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.

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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.

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.

Art with chronic pain

Sometimes it surprises people how much art I do given how much pain my hands are in everyday.  One of the reasons I can do art is because I dip in and out throughout the day rather than sitting down and doing an hour of it.  Having a dedicated space in my flat really helps with this as I can leave things in mid-progress.  There are other things I’ve discovered over the last few years that I thought might be helpful to share.  They may or may not help other people but I’d love to hear other tips as well.

  • Choose your medium carefully.  Watercolour involves too many stages for me so I use ink to get a similar effect for less work.
  • I use acrylics a lot but I mix them with a bit of water to make them smoother to apply.
  • Think about how you’re going to open paints and get ones which will be easier.  I got some lovely acrylics but the lids are a nightmare so I can only use them if someone is around to help.
  • Good quality paintbrushes make things much easier.  I have a few that are for children but are reasonable quality and I also use chunky handled brushes as they are easier to hold.
  • If you struggle with holding pencils, try different kinds.  I got a set of art pencils and promptly got rid of them as they weren’t for me. Instead I use learn to write pencils with push up lead as they are easier to hold and are always sharp.  For both pencils and paintbrushes, you might want to try the foam hand grip stuff to make them chunkier.
  • Think about how you’re holding pens and pencils and paintbrushes and how hard you’re gripping them.

puffin

  • As well as sharp pencils, good quality paper makes a difference if you’re sketching or drawing.  My favourite is daler rowney mixed media pads.
  • Watercolour pens are a really nice option as they get bold colour on the page with the stroke of a pen and you can then come in with a wet paintbrush and soften or change the effect.
  • Not to be confused with a water pen which is also nice and as well as putting water in to use with watercolour pens, you can put ink in and sometimes this gives a bit more precision.
  • If you can, mix it up and use your non dominant hand as well!
  • Forget implements all together and get your fingers stuck into the paint!
  • Take lots of breaks.  I work in layers a lot so I have to let them dry anyway.
  • Think about the set up of your work space.  Most of us know how we should set up our computer workspace (even if we don’t actually follow through) and the same sorts of things should be taken into account when doing art.
  • Craft knives may be better or worse than scissors, try one and see.  And if you prefer scissors, look around.  I use a pair that doesn’t need too much effort because their natural position is open.
  • Think about size – are you doing a lot of stretching to reach the top of the canvas?
  • Think about digital art – there are lots of apps for phones and tablets and these might provide a different style of art and relieve your hands at the same time.

rowntree park

At the end of the day, if you’re looking to draw or paint or whatever, you’re probably at least a little bit creative and so if you start to think outside the box you’ll find ways that work for you.

I know I have many more things I want to add to this post so I’ll probably keep it as a bit of a work in progress and just keep adding things as I remember…!

Chronic pain and the cycle of grief

Like any major change in life, coming to terms with a chronic illness takes time and you will almost certainly move through the cycle of grief.  You will end up taking steps forward and backwards and will experience each step differently at different times in your life.

Shock and denial

Under the shock and denial stage, we find a few different phases that you might be in. It might be that moment symptoms start to show, when you realise that this isn’t going away or when you get a diagnosis.

I don’t remember how I felt when my symptoms started to show as it was so very long ago but at some stage I realised that the pain I was experiencing wasn’t normal and that took quite a bit of getting my head round – why had it taken 20 years of my life to discover this?  I then also had a lot of baggage around being ill, being told i was making it up, being told to stop being dramatic etc and this did, and still does, affect how i feel/think about my pain.  Because of all of this, I don’t think I really went through the shock and denial stage, I went through a stage of feeling validated instead.

Once you have a diagnoses there tends to be a couple of ways you can feel, or both at once.  If you’ve been trying to get a diagnosis for a long time and are fairly sure you know what’s wrong, then it can come as a relief.  Especially if you’ve been told time and time again that it’s all in your head, you’re making it up, you’re a hypochondriac etc.  The other standard reaction seems to be one of pain and shock – particularly I imagine if you were expecting a diagnosis to come with a treatment and a way of getting rid of the pain.

You may go into denial and push through and try and ignore the pain and fatigue you’re experiencing because you subconsciously don’t want to stop and think about what this means for the rest of your life.

You are also probably more used to acute illness or injury and suddenly are faced with something more severe that you’re expected to live with and to carry out all the normal living stuff with pain.

Pain and guilt

Pain wise, you have to adapt to living with pain and learn and experiment with what helps to relieve your pain.  You may also have to decide how to balance things in your life so that you relieve some pain but still have a life, or how much medication you use knowing that the side effects can reduce your quality of life.

