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.

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.

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:

straw

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 life of pain

There are a lot of posts online about how long it has taken for people to be diagnosed with Ehlers Danlos Syndrome (EDS). I was thinking about joining in as it is the helpful way to raise awareness of both the condition and the struggle that people have to be diagnosed.

However, I don’t know when I first became aware of my symptoms. For me, they were normal. I remember coming out of exams in school surrounded by friends who were telling me how much their hands hurt. My hands hurts so badly that my handwriting was virtually illegible, my pain was through the roof and I hadn’t been able to write everything I wanted to. I assumed my pain with the same as theirs and that I was weak, overly sensitive and over-dramatic. I didn’t know my pain wasn’t normal.  I didn’t know what I was experiencing wasn’t ok.

I was told over and over again that I was useless at sports and PE because I was unhealthy and unfit.  I assumed the pains shooting through my legs were because of this.  It never clicked that it was or could be something else.  I restarted dance lessons when I was 12 because I wanted to get healthier.  I quickly lost track of the number of times my ankles rolled and twisted and sprained.  We did a week of performances in the summer of 2000.  I danced every night on a strapped up, sprained ankle.  I went to school and walked around as if everything was normal.  Because for me it was.

My friend’s mum was horrified and suggested I try this and that to reduce the pain.  I was used to a mother who glossed over these things.  To have someone treat my pain like it was legitimate and a big deal was weird.  But sprained ankles come and sprained ankles go and after all, this was an intense week – I was performing every night for a full week and walking round school and walking home.  All of this factors came together to explain why this particular pain was so bad.

As I got older, I still carried the baggage of being dismissed, invalidated and told I was in pain because I was unfit.  It took breaking down in tears with my then partner because of the pain in my hands before I really started to realise that this wasn’t normal.  That people didn’t go around in pain day after day.  That people didn’t get shin splints from a short walk.  That writing notes in lectures shouldn’t leave me in agony.  I had lived with the pain for up to twenty years before I realised this.

I don’t know when I first noticed my pain.  I don’t know when it first became a problem.  All I do know is that by the time I was 22, I had finally realised this wasn’t normal.  This was the start of my journey towards a diagnosis.

Unfortunately, the first step on this journey involved a rheumatologist telling me I was hypermobile but it wasn’t a problem, that I was experiencing growing pains and that I would grow out of it.  He couldn’t understand why I burst into tears.

I was living in agony, I had realised that this wasn’t ok but here he was telling me that I was fine.  I spent the next couple of years in a weird grey space, not quite sure if I was overreacting to my pain, not quite sure if I was being dramatic and not quite sure if I was just overly sensitive.

I am now 32 and I know that my pain is real, I have a diagnosis and I have pain medication.  But I still ask myself whether I’m faking it or not.

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 12th 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 17th 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 17th 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 19th 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 20th 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:

EDS: What to do with a dislocation

I’ve been meaning to write this for ages but a friend asking me advice about her not-quite-in-the-right-place joint reminded me.

Please note, none of the following should replace medical advice and certainly isn’t relevant if you don’t have EDS.  If you don’t have EDS and think you may have dislocated a joint, go to A&E.

If you have EDS and are prone to full or partial dislocations then the following information may be helpful.  It came from a physio who works with people with EDS.

If you lose feeling in the limb or it gets cold or starts turning blue, then seek emergency help.

If not, then a good rule of thumb is that if it came out, it will probably go back in again.  But first the muscles must relax and this is what you can work on.  If you go to A&E, then they are likely to anaesthetise your muscles, then force the joint back.  Once the anaesthetic wears off, your muscles will then freak out and it’s likely they’ll pull your joint out again.  This can get you trapped in a vicious cycle which can result in long term deterioration.

Instead of force, try a gentler approach.  Everything I’m suggesting is with the aim of relaxing those muscles.

  • If you have pain medication, take it as prescribed, no need to be a martyr.
  • Take a few deep breaths; panic will make things worse.  If you panic, you increase your body’s stress which can lead to spasms which can make things worse.
  • If you have relaxation techniques, use them.  If not, maybe make a note to look into them when this is over.
  • Support the joint with pillows or a sling as this will take the pressure off the muscles.
  • Heat can help to relax the muscles, as can gentle massage – but only if you can tolerate it.  Remember we are trying to relax here, anything that adds to your pain or stress levels is unhelpful.
  • Use distraction.  This aims to reduce any panic or stress you might have about the joint.

But all of this will take time, that might be hours, it might be a few days.  And at some point you may still need to seek medical help.

Afterwards, try and see a physio to get advice on exercises that might be able to help strengthen or at least maintain the muscle tone around the joint.  You want to try and prevent it from happening again, so looking at what you were doing at the time may also be useful.  Can you do things differently in the future?  Can you get some equipment that might take some of the strain?  It might not have been the physical action itself either, it could be that you were particularly stressed or tired and that made you more susceptible to an injury.

How to be a carer, part three

If you’ve read the previous posts, or lessons, you might be aware that its important to keep in mind how much better you are than the client.  You are wiser, more intelligent, more able and just overall a much greater human being, after all, you contribute to society selflessly every day.

Golden rule: Assume the client is stupid. They need care and you provide care, therefore you are better than them.

Keeping that in mind, you must also be ready to step in with advice at every chance, preferably before being asked.  It doesn’t matter that you don’t know anything about the client’s condition and that you haven’t bothered to learn anything, you are the better human here so your advice should be taken as gospel.  This is especially true when treating symptoms and administering medication.  Whilst this might have been covered during training, you should forget everything you learnt.  Ideally, don’t pay attention to the training and if any of it does seep in, do your best to erase it.

If the client asks you to do something you don’t want to, just don’t do it.  It is that simple.  Don’t refuse, just make out that you have done it or don’t mention it again.  Related to this, what the client does that day should be dictated by you.  If you want to go out for coffee, that’s absolutely fine, just tell them over and over again that its the perfect day for a coffee or other activity that you want to do.

When the client is busy doing things, it’s best to either a) interrupt with pointless questions or b) sit and stare at them.  This is great because communication and spending time together are important in relationship building.

Expect the client to micromanage you.  This way you do the bare minimum work and if anything doesn’t get done, or doesn’t get done well enough, it’s not your fault, it’s the clients.

That said, you should use your initiative when it comes to things like medication.  Remember that golden rule… The client is stupid and they don’t know what medication they really need…

During showers, the priority is to keep yourself dry, don’t worry too much about actually washing the client.

Argue with everything the client says.  The sky is not blue, it’s shades of white and grey.  This is really good as it keeps the client’s mind sharp.

Tell the client that you don’t want to be a carer. It makes them feel extra special and really grateful that you’re doing it for them.

Follow these simple guidelines and you’re well on your way to becoming a fantastic carer.  All your friends and family will admire you for helping those less fortunate people and heap praise upon you for how you suffer for others.