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!

EDS and drinking, take two

Four or so years ago I wrote a blog post about EDS and drinking and felt it was time for an update!

What are the issues with EDS and drinking…

• you may not be able to swallow or have a limited swallow.  In my case I can drink some things and not others.  Generally when people can’t swallow liquids very well they are advised to try thicker drinks. In my case this concept is reversed, I can’t drink thick drinks but can do water and squash and thin liquids.  I also can’t drink anything with sugar in.  No idea why this is the case but wanted to mention in case it helps someone else identify a pattern in their own swallowing.
• you may not be able to lift a drinking vessel
• you may not be able to open a bottle with your hands or a sports cap with your teeth
• you may have a tendency to spill or drop drinks
• you may need to drink more than the average person to manage POTS

What are the solutions?

Contigo Autoseal are still my go to for hot drinks and I still haven’t had a problem with the flask mentioned in my first post about this subject!  They have a couple of designs so it’s worth having a think about what will be best for you.  I find the ones without handles easier but the ones with handles do have locks for added security.  The button you press to open the mouth bit is fairly easy to press but not so easy it’ll get pressed in your bag.  You can also get a replacement lid if you ever need to so you won’t need to throw the whole thing away.

Note of caution: your drink will stay hot for hours. If you want to be able to drink it soon, add some cold water!

Straw wise, you’ve now got a range of options which is amazing!  There is lots of advice out there now in response to the straw bans but I find this from @rollwthepunches particularly helpful:

Hopefully it will help you think through your options.  Personally I use metal straws for cold drinks and I have a little pouch that I take out with one in so my bag doesn’t get wet after use.  I also take out straws which are made of plastic designed for hot drinks, a bit like these from Serephina’s Kitchen.  Note, don’t use the metal ones for hot drinks!!!

I’ve tried glass straws and liked them for drinking wine – it felt classier than using plastic or metal – but my carers ended up breaking them all.  All of these can be hard to clean if you have hand issues so do consider that as well.  Some can go in the dishwasher and this might be something to think about if you don’t have someone who can help you clean them.

When it comes to cold drinks, I get through ridiculous amounts of squash and diet fizzy drinks in a day.  I’m talking 5 to 6 litres a day.  Obviously this means I don’t leave the house without a bottle and that bottle is one from Hydrate for Health.  It pops in the side pocket of my wheelchair bag and the long straw means it reaches round the chair and clips onto my coat or skirt or whatever.  Without it, I’d be asking my carers to open a drink every two seconds…  I also use it overnight.  It hooks onto the trolley by my bed and means I can easily drink when in bed.  I can even drink laying down, all I have to do is move my arm!  You can also buy replacement bits which is great – I have two bottles and have had them for years now but from time to time I need a new clip or straw and I like that I can get them separately.

At the other end of the size spectrum I have a Contingo Autoseal water bottle which is a mere 300ml and has been to Cambodia and back with me.  When I was on the plane, I got it refilled with water and hence didn’t have to bother with plastic cups.  I have absolutely no issues with it and, like my flask, have had it for a number of years now!

During the day I like to drink fizzy drinks and the hydrate for health doesn’t really work for that so I use those plastic cups with lids and straws.  You can find them in bargain home stores and have grown in popularity over the last few years so are fairly easy to find.  If you don’t know what I’m talking about, look at this one from amazon but note that you can normally get them for less than £3.

Safe Sip drink covers can another great product and can be used on wine glasses! They are easy to use and small enough to carry with you if you’re going out.  Pop them in a little pouch with your straw!

A short history of prosthetics

Prosthetics have both a practical purpose and an emotional one, with some people feeling that they help to make them whole.  In ancient Egypt, there is evidence of a woman with a prosthetic toe that is made from wood and leather and some people say wouldn’t have affected her ability to walk.  Those people hypothesise that because they were a sandal wearing culture, she had felt it important to her identity to have the prosthetic.  Others believe that it will have contributed to her ability to walk.  Either way, I think it’s pretty amazing that we have evidence of prosthetics that old, especially given the materials they were generally made with.  In Egypt they were made from fibre and wood and echoed the importance they placed on wholeness.

Another early example is an artificial leg that dates back to about 300 BC.  It was found in Italy and was made of bronze and iron with a wooden core.  It’s thought this was held in place by a leather belt.

Whilst we tend to think of a prosthesis as replacing a limb, they are used to replace other body parts including eyes, breasts and teeth.  And when it comes to teeth we find a lot more literature.  Did you know, for example, that at one time hippo ivory was used to make false teeth as it was stronger than alternative ivory and didn’t yellow so quickly.

