Feeding tube hacks!

I have a PEG feeding tube and it has given me my life back, but it isn’t problem free. I’ve written about tips before but of course I’m always learning new things so I wanted to do another post.

Storage

You can end up with a lot of equipment – bags of feed and water, syringes, tubing – and you may not want to pile boxes up in the corner of your bedroom or lounge…

I have a set of beautiful wooden drawers that store my smaller bits and pieces such as the syringes and spare parts. In a kitchen cupboard we store tubing and a week or so of feed and water bags, the rest of which we keep on a bookcase and in the hall cupboard. I like to have nice storage as it makes my flat feel less medical but talking of which…

Medication

We have two peg baskets, one for morning medication and one for evening medication, the points in the day when I have most medication.

I discussed how I use a pestle and mortar, tea strainer and medicine pots in my previous post so I won’t expain that again. One addition is a small tea tray that we use to carry the prepared medication from the kitchen to wherever I am in the flat. An alteration we have made is that when we leave the house, we no longer use the soup cups to take flush water as they started to leak a lot. Now we use small kids drink bottle, if you’re looking to find something, think about having a wide neck so that you can get to the water more easily.

Bits and bobs

Since my last post, my PEG has been changed and has a little more discharge than it used to so I have started using tubie pads from etsy. I also forgot to mention the value of pliers! Every so often the giving tubes get stuck to the PEG and pliers will come to your rescue. Make sure you take them with you when you go away as that will certainly be the time it gets stuck.

Having had some leaks overnight, I’m grateful that I have an easy to wash rug beside my bed.

If you are prone to hospital trips then a go bag should include feed and ephemera, don’t assume the hospital will have your feed in stock or be able to get it easily. Also, take medication with you.

Bags and more

I have seen some tubies using rucksacks designed for hydration as they often have an internal loop to attach the feed bag to and a channel for the tubing to get from inside to outside. I’m wondering if the headphone port on many bags could also be used.

I have also come across, but not tried, the free arm which looks like it could be used to attach a feed set up to a wheelchair, table or other structure.

I have recently had to extend the amount of time I am hooked up to the pump and in lockdown that has been fine but once I re-enter the world, we are going to need a way of taking the pump and water out too.

As I already have a specific wheelchair bag that fits all my stuff in, I didn’t want to go down the rucksack route. I do also have a bag designed for the pump and feed but it is boring and black, and the way its designed means the tube kinks a lot and causes errors.

So, after a bit of thought and experimenting, I discovered that the pump attaches onto a tripod. Specifically, a Joby Gorillapod.

Nutricia florcare Infinity pump attached to a Joby Gorillapod
Nutricia Flocare Infinity pump attached to electric wheelchair handle with the Joby Gorillapod
Nutricia Flocare Infinity pump attached to electric wheelchair handle with the Joby Gorillapod and the water bottle hooked onto the wheelchair headrest

The longer term plan is to get a caribiner hook to attach the water/feed bag, the photo was just us trialling the idea.

Please share your own tips and tricks below!

Coronavirus and Disabled People (UK)

I have been wanting to write about coronavirus and disability for some time now but every time I tried to think about it, I got too angry and frustrated. Hopefully I am now emotionally ready, we will see!

Obviously coronavirus is horrible for everyone. It is deadly and even if you haven’t had it, your life has been significantly changed because of it. There are loved ones you haven’t seen, holidays you haven’t taken, celebrations that haven’t happened. But for many disabled people, coronavirus comes with a skip full of additional worries.

If you have been paying attention to the news, you may well get the impression that there are no disabled people under 65 and that everyone with underlying health conditions are over 65. Younger disabled people are being forgotten. There are articles about grandparents desperate to see their grandchildren for a hug, but where are the reports about shielding twenty-somethings desperate to see anyone at all because they’ve been alone for months.

As the government shielding list is excruciatingly tight, many people, myself included, have decided to shield because we know our health risks and are vulnerabilities. Just because they don’t fit nicely into a governement tick box, does not mean I am going to endanger by life. There are also many people who cannot leave the house for other reasons, or can’t leave without care which may not be available now. This means that unlike most of the population, a lot of disabled people aren’t going out for exercise and fresh air.

Further, not everyone has internet. A survey by Glasgow Disability Alliance showed that only 37% of people said they had broadband at home. This means that they are not socialising online, they are not taking part in family zoom calls and they are not joining in with games on the house party app.

