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

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.

The last two years

Two years ago, September 2017, I stopped being able to swallow properly. My diet suddenly dropped to include less than a handful of options. This was to be the start of a significant change in my health and life.

In November I was admitted to hospital for the first time in my life. For three hellish weeks. I repeatedly explained to numerous people what was going on with my swallow. Repeatedly I was disbelieved. Tests came back saying I was fine and nurses reacted by telling me there was nothing wrong so I could swallow. I had my first NG tube and when I got distressed and questioned the level of discomfort I was experiencing with it the nurse told me I should have just eaten so I wouldn’t have needed it. It was clear I wasn’t being listened to with open minds. The first 16 or so days I was in hospital I was getting no food and very little (very very little for me) fluids and no medication. So that included no pain relief, no antidepressants and no antihistamines despite horrific allergies. No one seemed to understand why I thought this was a problem. I would later be sent home with ‘magical medication’ which would surely fix me and told it’d be reviewed in four weeks.

This meant four weeks with very little food because the tablets would take time to work, if they worked at all. No one seemed to understand, or at least acknowledge, why I was distressed by this. Everyone was just focused on how great it was I’d be home for christmas. There was no back up plan.

Six weeks after that, in what my nice gastro described as ‘a bit of a pickle’, I was finally re-admitted to hospital. By this point I was once again starving, dehydrated and was violently sick every time I moved. I was so ill that they couldn’t give me the NG tube I had begged for through tears just two weeks earlier. Most drs still didn’t believe me. One refused to tell me what the plan was once an NG tube was in because I wasn’t co-operating (I was violently sick when they tried to put the tube in but she read that as uncooperative). She had earlier decided that the way forward was refering me to the eating disorders team which I know is a long wait and I also repeatedly told her it wasn’t a relapse of my anorexia. She just kept asking how would I know? She went on to get me assessed by the mental health team and thankfully they realised I was in a drastic situation and was reacting much as most people would, that my mental health was suffering but wasn’t causing my swallowing issues.

I have since found out that in the run up to that second hospital admission j was hallucinating . I knew things were bad but until recently I didn’t know how bad…

Eventually the good dr won out and I was able to get the PEG tube that we both knew I really needed. The first try failed because my stomach was in the wrong place … so it took a second attempt to get the tube in me. During this hospital stay I had multiple days of being nil by mouth or tube, more days like that than days being able to eat or drink I think, because various tests were being run. They were concerned about my blood sugar levels which was ridiculous because if you havent eaten in months, they were going to be squiffy…

Whilst still in hospital I had issues with my care company and it became clear I needed to change. This has been reiterated by the much improved care I’ve had with the new team. But getting used to new staff, getting people trained up etc is all tiring, hard work. And I was recovering from starvation and all my EDS symptoms got worse whilst I wasn’t able to eat. I also gained new symptoms.

One of these new symptoms was wobbly lenses in my eyes. This limits how much I can read at once, how well I cope with movement and can lead to me feeling very seasick when all I’ve done is scroll through instagram. Yet another thing to adapt to and change to cope with. I now have pink tinted glasses which help a lot but I still have symptoms because of my eyes and I can’t see distance as well as I used to, something that means it’s incredibly difficult to use binoculars and which affects my ability to see through my camera viewfinder.

I also lost physical strength as well as awareness of my body. When I was in hospital the second time, if my eyes were closed, i didn’t know if i was laying down or sitting up. And that is something that hasn’t fully recovered although is vastly better than it was.

Today, two years on, I am incredibly grateful for my feeding tube. I no longer have to worry about my calorie intake, or how I manage to maintain my high fluid needs or how im going to swallow my medication. I have figured out the random things I can and can’t eat or drink and I’m happy with where things are. I have the energy to get out of bed, to leave the house and even to go on holiday. Everything has changed significantly. And what I’m most grateful for is that I got to share my two year ‘anniversary’ with my best friend who had shared a room with me almost exactly two years ago. A couple of weeks after my swallow broke, she put up with my odd eating and awful exhaustion. Months later, despite being 200 miles away, she spoke with my doctor and fought with them to get me the care I needed, and I love her.

