Blog

Disability, Occupational Therapy

My take on engaging in the occupation of laughing my head off at the Edinburgh Fringe Festival.  

For those of you unfamiliar with my blog, I’m an occupational therapist, as an occupational therapist I’m interested in how we engage in everyday occupations,  by occupations we mean everything you need to, want to or have to do, from waking up to going back to sleep again. 

I often reflect in these blogs on how my disability, dyslexia and/or my environment, impacts on how I do the things I need, want and have to do. 

I came to the festival with my partner Anthony,  it was a last minute decision, which is not like me at all.  I love to plan,  it makes me feel secure,  but I was intrigued after listening to the Standard Issue podcast, interviewing women that would be preforming here.  We already had plans for a family holiday to the Isle of Arran, so decided, to set off a day early and go via the festival.  

Getting round Edinburgh itself was a bit of a nightmare. It has cobbled streets  and  lots of hills,  but with some online research, a few tweets and emails to venues clarifying things and the use of google maps to work out distances we would need to walk,  it was manageable.  Without modern technology the occupation of planning would have been impossible, and that would have put me off coming.  (I’m great at avoiding what I don’t understand, can’t figure out for myself, or feel too stupid or uncomfortable to ask about). 

On a whole I felt the festival caters well for those with access needs. Although I found the web site overwhelming and difficult to navigate, when I spoke to a human on the phone,  they were so helpful, explaining how accessible venues were. 

Once we got to the festival we were impressed by staff attitudes. They went out of their way to accommodate my needs,  providing chairs whist queuing, and making sure I had seats in the venues that were comfortable and with room to stretch my leg out. This was honestly refreshing, and not my usual experience.  

So what did we ‘do’? The anxiety that drives me, created a schedule, which I’m pleased to report we stuck to. 

We got up and left the house at ridiculous o’clock in the morning making the 3 hour drive  and arriving just after 10am (a few mins later than planned) at the Grayson Perry exhibition : Julie Cope’s Grand Tour.  Now when booking this my dyslexic brain was confused by the title, and the fact that the website said it started at 10am.  Was there going to be a grand tour? Did we need to be there at 10 or would it be like a normal art exhibition and you just rocked up and went in? A few tweets clarify that it was not a tour, and that we could come between 10am and 5pm.  I still felt the needs for us to be there for 10am as my brain worries I might have misunderstood.  (I’m a worrier) 

The exhibition of beautiful tapestries displayed the life of a character named Julie Cope.  There was lots of written narrative to go along with each piece, but if I’m honest I only pretended to read it – you know to look intellectual.  Instead I chose to make up my own narrative from each tapestry.  The vibrancy, and attention to detail was breath-taking.  

For me Julie was full of potential but the social constraints that are put on women, including what they are expected to do, meant at times she found it hard to muster the energy to fight but at other times she found the strength to strive and do the exciting things like travel. 

As I write this blog I highlight the words ‘Julie Cope’s’, to get Siri to read them to check the word reads Cope’s rather than Coope’s.  I now think perhaps by giving Julie this surname,  Grayson was making a points about a women’s role in society, are we just expected to cope?  Or is it a strength of women kind,  we have learnt to cope? (The occupation of coping, existing and living are perhaps ideas to explore another time) 

As an occupational therapist I often use engagement in the arts as my assessment and or treatment,  the process of how someone does something (the doing part) is the interesting part.  I have watched a number of Grayson Perry documentaries, he also appears interested in the process of making art,  maybe that’s why I find his work so intriguing, as it somehow comes through in the finished product. 

We then took a break from the festival and caught up my good friend, fellow member of the  OTalk* team Kelly and her 11 month old,  Isla, for lunch.

Our first comedy act was Laura Lexx: with her show Knee Jerk. We thoroughly enjoyed her energy on stage, she reflected on her own experience of cognitive behavioural therapy (CBT) and how it had helped her to break down and understand her anxieties, with sharp observations and hilarious consequences.

One of the ideas she explored was how as young children we are taught how important we are, simply by the sports they are encouraged to play,  boys are given the universal recognisable game of football, that has a few simple rules, and can lead to a career of wealth and fame. Where as girls are taught the game of netball, which has more complex rules that restrict your movement around the court, and can lead to not being as valued as a sports person, and mostly likely only ever a part time low waged career. 