Another way guilt manifests is the increased role in household jobs that your partner may have to take on, and in some cases, your partner may have to do some or all of your care.  There is also the guilt because your condition doesn’t just limit you, it limits your partners life.  If you used to go rock climbing together, you might not be able to any more and even if your partner continues rock climbing, dynamics have changed.

A very common way that guilt shows up is when you can’t do the things you feel you should be doing.  Note the words feel and should there.

For clarification, I am not saying you should feel guilty about not being able to do x or y in your home, just that these are thoughts and feelings that are common to people who have chronic pain.

Anger and Bargaining

I think this is probably the phase where you do a lot of googling and getting second, third and fourth opinions in the hope that the answers might change.  You might want to stamp you feet and shout “no fair” at the world.  You may get angry at medical professionals who tell you there is no cure.

You may become angry at those around you because they don’t know how to help you or are actually making things worse.  You may become angry at your body because it isn’t working as it should.  Or you may disconnect from your body and see it as something separate from you, something other that you can be angry at.

You may become frustrated because your future no longer looks the same and you don’t know what it will look like.  You may prioritise work over home life or get things really out of balance because you are hanging on to your old life with fingernails.

If you’re religious I can easily see that this is when you’d start bartering with your god. What did I do to deserve this? Why me?  These are ways that anger expresses itself in the context of chronic illness.  You may also bargain with your body – if you get me through x then I’ll rest etc.

There is also anger and feelings of loss (and depression) about losing the person you used to be or thought you were becoming.  If you had a great job, very well paid, that defined you, chronic illness might strip you of all of these aspects and leave you unsure about who you are now and how you’re going to meet the bills.

This stage feels like everything is out of your control.

Depression and loneliness

And when things are out of your control, you can’t do anything to change circumstances and can become despondent, giving in to how things are or feeling defeated by your pain.

If you feel your friends can’t understand or the pain is too high so you stop doing things you can very easily become literally isolated and lonely but there is also the emotional loneliness of feeling like the only person in the world who is dealing with this.

I’m stuck with this, life hurts, why bother trying to do anything…

I’ve written about friends and chronic pain before.

The upward turn

Very few people make depression and loneliness their permanent home.  Eventually, you rally.  Your body has an innate survival drive, a will to live which overrides the narrative so far.

You may start to seek out other people who have your condition and feel less alone or you may begin to invite your friends back into your life.  At rock bottom you have nowhere to go but up and it may take time to get there but you will.

Reconstruction and working through

Here you are starting to figure out who you are with pain.  This might be where you start to look for tips and techniques for getting dressed or equipment that could help with cooking.  This is a bit of a problem solving stage and the more problems you solve, the more you start to see what you can do instead of what you can’t.

This stage tends to be more energised than the previous stages, you have more motivation and are starting to have a clearer idea of the future – whilst also remembering that pain and chronic illness can be unpredictable.

Acceptance and hope

Acceptance does not mean that what has happened and what you are going through is ok, it means you are no longer struggling against it.  Acceptance lets you build strategies and coping mechanisms.  Acceptance means you know that you will have a flare up, you aren’t in denial about it, and so you can create a flare up plan.

In the previous stage you may not have quite come to terms with the idea that this is your life, you may not have accepted that flare ups may well happen but here, you know that things will change but that you have the strength to get through them.

Hope is a strange one.  I’ve heard people talk about hope as if it means there is a cure and there isn’t for EDS and many other conditions (this tends to come from people who don’t have chronic pain, especially medical professionals).  Hope for me means that there is a chance at a better quality of life and a way of living that fits with the pain rather than struggles against it.

I also want to add that in the context of chronic illness, hope can be wasted energy.  I was asked many times if I wanted to be able to swallow and I explained that yes, I do, but also I’m being realistic and I don’t think a magic wand is coming along.  This was then interpreted by medical professionals as me not wanting to get better when actually it was a case of not wanting to pin all my hopes on something that might never happen.  In some ways, hope is a twin to worry, neither change the outcome and both require a lot of energy and brain space.  To pin everything on hope can mean you spend your life seeing dr after dr, reading paper after paper trying to find a different answer and this isn’t something I find helpful.

I am not without hope but neither am I preoccupied by it.  Instead of future gazing, I chose to spend my energy and spoons on today.  And today there is no cure.

I am not an expert but I do live with chronic pain and I do know a lot of people who have chronic pain.  Whilst it manifests differently for different people, these are stages which are very common.