The mental health impact of not leaving your home, of not seeing other people and of not socialising in alternative ways such as online is significant. If you add in the additional concerns that people with disabilities have around the pandemic, you have a very serious threat to health and wellbeing. Twice as many disabled adults as non disabled adults felt that coronavirus related concerns were making their mental health worse. That is significant.

A higher proportion of disabled people than non-disabled people were worried about the effect of the coronavirus pandemic on their well-being (62.4% for disabled people compared with 49.6% of non-disabled people); their access to groceries, medication and essentials (44.9% compared with 21.9%); their access to health care and treatment for non-coronavirus-related issues (40.6% compared with 21.2%); and their health (20.2% compared with 7.3%) in May 2020.
The Office of National Statistics

My own experience with groceries, medication and health care has thankfully had issues that we have been able to reconcile eventually. I don’t eat much orally so grocery issues were limited to concerns about toilet paper. With medication, my carers have a good relationship with the pharmacy and this has helped significantly. Having carers has been critical here and I have been incredibly lucky that my care provision has not been impacted.

I also needed my feeding tube replacing which was complicated. It needed doing urgently but was not yet at emergency stage – it was an emerging emergency! But various people within the NHS system interpreted it as routine, which it would have been if routine operations were being done. In the end there were a lot of phone calls until I finally managed to get someone with a bit of power and a bit of common sense. What should have been a standard appointment ended up with me and my carer sat in a room in the hospital for the entire afternoon but the tube got changed in the end. In between all the calls, I was anxious and worried – if my tube completely broke, and it was getting close to that, then I would have been rushed into hospital as an emergency for an unplanned procedure.

I wanted to touch on my experience, even though it’s not been too bad, to give some humanity to the statistics. These are real people, real concerns and real lives that are being affected.

I mentioned that my care has been stable throughout this and I know I am very lucky in that regard but 43% of people in an RIDC survey said that they were no longer recieving visits from personal assistants. Many other disabled people are relying on friends and family instead of their usual care and this may be why 33% of disabled adults are feeling like they are a burden on others (compared to 11% of non disabled adults, ONS).

Those people who directly employ their carers have had to face many obstacles including what to do if the carers get sick and how to source precious PPE. Guidance was slow to appear and confusing at best. It has also left many disabled people who have carers or personal assistants, having to source and pay for their own PPE.

Side note, many disabled people live in poverty and many people in poverty are disabled.

Further, the Covid 19 Act made changes to what local councils have to do for disabled people. On the face of it, the aim was to free up resources to allow local authorities to prioritise care, however many disabled people are concerned about the potential loopholes it provides. Local authorities are already very stretched and as such it is incredibly difficult to get the care you need to thrive, rather than just survive. I worry that these loopholes will be used to minimise care provision and then, going forward, that people will be told they were ok on reduced care and therefore don’t need what they have been assessed for.

There is so much here that I cannot cover. This is already a rather long post and I have not touched on the specific impacts on visually impaired and hearing impaired people, or people who are neurodivergent or people with learning disabilities… You get the idea!

Just to give you a flavour of the issues and concerns at play…

And if that wasn’t enough, in the past, many disabled have been told that their reasonable adaptations for work, such as being able to work from home, are not workable. Coronavirus has revealed that we had the technology to make it possible, but not the will. This has been a bit of a kick in the teeth…

Similarly, lockdown meant suddenly everyone realised they could have events online. I have ‘attended’ so many talks and courses and conferences that would have been inaccessible to me if they hadn’t moved online. If I am out and about I use my energy up so much faster than when I’m at home and so I’ve been able to do so much more. I am really hoping that blended talks and courses are the way forward allowing people to participate in person and online.

Further Reading:
RIDC – Latest research into the impact of coronavirus on disabled and older people
Inclusion London – The impact of covid 19 and the government response on disabled people
Inclusion London – Access to Work issues arising from covid 19
Inclusion London – Coronavirus and the social impacts on disabled people
Coronavirus and the social impacts on disabled people in Great Britain: May 2020
Disabled News Service: Disabled people have been excluded and marginalised
Scope: We won’t be forgotten

Edited to add: Inclusion London’s report Abandoned, Forgotten and Ignored

Bird song and coronavirus

Some evenings the bird chatter – the kaa ka kas, the pep pip pips, the alarm calls- grate on me.  During the day I love hearing them and it grates on me that it grates on me and thus a vicious cycle spins on.

This is a new thing.  Normally I love hearing the birds as I settle into bed so I wanted to interrogate this, to try and understand what is going on.