Next up was Sofie Hagen: with her show The Bumswing, a thoughtful and astutely written piece of stand up,  she talked about how the British and Danish cultures differ,  particularly when it comes to communicating with each other. She explores her memories and tenancy to remember only the things she wants to believe, told some funny anecdotes,  of growing up with false memories that shaped her future.   What I loved the most was she really challenged the audience at times, making some excellent points about positive body image. 

We finished the night off with the amazing Rosie Jones and her show Backward. She literally took us on an emotional rollercoaster.  

She had the room filled with laughter, as she explored her lived experience, of being a disabled gay woman in comedy.  Until a poignant moment, where it all went dark, as Rosie detailed a story of reading a text message over the shoulder of a stranger, that described Rosie with words so derogative that I can’t quite bring myself to repeat them here,  I was in tears. 

She made some excellent points about being prejudged on her ability. Then brought the room back to laughter again, with her sharp wit. 

Rosie is everything a disabled woman is not allowed to be, clever, witty, rude and lewd,  definitely not an ‘inspiration’ but a fucking genius (and the daddy) I can’t recommend her enough you owe it to humanity to see this woman’s standup.    

What stood out for me as I watched and listen to these three women was how they all touched on occupational deprivation** 

That it was the attitudes of others, not their mental health problems or disability or bring a women, that created the barriers to engaging in the occupations they wanted. 

How we and others perceive us will  impact on what occupations we choose to engage in. Like for me growing up being a child with a disability,  at school they struggled to accommodate my needs and often I was left out of playing sports; you know in case they broke me. 

We both had the most amazing day and will definitely be coming again. Thank you Edinburgh Fringe Festival, for ensuring my engagement is this occupation was not a deprived one.

*OTalk is a weekly twitter chat about everything occupational therapy related that Kelly myself and 5 other occupational therapist organise. https://otalk.co.uk/about-2/

**Occupational deprivation is a relatively new term which describes a state in which people are precluded from opportunities to engage in occupations of meaning due to factors outside their control.

FBFBB354-D066-4153-B138-4E25DF0C4E38.JPG

Politics

Brexit – despite the chaos we should still have compassion for others.

I voted remain in the referendum in 2017 and still feel the same.  I believe that immigration is both important and crucial,  to ensuring we grow as a country.

I understand that the European Parliament is not perfect,  but I believe it is better to be part of something,  that will  always effect us as a country and to influence it from the inside rather than powerlessly watch from the sidelines.   

I’m also passionate,  about human and women’s rights,  most of which are European laws,  and fear that the progress we have made will be lost,  in the transference of laws from the EU to the UK. 

I was pleased that the Scottish referendum voted to remain part of the UK,  and understand their frustrations and fears for Scotland’s future as they are being drag along in something,  their people did not vote for.

I’m also highly aware that the North (the place I live and love) voted overwhelmingly to leave,  I heard others say,  ‘they were sick of not being heard,  being ignored’ by what is seen to be a power centric London,  This may well be true,  but everyday,  I see compassion, kindness a willingness to develop, learn and a want to not to be forgotten or left behind, within this Northern population.  

I grew up in the 80s and 90s and remember daily news reports of Ireland’s troubles,  even being in a bomb scare myself once when visiting the national Science museum in London.  I fear that the good Friday agreement might be jeopardised, by a border, a backstop or a even just a pure lack of memory and understanding of Ireland’s history.  

Since my teens I have had an interest in politics.   I have never claimed to be an expert, but fundamentally I’m lead by a sense of human compassion, and ensuring that everyone regardless of faith, creed, race, gender, sexual orientation,  ability and class gets a fair chance in this world.   

Whether that’s through education, health, work, pay, or a safe place to live. But after 2 years of this brexit mess,  and after watching and being both fustrated and confused  by the amendments parliament have voted on this week. 

I’m beginning to think that parliament as a whole is old fashioned and out of step with modern times,  and the whole syteme needs revisiting to truly reflect and respect its Constituents.  I have no idea and little faith that this will happen.   But as MP’s across all party’s continue to play power and mind games with each other,  the people have lost  interest and patience.  History shows us,  when people feel  betrayed and not listen to,  their only option left is disruption!!!  

Which is something we really don’t need.   

I urge anyone that reads this post,  to only treat every person they come across, no matter how they voted in the last referendum with respect and compassion.   Let’s show parliament we can act like grownups and demonstrate that tolerance, kindness and a push towards equality is truly a representation of what it is to be British, and in turn European.  