Etruscan false teeth from between 8^th and 3^rd century BCE have been discovered as have sets of false teeth which were made from animal teeth or even human teeth and were connected to intact teeth with a metal band.  Anyway, I don’t like the dentist and all this talk about teeth is too much for me….

Hook hands, peg legs and iron hands were used from roman times to the end of the middle ages with little advancement in technology.  In the 16^th century, a hinged arm and a locking leg were invented.  The heavy iron was replaced by a mix of leather, paper and glue tanks for a French locksmith of all people.  We also have to thank watchmakers for contributing to the development of prosthetics as gears and springs were used and needed a careful approach for the intricate parts.

The history of prosthetics is about the history of the prosthetics of the wealthy, or lucky, as is often the case today.  Knights may have been fitted with them because of their status but possibly also because the history of prosthetics has always been intertwined with the history of wars and the soldiers that fight in them.  We know of a roman general that lost his hand and couldn’t fight, but with the aid of an iron prosthetic that could hold his shield, he was able to retain his identity as a general and presumably return to war…

Around 1800, a breakthrough was made in the mechanics of prosthetic limbs by James Potts.  His ‘Anglesey’ leg had articulated parts and used cat-gut tendons to hinge the knee and ankle, creating a walking motion when the toe was lifted.  This design was further developed by adding a heel spring.

The American Civil War saw many many limbs amputated and the US government supplied these soldiers with prosthetics, allowing them to return to work…. So kind!  This vastly increased demand and presumably there were tweaks to design at the same time.  Midway through the war, a new way of attaching the prosthesis was developed that used suction rather than straps.  Another prosthetic that came from the war was a rubber hand which had fingers and was able to connect to an array of attachments.

World War One also saw an increased demand for prosthetics but poor designs and poor fitting led to many going unused.  Common complaints included pain related to friction between prosthesis and the amputated limb and the weight of the prosthetic.

Throughout most of history, prosthetic limbs were wood or metal although I read about one that was made from plaster and animal glue and another that was iron with a wooden core.  More recently, lighter options have become available.  Lightweight aluminium combined with the suction attachment made for more practical and more affordable options and more recently plastics and electronics have followed.  Another big change is around the look of them.  Historically, prosthetic limbs have been designed to replicate the limb and to make other people feel comfortable but in recent decades, there has been a noticeable move towards function over appearance.

In the 1960s, children affected by thalidomide were born with malformed limbs and technological solutions to medical issues were sought.  These came in the form of personalised prosthetics which sped up the advancement of this area.  Gas powered prosthetics were invented to help children and whilst they may have sounded great, and certainly I’m sure some kids found them helpful, others found them difficult and cumbersome.  They required a lot of time away from home to fit them and teach the children how to use them and this obviously had to be repeated as the child grew.  Further, as the child grew up, they wanted to be able to do more with their prosthesis such as feed themselves, write and go to the toilet by themselves.  To be able to do these tasks would make mainstream school accessible.

Gas had been chosen as a power source because batteries at that point were impractical.  As time went on, other ideas were considered and someone thought that a more modular system might work and by this point technology had shrunk making batteries more practical.

In the 1990s, knees that used computer chips were introduced.  The chip controlled the speed and swing of the knee joint and sensors provided feedback.  In 1998 the first electric arm was fitted.  The i-limb was the first prosthetic to have individually powered fingers and gave the user more control and more feedback.  As well as limbs that allow for walking, we have seen limbs that are designed for running and other sports.

Today we are seeing a more personalised approach to prosthetics including the alternative limb project which seeks to go beyond the replacement of a limb and creates imaginative and personalised options.

Links

• BBC: Prosthetics through time
• Amputee Coalition: A history of prosthetics
• UNYQ: The history of prosthetics
• The Conversation: how the ancients invented prosthetics
• Mosaic: prosthetic legs through the ages
• Jstor: A brief history of prosthetic limbs
• War and prosthetics
• Thalidomide

A short history of feeding tubes

Whilst you’re probably vaguely familiar with nose and stomach feeding tubes, it hasn’t always been that way… rectal feeds were once the only way… and up until the 1940s the rectum was used for water, saline and glucose solutions.

The first recorded attempt dates back to ancient Egypt when reeds were used to give rectal feedings of chicken broth, wine and eggs. Rectal feeding was used as there was no way to reach the upper GI tract without killing the patient.

There is a long period before any known, recorded developments in artificial feeding.  In Spain, in the 12^th century Ibn Zuhr attempted parenteral nutrition, supplying nourishment intravenously to a human with the aid of a hollow silver needle.  It is unknown how successful it was.

