Recovery

Will we ever get to skip to the end*?

Its Wednesday 10th February 2021, I have just finished my 14 days of isolation due to a false positive Covid swob and subsequently being exposed.

It’s not been all that bad, I have done a lot of colouring in, watched all episodes of Hustle and I’m half way though Dexter. So when I get out I’m either going to con people or murder them, only people that deserve it of course, you have to follow the code or it all goes a bit wrong.

An example of one of my pictures , all can be viewed on my Instagram search @ot_rach

I’ve had daily FaceTimes with Lyra (niece) who currently loved Friends, her favourite character is Joey, and she loves to get Alexa to play the theme song and dance around in circles wiggling her bum.

Because I’m so close to home, I get regular deliveries of crisps, chocolate, drinks and even a few takeaways. Sunday Anthony brought me in a Sunday dinner from the Chairman and Bedford Street, it was delicious.

One of the nurses told me about a blog written by a Dr that works in critical care, I have spent some time reading these, they are informative and worth a read. https://www.nomoresurgeons.com

I also had a visit from one of the hospital, chaplains.  It was honestly one of the most interesting conversations I have had in a long while, when you met someone new for the first time you find lots to talk about.  She has lead a very interring life,  its her story to tell not mine, but the highlights include entering a nunnery at 19 and leaving as she fell in love with a priest, they married as soon as they left, he converted to church of England, she got a job as a hospital chaplain, and is in training to become a church of England priest.  We also talked about everything she missed whilst in the nunnery, basically most of the 90’s and 00’s, she didn’t know who the spice girls were.  I said mind you I doubt my mother could name them all, and when I texted her she could not.  

I was also sent a dairy that nursers kept whilst I was in ICU, which sparked the idea for this blog, It only has a few entry’s from 20th April – 2nd May.  Some from James Cook hospital and the rest at the Freeman.  It’s pretty mundane, a little upsetting but in a way comforting to.  Each day the nurse would write who they were, and what I had done that day, some days I was out of it, others, Physio’s visited  and I sat on the edge of the bed. In the last entry a nurse wrote ‘you are doing all the breathing yourself I can hear your beautiful voice’. Another nurse wrote about things that were happing in the news like the day Boris had a baby boy. I liked hearing about things I missed.  

Yesterday I went through my partners instagram,  it was nice to see him keeping well and engaging in some of he’s favourite occupations. Some of my #Otalk* friends sent him some lego to build, he appeared to do some cycling in the garage, and photos for daily exercise walks. I love his photos,  but that is he job after all. 

During my time is isolation physio and OT did come to see me, we mainly practised standing with the walking frame, sometimes this felt easy, somethings it felt like the hardest thing in the world.  Today in-order to transfer to the rehab ward so I can finely start my rehab, to learn how to walk again, get home and back to work. I was able to stand with a rota stand, so no more scrapes tiring me in to things instead I have to support myself as the stand aid in turn for me. It’s a great step forward,  I’m proud of myself.  

I’m now in a bay with 5 other women,  this a first for me,  well in the early days I was moved around wards a lot, and was in some bays then,  but I was very unwell and have little memory of this.  Other than one lady that spend the whole day on her phone,  she relay the same information over and over again ,  it was a little irritating to say the least.  All the ladies in this bay seem friendly,  two are a little confused but don’t mind that, I’m used to working with people like that,  and the lady next to me is over 100 years old.  

I’m egger to get started with some intense rehab,  so follow my twitter feed for regular updates o how’s it going.  

Hopefully by the time I write the next blog we will have skipped to the end and seen if it was all worth going through with. 

Thanks again for reading and do comment below, it nice to hear from people and have something new to look at.

*’Skip to the end’ is a song suggested by my sister in law as a title for these blog it is by my favourite band the Futureheads. 

**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/

Recovery

We still can’t skip to the end.

I thought it was about time I posted an update, in many ways a lot has happened since my last post in November, but in other ways nothing has happened at all. 

I can’t quite remember when but I think it was in December, I was feeling unwell, it turn out I had Kidney stones, so I had some further surgery. After a few days I felt normal again.

Christmas was difficult,  but I did get to spend it with Anthony, we opened gifts, did a zoom call with family, and went for a walk in the park over the road.  New Year’s Eve I wrote and hosted a 2020 quiz on zoom with friends and family, it was nice to see in the new year with people, even if it was virtual.  

I continued to have visits from, Anthony, mum, Dad, Linda and some times my niece Lyra,  we would meet in the chapel as we were often left alone.  I also had a visit from some good friends and their two kids, one of which I had not had the pleasure of meeting yet,  he looked so much like his dad, and was climbing up everything.  

Once the new year came in some new hope glimmered, conversations, assessments and decisions were still being made about rehab options, we had to  get NHS England and my local MP involved.  At one point there was hope I might get a placement at a private place with a swimming pool but the funding never came.  I was literally talking with Anthony about setting up a Gofund me page for this place, when the news came of a bed at a rehab ward back at James Cook University Hospital.  

Meanwhile I had been working with the physio’s, on standing and even walking with the aid of an Arjo. The video I posted of me making 50 steps went just a little bit viral on twitter.  It was hard, painful but felt good. I just wanted to do more, but the wait for someone to say yes to a rehab bed was disheartening.   