Feminist Themed

When you know you know –  So we made rings.

fullsizeoutput_47c3Regular readers will know that in the last couple of years,  this blog has focused less on

Occupational
Therapy a more on my recovery journey after breaking my hemi leg.

This experience has change me in so many ways,  One of which was to begin to concentrate on me a little more and in my last blog post, I talked about how I had met someone, that I now planned to spend the rest of my life with.

I honestly never thought I would meet someone (sick buckets at the ready), that understands me, challenges me,  loves me faults and all, with such honesty, passion and  consideration.

Being in a committed relationship takes work and compromise.   (I’m still learning)  Marriage has never felt important and if I’m honest, I always saw it as a way to control women,  marriage is still full of traditions and expectations of which as a feminist make me feel very uncomfortable.

The idea that the man asks the woman’s father for permission,  then is expected to propose buying an expensive ring that the woman then wears as if she is now owned,  than thats the mans job over and the woman is expected to take over,  plan the day and look amazing in a white dress, feels so very odd.   But for Anthony as a Catholic and from a loving family where marriage is respected and worked on.  Showing the world that you are committed to this person is an act of love and respect.

It’s the social pressures and expectations that are the things about marriage on reflection I have an issue with, and when Anthony says I’ve been googling how to have a feminist  wedding,  you know you have landed with a good one.

We have talked at length about our hopes, wishes and desires,  we both want the same things,  and I’m now in a position,  where I feel comfortable with the idea of marriage,  as long as it’s done our way, and for us.

So I would like to say that today was an exciting day.   We recently made a joint decision to get engaged and eventually get married.  Today we attended a workshop and made each other rings to mark this joint decision, and a celebration of our future plans together.

We could not be happier.

852611F1-A4CB-4384-8143-1D310B970EC1

Broken Leg, Disability

Broken Leg Part 4- Two Years on All Change. 

20th December 2015 will be a date I’ll remember for the rest of my life. Two years on I’m now at the stage, where I can reflect objectively on the experiences.  Those of you that are regular readers on my blog will know this is my 5th post on the subject.

https://otrach.com/2016/01/05/from-the-other-side-what-i-have-learnt-part-1-the-break-and-wait/

https://otrach.com/2016/03/31/the-broken-leg-part-2-what-does-independent-really-mean-do-prescriptions-differ/

https://otrach.com/2016/07/02/the-broken-leg-part-3-six-months-on-and-getting-back-to-work/

https://otrach.com/2017/06/29/loving-the-dead-leg-again/

My thoughts and feelings about the experiences have fluctuated, often due to the treatment I received when I initially broke the leg,  and the on going pain I have been in, but I’m also thankful for the experience.  It has made me re evaluate, what I want from life.  Two years on I’m in a better place than I was even before I fell down those pesky stairs.

Following on from the last blog — loving the dead leg again,  where I talked a lot about the pain I was in on a daily basis, I have had a further operation which removed scar tissue from my ankle.   This has made a difference,  I still have pain,  but there are some days where I’m pain free, and I can walk a little longer and tolerate standing up in the morning meeting at work.  Pain will always be a part of my life, I’m struggling to remember what my pain was like before, so I can’t really compare it.  But my weekends are no longer waisted resting in bed,  I have enough energy to do something.  Those that know me well will know during the worst times I would just say I want the leg chopping off,  and joked about chain saws, and what sort of blade I wanted to replace my leg.

I have a lot of people to thank, my family, friends readers of this blog who have often sent messages of support, and of course the OTalk* girls who have all been a consistent support.  I know I have not always been easy to get on with, at times shutting people out.

In my revaluation I looked at want I wanted from life,  and what I had already achieved and had.  The career I love, a home, close friends and family,  but no one to share this with.  With the support of The Otalk girls I ventured into the world of online dating,  something I would advocate, if you have ever thought about it,  it’s an odd world and you need to be careful.  I had some weird conversations and dates,  which created much amusement within the Otalk WhatsApp group.

Five months again I found someone very special,  who shares my hopes and dreams. He is caring, supportive and has quickly become a firm fixture in my life.

So without falling down the stairs I don’t think I would be in the place I am right now.  I hope to draw a line under this experience and move on to a new chapter.  I have recently become an Auntie for the first time and although I have fears about how my physical health impacts on my ability to help care for her, I’m learning every day.

If I have learnt anything its that Life is good – live it, you can always work around the barriers life throws at you.

Thank you for reading, Merry Christmas and Happy new year.