A few centuries later, in 1598, Capivacceus used a hollow tube with a bladder attached to one end to reach as far as the oesophagus.  This thinking was developed and in 1617 Fabricius ab Aquapendente used a silver type of NG (nasal gastric – nose to stomach) tube that went as far as the pharynx for patients with tetanus.

In 1646 Von Helmont used leather to create a flexible, hollow tube that patients would swallow and it would feed into the top of the oesophagus.  A syringe was used to deliver blended food.

By the mid 17^th century, thinking was focused back on parenteral feeding:

“The idea of providing nutrients intravenously in humans was first realised when Sir Christopher Wren injected wine and ale in dogs way back in the middle of the 17^th century.”
– Ahmad Fuad Shamsuddin

Wren had invented an IV made of goose quills and porcine bladders and was also able to give opiates to dogs through this.  There were issues and in 1710 Courten concluded that fats needed to be manipulated before being administered through an IV.  Despite these developments, IV feeding is a fairly new therapeutic tool.

In the 1700s physicians experimented with blends of wine, eggs, jellies and milk and in 1710 it was suggested that the leather tube could be used to reach down into the stomach.

Another stepping stone in the history of feeding tubes saw John Hunter, in 1790, using whalebone covered in eel skin attached to a bladder pump to feed a mix of jellies, beaten eggs, sugar, milk and wine.  In the early 1800s, food blends included thick custards, mashed potatoes and pre-digested milk, whatever delightful thing that is…

During the first half of 19^th century stomach pumps were used to feed severely mentally ill patients in England but it wasn’t a straightforward technique with complications including stomach lacerations and drowning in beef broth…

Apparently it was in 1837 that the first gastronomy was suggested.  That is a tube which goes into the stomach through the tummy.  It was attempted around 1845 but there were many complications including infections which couldn’t be dealt with as antibiotics hadn’t yet been created.

In 1867 Kussmaul introduced a flexible orogastric tube – a tube that goes from mouth to stomach rather than nose to stomach.  Three years later, in 1870, Dr Staton was the first surgeon in the US to perform a gastrostomy with long term survival.  The patient was an 8 year old boy.  Another four years and Ewald and Oser would introduce a soft rubber tube.

It would be 1878 before the first jujunostomy was attempted – that’s a gastrostomy which goes into the duodenum instead of the stomach.  But rectal feeding was still about and in 1881 the US president James Garfield was kept alive after being shot by being rectally fed beef broth and whisky.

Moving into the 20^th century, we the early days of the central line which would lead to IV feeding and parenteral feeding as well as soft flexible tubes introduced to make artificial feeding more comfortable and more successful.

Unfortunately, paralleling this was the forced feeding of suffragettes.  This was a torturous affair made up of brutal attacks.  A primitive method of feeding was used that was painful – the tube through the nose was often too large and any resistance from the prisoner lead to further pushing, if the nasal tube failed, a throat tube was used which involved a metal spring gag.

Around 1910, Einhorn began experimenting with NJ tubes and shortly after, in 1916 continuous and controlled delivery of liquid nutrition was suggested when it became clear bolus feeding was not always tolerated.  The Levin tube, introduced in 1921 was very stiff and thicker than the tubes used today which are made of soft polymers such as silicone and polyurethane but was presumably progress then.  Another development came in the 1930s with feeding via a pump.

The literally life changing discovery of modern antibiotics in the 1940s changed the landscape of artificial feeding dramatically.  Many of the surgeries that had failed because of infection were now viable.  This was developed further in the late 1940s when polyethylene tubing began to be used and the first enteral feeding pump was developed.

In the 1960s, with the focus on space travel, work was carried out on nutrition to help astronauts get the right food and prevent malnutrition.  This information would later be used to create the formulas used today in tube feeding.  These were further developed in the 1970s.

In 1979, the PEG insertion technique was developed and performed on a 6 month old in the US.  This is a common method still used today which uses a cut in the stomach and an endoscopic tube – hence percutaneous endoscopic gastrostomy.  It’s this kind of insertion that I had.

I’ve written before about how grateful I am for my feeding tube, it has given me back my life and I am also incredibly grateful for all those innovative thinkers and all those unfortunate patients that have gone before me.  Thank you.

Sources and further reading:

• High Points in Feeding Tube History, Janice Fordyce
• Tubefeeding, a brief history
• The history of nonsurgical enteral tube feeding access, Gail Cresci and John Mellinger
• Brief History And Development Of Parenteral Nutrition Support, Ahmad Fuad Shamsuddin
• The History of Surgically Placed Feeding Tubes, Gayle Minard

EDS Rehab

Some of you might know that I’ve just started a three week pain management programme to try and help me manage my Ehlers Danlos Syndrome.  Well, we had a rocky start and a few issues with the hotel but today is day three and things seem to be going a bit more smoothly.  The rest of the group are lovely and friendly which I think will really make a difference, particularly as the weeks go on.