My initial thoughts were about time of day; come evening, I am much more tired, and right now I am more likely to be fed up and despondent by the time I get into bed.  This is also the first time I am really alone in the day and I sink into my subconscious whirlings.  I don’t feel naturally aligned with appreciation, appreciation of anything, at this time of day.

I spend the day noticing and loving but by night I need distraction – tv, film, reading – something I can escape into.  And whilst the birds are incredible, they are inevitably out there in the world, right now.  And my mind will not let me forget that I am not, and will not let me forget that I am hearing them so much clearer because of the global pandemic. 

The birds do not give me the escape I need in this phase of my daily cycle.  Their caws and cacks instead pull me away from the fantasy world I plunge into and remind me that my escape is just an illusion.  That however hard I try, I am still living in a world with a virus that could kill me and the people I love.  A virus that has already killed. 

I am still living in a world where the reckless acts of strangers ignoring the rules could turn out to kill.  They could be carrying it, walking bombs waiting to be detonated.  I am still living in a world where disabled people are being devalued repeatedly in clumsy attempts to get through this crisis, where we are told we may not get the care we need to stay alive (1). And that now that able bodied people are stuck home too, suddenly technology can be used to meet up, to do courses. to offer talks online.  And suddenly working from home is perfectly possible.

The calls of the blackbird on the roof pulls me back into a world where people with a week or two of being stuck home under their belt, are suddenly experts on loving nature from home.  Despite their daily walks, possibly through countryside and woodland, and their good sized garden, they speak with the authority of a housebound disabled person who has lived this for years.  Our voices, those with lived experiences and expertise, are still not heard.  We are shouting and going unnoticed because we are disposable, literally right now.  Worthless.  Valueless. (2) 

I have shed many shackles since becoming disabled; the idea that my value is about my economic contribution and my productivity; that my self worth is tied to doing… Is the evening bird song grating against another shackle?  One where I cannot be a nature lover, or a nature writer, if I cannot always appreciate it and embrace it?(3)

The nightly scrabble and scramble of starlings on the feeder doesn’t seem as endearing as it did hours before.  And all that has changed is me.  I have moved through my day, and now I want to tune out the world, and all the noise that tries to tell me I am unimportant.  When the messages scream so loudly, so constantly, they cannot help but echo and reverberate around my soul.

By the time I get into bed, I need to escape.  I need to live in a different world or a different time.  And those birds that I love so deeply and dearly, peck through the bubble I am trying to build.

Come the dawn chorus, I am back to noticing, caring, loving and appreciating.

Notes

(1) A recent RIDC survey found 50% of people with care support needs are no longer receiving health or personal care visits to their home. Disabled people left off coronavirus vulnerable people list go without food. Ministers warned coronavirus bill threatens services for disabled people.

(2) ‘I feel like I don’t count,’ says man with MND. Disabled people ‘forgotten’ by government strategy.

(3) This already feels a harder label to claim with the ableism within the environmental movements and the wilderness ideal excluding disabled people

Staying home, some tips

I have spent a lot of time unable to leave my house in the past, and none of those periods have had a known end date. This means dealing with isolation, cabin fever and no idea when it will end, something a lot of people are facing right now. So I wanted to share some of my learnings…

First, if you are used to working outside the home, think about what work does for you. Yes you get paid but you also get to interact with people, leave the house, use your brain, be creative, problem solve and work adds to your self esteem and sense of worth. For me, this has translated as five things I aim to do each week:

  • Something creative – art, craft, writing…
  • Something that uses my brain – a crossword, scrabble, reading, learning…
  • Talking to someone who is not a carer – ideally this would be in person but there are times when this might be a phone call, a skype call, an email or some other virtual way
  • Checking in with my emotions – maybe doing tarot, journaling or whatever works for you. Expect to have complicated feelings that don’t necessarily make sense. Make space for emotions.
  • Finally getting outside the house. This is clearly not an easy one to meet right now. However, you can go into your garden if you are lucky enough to have one. If you don’t, you can open your windows to let some air and bird song in. I’ve also written about ways of connecting with nature when you are stuck in the house.

A few other things that might be useful to note include:

  • Allow space and time for emotional exhaustion
  • Expect to spend more on utilities during this time. You won’t be using work gas, electric and water and that will add up.
  • Keep to at least a loose routine, especially during week days.
  • Get dressed. Yes you can have a few pj days, but make the effort most days. You will feel better for it.
  • It’s ok to laugh. Gallows humour is a way of coping with difficult circumstance.