*OTalk is a weekly twitter chat planned and organised by myself and 6 other occupational therapist across the UK and Ireland. 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.

 

Blog Post, Occupational Therapy

My take on the Royal College of Occupational Therapists conference June 19th -20th 2017

IMG_6854What a fun, productive, motivating, challenging and tiring two days that was.

I try to draw out the positives in everything but today’s blog will start with a few negative points.

This was the first year, the now “Royal” college of occupational therapists held its conference in the IIC in Birmingham,  the venue is bright and modern, however the layout is confusing,  all areas are accessible but often using a lift rather than the stairs meant a longer walk,  which made getting to workshops within a timely manner difficult.  There was no pre booking for sessions before conference.  Many people were turned away, and often because of the distances and layout of the building,  you did not have time to get to another session. – My feed back to RCOT will highlight these two issues heavily.

This years conference sponsors also brought some controversy.  Capita, a company which carries out Personal Independence Payments assessments on behalf of the Department for Work and Pensions.  Capita recently placed an advert in OT news which has upset some occupational therapists as it has used the tag line ‘This is what you trained for’.  Before and during the conference occupational therapists and those who have had experiences of PIP assessments have been using twitter and the hash tag #NotWhatITrainedFor, to express their disappointment with Capita’s association with the royal college.

Personally this relationship sits uncomfortably with me,  As a person with a disability still in receipt of DLA awaiting my letter for a PIP assessment,  but also as a occupational therapist who has worked with many people that have had poor experiences of the PIP assessment, which has caused unnecessary stress, and feelings of low self worth.  As Occupational Therapists we are best placed to assess how a persons disability/ mental health problem or learning disability impacts on the persons ability to function, and what level of support is required to live a life that is meaningful to that individual, but I don’t believe the PIP assessment system, uses evidence based occupation focused assessments to determined its out comes.  As Occupational Therapists we must advocate for those we work with,  in my experiences working with those with mental health problems this assessment has only added stress and worry and in some cases severe mental distress leading to a relapse and readmission to hospital rather them giving support.

I feel strongly as a profession and professional body we should be advocating for those we work with to ensure fairness. A slight word of warning tho,  I am concerned that some of what I have seen on social media condemning this relationship has become personal, towards those Occupational therapists that are employed by Capita.  Let’s learn from the recent general election campaigns,  and take a leaf out of Jeremy Corbyn’s book.  I encourage a constructive an open dialogue with the Royal College of occupational therapists about this issue.  But please I ask let’s not run a negative campaign that focuses on personal attacks.  This just distracts from the issue.

This year I funded myself which gave me the freedom to attend sessions and workshops that interested me and were not just purely work related.

The opening plenary – The first Keynote speaker was Paul McGee I’m guessing a professional motivational speaker, he is also known as the SUMO Guy. ‘Shut up and move on’ he told some funny stories and encouraged us to look for open doors, but in my opinion did not bring anything to the conference.   The second Plenary Speaker was Dr Winnie Dunn from the University of Kansas, she is  internationally known as an expert in the field of sensory processing in everyday life.  As a novice in sensory processing – this gave me a foundation in this theory.  She  emphasised not using sensory assessments to label clients based on their scores, and explained that every one has a sensory profile.  –  this is an area I know I need to learn more about.  – perhaps a challenge for this year.

Session 3 Education – Teresa Rushton from Coventry University – Understanding the experiences of occupational therapy students with additional support requirements, whilst studying BSc (Hons) in occupational therapy,  this was a small study with Occupational therapy students and their experiences whilst on placement.   Although its important to research and understand the experiences of students in this manner I found myself feeling disappointed that it focused on the negative experiences. It saddens me that 11 years on from qualifying, students and educators are still finding making reasonable adjustments for someone who needs it a challenge.  When will the profession recognised that those with disabilities have so much to offer?

FullSizeRender 2

Session 24 – Introducing RCOT’s new career development Framework:  – this framework has nine levels of skills covering clinical, educational, research, or managerial roles.   The aim is to cover all possible kinds of careers in occupational therapy. This is a great resource one I need to spend some time mapping myself against. If your using this tool please let RCOT know what you think on twitter using the hashtag #RCOTCareerFramework.