Whilst I’m not going to be sharing everything we’ve been doing, there are a few things that I think other people with chronic pain might find helpful and some other info that you might want to know if you’re considering coming.

Hotel

First of all, there are two versions – one run in a hospital and the other in a hotel, mine is the hotel version so I can have care with me.  This meant that I was assigned an accessible twin room.  Thankfully I am able to walk a little way otherwise I think I’d have had to go home again…  The room is tiny, the twin beds are essentially one big bed and I can’t get my manual or electric chair to the bed.  There certainly isn’t space for transferring.  Ditto for the toilet and the shower is so tiny that anyone much bigger than me would struggle.  It does have a shower seat but when it’s down there’s no space for your legs…  It’s certainly been an intimate experience when my carer has showered me…

The rooms that the hospital use all seem to be on the lower floor and there is a wheelchair platform lift as opposed to a regular lift.  We used this once when we arrived and I think we broke it. No one asked how heavy my electric chair was and it was only when I was going up it in my manual yesterday that I noticed we were probably 100kg over the maximum weight…  This means that if I want to go to reception or the restaurant we have to go to the far end of the building and then out the fire exit, through the car park and back into reception.  This isn’t great but thankfully isn’t raining… Although the fire door gets locked from the inside at night so we have to arrange for someone to meet us there and let us in.  Last night we also discovered that a door between the main corridors and rooms and the fire exit gets locked at a certain time so we couldn’t get in that way… This poses questions about how I get out in a fire as it’s the only ramped fire escape… Questions that so far the hotel have been unable to answer…

Pain

Up to now we’ve done some one to one work with a physio, an OT and a psychologist and had some talks about what pain is, the psychological element of pain and such things. In one of these sessions, we were shown a really interesting Ted Talk which shows the role of the brain in interpreting pain:

This is not to say that the pain is “all in your head”, you are not making the pain up but your brain has an important role in pain.  As Moseley explains, your nerves send signals to your spinal cord which passes them onto the brain for interpretation.  It is here that our bodies decide whether something is a threat or not.

In people with chronic pain, the messenger system which conveys sensations to brain can become over sensitive and sends more messages to the brain about stimuli and sensations.  The spinal cord also becomes really good at hearing these messages so it picks up on quieter messages and hears them more loudly.

We’ve also been looking at how prior experiences, beliefs, culture and relationships affect how we feel pain and how we think about it.

One of the really interesting points was that when you are experiencing a pain flare up, your body reacts in a very similar way to how it would if you were being chased by a lion – flight or fight mode.  This explains why your temperature changes, why your heart races, why you can struggle to breathe etc when pain is high.

I’ve also been given a few different physio exercises to try and strengthen my weak muscles and stretch out the tighter ones which we’ve been practising in my room.  Of course this all means increased pain right now and fatigue but it’s different pain to my normal pain so I’m taking that as a good thing!  And I get to do hydro which is very exciting!

Snow, and the kindness of strangers

“I wonder if the snow loves the trees and fields, that it kisses them so gently?”
– Alice in Wonderland

I had originally planned to write this post for Christmas Day but what with my recent stay in hospital things have got a bit off plan!  I’m now home which is great and, whilst this isn’t the end of my swallowing troubles, I am sleeping in my own bed, I have my stuff around me and I’m not getting woken up at 5.30am to be told my blood pressure is low.  Side note, it’s always low, especially at that time of day…

Whilst I was in hospital, it snowed.  The first time it snowed, it came in quite a flurry and a lovely stranger took me for a walk to see the hospital’s Christmas display in the snow.

Another side note, this guy was so lovely.  He was there to see a friend and we’d said hi a couple of times but on this occasion the doctors were with her so he pulled up a seat and started chatting.  Then he said that I must be bored of being on the ward and had I been for a walk. I explained I couldn’t cos I need a wheelchair and can’t propel myself.  So he got me into my chair and off we went!  It was so great to be off the ward and really nice to see the snow.  His friend got discharged shortly after.  Then, a couple of days later, he appeared on the ward again!  He was passing by and was popping in to see if I was still there and if I was ok.  He dropped by again earlier this week and took me for another trip around the hospital and wanted to know if there was anything I needed that he could pick up for me.  It was really nice of him.  He had no reason to do any of that and he wasn’t trying to hit on me or anything of the sort, he was just really kind and thoughtful and being retired he had the time to do that sort of thing.  

Anyway, back to snow!

