was on a trolley and lying down I felt a bit sick by the time I arrived. For some reason this sickness was a constant thing during my stay at this hospital, but I never knew what caused it.
I was taken to a lovely single room. It was by all accounts the best room in the hospital and had a lovely view of the woods beyond. There were an abundance of wildlife to watch out the window, birds and a bunch of very greedy squirrels.
What the room and the hospital as a whole didn’t have was any Internet access. This might not seem like a big deal, but because visiting was still banned, my phone was my only means of communicating with friends and family.
Learning to walk continued at the Dilke. I had the lovliest physio called Laura. She was super bubbly all the time, the type of person that made you want to try even harder to please her. I was soon pottering from my bed to the toilet using a zimmer frame. It was hard work but a significant step in my goal to get home.
I’ve put this section towards the end of the post, but it actually covers all my time in hospital and continues now I’m home.
Anyone that knows me of old will know I love food. I’ve always said it’s my one vice. However during my time in hospital food became my enemy.
My battle with food began before I left ICU. I had a feeding tube inserted when I was in an induced coma, and during the first 4 weeks in hopsital this supplied all my food and fluid requirements. After 4 weeks I was allowed to have sips of water. You have no idea how beautiful ice cold tap water tastes after weeks of no fluid. Gradually this built up to having cups of water and then at my request cups of milk.
Food was first introduced a week later. Ice cream and custard were the first foods I tried, and they went down okay. Litttle did I realise that would be all I would eat pretty much for the next 2 months.
At first I had to eat soft or pureed food because of the risk of choking. I thought initially that my aversion to foods was due to the way pureed dinners looked, but as I was introduced back onto solid foods I still found them unpalatable.
The real problem was one of taste. It is now recognised that covid affects the way food tastes for a lot of people, and this can carry on long after the virus is gone. On top of that having a tracheotomy affects taste as the mouth is dryer than usual. And to complete the hat-trick talking antibiotics like I was can affect a person’s sense of taste too.
So I had a full range of issues that made most foods taste vile and my diet when I left ICU consisted of milk, custard, yoghurt, ice cream and tomato soup.
I had a dietician who visited me weekly to discuss food. She was lovely but had a weird obsession with cooked breakfasts and desperately wanted me to eat them in the morning. This wasn’t going to happen however, and instead I had special high calorie juice drinks on top of food to ensure my food intake was nutritionally complete.
When I moved to the acute respiratory ward and then the community hospital my issues with food became worse. On the ward I had to deal with the sight and smell of other peoples food.
In the community hospital I had the issue of feeling sick all the time and although I was in a single room, it was right opposite the kitchen, so I had the smell of all the different meals drifting into my room.
You may wonder why I’ve made such a thing about the food, but food is a big part of hospital life. Mealtimes marked the passing of the day, and even when I wasn’t eating I was expected to read the next days menu and choose what foods I had to struggle with the next day.
Everyone pressed on me the importance of eating in order to build up my strength and muscle mass in order to get well enough to go home. And I really did want to go home.
By the time I left the Dilke to go home I was able to eat sandwiches and so didn’t have to have the high calorie drinks any more. Since being home my appetite has gradually returned and I can eat most things now. I think this is in part because I have a better choice of the foods I like at home and can eat when I want. Also the effects of covid and the antibiotics on my sense of taste have finally worn off.
The only thing I still don’t like is coffee and Pepsi max, the two drinks I lived on pre covid.
Getting ready to go home
Once I had mastered walking with a frame I dared to ask Laura the question when would I be able to go home. I was expecting her to be quite non committed about it, but to my surprise she said a week, 2 at the most. All I had to do was to come off the oxygen and be able to walk up the stairs.
Coming off the oxygen wasn’t such a big deal. Although I got out of breath quite easily, my years of being an anxious person had actually put me in good stead for this because I’m very use to controlling my breathing through deep breath exercises.
The hardest bit by far was the stairs. The Dilke is for the most part a single story hospital so there were no proper stairs to practice on. Instead Laura had a set of steps set up in the physio room. There were 3 steps and I had to practice going up and down. The first day I did 2 steps with support. The next day 6. My end goal was to be able to walk up 12 steps without any support. This is what I needed to be able to do to get into my flat.
It took me the 2 weeks Laura had anticipated, but eventually I could just about get up the steps 12 times. It wasn’t easy though and I wasn’t at all confident that I would be able to do this easily at home. But Laura assured me that it would only get easier and her assistant pointed out that once at home I could always go up the stairs on my bum if I needed to as no one was going to see or judge.
Once I had crossed off all the tasks on my getting prepared for going home list I just had to wait for the occupational therapist to agree to me going. She did this and we picked a date. It was Saturday the 4th July. Independance day which seemed quite appropriate.
The day finally arrived and I packed my bag and waited patiently for the ambalance to turn up. And I waited, and waited some more. Eventually the nurse phoned the ambalance organisers and were told they didn’t have a suitable ambalance so they weren’t coming. Cue more tears and also a bit of a strop on my part. I asked for a phone to call Mr A and told them I was going home whether they agreed or not. To be fair they were all lovely and totally agreed that I could go. So Mr A came and off I went.
Being in the car was strange. I celebrated this freedom by asking if we could go and visit my mum and dad before we went home. Although mum knew I was going home that day, she hadn’t expected to see me, so there were lots of tears from both of us. After an hour catching up I knew I had to go home and face the stairs. It wasn’t actually as bad as I feared. I did it on my own and didn’t need to resort to shuffling up on my bum.
As I write this post I have been home for just over 5 weeks. I can potter around the flat quite well now, and have even started doing a bit of housework. The stairs are still difficult, but I can and do go out with Mr A at the weekend. I’m still not confident enough to do the stairs without someone being with me.
I can’t walk far outside and don’t like being around people. For this reason my new favourite place outside is my local pubs garden. Its always lovely and quiet, and I can just talk to a few friends in a socially distanced way.
Health wise I don’t know what the future holds. I still get very out of breath if I do too much. I have an appointment with the respiratory clinic next month, so I guess I will get more answers then, but I appreciate this is a learning curve for doctors as well as us survivors.
I still get times, particularly in the evening when Mr A is in bed where negative thoughts creap up on me. I worry about catching the virus again. Sometimes when I’m just about to go to sleep the idea pops into my head that this is all a dream and if I go to sleep I will wake up back in the hospital.
However on the whole life is good. I’m back with the people I love and though I don’t think life will ever be the way it was before, it is still there to be enjoyed and thats what I intend to do.
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