Professor Diane Cox gave the Casson memorial lecture this year ‘Life as an occupational being’. She gave an overview of occupational therapy its origins and meaning, reminding us of the importance of occupation  “Occupation is as old as humanity” (Reed et al, 2012) and from Brock (1934): “Occupation is not a secondary matter. It is a primary need of an individual’s life”.  So we must keep occupation central in our practice and research. I was struck with a quote she shared from Elisabeth Casson in 1941- ‘rehabilitation needs serious attention at present’, does this quote still stand today?   Diane went on to explain although occupational therapy has been voted as the least likely job to be taken over by Robot’s, on the surface it can be seen as simple, she urged us to combat this common misconception by getting work and research then  Published Published Published!! If you would like to read more about this lecture please see the Otalk blog here.

IMG_6796One of the sessions I was most looking forward to attending was session 63 – Occupational Therapy – a feminist profession? – Heather Davidson from the University of Salford, explained there is very little written on this subject.  We explored the links between occupational therapy and feminism, that it was a movement started by women, to empower people.  However is it still seen as a white middle class profession for young ladies?  Some of the debate and conversation within the workshop turn to men in the profession and how they might feel in the minority –  which as a feminist I found frustrating.

 

Something else new this year and that I was looking forward to, was the occupation stations – these were hands on workshops exploring occupations like bird watching, crochet, bead making and origami. These were very popular sessions and unfortunately I could not get in to one,  however from twitter and chatting with those that did attend, they were excellent sessions – lets not forget our roots of doing things with people.

IMG_6861

Dr Jennifer Creek gave the closing plenary the empire strikes back ; learning from the practise of Occupational Therapists working in the margins, she as always was thought provoking  and challenged us to think about our practise – has it became static and have we lost our focus on occupation. Jennifer took us on a journey from the origins of our profession and the rise in women’s movement from the late 19th century, to what it is in present day,  she ask us to pay more attention to practice that is happening on the margins if we want to seek answers to some of the major challenges we face currently, and want to discover places where creativity happens.

We were then treated to a hilarious presentation given by Tina Coldham a mental health campaigner – last night an OT saved my life,  reminding us that talking with and discovering what is important to the person you are working with can really make that difference.

Julia Scott chief executive of the Royal college of occupational therapists them gave her usual take home message,  this year she urged us not to abbreviate our profession to its initials, She believes by using our full title this will reduce the confusion between occupational therapy and occupational therapist and also give us more standing within the medical community –  Julia I will endeavour to do this and have try to throughout this blog (however to save characters on twitter I will at times still use OT)

I get so much from going to conference and understand it is a privilege to be able to attend, however I would urge those that were not able to go to do two things,  check out the #COT2017 on twitter for all the goings on and to read blogs that were written live at the event – all available on the Otalk blog here.   For me as an OT geek its an opportunity to learn, be challenged but also to network and socialise with those friends I have made over the years,  and a time when some of us from the Otalk team get to see each other in person.

Although I learnt lots, my favourite was spending time with friends.  You know you have had a good night out when you wake up the next morning with a green balloon attached to your walking stick.

Blog Post, Broken Leg

The broken leg Part 3 – Six months on and getting back to work.

For regular readers of my blog you will know I fell down the stairs and broke my right hemi leg just before christmas last year, however if your new to this blog you can read more here Part 1 and Part 2.

Since my last blog post a lot has happened, however the effects of the brake still have a an impact on carrying out daily occupations, and managing my emotions.

My biggest frustration has been foot wear,  my right foot and leg remain very swollen despite daily stretches and exercises given to me by the physio. This has limited me to one pair of shoes.  It surprises me how something as small as not being able to choose foot wear to match what your wearing or how you feel, can effect your mood.  I have not wanted to go to the pub with friends, felt I have not looked professional at work,  and just broke down in tears at the thought of needing to dress up.

One large change has been my bathroom, I have had a wet room put in.  You can read a blog I wrote about it here for Impey showers http://impeyshowers.blogspot.co.uk.  In short it has changed my life,  feeling safe in the bathroom, has given me my confidence back.  Plus it looks amazing.

IMG_1871

In the weeks leading up to returning to work I set myself a number of challenges to increase the amount of walking I was doing,  however the weather was rubbish so I had to be creative. Museums and art galleries were good spaces to use with plenty of places to sit for a rest.  The apple watch as come in handy again,  as you can monitor how much walking and exercised you do. I have used it to set myself targets and increase them weekly, I find it motivating.