“Heavy snowflakes fall, flying in all directions but when there is no wind, they descend so slowly that they seem determined not to land on the ground.  When in fact they do touch the ground, they vanish completely”
– Thomas Merton

We think of snow as being the weather of Christmas but in actual fact, Christmas is generally just the beginning of the snow season.  In the UK, we are far more likely to see snow from January to March than in December.  I find this interesting and perhaps instead of seeing Christmas as peak snow time (which I suspect most of us do) we should see Christmas as the start of snow time.  The beginning of something.  I haven’t fully formed this in my head but I like the idea of Christmas marking the start of something.  Almost everything else positions Christmas as the peak, we focus a lot on the run up to the day and then for many people, the day and the period after are sort of an anticlimax or the bit after which is less important.  I’m going to blame hospital funk and not being well for this lack of articulation!

According to the Met Office, white Christmases were more frequent in the 18th and 19th centuries which was also when Christmas cards and other commercial concepts started to appear.  This possibly explains the heavy use of snow in festive ephemera.

It’s important to note here that for the Met Office, a white Christmas is one where at least a single snowflake is observed to fall at some point in the 24 hours of Christmas Day.  With this definition, more than half of all Christmas Days can be expected to be a white Christmas.  But in terms of achieving that Christmas card scene with widespread snow covering the ground, the chances are much lower with 4 occasions in the last 51 years, the last being 2010.

Apparently, the snowiest winter in Great Britain was in 1947. Between the 22 January and the 17 March snow fell every day somewhere across the UK.

“You go to bed in one kind of a world and wake up in another quite different, and if this is not enchantment, where is it to be found?”
– J.B. Priestly

Snow is magical.  Partly I suspect because we, in the UK, don’t see much of it and partly because of the time of year it falls and hence it’s association with Christmas and the excitement that can come with that.

It is a strange type of weather.  It is ephemeral, occupying a thin line between ice and rain.  It coats the earth in a blanket of white but is actually translucent.  There is the fascinating, wonderful nature of snowflakes each having a unique structure.  Snow transforms the landscape, concealing the familiar.  All of this plays magnificently into the hands of poets and writers.

In snow, anything is possible.  Snowmen can come to life and take you flying across the sky.  Lions and witches can inhabit a snowy world reached through the back of a wardrobe.  Snowy nights can set the scene for Victorian-esque ghost stories.

“I thought her as chaste as unsunned snow.”
– Shakespeare

Snow is often used as a metaphor for slumber, purity and renewal.  It can convey a sense of peacefulness and quiet as well as invoking nostalgia. There is a romanticised view of snow, holding hands with loved ones as you dance across ice rinks with snow falling gently around you…

“They were playing old Bob Dylan, more than perfect for narrow Village streets close to Christmas and the snow whirling down in big feathery flakes, the kind of winter where you want to be walking down a city street with your arm around a girl like on the old record cover.”
—Donna Tartt, The Goldfinch

However, snow can also be a force of nature, it has the power to disrupt as well as kill – every year in the US, about 100 people die shovelling snow and there’s obviously more deaths from traffic accidents, from the cold etc.  And as snow falls from the clouds, the flakes stop growing and start to wither.

We see the darker side of snow in writing which depicts it as bleak or uses it to echo the icy cold hearts of characters such as Dickens’ Scrooge.  In The Long Winter by Laura Ingalls Wilder we hear of how her family almost starved to death during “blinding, smothering, scratching snow”.

Snow, it seems, is a powerful tool in a writer’s toolkit.  Whether you use it to create joy, to create children laughing and playing or use it to create catastrophe, death and destruction, have fun with snow in your writing this month.

 

Disability and sexuality, part 1

I was on a train about a year ago, the first time I’d been on a train in my wheelchair. I was sat in the wheelchair section along with some guys off to a football match. It was ten in the morning and they’d been drinking. And were talkative. I ended up left alone (as far as I was aware – it turned out there was a women round the corner listening to this who only spoke up once they’d got off the train…) with them for the 22 minutes between York and Leeds. And they were awful. They completely invaded my space, leaning on my chair and many other things which I’m not going to go through. But then, basically out of nowhere, one of them asked if I could have sex what with being in that thing, insert wild gesturing towards my chair. What the f***?

I’d “known” them about ten minutes and now they wanted diagrams about my sex life. And felt it was completely fine to ask for them. Not ok. Way way way not ok. But I was alone with them and had no idea how far they were travelling and I couldn’t move to another part of the train.

So I handled it in the only way I felt safe, with humour and changing the subject. Inside I was fuming and wanted to have it out with them about how inappropriate it was but I felt too vulnerable. If they’d turned nasty, I’d have been stuck. Indeed, when they left one of them hugged me and the other full on kissed my lips. Again, not ok.

