The Cost of Unnessecarily Medicalizing Acts of Daily Life

crippledscholar

A few weeks ago I found myself in the Occupational Therapy Kitchen of my local rehabilitation  hospital. My physiatrist was filming me demonstrating how I undertake various cooking tasks as a person with hemiplegia (to be shown to her medical students).

Cooking for me is both time consuming and laborious. It can take me nearly ten minutes to peel a single potato. Peeling even that one potato can leave my left wrist cramped and in pain. I generally avoid cooking anything that involves peeling vegetables as a result.

My doctor started out by having me demonstrate how I would normally complete a task by myself at home, which inevitably took me about three times longer than an able-bodied person.

Then she had me do the task over, using the adaptive kitchen gadgets that the hospital used for physiotherapy. While my actions were still slow and awkward, the tasks were completed…

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When Accessibility gets Labeled Wasteful

crippledscholar

Note on Accessibility

There has been some concerns about the contrast on this blog, unfortunately some find it hard to read light text on a dark background while others prefer it. I am looking into getting accessibility options for the blog but until then if you prefer to read dark text on a light background, this post is available on Medium here.

So there’s a debate going on, on Twitter right now between disabled people and people who either claim to care about the environment and or just want to complain about “lazy people”

The tweet that started it all

orangegate cropped

Image Description: tweet with a picture of peeled oranges in plastic containers on a grocery store (whole foods) shelf. Tweet reads “If only nature could find a way to cover these oranges so we didn’t need to waste so much plastic on them”

The original tweet has been shared…

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Christmas dinner

Are you vegetarian and looking for something interesting to go with your roast potatoes this year?  Look no further than this amazing Mushroom and Nut Wellington recipe from the Coop.  I’ve used it for almost 10 years now… It’s sooo yummy and you can also adapt it into ‘sausage rolls’.  To make it easier on your hands, chuck as much as you can into a food processor and don’t worry about the fiddly plaiting aspect – just make sure the pastry covers it.  Won’t look so pretty but you’ll save your hands for unwrapping presents!

Recipe: Swede Gratin

I would include a photo but it’s not the most photographic of foods.  That said it is incredibly yummy and perfect for this time of year.  Me and my carer had an afternoon in cooking and made 7 of these, that’s how much I like it.  It freezes well but I find it needs defrosting before cooking.

Serve with veggie sausages.

Swede Gratin

Per serving:

100g swede

30g grated cheese (I use lactofree cheese and cheese could easily be left out)

3 tablespoons flour

50ml milk (I use oatmilk)

Salt and pepper

Instructions

Use your food processor to slice the swede thinly (about 3-5mm thick roughly)  then boil for 15-20 minutes until they start to soften. Leave to cool. Once cooled, add a layer to your baking dish. Sprinkle on salt, pepper and flour then half the cheese. Add another layer of swede, pour milk over it and sprinkle on the rest of the cheese. Freeze at this stage if required.  Bake for about 40 minutes. You might need to put some foil over it if the top starts to burn.

Equipment

At the risk of sounding like an unhealthy fan, I’d like to mention a blog post by the lovely MermaidInDisguise about equipment to help with cooking.

Everyone will differ and obviously so will everyone’s finances, but here is a list of the equipment that I have or want and would recommend to others:

  • Electric knife
  • Food processor with lots of options – mine has a whisk setting, grater setting, slicing setting, mixing setting, kneading setting and also turns into a blender
  • Slow cooker
  • Microwave
  • Large handled implements
  • Light pots and pans (if you’re up to using them) and/or a bamboo steamer
  • Plastic plates and bowls (if carrying food is an issue these are very helpful and there are some nice melamine ones out there!)
  • Dishwasher (you can get table top dishwashers if you don’t have much space. Mine was from a friend who found it second hand for £25 so they don’t have to be a fortune)
  • Where possible, get equipment that can go in a dishwasher! It means you’ll be much more likely to use it if you know you can clean up easily.
  • Adapted cutlery (I can only eat from a spoon now and I use the one raved about by StickmanCommunications)
  • Keep your knives sharp. A blunt knife will just make your life harder and more painful

What is your must have kitchen gadget?

Too ill to cook?

Flicking through twitter this week I found a link to Natasha Lipman’s blog post “Too ill to cook?” which resonated strongly with me and feels like it would be useful information for many others as well.

With her permission I have quoted some of her post but do go and read the article over on her site.  And don’t forget about the useful tips section in the chronic pain cookbook!

“…cooking, mannnnnn.  That involves getting out of bed and standing around and like, chopping and doing things. Exhausting! I’ve stopped being fancy in the kitchen and am getting on with more quick and easy simple things to make sure I feed myself well with the minimum amount of effort. And trust me, when you don’t/can’t just bung a ready meal in the oven it makes things a lot harder. Whether I want to or not, I don’t have a choice about spending my energy on this.”

I know many of us with chronic pain are also limited in terms of what we eat and on the whole home cooked meals are better for us nutritionally so I hope the top tips she shares can help keep you cooking.  Please share your own as well.

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.

Collection of drinking vessels

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?

Ehlers Danlos Syndrome

Back in May, I sent this email to friends and colleagues to increase awareness of Ehlers Danlos Syndrome and also to try and help them understand what it is I have.

Hi,

First let me start by saying I don’t normally do this kind of thing… But May is EDS awareness month and given that you are probably wondering what on earth EDS is, I am going to make an exception.