I’ve been back at work for 6 weeks now,  the first 2 doing half days building up to full days, I’m now work 4 days a week.  I can walk around inside unaided however still feel the need to use a walking stick outside.  I’m trying to lift my foot fully off the ground to prevent tripping however I have had a few close calls and without the stick to support me I would a fallen again.

I missed work whilst I was off,  but found getting back into the routine difficult, I found myself forgetting things,  not being able to concentrate in meetings,  and overwhelmed with emails and new responsibilities.  I questioned if i could still do the job feeling inadequate most days. However my team has been very supportive, there were days I felt like not going in, but stuck with it.  By about week 5 these feelings of inadequacies began to lessen.

Last week I attended the COT conference in Harrogate,  a big challenge both physically and for my attention span.  I decided to take the wheelchair just incase I needed it,  but set myself a goal to walk as much as I could.  I felt a little stupid walking a round with an empty wheelchair, however there is no safer place to do that, than at an OT conference,  full of friends and colleagues from both real life and those I have met online.  I had lots of positive chats with people about my blogs and experiences, and as always the conference itself gave inspiration  and hope for the future of the profession.  I will return to work with fresh eyes to face to next challenge.  However physically it was difficult, determined not to complain I took pain killers, ploughed through and on the odd occasion had a quick cry to myself (but that currently is normal).

IMG_2231

The last six months as been one of the biggest challenges so far.  To readers I would like you to take away two messages.   Remember to work with the whole person,  assessing how whatever you’re treating them for effects them both physically and mentally.  Trauma no matter how small can have lasting effects,  the trauma might not just be the event that started off the need for your input, it can also be the process of getting through it,  don’t be part of the trauma be part of the recovery.

Rachel x

Blog Post, Broken Leg, Occupational Therapy

The broken leg part 2 – What does ‘Independent’ really mean?

IMG_1121

 A dictionary definition of the word independent shows it has many meanings, including ‘not influenced or controlled by others in matters of opinion, conduct, etc.; thinking or acting for oneself.’  ‘Not dependent; not depending or contingent upon something else for existence, operation, etc.’ Not relying on another or others for aid or support, and in Politics. a person who votes for candidates, measures, etc., in accordance with his or her own judgment and without regard to the endorsement of, or the positions taken by, any party.’

http://www.dictionary.com/browse/independent

But in the world of occupational therapy what does independent mean, to the therapist and to the person they are providing a service for?  This is something I have been thinking a lot about as I recover from a broken leg.

This recovery has been complicated by my existing disability, a right hemiplegia from cerebral palsy after a lack of oxygen to the brain during my birth.  The last three months have been some of the toughest of my life so far, and it’s all been down to my ability to come to terms with the lack of independence.

The issues of independence first began to play on my mind, after sadly a poor experience of occupational therapy whist in hospital.  I don’t think it would be appropriate for me to go in to this is to detail, but I will say I was concerned with their interpretation of independence.

After my operation I was having difficulty standing and began to transfer using a banana board, however my right leg was stiff and heavy with the extra weight of the pot, I could not transfer without someone holding it.

This was observed by one of the four OT’s I saw over the 16 days I was in hospital.  On discharge I ran in to difficulty and rang the OT to come out to do a home visit to reassess to my needs.  We disagreed on the help and assistance I required.

This mainly focused on the OT’s opinion I had independently transferred from the hospital bed to a chair.  I pointed out that the OT had held my leg during this transfer.  For me this was not an independent transfer. I must stress this is just my opinion and how the treatment I received felt.  But the OT service saw a broken leg and not the added complication for the hemiplegia and bariatric needs.

Discharge was not planned on admission, and unfortunately, in my opinion discharge from hospital was delayed due to the lack for forward planning by the OT team.  At this stage I cut ties with the OT service and sourced my own equipment paying for it myself, getting it in a timely manner with the help of some friends and family.

Interestingly enough whist in hospital. I was asked by the OTalk team to become a full team member. The first twitter chat I supported was ironic.  It explored if OTs within acute hospitals assessed and treated the mental health needs of their clients.  This again in my opinion was an area not addressed by any profession during my admission. #Otalk Blog

The affect of the broken leg on my mental health has been the most difficult part, those who are familiar with hemiplegia will also know that it is not just a physical disability and some of the symptoms include feeling depressed, heightened emotional sensitivity with inability to handle stressful situations.