Then comes the question of how you are going to pass the time…

  • Online contact
  • Online learning
  • Reading
    • Don’t set yourself up to read all of War and Peace. Be realistic about how your energy levels and concentration are being affected. All books are valuable and you can read children’s books and young adult fiction even if you are in your 90s.
  • TV
    • All of Criminal Minds is on Prime, that’s a lot of episodes!
    • Comedy series’ on Prime – Modern Family, Life in Pieces, The Middle
    • Documentaries on Netflix – The Pharmacist, The Trials of Gabriel Fernandez, explained, 60 days in,
    • Fun viewing on Netflix – You Me Her, Clueless, One day at a time, Grace and Frankie
    • Please share your own recommendations for films, tv and books below!
  • Think about all those hobbies you always say you’d like to try, now is the time. Take up knitting or paint by numbers or cooking. Whatever it is, you will find a tutorial out there.
  • Write yourself an isolation bucket list – film nights, skype coffee, cleaning out that cupboard you never get to…

BUT also prepare not to do all these things. All the news and uncertainty takes an emotional toll on people, and makes us feel tired even if we aren’t doing much. Think about small, bite sized activities and intersperse them with rewards such as lunch, a cup of tea or an episode of your current go to tv show.

These are strange times and if you aren’t used to being stuck at home, it’s likely to feel very constricting but I thank you so much for doing what you are doing. By staying home, you are helping to reduce the spread of coronavirus and keep those of us who are vulnerable safer.

Other related posts
FOMO and chronic illness
Goals, aims and ambitions when you’re retired/ill

(in)accessibility and nature

I will be talking primarily about access from a mobility perspective in this post because that is my main experience.  There are so many ways in which health and disability can affect engagement with nature and I do hope to touch on that in another post.  In the meantime, if you want to share your own experiences, please do so in the comments.

As I have discussed, there is a privilege with which many people view and experience nature.  There is an unspoken assumption that nature means somewhere “out there”, away from humans, somewhere that could be described as wilderness.  By creating that distance, we not only put ourselves outside of nature but we make it impossible for some people to engage with nature.

Immediately my mind goes to those of us who can’t walk, or who don’t navigate the world in the same way as the majority.  Some of us require carefully cultivated paths which regulate our experience, inevitably some might say.  But is that not because an able bodied world has determined that we don’t need the same access as others?  That by adding a short circular route near an information centre the tick box exercise is complete.  That we don’t need anything more.  That being disabled is a uniform experience and thus we want a uniform way of being in the world, and by extension in nature.

Hidden and undiscovered or rarely used places – that tend to be less maintained and hence are less accessible – are often considered to be more natural than tarmacked or wooden decking paths.  This means I cannot truly experience nature in the eyes of those people but I know that this isn’t true.  I experience nature deeply in my own way, perhaps more so because of my disability and limitations. Of course, there are other reasons people may not be able to get off the beaten track including where they live, finances, transport, lack of information and so on.  Race, gender and class all have roles to play as well and of course these barriers need to be broken down too.

Another common narrative about getting into nature is that of getting away from technology.  If I am leaving my house, I have to either be pushed by a carer or go in my electric wheelchair, with the latter being much more comfortable and more independent.  Technology is not antithetical to nature.  Like everything in this world it’s about how we use it.  Technology can help us to identify bird calls or trees, put names to the flowers we’re seeing and, in that way, can help to more deeply engage us with the nature we are experiencing.  Taking photos with cameras and phones can help us see more closely and help us to slow down.

A third thread of the discussion around getting into nature is that of how easy and simple it is to go out in nature and how foolish we are if we don’t.  Again, an example from my own life.  Say I have found somewhere suitable to go and be in nature, somewhere accessible, with parking so we can take my wheelchair and not worry about the battery dying.  Say all of those things are sorted and then it rains.  Just a little rain, no big deal; the words of many people who think nature is easy.  We whip out my wheelchair waterproof, wrangle it over me and the chair and in doing so I’ve got wet.  Assuming no more water leaks in, which it always does, I will still get chilled and probably ill as a result.  The same is true in winter, even on dry days – being in a wheelchair, not moving, means you feel so much colder than those around you and for many people with physical health issues, this has greater consequences.