Laughing at my nightmare

I have recently discovered Shane Burcaw and his wonderful sense of humour.  Quoting from his blog, I will let him introduce himself:

“I’m Shane Burcaw. I’m 26 years old, and I have a disease called Spinal Muscular Atrophy. I have been in a wheelchair since I was two. I love to laugh, and my life is pretty funny. Allow me to share…”

And if you want to take him up on his offer to share, you have a few options.  There are his books, which I read incredibly quickly, shared bits of out loud and on instagram, and have recommended to many people already.  There is his blog of course and the YouTube channel that he shares with his fiancee Hannah.

book1

And if you find him as funny and entertaining as I do, consider donating to his charity which raises money for other people with Muscular Dystrophy and helps them live their best lives.

book2

One thing from Shane’s blog that I love is the ‘What Made Me Smile’ posts and in the spirit of that, here are the things that have made me smile this week:

  • seeing the sparrows that visit my feeder get ready for winter with their fluffy feathers
  • thai food with a couple of awesome people
  • finding solutions to a couple of disability related problems, i do love a good problem solving moment
  • teaching a friend to knit
  • watching a carer read Shane’s first book and seeing her smile and laugh. NB I am not creepily staring at her as she reads!
  • getting my copy of Inside History which focuses on medicine and surgery for issue 1!

Do all disabled people think the same?

Clearly the answer is no.  But this is an interesting video which asks some interesting questions and I wanted to share my responses.  I realise this comes on the back of another blog post where I respond to questions but I’m not anticipating that this will become a trend.

Am I offended by the word disabled?

I know this is something that bothers some people, and different places have different preferred language.  For example in the UK, we tend to speak of disabled people whereas in the US, people with disabilities seems to be the preferred option.

Anyway, back to the question.  I have no issue with the word disabled.  It describes my situation and is vastly better than some of the alternatives such as differently abled or special.  I do think it’s important to remember that disability, or being disabled, is more than just wheelchairs though.  It covers physical, mental and learning disabilities and I do think that the symbol of a person in a wheelchair is too narrow.

Does this country provide enough resources for the disabled community?

It doesn’t matter where in the world you are, the answer to this is no.  Of course some countries are doing a better job than others but disability is generally underfunded, under-acknowledged and misunderstood.  There are still so many taboos and stereotypes out there and these damage opportunities for disabled people.

Are most people ignorant about my disability?

For my particular disability, things are getting better.  There is more information about there about my condition.  In terms of using a wheelchair, there is a lot of ignorance.  People still think if you use a wheelchair, you can’t stand or walk at all.  This is the case for some people but many of us can get out of our chairs.  Related to that is the idea that disability looks a certain way and anyone who doesn’t fit that image must therefore be faking.

Do I appreciate it when people offer me help?

I was in town once, in my wheelchair outside a shop waiting for my friend.  I was trying to put my coat on.  Someone came up behind me, I hadn’t heard them, the first I knew was when they grabbed my coat and started trying to help me.  I do understand it was meant well, but it could easily have led to my shoulder dislocating.  Please, do ask if you think I need help, but don’t just thrust it upon me.

Also, if you do want to help and have asked, listen to me as I probably know how best you can help me.

Is dating difficult?

Yes.  Dating requires being vulnerable and that can involve another layer of vulnerability when you have a disability.  There are also all the should I shouldn’t I’s.  You want people to see past the disability but also, especially if you’re short on energy, you want to meet up with people who aren’t going to turn out to be prejudiced.  And there are a lot of people out there who don’t see disabled people as sexual beings, people who wouldn’t consider dating a disabled person and people who assume that dating a disabled person means you become their carer.

Have I felt like a burden?

Yes.  In general, my friends don’t make me feel like a burden but strangers do all the time.  Whether it’s when I’m asking to squeeze past in my wheelchair or need a hand moving chairs in a cafe, there does seem to be two reactions.  The people who think nothing of being helpful and those other people who really make you know that they have had to go out of their way for me.

Would I change my disability?

This is an impossible question.  I would love to not be in pain 24/7 but I also wouldn’t be me if I didn’t have my disability.  Without it, I have no idea what my life would look like.  I’d be on such a different track and whilst that’s intriguing, there are things in my life that I really value that wouldn’t be with me without my disability.  I wouldn’t have had as much time to write and do art and learn about tarot and astrology.  I certainly wouldn’t know as much as I do about nature.

Am I living a fulfilled life?

When read with the above question, I think the answer has to be yes.  It’s a different life but it’s one that I have put time and effort into creating.  And even without my physical disability, I’d still have had to overcome my mental health issues.  I know what I need to do in order to feel fulfilled.  I learn, I read, I think, I create, I go out and I chill out.  Retiring meant I had to figure this out, it was that or living in a groundhog day world where I did the same nothingness every day.