But… and I am in no way excusing their behaviour, society paints people as asexual so when they were faced with a young woman in a chair I suspect they genuinely couldn’t put two and two together. I suspect they’d have hit on anyone who was female and near them on the train but it just so happened that it was me and my disability. And I think it threw them through a loop.

Which is why we need to talk about disability and sexuality.

So, can disabled people have sex?

Yes.

Wait, you want more than a one word answer? I think you’re probably wanting to ask how disabled people have sex then. And the answer is long. Probably infinite. Because, like with abled bodied people, everyone likes different things and is capable of different things. Indeed the sex that a disabled person has will probably vary depending on the partner, like with abled bodied sex…

But isn’t it a bit rubbish?

No. Again, everyone enjoys different things and are able to do different things.

I think it’s important to remember that we have mental disabilities, sensory disabilities and physical disabilities and obviously they will all have a different impact on sex. Often the difficulties people have in understanding how disabled people have sex is with regards to physical disabilities. Issues around learning disabilities tend to focus more on before sex, in particular around things like consent. And people seem to on the whole forget about mental illness when talking about how disabled people have sex… FYI, depression, anxiety and other mental illnesses can impact on your sex life. Perhaps that’s a different blog post.

Go on then, how do you do it?

Firstly, what do you mean by sex? So many people are referring to penis in vagina penetration when they talk about sex. Which is so uncreative… I can’t have penetrative sex as I’ve discussed here previously but I still enjoy lots of other things. You just need to explore more, see what works for you and your partners. Kiss, cuddle, use sex toys, make use of the bed raiser, have strategically placed cushions…

And communicate. The odd grunt and groan here and there probably isn’t going to cut it – can you tell the difference between the “keep going that’s amazing you’re rocking my world” groan and the “shit, my hip just dislocated but I don’t want to say something and ruin the mood” groan? Make it sexy, make it dirty, make it intimate.

You might need to talk beforehand about some things – where are you in pain, where should I avoid touching you, what happens if…, is the bed or the floor or the bath best for you, how does your disability affect you when it comes to sex…

There might need to be another person involved for example to help you get undressed or to get you onto the bed etc.

And if things go off course, humour is helpful. Except if you’ve just accidentally knee-ed your male partner… Turns out that’s not so funny… Oops!

But other than that, it can be a lot like “normal” sex.

Sexuality and disability has information about sex with partners and masturbation including ideas for particular conditions etc. And talk to your professionals.  Some of them will be squeemish and not answer your questions or try and deter you from having sex but that’s their issue not yours.  Keep trying until you get the info you want.  Sexuality is part of who you are and a healthy sex life can be great for your overall wellbeing.  Plus, orgasms are apparently great for pain relief.

Have fun and stay safe!

Personal strategies for living a good life

One of the last sections of my Future Learn course is around personal strategies for living a good life with an impairment.

“Because disability studies collects a huge range of impairments, each of which are experienced differently in everyday life and have different impairment effects, there is no end to the personal strategies people with impairments use to support a good life.”

That being said, it does suggest some examples; community, the spoon theory as a means of helping people understand and mindfulness.

I started to respond with my own personal strategies but ran out of space so I thought I’d carry on over here and invite your ideas and strategies as well.

Community

Online community is a huge way I cope with things. I blog and use twitter to “meet” other people with my condition which helps me feel understood as well as having people to offer helpful tips such as what bottle opener works best. These friends also understand the impact of society and it can be so helpful to know you aren’t alone in dealing with things such as access issues or abuse. Indeed, it helps me to realise that I am not the problem, if it’s happening to other people then it’s not about me personally. I could rationally reach that conclusion but the individualistic nature of western society can really make things feel personal.

Pacing

Pacing is one of my really important strategies. If you have chronic pain or fatigue, do look it up. It’s the idea of doing something for slightly less time then breaking then going back to it rather than doing a lot of something all at once and then paying for it.

Humour

Humour is essential. Admittedly, my humour tends to be dry, sarcastic and biting but there you go.  The first day I had care we got into a bit of a mess getting changed. It, like a lot of my life, is undignified and humour can make it easier to cope. It can still get me down of course, it just means I’m not always down about it.

Without a degree of humour, it’s hard to let someone else wash you intimately.  It can become tense and awkward if you let it.

Action for change

This is something mentioned by one of my fellow students.  Instead of coming up with personal strategies to navigate a world which isn’t designed for us, we should challenge that society.  And I think this is really important and there are lots of ways of doing it, from raising awareness by sharing your experiences to hanging off a bridge in your wheelchair.