This is to say nothing of all the mental work that goes into finding somewhere suitable to go in the first place.  There is a dearth of information about accessible nature out there.  It is improving but you can still get better information about where to go for a romantic stroll on the Yorkshire Wildlife Trust website than you can for wheelchair suitable walks.  If you filter by the latter, you will get zero results, even though I know at least a few of their sites are wheelchair accessible…

But, despite all of this, there are some very easy ways to make the nature ‘out there’ more inclusive.  Adding edges to the paths means visually impaired people who are using white canes can identify the borders of them more easily.  Replacing locked gates with radar locks.  Making kissing gates a little bigger.  Even just providing all of this information online and through other methods helps immensely.  Styles with spaces for guide dogs to walk under.  Adding wooden board walks.  Adding a ramp into a bird hide.  Adding benches every so many metres and having a map to show where they are.  Adding a gap into a cliff fence at wheelchair height.  These are not difficult changes, they just require things to be done differently.  Instead of repeating what has always been done, an open mind can come up with easy ways to make the nature ‘out there’ more accessible to everyone.

What we call nature and why it matters

What is nature is a difficult question imbued with cultural associations and assumptions and so to limit this to one blog post, I’m considering this from a broad UK perspective.

Nature is cast as a thing out there that we must head out into.  It is a wild and tangled space complete with certain iconic creatures, preferably rare and hard to see.  It is the peaks of mountains that one must summit and conquer.

It is this view that means we so often overlook the space around us, privileging a weekend hike into nature and forget that we are nature and we are embedded within nature and we cannot escape nature.  Even in the densest city, ‘nature’ can be found, and found thriving.

We step over plants pushing through cracks in concrete, ignoring their force to survive and thrive.  We move past walls with delicate purple petals clinging on.  We don’t see the pigeon that is pecking away on the pavement.  This could be argued, because of the specific idea our cultural has created about what nature is.  So let’s start by unpicking those assumptions.

Raymond William wrote, in 1976 that:

Nature is perhaps the most complex word in the language.

For many people, nature is intrinsically linked with wild and wilderness and with being alone and surrounded by countryside.  This is an association which is prevalent in our culture so I do not seek to disparage those people, but I do hope that eyes will be opened to urban nature.  Increasingly, magazines, newspapers and books are speaking of urban nature with the merit it deserves and we have to remember that Britain has very few places untouched by human hands.

Stephen Moss speaks of the agricultural history of our landscape in his book Wild Kingdom; “everything I can see, all around me, has been shaped – and indeed is still being shaped – by human hand”.  We have historical land boundaries, enclosures, ruined buildings, plough marks, forests which no longer stand, trees which have been coppiced, pastures where sheep have grazed for hundreds of years… All of which are the result of human land use.  Very few parts of our country escape this, so the wild nature which many of us in the UK idolise, has not really existed for thousands of years.  Our focus on this untouched idea of nature is detrimental to ourselves – Cynan Jones notes that a fascination with far off wilderness can blind us to the local wildernesses.

And local wildness is beautiful.  Just think of the dandelion which forces its way through the crack in the pavement and persists and perseveres.  Mark Cocker talks of the overlooked inner-city wasteland where nature thrives.  He explains, whilst this “completely subverts our conventional notions about beauty in landscape… almost every other part of the country is intensely managed at a physical level and we are, in some sense, guided towards a particular intellectual and emotional response.  Even in nature reserves and national parks our attitudes are largely prescribed. By contrast, urban dereliction is entirely free of these restraints. Uncared for, unmanaged and unintentional – it is, in a way, the nearest thing to true wilderness that we possess.”

***

“We must learn to love the narrow spot that surrounds our daily life for what of beauty and sympathy there is in it.  Fore surely there is no square mile of earth’s inhabitable surface that is not beautiful in its own way, if we men will only abstain from wilfully destroying that beauty.”
– William Morris

With the exception of the word man, I agree wholeheartedly with Morris’s sentiment. We know that in one square metre of English woodland soil you can find more than 20,000 mites, 15,000 springtails and about 1,300 maggots (Erica McAlister) as well as many other species in the soil and the space and flora above.  Many people overlook the space around us, privileging a weekend hike into nature and forget that we are nature and we are embedded within nature and we cannot escape nature.  Even in the densest city, ‘nature’ can be found, and found thriving.

