I’m going to attempt to reflect and explain this year most of which I am spending in hospital. I started the new year with Anthony in the Lake District as we stayed over night in a pub in Coniston. Coniston is a place I spend many childhood holidays, it was nice to be able to share this place with him.
Once we got home it was time to start my secondment within Secure services, as their lead OT, I was looking forward to the new challenge and to help imbed a new model of occupational therapy. The first three months were spent getting to grips with the many meetings that appeared in my diary, catch up with the OT staff in supervision, amalgamate the two occupational therapy teams, as well as beginning to refresh staffs understanding of how we were going to deliver OT with this setting moving forward.
Outside of work me and Anthony were busy with sending out our wedding invitations, doing table planning and all the other this you do in preparation for your wedding. We also managed a family holiday to Centre Parks, and celebrated International women’s day at Beamish.**
Then as March came to an end the nation wide pandemic Covid 19 became real, my focus was taken away from the new rehab model and more on how to support the service the patients and my staff to deliver care and hopefully some occupational therapy in a new world of lockdowns, social distancing and PPE. It was stressful to say the lest, Anthony was put on furlough so at least I had him at home full time for support.
Then on Friday 3rd of April whist at work I experienced awful heartburn, that just would not go away. After a few hours I chose to go home and Anthony picked me up as I was in too much pain to drive. The pain continued so after a while we rang 111 but could not get through so we rang an ambulance. As the paramedics, got me on board and I waved bye to Anthony little did I know that would be last time I saw him for months. A and E quickly determined I had Acute pancreatitis, they also swabbed me for Covid and it came back positive.
The next few months are a bit of a blur, I spend some time in the ICU, but was moved wards to my memory 4 times. ( Mum says it was 7 times across 4 wards). It was decided that I needed to move to a specialist hospital an hour away for treatment. I think this happened in May. I remember the Ambulance ride with a male and female paramedic there were nice and reassuring but the journey felt like forever.
One we arrived I went back in to ICU, again I have some memories of this, but its get muddled with dreams and hallucinations from the medication. When I have talked to family and staff about this time more recently. I apparently was on a ventilator on and off the longest of which was four days. I do remember feeling very weak and unable to hold my phone, I was nil by month by this point and had a feeding tube , urinary and Rectal catheters in place.
I could hardly move, my voice was strained and difficult hear due to having tubes down my throat when unconscious. My dreams felt real and even when conscious I still believed that things like being kidnap, and having a swimming pool on the roof of the hospital were true.
During this time I saw the physio daily and had in put from a dietician and speech and language therapist. It was all hard work, I felt looked after but dearly missed my family and friends, I tried video and phone calling a few times but I was so weak and my voice so quite the effort was exhausting. I had countless get well cards arrive, which were pinned to my wall along with pictures of family and friends I felt very blessed and loved.
Eventually I was allowed to have my mum visit, I was very low in mood and mainly remember crying a lot and feeling helpless and even at times wished I did not wake from sleep. At this time I started to see a psychologist weekly. Shortly after Anthony and my dad were able to visit, only one visitor per day.
Once stable I was moved to another ward to await surgery for my pancreatitis. That first night on the new ward was terrifying I was in my own room right at the bottom of the ward, I wasn’t used to being alone, as I’d always had a staff member with me in ICU. I remember crying out most of the night. From here my health deteriorated and I when back and forth from the ward to ICU, the second time I also had the operation on my pancreatitis. Which left a hole and bag attached to the right side of my stomach , to catch the really smelly substance coming out.
I had countless trips for CT scans, and X-rays, taken down on my hospital bed I got to know a few of the porters well. CT scans were a little scary especially as I need pink dye injected in to me so they could have a clear view in the scan, this could only be done by a Dr and I often had a junior, who was inexperienced in this procedure, and was often more nervous then me, which did not help with my nerves, but by this point I was beyond caring and often had to tolerate long sessions as staff trying to get blood from me or to insert a line. The pain became bearable.
At some point during all of this I met and began to engage with Occupational Therapy (OT) staff. Some times joint working with the physio’s. Firstly it was lots of simple exercises to get my muscles moving again, then some sitting on the edge of the bed and out in a chair which I needed hosting for. The OT’s focused on some self care, getting me to attempt tobrush my own teeth and hair as well as wash my face.
Oh my hair, over time I was losing hair mainly at the sides, unfortunately my long hair got all knotted and staff were unable to brush it out, so it was cut off and I was practically bald.
I continued to work with the speech and language therapist (SALT), we made attempts to swallow, tea spoons of water, but I was unable to do this successfully for a long time, once a week the SALT would treat me to a facial and mask, I very much looked forward to these times. My swallow continued to be a problem, and I was unable to drink anything for months, I dreamt of drinking lemonade. I need to have an X-ray of my swallow live, however I needed to be able to tolerate sitting upright in a wheelchair for this.