Whist in hospital I found it incredibly difficult to manage my emotions, this was possibly made harder by the fact I was in over Christmas and New Year.  Social media, the tool I love became a focus of paranoia.  I made some mistakes in taking this out on people I love, something I am still dealing with the repercussions of 3 months on.  I was tearful on a daily basis’s and of course bored beyond belief. Friends and family did their best to visit and entertain me, during this time.  I am an extremely lucky person to have people in my life that have managed the moods, the tears and the frustrations.

Admitting and asking for help can be a hard, as a person with a disability you spend your life fighting systems and working hard to achieve despite the obstacles.  This might be some little victories like having a trampoline party as child because you were not invited to one earlier in the year as that’s child’s parents did not think you would be able to use the trampoline.  Or the large things like finish a degree, despite being turned down for your first placement because the educators had preconceptions about your physical abilities.

Some readers maybe thinking, I thought this blog was about independence, so sorry if I have gone off topic slightly, but I wanted to set the scene.

Those that have studied or have read about independence within OT will understand about codependence.  You might question is anyone truly independent? We all rely on others for something.  I found myself asking questions like, If I can use the toilet without assistance but need to be wheeled to or use a walking frame to get to the toilet is this independent??

Where does choice come in to this? can you or should you chose which parts of your life you want to be independent.  One example I have for this is prior to the fall, I would only wear flat slip on shoes without socks, as I find manipulating my hemi foot in to socks and shoes difficult.  However, after the operation my foot and leg have been very swollen. I’ve brought a wide fitting pair of shoes but due to the type of shoe I need to wear socks with them.

My first visit to the hospital physiotherapist, (10 days after having the pot removed) we had a discussion about putting my shoes and socks on, her priority for me to do this myself, however putting on this type of shoe is not something I would not normally do, although its something I know I need to work on it was not my priority at that time.

Over the past 3 months my independence abilities have changed on a daily basis some days I was more independent than others.  The equipment I’ve needed to assist me has changed dramatically from my initial thinking.

Facing getting out and about was one of the biggest challenges, for both myself and my family.  I became dependent on them when ever I wanted to leave the house, and a trip out needed to be planned in detail, much like a new mother with a new born baby.  I found I needed to plan longer rest periods than I did before the fall.

Tools like social media and the internet have helped with this I found I liked to look up where we have planed to go in detail, I look at pictures to help me understand the access issues and the distance I might need to walk, the anxiety of the unknown began to consume me.  My current challenge is to begin to go out without the safety net of the family, although I still require assistance to get my walking frame or wheelchair out of the car, I’m beginning by meeting a friend for lunch.

So I’m independently planning trips out with the toosl available to me, however I still require someone to accompany me, is this independent?

To help me explore independence in the future I’m planning on hosting a #Otalk on the subject on April 12th at 8pm I hope to see you online then.

 Rachel @OT_rach

 

 

Blog Post, Broken Leg

The Broken Leg Part 1 – From the other side –  What I have learnt.

For none regular readers of my blog,  I’m a occupational therapist who works for a mental health trust,  but i also have a disability – if you are interested to can read theses below post to give you an insight in to my life before this event.

A week in the life of an occupational therapist with a disability for OT week 2015

#otalk 14th October 2014 hemiplegia

occupational therapy professionals with a disability

What to call this blog, many titles have come to mind as I’m laid staring at a pink wall and clock that says the wrong time and date.

Among the ideas –

  • Thank you Apple watch
  • The waiting game
  • Mothers are the best
  • How small the world can become?
  • Communication feels like the hardest thing to do
  • Beep ………….beep ……………beep

 

But I settled with from the other side – what have I learnt.   As much I’m hating this experience I’m trying to find the positives.  I’m learning lots that hopefully will improve my practice and maybe that of the the odd blog reader.

What happened  – Sunday 20th Dec 2015 I was busy getting the house ready for hosting a party.  About 11am I was walking down the stairs with the washing when my right foot lost its footing about 4 steps from the bottom, the basket went forward and I went backwards, I heard a cracking sound as I lay there for few seconds to catch my breath, I know I had broken my leg.

My mobile phone was in the washing basket and had actually landed under the foot of the broken leg. Luckily I was wearing my apple watch.  I knew I needed to get the door open before an ambulance came.  My brother has a spare key so a tried him first however he did not answer.  My neighbour had a key, but she has just given birth to a little girl, using the ring feature on the apple watch, I rang her first to make sure she was in, and then some friends who live round the corner.