By rethinking what nature is and isn’t, we can create a practice of connecting with nature that is vastly more inclusive.  It is more inclusive for people with disabilities, for people who may be financially excluded, it covers class and race and gender.  By focusing on where people are, as opposed to where they might go to, we can see that connecting with nature is accessible to virtually every person who wants to experience it.  Connecting people with nature helps more people to care about the natural world and it is ultimately an emotional connection that will help people to change their behaviour on an individual level and seek change on a more institutional level.

Of course, it is not enough to tell a disabled person that they don’t need access to the nature out there because they have nature all around them.  Of course, we still need to identify and break down the barriers that prohibit or limit access to forests, national parks, nature reserves and so on.  That will be the topic for my next blog post.

 

Illness as an identity

First, I know this will be a controversial topic. I found a thread on Twitter with many chronically ill people ripping the idea to shreds. So I want to be clear, this will not apply to many people who are chronically ill. However, I’ve known people where this has been the case and who often don’t see for themselves that this has happened.

So, what kick started the twitter thread, and this post, was a psychologist (I think) saying that for some chronically ill patients, their illness has become their identity.  Not just something they identify with, but their entire identity.  The person was saying that for these patients, engaging with the healthcare system to the degree that they do is not always helpful and can actually be harmful, physically or psychologically.

She went on to talk about using the twelve step program traditionally used for addiction to help this subset of patients and I don’t want to talk about that.  I don’t know enough about the program and what I do know, doesn’t always sit well with me.  But the issue that many chronically ill people were having wasn’t with the 12 step program, it was with the idea that what she was saying was basically patient blaming.

The initial tweet was followed by a number of versions of “I don’t want to be chronically ill, I don’t choose this” which I think is problematic in the context of addiction as addicts don’t chose addiction. But it’s also problematic because people are saying this doesn’t apply to me and therefore it must not be relevant to any chronically ill person.  An overlooking of the fact that the psychologist was talking about a small number of chronically ill people.  Chronic illness isn’t a unified group, for starters there are many different ways to be chronically ill and different people are at different stages of the psychological work that goes with being chronically ill.

After reading this twitter thread, I went on to do some research about the idea of illness as identity and much of it confirmed what I thought.

There are different ways people react to chronic illness and I’d like to point out that that doesn’t make for better or worse people. We all deal with things differently, based on our life experiences and personalities.

Visualization of the four illness identity constructs.
The dot represents the heart disease and the circle represents identity. Illness Identity

Whilst the above diagram is focused on heart disease, the model works for chronic illness more broadly.  There are four routes which patients tend to go down:

  • Engulfment
  • Rejection
  • Acceptance
  • Enrichment

And the patients that the psychologist was likely talking about were those who become engulfed by their illness.

Engulfment indicates the degree to which patients feel that their disease dominates their identity. These patients completely define themselves in terms of their disease.”
Illness Identity

This seems to me to be the group of people who spend vast amounts of time at the doctors or hospital when its not really necessary. Who call the doctors at the first sign of what is likely a “normal” issue- a sniffle, a cramp, extra fatigue- and who don’t consider that it could be a “normal ” issue or a response to something they’ve done. Or who only ever talk about their illness.

“When the individual becomes absorbed in his or her chronic illness, he or she focuses on the suffering, loss and burden associated with it. His  or her self-identity will then be formed around being a patient as he or she identifies with the sick role.”
Chronic Illness and Self-Identity

I know people who in theory want to do x,y,z but who use their illness as a way to avoid even attempting it. I’m talking here about things which are achievable within that person’s limits but which never get attempted because of the way that illness is consuming them.

I’ve known people who’ve had surgery after surgery for an issue that surgery will not cure. I’m talking here about 20 surgeries on the same joint even though all the literature advises against any surgery. This life then becomes about surgery, being a patient, recovering and repeat. It seems to be reasonably clear that something else is going on here. That the person is using surgery to try and meet some need, whether that’s the hope of a miracle or the attention and care that comes with the cycle. These are valid needs but there are other ways of meeting them.

On the other hand, I know people who vehemently push against their illness, pretending it isn’t there and that has its own issues.

“Another construct pertaining to illness identity is rejection, which refers to the degree to which the disease is rejected as part of the patient’s identity and is seen as a threat or as unacceptable to the self.  Patients with high rejection scores tend to refute their disease, which often results in suboptimal disease self-management and adherence.”
Illness Identity

I think most of us go through stages where we dip in and out of the different categories and that is ok, our health changes, our life changes.  And of course having a chronic illness is likely to affect how you think about yourself, how you see yourself and your identity but everyone is more than their illness.  An ideal end point, especially if there is no known cure for your chronic illness, is acceptance.  This is not about denying the illness but about trying to live your life with your illness.  Acceptance gives you resilience, adaptability and a better quality of life.