Here’s where a great AHP collaboration took places, the SALT planned the time a place for the X-ray, the physio’s concentrated on building up my core strength. The OT’s located a suitable wheelchair that would fit in the X-ray machine and be wide enough for me to be comfortable, we also practiced hosting in to this chair.
Then the day finally came, my whole AHP team accompanied me down for the X-ray. As I attempted to swallow a small bit of stale cake, the SALT held back her tears, I had a perfect swallow, one of the best in Newcastle I was told. All the staff were emotional they had invested a lot of time and effort in me.
I was able to eat and drink again the first time in over 5 months. This suddenly become terrifying, as all I could recall was the reasons why I was nil by month for so long, the fear of chocking became my constant fear. I remember crying a lots as I couldn’t face eating, I felt like I was letting people down. But slowly with help from AHPs and ward staff I became to eat small amounts and increase my confidence to eat alone.
I had a terrible time with all the tubes attached to me. The feeding tube would often come out of my nose and getting in pushed back in was horrible, then one day I suddenly had a bad taste in the back of my throat and I was unable to catch my breath, pressing my nursing bell hoping they would come quick, which they did they pull the tube out much to my relief. After some navigation with the dietician and medical staff it was agreed that I could take protein drinks and not have the tube reinserted. This was music to my ears. The rectal Cather had been removed at some point before this, and the unpleasant but necessary routine of nursing staff cleaning me began. My urinal Cather was always playing up and I needed in replacing often, one day I was in so much pain I was screaming out the Cather was removed and I leant to control my bladder again, mainly using a bed pan as waiting to be hoisted on to a commode took to long.
So let’s talk about these Physio therapists often given the nickname physio terrorists, They work you hard and it often hurts,
Some of the equipment can also look like torture implements, however I think they are more in to bondage. They are always strapping me in or on things. I started to use the turn table which when it first arrived looks like an electric chair. It lays you flat and your strapped in, it’s then tilled slowly to an upright position, it’s aim is for your body to get use to weight-bearing. The pain in my legs was difficult to manage I was often in tears even before being strapped in. But the physio were great at keeping me calm and we often listen to music during the
As the months went by so did some mile stones my hendo that didn’t happen, my birthday in July, again I was inundated with cards and best wishes. Then September 12th which should have been our wedding. We had made the decision to postpone a few months back but as we got closed to the date I found myself getting lower in mood, felling like I just wanted to be left alone. Anthony made the day special he came to visit dress in a suit, brought me plastic flowers (your not allowed real ones ). For my birthday friends and family contributed to a video of well wishes, my niece stole the show at the end by singing happy birthday and telling me she loved me. Anthony’s sister had arranged a video of messages for us both to watch. They were lovely and made us laugh and cry. I will treasure these videos forever.
I missed countless friends and family’s birthdays and feel guilty I didn’t even send a card. My niece turned 3 in October, although once I was able we FaceTimed several times a week, she had grown up so much and I missed her dearly. As I was now able to tolerate sitting in the wheelchair we organised an out door visit, with Lyra my brother and sister in law as I came down in the lift and was push towards them. Lyra beamed running towards me. She complemented my hair and said she like the shiny wheelchair. She spent the visit running up and down a little path that was filled with benches she counted them as she when. Visits always lift my sprites but this one was extra special.
The occupational therapy continued we had aims about dress in night wear and then my own clothes, to work on my fatigue, and most recently have attempted showering, with Hilarious results. It was lovely to feel really clean, something a bed bath doesn’t quite reach, both the OT’s who assisted me got almost as wet as I did. Other sessions included working on fine and gross motor skills by playing games. We also would venture off the ward in my chair to the hospital cafe. I have really enjoyed working with the OT’s there has been banter, collaboration and mutual respect. Not forgetting the dancing and singing. I was a refreshing change for the OT I received in the past.
As I post this at the beginning of November we have just gone in to the countries second lockdown, which will for me impact on visitors. However this time as least I have the strength to phone and FaceTime. I’m beginning to connect with friends and family a lot more using technology and social media, I have joined in quizzes with my friends, and joined in an OTalk***session.
I got some news this week the rehab centre that assessed me on Monday do not think I am currently suitable. So I will remind to focus on rehab here. I have build up good relationships with the nursing staff, they help me daily with a wash, getting dressed and toileting ( when I’m more independent I will miss having company whilst I use the loo). They pop in when they have time for a chat, but mainly I think they want to stroke the fake but breathing cat my mum brought in, or to try and win the marble solitaire I have.
I still have a way to go, before I get home and them back to work and normality, whatever that is these days.
Thank you for reading.
*’Skip to the end’ is a song suggested by my sister in law as a title for this blog it is by my favourite band the Futureheads.
Beamish.** is a world famous open air museum, telling the story of life in North East England during the 1820s, 1900s, 1940s and 1950s.
***OTalk is a weekly twitter chat about everything occupational therapy related that myself and 6 other occupational therapist organise. https://otalk.co.uk/about-2/