Whistled I waited for friends to arrive I rang the ambulance, again on the apple watch. I also tried to ring my mum but she was away at a friends, rang my dad to let him know, and then my brother rang me back.  My friends arrived and open the door, my brother shortly after.

Then we waited for the ambulance.  I’ve done a lot of waiting this week, but the three hours waiting laying on the stairs was the worst.  My friends and brother did their best to make me comfortable placing pillows under my head and back.  We tried to stand me twice but the pain was too much.  Laid there I was convinced I would be home in time for the party, (how silly that seems now) so instructed the boys to get the desserts out of the freezer, and told them where they could find something to eat, (I was nil by month of course).  Mum had also rang and set off on the just over 2 hours’ journey from her friend’s house to mine.  She arrived at my house at the exact time same time as the ambulance.

I need to praise the paramedic’s once they arrived. They were so patient and kind. I was in a difficult position on the stairs and had little strength left after supporting my self with my left leg for 3 hours.  They had great problem solving skills and used a slide sheet to move me up the stairs enough to stand on one leg and be move on to a stretcher.

At this point I’m still convinced I’ll be home for the party if not a bit late, so sent a message to everyone, saying I would let them know.

I don’t remember much once we hit the hospital, other than the x-ray showed I had fractured my tibia in several places and also broken bones in the ankle.  I was going to need an operation, they gave my drugs whilst they reset the ankle and then moved me to the ward.  I cancelled the party.

The waiting starts – Its difficult for me to write the next paragraphs, I work in and love what the NHS is, but unfortunately not all care is perfect, and when you’re on the receiving end even the smallest thing can be seen as so wrong and big.

Firstly, I have received some first class care, from a few staff members, these are the things they did that made the difference.

  • Told me their name. (more than once)
  • Stop for a brief chat.
  • Took their time when helping me move, wash or help use the toilet
  • Listen to me
  • Asked what I could do and what I needed help with.
  • Just pop their head in.
  • Told me everything they were about to do before they touch or moved me.
  • Gave me encouragement
  • Made sure things were put back in my reach before they left.
  • Asked if there was anything else they could do for me.

 

However unfortunately this was not always the case, the most frustrating was communication issues.

When I came on to the ward I was swabbed in the month and nose, no one told me why then at 2.30 in the morning I was woken and moved to a side room, told I had tested positive.  I had to ask for what.  MRSA was the answer. I was given stuff to wash with every day and told I would be re swabbed in 5 days,  by day 7 this had not happened,  I had to asked,  2 days later I had to ask for the result,  I was clear.

From admission I was nil by mouth waiting for an operation, however when the surgeon came round at 10.30 on day 2, I was told I would not be operated on that day.  However, this message did not seem to be passed on to the ward and I was not fed at lunch time, again I had to ask.  I ordered tea, but it never came.  The nil by month went on until day 8, having to remind people every day I was nil by mouth became frustrating, staff were often putting water within my reach and asking if I wanted lunch or not giving me any when I could have it. coupled with the problem of being told I was on/off the list for an operation. Sometimes the nursing staff informed me and offered food,  but often I had to ask.  On one occasion the nursing staff were told at 1pm,  but no one told me until 3.30pm.  I went without food and water unnecessarily many times.

Day 3 I heard the ward round outside my door but they never came in, I complained, but just felt like the buck was passed.  There was not enough time.

Lesson number 1 Not having enough time to communicate with your service user should never be an excuse, you might not have time but it’s likely that’s the one of a few things they do have.

The nil by month went on until day 8, having to remind people every day I was nil by mouth became frustrating, staff were often putting water within my reach and asking if I wanted lunch or not giving me any when I could have it.

I had some bad experiences will staff manually handling me.  Before the operation the leg was in a back slab, it was painful when moved and the heal rubbed constantly on the back slab, which kept me awake at night.

You learnt pressing the nurse call could mean anything from a 5 to 15 min wait, whilst it beeps continuously at you, the longest I waited was 25min.    On one occasion a staff member took the bed controls without me noticing or her saying anything, the bed was suddenly moved and I scream out in pain shouting, ‘let the patient use the controls’ –  she shouted back – ‘we never let the patient use the controls!!!!!!!!!!’  She also refused to use the glide sheet provided.

Lesson number 2 – The patient is the expert in how they feel and want to be treated.  Always inform the patient before doing anything around them, and if they can and it suits them let them have the control.

In part 2, I plan to explore, the therapy, how to be an occupational being in one room, the emotional roller-coaster and more waiting.