So I was on the move or was I?  A transport Ambulance  was booked for the Wednesday 27th January,  that gave me time to write out the thank-you cards, and organising getting a small token of my appreciation for all the teams involved.   It was a little emotional saying good bye to all these people that had invested in me.  

As the ambulance arrived, I was waved off with nursing staff clapping as I was  push down the ever familiar ward corridor. Coming down in the lift I reflected on all that this journey had tested me with.  Wondering what the new wards challenges would be. As we approached the ambulance I knew my wheelchair would be too wide for the ramp,  and guess what it was, so it was back to ward six whilst they came up with plan B.  I spend sometime in the dayroom until Ambulance number two arrived. This time I was put on a stretcher, it was uncomfortable, but thankfully the road trip back to Boro didn’t take to long.  I enjoyed seeing the industrial sites again. 

Middlesbrough gets a bad rep,  but it’s a good town, with great people, however I know the towns shopping centres will be struggling even more because of the current pandemic.   Note to self try more to support local business that are doing everything to try and make it though this climate. 

We arrived at the place this whole sager started, 10 months later.  One of the down falls of the transfer here is that they are not allowing visitors at all,  unlike the freeman.  However I was hoping to be busy with rehab during the day, meaning I didn’t miss those pressures visits as much.  Once on the ward I was sleeted in my bed and was introduced to the three other ladies in my bay.  I had the obligatory Covid swob, some food then settled down to watch television on my laptop, hooking up to the Wifi was easy however the only website that would play anything was ITV hub.  This was going to be challenging. 

I’m not sure what time I finally got to sleep,  but about 4.30am I was woken by Ursula my nurse, the swob had tested positive, so I had to be moved to another ward.  To say my heart sank would be an understatement.  This meant even longer in hospital, possibly going back to square one, feeling unwell and ending up in intensive care yet again.  I cried.  

The new ward had four elderly ladies in the bay,  one of which screamed anytime a person touched her,  it safe to say I got little sleep.  But I was feeling well, no symptoms what so ever.  A further swob was done.  They are fairly unpleasant, but a necessary task.  

This test came back negative, so I was moved yet again in to a side room, not back to the rehab ward has I had now been exposed to covid. The new room was small but comfortable,  however it was right next to the nursing station so at shift change it could get pretty noisy.    So thats it I’m here in isolation, waiting to go back to Rehab.  I’m board, have little to do, little options of what to watch, and can’t even get off the ward with a visitor.  2021 is shaping up to be pretty much the same as last year.  

Thanks for reading and please, pray for me or wish me luck, I’ll take anything at this point. 

PS my hair is growing back nicely.

Recovery

If I could cheat, I would skip to the end, And decide if it’s worth going through with’ (skip to the end – the Futureheads*)

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/

Broken Leg, Recovery

Loving the ‘dead leg’ again

I was recently listening to a woman’s hour podcast, in which the photographer and author Laura Dodsworth was being interviewed along with some of the models from her most recent book. Manhood the bare reality.  The book focused on one to one interviews with men and how they felt about their body along side a photo of their penis.  This is the second book in the series, in 2015 Laura published Bare Reality 100 woman — their breast theirs stories.

When I got home I ordered both books, as I flicked though them both (I have to confess I have not read them cover to cover.) There was plenty of interviews from cancer survivors or how changing the function like having a child and needing to breast feed changed the persons view of their bodies.  I came across one interview with a man who as spina bifida, he stated his impairment disables him when he interacts with society and states sexuality is more complex when you are disabled.  I began to reflect on how I feel about my ‘disabled’ body and in particular that leg, the right one the one that causes me all that pain.

Over the years I have explored how I feel about my leg, within poetry and a few years ago for an art exhibition at work.  I took a series of photos of my feet in various situations to reflect how different they looked and how I managed different occupations.  For this blog I have decided to revisit this idea.  As a child I used to refer to it as the ‘dead leg,’  but do I need to readdress my relationship with my leg and embrace it?

Its swollen, bruised, scarred, I don’t have an ankle,  it looks and feels odd,  its on my mind all the time as every movement I make is a painful reminder its still there.

Some days it tells be to stay in bed, other days I ignore it and carry on regardless,  but every now and again it catches me out,  with a good pain free day or a day of tears and feeling sorry for myself.

  • I hate that in makes me wear flat sensible shoes that don’t go with the outfits I would like to wear,
  • I hate that it sometimes stops me from doing the things I want to, need to or that I am required to do.
  • I hate that I have to rely on others, during this time.
  • I hate having to justify myself to health professionals as I go to yet another appointment that does not solved my problem.
  • I hate that people give me advise all the time as if you have not researched it and tried everything yourself.
  • Most of all I hate how it dominates my thoughts I feel the need to talk about it all the time —  it must be so boring for others.

But these are bad days and there not everyday.

  • I love planning out my day in detail to minimise the amount of walking,
  • I love a duvet day,
  • I love the unique insight into the world it gives me in particular how I look at each new environment, to work out how can I do this.
  • I love the comforting conversations its allowed me to have with others,
  • I love how it has brought me closer to friends and family,
  • I love how it forces me to think differently, and creatively,
  • And I confess I love the opportunities it gives me to talk about myself.

I’m not ashamed of my body the leg or any part,  it is what it is.  These series of photographs help me love the leg again.