Although it is a constant process, one that is never completed,individuals can, through reframing the experiences of the ill body and ultimately surrendering to the illness, form a new positive self-identity… when an individual accepts the sick body instead of constantly comparing it with both its past capabilities and the hopes of its future perfection, the sick body becomes predictable, manageable and even comfortable.”
Chronic Illness and Self-Identity

And on a final note, I have ehlers danlos syndrome, I am not ehlers danlos syndrome. I am Helen. I am a writer.  I am an artist, a friend, a reader and so on.

Links

Things that improve my life

This is part four I think… Of course new products become available, I become aware of different products and my needs change so this is likely to be an ever evolving list.

So, things which improve my life include…

An adaptor which turns your wheelchair into a phone charger.  I have a short, multi ended charger plugged into mine so that I can charge any of my devices, my friends and my carers should the need arise.  It works when the chair is turned off as well as when it’s in use.

Small wheelchair charger.  Most wheelchair chargers are big and clunky and not very portable but you can get some which are more reasonably sized and I have one of these in my wheelchair bag at all times, just in case!

Period pants, which I love so much I wrote a whole blog post about them…

Now I have my wheelchair vehicle – another thing that makes my life easier! – I am going out and about in my electric wheelchair a lot more which is so much better.  However, it is bigger and doesn’t let me get under tables very well which is annoying when I’m at courses and want to write notes or rest the handouts on the table.  So I got a Trabasack wheelchair tray, in purple of course.  Mine is the curve connect and it hangs on the back of my wheelchair but then when I need it, it fits snugly on my lap and has a zip pocket so I can pop my tablet in there.

My tablet is also an essential.  I go for the lightest reasonably priced one and when I needed a new one, this happened to be the Samsung S5e.  I also got the keyboard and a stylus.  I also have a pen holder which is designed for books and basically is a piece of elastic that handily slides round my keyboard cover so my stylus is always to hand.  Unfortunately I cannot seem to find what I mean online…

As winter is approaching, I’m using my wheelchair cosy and waterproof a lot more… For added warmth I also tend to add blankets under the cosy and if it’s really cold, then an electric hot water bottle.  If it’s really really cold, then I’ll also pop a couple of hotrox in my shoes… Heat packs are also handy for warmth and soothing angry body parts.

If you aren’t as obsessed with being warm as me, then you may want to have some cool packs in your house… There are ones which turn into ice packs on opening which are useful for out and about and we also wrap small freezer blocks in a tea towel.

Actually, that reminds me, in the summer wheelchairs can get very sweaty… They tend to be black and tend to be made from plastic-y fabric.  This meant that on one of the first really hot days this year, I ended up with my back drenched in sweat… And kept burning myself on my wheelchair.  We got round this by using a thin cotton blanket which we draped over as much of the chair as we could.

Talking of out and about… I have a wheelchair bag which aren’t known for being exciting so I have covered mine in patches and badges.  In it are the usual things like keys and a phone but also sachets of calpol, my medication paraphernalia, heat packs, ice packs, reusable straws in a totally strawsome straw pouch and a spoon with a moulded handle that I can use more easily.  There’s also a 4Head stick which I use for headaches but also find it can help relieve muscle tension when my joints get angry.  And also a few sachets of salt in case I feel POTsy when I’m out and about.

Back in my flat, I have a wonderful mattress (mine is a mammoth one but mattresses are very personal) and a very specific to me bed arrangement.  I have two maternity pillows which help to position my upper body, a leg raiser to support the lower half and a duvet raiser tent like thing which stops the duvet from bending my feet.  The latter is good but I found that it was causing a draft as the duvet wasn’t long enough to drape over the end so I have covered it with a blanket, secured by pegs.  I also found that it would sometimes fall off the end of the bed so I got a kids bed rail and popped it at the foot end of the mattress.  Problem solved.