Secondly, at no point will you need to dig in your pockets or navigate sticky sweet wrappers in the bottom of your bag in a search for loose change. I am concerned with raising awareness not money.

You can ignore this, read it and/or ask me questions as you’d prefer.

What is EDS and why do I care?

Ehlers Danlos syndrome, or EDS, is a heredity condition affecting collagen.  It also goes by the name Hypermobility Syndrome and various  permutations of either of these. The fact that it’s name is complicated is fitting, the condition itself is also very complicated. Different people can be affected completely differently and there are different types of EDS.

Collagen is essentially the thing that holds you together. It acts as a “glue” in the body, adding strength and elasticity. The four most common types of EDS include:

  • hypermobile EDS
  • classical EDS
  • vascular EDS
  • kyphoscoliotic EDS

All share common features, such as loose and flexible (hypermobile) joints, abnormal skin, and other fragile body tissues e.g., weak abdominal wall leading to hernias, stretchy blood vessels and varicose veins, and thin heart valves. Most people with a type of EDS will also experience fatigue.

People with hypermobile EDS may have:

  • joint hypermobility – the joints have a wider range of movement than usual
  • loose, unstable joints that can lead to dislocations and subluxations (incomplete or partial dislocation of a joint)
  • joint pain and fatigue
  • joints that “click”
  • easily bruised
  • gastrointestinal complications
  • symptoms that affect the autonomic nervous system (the nervous system that controls your automatic functions, such as breathing and urination) – this includes postural tachycardia syndrome, which causes fast heart rate, dizziness and fainting
  • mitral valve prolapse – a heart valve abnormality
  • uterine, rectal or bladder prolapse
  • urinary dysfunction
  • dental problems
  • slow bone density (osteoporosis)

And the reason I care about EDS, in particular the hypermobility type, is because I have it. Both me and my sister have inherited the condition.

Without wanting to freak anyone out, my toes and fingers dislocate daily, my other joints such as shoulders, hips and rips, fully and partially dislocate less frequently but still fairly regularly. Yes, it turns out ribs can indeed dislocate, who knew?! There is also the constant pain and fatigue. Pain and weakness make my hands very difficult to use and I can’t walk very far or stand for very long.  I take high levels of painkillers on a daily basis. More recently I have had to reduce my hours because of it and I now have carers coming in twice a day, every day to support me with things I used to take for granted.

Why should you care?

I’m not telling you this because I want pity.  Whether you care or not about my particular circumstances is entirely optional, but I want to raise awareness of EDS for a couple of reasons. Firstly, it is a highly under diagnosed condition. To get to where I am I had to go through being dismissed as exaggerating, being a hypochondriac and being told the pain was just growing pains. Given that I’m only five foot, perhaps growing pains would have been helpful! Anyway, the more people are aware of it, the more people can get a correct diagnosis.

The second reason I want to raise awareness is to get more people talking about disability and hopefully increase confidence about what to say or do around someone with a disability. I think there is still a lot of confusion about what to say or do and fear about getting it wrong.  From my perspective the key is to treat people the same as you always would; hold the door open, talk to me and not the person pushing my wheelchair, if you don’t know me don’t open a conversation by asking about my health. You wouldn’t ask a stranger about their cancer, so don’t ask a stranger about their splints. It’s generally well meaning but it reduces someone to a disability. And if you don’t know me, definitely do not congratulate me on working. This did happen a few weeks ago. The woman was probably meaning well but I don’t need congratulations for working, if you want to congratulate me about something, go for making it to Cambodia and back on my own.

As I said, I don’t want pity. I want people to try and understand. And be thoughtful. And talk to me. Not sure if I can do something or if I need help? Ask me. I honestly don’t mind people asking provided it is done considerately and not out of nosiness.

As an aside, it can be hard to talk about your own disability. There can be a grieving process which comes from not being able to do things, live the life you expected and it can be a hugely emotional process.  If you’d tried asking me about my pain four years ago, I would have fallen to pieces and been trying to hold back tears. I wasn’t ready to talk about it.

A happy ending…

Despite all of this, i am lucky enough to be surrounded with some amazing people. A lot of whom are at work. It’s things like the endless cups of coffee when I can never offer one in return, checking a bar has a downstairs toilet before we go out, putting up with my frequent “can you just write…” requests, being flexible when my taxi doesn’t turn up in the morning…. which mean I can make it through the day.  All done without comment, questions or pity.  My friends are also endlessly supportive, making meals for my freezer, making my bed, listening to me and much more.

Thank you for taking the time to read this.  If you have any questions, please do feel free to ask.  There is more information about EDS at http://www.ehlers-danlos.org/about-eds/

Helen

Chronic pain cookbook

I have a chronic pain condition called Ehlers Danlos Syndrome.  My hands are the most affected part of my body and this makes everyday things like cooking very difficult.  As they were worsening, I found that there were fewer and fewer things I could manage to cook.  So I did what I always do, I looked online for advice.  But there didn’t seem to be much… there was a lot about using food to make yourself well again but not much on food that you can prepare when you have chronic pain.  So instead I put together my own advice and recipes.

It’s based entirely on me, my likes and dislikes, my pain and my situation so it won’t be entirely spot on for other people.

Unfortunately, since having the idea of the chronic pain cookbook, my pain has deteriorated too much and I now need carers to cook for me but I hope it is of help to someone.

I’d love to hear your thoughts, feedback and recipe suggestions.

Chronic Pain Cookbook Version 1