Disability and sexual health

Note, this is primarily going to be about the experience of cis women as I know more about this right now and I feel that trans disabled people are likely to have some extra barriers.  And obviously there are many different disabilities and this post is going to focus on physical disabilities.  It is also important to note that some people have had great experiences, but it is a postcode lottery.

You would think that medical buildings would be one of the most accessible places in the UK, but the reality is shocking.  Being in hospital with a physical disability was horrendous, but that’s for another post, this one is about sexual health services.

A recent report from Jo’s Cervical Cancer Trust found that:

  • 88% said it is harder for women with physical disabilities to attend or access cervical screening
  • 63% said that they have been unable to attend cervical screening because of their disability
  • 49% said that they have chosen not to attend cervical screening in the past for reasons such as previous bad experiences related to their disability or worries about how people might react.
  • 45% said that they felt their needs have been forgotten and 38% said that they feel the doctors or nurses don’t take their needs seriously

This is not ok.  Sexual health matters.  And it’s not just about cervical screening.  The issues at play with the smear test are also often found in STI testing.  All of this is putting women with disabilities in danger.

In terms of screening for breast cancer, the NHS website says:

“Mammography is a procedure that’s technically difficult. You have to be carefully positioned on the X-ray machine, and must be able to hold the position for several seconds.

This may not be possible for women with limited mobility in their upper bodies or who are unable to support their upper bodies unaided.

If you have a disability, your breast screening unit should be able to advise you if screening is technically possible, and on the most appropriate place to be screened. This will usually be at a static unit.

If a mammogram isn’t technically possible, you should still remain in the call and recall programme, as any increased mobility at a future date may make screening easier.

If a woman can’t be screened, she should be advised on breast awareness.”

And whilst I understand the physical limitations, it doesn’t feel like enough.  In the US, between 2001 and 2005, 75.4% of women without disabilities went for a mammogram, compared to 54.9% of those who have a disability.

Barriers to accessing sexual health services include, but are not limited to:

  • surgeries that are not wheelchair friendly – a shocking 63% of respondents to the Jo’s Trust survey said their GP was wheelchair accessible
  • a lack of hoists and adjustable beds
  • previous negative experiences – women with disabilities may have had more interaction with the medical community and bad experiences more generally can mean they are reluctant to go for screening.  It’s not uncommon for women to feel they aren’t listened to or taken seriously when they present with illness or disability and no one wants to subject themselves to more of that.
  • related to which is staff attitudes, and not seeing disabled women as sexual beings and hence seeing sexual health as a low priority.

“In some cases, women reported being told screening is too complex to arrange and have been told it is not possible or even asked to sign a waiver stating that they do not wish to receive screening.”
– Jo’s Trust

Attitudes and beliefs taint the way people are treated.  I’ve had GPs question why I wanted contraception and assume the only reason would be to stop my period.  This didn’t happen before I became disabled.  And if someone isn’t seen as sexual, then by extension they don’t need to access sexual health services.  This way of thinking can block innovative, or just common sense, ways of providing these services. 

These solutions might be home visits for people unable to leave their bed, buying a hoist for the GP practice or referring people to a hospital where there are appropriate facilities.  It could be having appointments which allow for women with disabilities needing longer or it could just be better training.  Sometimes it might be as basic as having an accessible GP practice which really shouldn’t be a big ask.  And sometimes it might be even simpler and be a case of including access information on the website.  I checked out the online information for my nearest sexual health clinic and there is no mention of access or blue badge parking and that in itself is a barrier than can be easily and cheaply overcome.

Other good practice ideas include having staff that are flexible, that can problem solve and who want to work with the patient to find out what works for them.  It’s possible extra reassurance may help, or a “we’ll try it and see what happens and go from there” attitude.  For some women, going in and seeing the space may help them to work out adaptations with the staff beforehand.  It might also help to have another professional on hand to help.

There are other sexual health barriers that disabled people face, for example, if someone has limited use of their hands, how can their check their breasts/testicles for lumps?  Which can make the NHS advice for women who can’t have mammograms that bit more difficult… and certainly adds to the following horrific statistic:

“Disabled women don’t have the same access to screening for breast and genealogical cancers as non-disabled women, and are up to three times as likely to die of breast cancer.”
Disability Horizons

Unfortunately, this tends to mean the onus is on the woman to keep pushing for screening and be their own advocate… And until things change, one of the most important things we can do is make people aware of the issues and keep talking about them.  Hence this blog post!