A moan

It’s not a very fashionable thing but having a bit of a moan from time to time can help.  Don’t get stuck there but getting frustrations off your chest can be cathartic.  And can help with awareness raising!

Support groups

This should probably be included with community but there’s something more specific about a group of people who are experiencing the same things as you.  With that shared knowledge, you can problem solve, you can suggest ideas which have helped you, you become more aware of shared issues and can come up with ways to address them.

Netflix days

Sometimes, we need a down day.  And if that’s watching netflix in bed, do it.  I remember a conversation with a friend who has mental health issues where she was describing how helpful it can be to give yourself a day to indulge in things.  So long as you have a day or time in mind to force yourself back out of it.  My fear of giving in and not getting out of bed has long been that I’d just never get out again.  So this ensures that won’t happen (sort of) whilst giving you the crash time you might need.

Acceptance

God, grant me the serenity to accept the things I cannot change,
Courage to change the things I can,
And wisdom to know the difference

– Reinhold Niebuhr

I’m not religious or in AA but the sentiment expressed in the serenity prayer is one that I think is important when it comes to coping with long term illness and disability.  There are lots of frustrating things I can’t change – I can’t make myself better for example – and getting stuck in a place where I’m angry about it isn’t helpful (there’s a grieving process around coming to terms with acquired disability which is fine, but it’s not a place that’s nice to get stuck in).  It’s taken a long time but I feel I’ve mostly accepted my illness and that’s so much better for my mental health and wellbeing.  And then there are things I can (attempt to) change such as my old workplace being inaccessible.  And this is a much healthier way to use my frustrations and anger.

Creativity

Whether it’s a page in my art journal or a bit of work on a canvas, creating things helps me in many ways.  It’s a distraction from my pain, it gives me a sense of achievement, it’s a way of expressing myself and probably helps in other ways that I’m not really aware of.

***

What strategies do you have?

Carriage clocks* and more

Retiring at 29 wasn’t part of my life plan. Not that I really have a life plan. But, like most people, I assumed I would spend my adult life working and, given my pain and the ever increasing retirement age, I’d have to leave on ill health. But i was expecting that to be in my 50s or so.

not an accurate picture of my retirement…

But increased levels of pain and fatigue have sped things up. I’ve done all i can to keep working :

• I’ve had numerous access to work assessments and been provided with lots of helpful equipment and taxis to and from work
• I reduced my hours to four days a week
• I tried working at home
• I reduced my hours to three days a week
• I looked at spreading my hours across the week, more days but less hours
• I’ve carefully organised my leave to ensure I got regular time off
• I tried to get the employer to understand how their partly inaccessible building made my day so much more difficult

But even then I still couldn’t make it through my three day working week. At the end of a day in work I would get in, collapse into a chair and struggle to give my carers coherent instructions. And I would spend all my none working days recovering from work. And there were parts of my job, such as phone calls to the public, that I wasn’t comfortable doing when I had taken increased pain relief. As well as the physical issues, the mental exhaustion and fog made it hard to think and assess situations as fast as I know I can.

So, in early February I put in my application for retirement and went off sick. It’s taken a lot longer than it should but I finally have a leaving date – 20th may.  I will also receive some pension as well, details not yet known, which will help me financially.

I have had numerous people tell me “Ooh, I couldn’t do that.. I’d get bored..” and have come up against medical people who have been less than supportive and haven’t even attempted to understand my circumstances.

An illustation: I saw a pain doctor for the first time a few months back, I normally deal with a lovely woman who is all about maximising quality of life.  This guy may have read my notes, but quite probably hadn’t.  He asked what medication I was on and I went through it and went on to explain that I was hoping to reduce some of the morphine because I was stopping work.  He said “from a pain management point of view we would not recommend this”.  I started to justify my decision but he didn’t want to know.  He kept repeating his statement, even when I started to cry.

This isn’t an easy decision.  It’s not something I’m taking lightly.  I haven’t done it on a whim.  I have tried all the options available to me and cannot find a workable solution.  And this is with the most supportive manager and team that you can imagine.  If I can’t do it with them, I can’t do it anywhere.

The other standard reaction is jealousy.  Which I find difficult because I don’t want to be doing this.  The rest of my life is stretched out in front of me with nothing in it.  Literally, I have no plans this year except hospital appointments and a trip to Oxford (this has a lot to do with the door and carer situation but the point is there).

I’ve not worked in three months and, even before that, I knew I needed to be careful because this was a risky time for my mental health. Again, things haven’t been helped by the door opener not being in place making me housebound and not getting all my care hours.