And just a few odds and ends that I wanted to mention:

  • baby toothbrush wipes so I can sort of clean my own teeth – I don’t like things in my mouth so it’s very hard for my carers to clean them well…
  • a cup holder which is designed for prams and pushchairs but which also attaches to my wheelchair and is perfect for popping my phone or keys in
  • peg boxes are great for carrying around the bits and pieces I need with me in my flat – phone, door opener, postit notes, 4head stick, nail file etc.  It means that I don’t have to remember to move them from room to room and I don’t need my carers to get anything I’ve forgotten.
  • a massager… I got this from Naidex and I love it.  Mine is a Truviv one and I’ve found it really helps when my shoulders are tight.  I do have to be careful because of my joints so I always use it on the slower speed and not for too long at a time.  Just something to think about if you have EDS.
  • a back rest for my manual wheelchair.  This actually came free with my massager and is probably not designed for wheelchair specific use but it fits perfectly and makes the chair a lot more comfortable.

Finally, a sense of humour makes all the difference.

Being disabled in hospital

Intuitively, you’d think hospitals would be set up for people with disabilities, long term health issues and wheelchair users. However…

When I stayed in hospital I found my preexisting and unrelated disability was treated badly. This included:

  • Not being able to go in ambulance in wheelchair – I had to transfer out of my electric wheelchair, into the ambulance wheelchair and then I could get put in the ambulance. This means when you arrive, you are reliant on hospital wheelchairs and people to push you. Both are in short supply. I got my manual wheelchair brought into hospital so had a bit more comfort and didn’t have to rely on hospital wheelchairs being available. Unfortunately it was really hard for me to get my electric chair so I couldn’t leave my bed without someone to push me.
  • This was made worse because nurses and healthcare assistants kept telling me to get off the ward and have a change of scenery. I understand the value of leaving the ward but the main friend I had visiting had hurt her back so couldn’t push me. When I explained this I was made to feel like a bad patient and there was a very clear implication that I didn’t want to get better or get out of hospital.
  • Related to this, I kept being ‘encouraged’ to walk further and for longer than I can and then all but being told off when I couldn’t.
  • I tried to ask for help getting out if bed and was told no because the healthcare assistant saw me walking on another day. My condition fluctuates and my issue wasn’t walking but getting out of bed because I had lost any core strength I had.
  • There was no help with personal care which would have been fine except my carers weren’t allowed onto the ward outside visiting hours. As a result I went days with my face not washed, my hair not brushed and my clothes not changed. It also meant I had to ask hospital staff to grab me things, to open bottles and to pour me a drink.  Some staff were fine with this, others less so but either way they had more important jobs to be doing.
  • There were no shower facilities for wheelchair users and I ended up using the one changing places toilet in the hospital to shower. This involved the cleaner repeatedly hammering on the door. I assumed it was someone needing to use the disabled toilet and rushed and kept shouting that I was only going to be a few more minutes. Finding out it was the cleaner really hacked me off…
  • Once I was able to get out of bed myself, it was in theory easier to go to the toilet.  Except because of my disability, I couldn’t physically lock the door…
  • Any preexisting health issues were ignored and I was denied morphine flat out on one occasion.  I was told because I was being discharged the next day I couldn’t have any because they don’t release people with morphine.  Even though it was unrelated to why I was in hospital and even though I have morphine at home.  I was given paracetamol and left to suffer.
  • There was a dramatic lack of understanding about my condition which would be fine and I’m happy to explain it.  However, what I don’t like is people who pretend to know about it.  There was a nurse who said she knew all about ED (which to me means erectile dysfunction or emergency department – I have Ehlers Danlos Syndrome…) and then was shocked when she discovered I was hypermobile…  There was a doctor who acted like he knew all about EDS and then couldn’t understand why I have morphine on prescription…If you don’t know, ask or at least google!
  • There was also an assumption that the staff knew best even when it came to issues like how to help me out of bed – if you hold my hands and pull, my wrists may well dislocate…
  • There were also environmental issues that would have bothered me even if I didn’t have a disability but possibly affected me more so…
    • I was suffering from migraines and these were exacerbated by harsh lighting and I would ask to have my curtains left shut to block some of it out.  These were repeatedly opened and I couldn’t get up to shut them.
    • Lights are routinely turned on at night which I understand but sleep is good for healing!
    • Being woken up at numerous points in the night to have blood pressure taken etc even once we’d reached a stage where I could have been sent home if my home care was in place.
    • Incredibly strong air freshener

I haven’t even talked about needing specific mattresses or other equipment such as a hoist or a feeding pump.  For another person’s experience, check out Emma’s blog – and look at other posts too whilst you’re there!

I’d like to end by saying that there were some amazing members of staff who were working with a lack of time and a lack of equipment and providing exceptional care despite that. There were a couple of people on my ward who I looked forward to seeing and would feel relief when I knew they were coming on shift.