Up until a few months ago I had worked or been studying or both all my life.  I worked for my dad (a farmer) from an early age, basically when I could start being helpful; I started working Saturdays as soon as I could (16); I worked full time in the summer holidays when I was in sixth form and uni; I had one painful month job hunting when I left uni and then moved straight from job to job till now.  So not working is a HUGE change.

So… what next?

I am hoping to find a course to start in September on writing, craft, humanities…  I’ve got lots of interests so should be able to find something to go to for a couple of hours a week.  And hopefully I’ll meet other people who aren’t working the traditional 9-5 jobs.  Because almost everyone I know is, and that means I can’t see them during the week.  I’ve also looked at online courses through futurelearn and coursera.

I already know i need to do something creative most days and I’ve realised I need to do something intellectual on a regular basis so i came up with a list of things I need to keep doing on a daily-ish basis to help me cope with retirement:

1. Something creative – art journalling, working on some of my creative projects or wanderlust activities, writing etc
2. Something intellectual – a course, a non fiction book, a crossword
3. Something outside – when the door is fixed of course…
4. Something which helps me check in with myself – tarot, art journal, friday morning check ins (which I keep meaning to blog about)
5. Something restful – because I am still ill and still need to look after myself and give myself enough down time

What I would really like is for people to suggest more ideas for these areas and tell me how you cope with being off work, whether its long term sickness, retirement or not having a job.

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• engraved carriage clocks, pocket watches etc seem popular retirement gifts – you’re no longer working, you’re probably in your last years, have a time keeping device to count them down…?  I do not want a clock or watch for my retirement!

EDS and drinking

A while back, the lovely Beth of Mermaid in Disguise wrote about Cute Cups for Crappy Hands. And crappy hands being a subject I know a lot about, I accidentally wrote an essay in the comments section…

So I thought it would be useful to share the information here as well.

What are the issues with EDS and drinking…

• you may not be able to swallow. thankfully i can but my sister can’t and I’m afraid I’m not best placed to advise on this one.
• you may not be able to lift a drinking vessel
• you may not be able to open a bottle with your hands or a sports cap with your teeth
• you may have a tendency to spill or drop drinks

Hot drinks

Contigo Autoseal are my go to for hot drinks (the site is american but there are UK retailers, it’s just an easier way to see the whole range on their site).  I’ve never had a spill and the button to open the mouth bit is fairly easy to press but not so easy it will spill in your bag. They’ve got a few designs so you can think about what will work best for your hands.  And they come in a range of colours as well!

Note of caution: your drink will stay hot for hours. If you want to be able to drink it soon, add some cold water!

Hot Straws are also ace for when you’re out and about.  They mean you can order a hot drink and not have to lift the cup, just pop in your straw and go.  The straws also fit into most takeaway cups (through the little mouth bit) which is extra helpful.

Second note of caution: Using a regular straw with a hot drink is not recommended. There are risks around the chemicals used to make them which are then released when they get warm.  Also increased risk of burning yourself.

Cold drinks

I get through ridiculous amounts of squash in a day.  Maybe 2 litres whilst I’m at work and 2 litres when I get home. Way above the recommended 2 litres per day.  And I can’t make my own juice or fill up my own bottle.  So I need a big bottle to get me through the time when there is no one here, which I wouldn’t be able to lift.  My first thought was that I’d have to have millions of small drinks all lined up for me… But then, through the powers of the internet, I came across Hydrate for Health.  And without wanting to seem dramatic, it has changed my life!

I can drink laying down; I just hook it into the walker I have by my bed or chair, clip or drape the end over another part of the walker and I have a litre of juice in my reach. I also have one one my desk at work. People only need to fill up my juice twice a day at work say instead of every hour and no spills.  Pop it in your wheelchair bag and feed the tube round the side and you’ve got instant access to your drink whilst you’re in your chair!

As you can tell, I love it, and I think it’s probably a good moment to mention I am not on commission!  I don’t receive anything from the products I recommend here, I’m just a satisfied customer.

Also Contingo Autoseal do juice bottles in a range of sizes and are ace.  Mine is 400ml which makes it lighter than carrying a coke bottle etc and went all the way to Cambodia with me.  It meant that whenever I was offered a (non fizzy) drink, either in restaurants or on the plane, I could pass over my bottle and not have to worry about plastic cups etc.  They also come in a range of colours and if you venture into the children’s section there are also some cool patterns as well.

And not forgetting alcohol…

Safe Sip drink covers can be used on wine glasses and are easy to use and small enough to carry with you if you’re going out.  I struggle with drinking from wine glasses so I drink wine from plastic beakers with a safe sip cover.

So that, folks, is how I manage to stay hydrated with EDS.  Do you have any other tips or favourite products?