Feeding tubes: PEG

For short term feeding, NG and NJ tubes tend to be used but for long term artificial feeding, a PEG is one of the main options. PEG stands for percutaneous endoscopic gastrostomy which means it’s inserted with a needle through your skin with the help of an endoscopy and creates an artificial external opening into the stomach. You may also hear this called a g-tube, particularly I think in America.

The process

The process of putting in the PEG is normally very straightforward. You get given some sedation to make you drowsy and then hopefully you remember nothing. But if you’ve had an endoscopy before then it’s much the same except they also make a hole in your tummy which will have been given local anaesthetic. My first attempt didn’t work as my stomach wasn’t quite where it was supposed to be…

When you come round you’ll feel sore, after all you’ve had a hole put in your stomach which goes through skin, fat, muscle and the stomach wall. You may experience trapped wind which is very common after the procedure and there will be pus and fluid around the site. The hospital will advise you about how to care for the site, when you can wash it etc.

If you can, the best thing to do to help yourself feel better is to move around. It’ll hurt but it’ll help. Pelvic floor exercises are another suggestion and I found variations on the knees to chest yoga pose (with gentle rocking back and forth and side to side) and ‘windscreen wiper’ pose helped with pain and with strengthening my core.

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My PEG

I’ve had my PEG exactly four weeks and I’m pretty much pain free around the site. When I had mine inserted I was very weak and had lost a lot of strength and muscle tone etc so I would think if you have the procedure done when you are healthier, you won’t have much recovery time at all.

As well as keeping the site clean, you’ll also need to advance and rotate it at least once a week. You’ll be shown how to do this and it’s really easy. I was a bit worried it would hurt (the tube gets pushed into your tummy and turned so that it doesn’t get stuck in your stomach wall) but it doesn’t. It can feel a bit strange, especially if you think about it too much, but no pain.

The feed

I’ve touched on feed already when I talked about NG and NJ tubes but I wanted to say a bit more. There seems to be a trend in the US to blend your own feed but in the UK I think it’s standard practice to use the packaged bags of feed from nutrition companies.

There are various makes and what you end up with will most likely depend on which company your hospital buys from. Your dietician will work with you to find the feed which meets your nutritional needs and which agrees with your body. It comes in bags and bottles and does not look anything like food. It doesn’t smell nice and it’s a funny colour, but in a lot of cases it’s probably saving your life so these things don’t matter so much.

The feed gets into you via a pump and you and anyone else who might use it can be trained although it’s very straightforward.

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At some point, you will spill some of the feed. In my case, when I was in hospital, the PEG came detached from the feed and it went all over my bed. You may not want to, given it’s likely the middle of the night, but act quickly. The feed dries like cement and it will stain things. Be especially quick with teddies, mine still bears a grudge about the feed which ended up in his ear…!

The other vulnerability to spillage comes if you forget to put the clamp on when you’re putting water or medication down the tube. I have a towel with all my peg equipment so that every time we do something with the tube, we put a towel on my knee.

A lot of people who are on artificial feed are fed overnight. This means it doesn’t impact on your life as much, although if you are being fed during the day there are backpacks and things which can make your life easier.

Eating, or missing eating

“Many of us have odd habits to kick the drive for oral consumption such as gum, flavored drinks, lozenges, hard candies, or even chewing up food and spitting it out!”
Tube Fed Wife

I can eat a little and can drink a lot of stuff so I’m making use of that to get flavour into my life.  For example, ice pops can be made at home in all kinds of flavours.  And crisps which dissolve in your mouth like cheetos and skips can be easy to eat and give you a satisfying crunch.  I’ve been able to go back to eating sweet potato chips provided that I don’t get them too crispy and I don’t try and eat many at once.  Adding in melted cheese also provides some lubrication which can help with swallowing.

If you or someone you know is being fed by a tube, remember that food is often much more than nutrition.  It can be a social activity, it can be the basis of your routine, it can be celebration and you’ll need to think about how you can enjoy these things despite the feeding tube.

I had a long lead up to my feeding tube so had some time to think about these things and how I would cope with them.  Because I can still eat a little and I can drink, it’s not going to be so hard as it might be.  When I go out with friends I can have a drink and watch them eat.  I’ve got a long history of eating difficulties anyway so I’m used to going for a meal and ending up with just a plate of chips.  This isn’t going to be a big adjustment for me.  Also, my social life doesn’t really revolve around food.  The same is true for celebration.  But if your life does, then having something to suck on for flavour or chewing gum or similar may help you feel more involved or bring your feeding tube into the celebrations!

And there is always the option to chew and discretely spit out your food.  Do it into napkins or take a little tub (with lid) along with you.  If you can have a tiny taster of something then do that, even if it means you’re having ice cream whilst everyone else tucks into a takeaway.

But also, look after yourself.  If you know that your friends are going to your favourite restaurant of all time and that it’s going to be upsetting to be there and not be able to eat, then join them after.  And talk to your friends and family.  This is likely to be an adjustment for them, especially if you always meet for coffee and cake.  Explain what you feel comfortable with and if you aren’t ready for food related socialising, have a think about what else you could do together and how else you could celebrate events.

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Feeding Tubes: NG and NJ Tubes

There are various different types of feeding tube which enter your body in different ways and go to different parts of it. I’ve had an NG, NJ and a PEG and I wanted to share some of the things I’ve learnt and tips I’ve picked up as I would have found them useful.

NG Tube

An NG tube goes in through your nose, down your throat and into your stomach. Having it inserted isn’t the nicest of experiences but there are things you can do to make it better. Have music playing to distract you, squeeze the hand of someone, swallow water through a straw as it’s being put in and remember to breathe. Also, you have the right to request a different member of staff if you aren’t comfortable with the person putting it in. My first NG tube was put in by a nurse who thought I was making my issues up, needless to say, she wasn’t very gentle with me. Or at all reassuring. Having a nurse that I was comfortable with, that I liked and that I felt listened to me made the experience a lot easier.

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Me and my NG tube

On one occasion my NG tube placement failed because my nose was blocked. Avoid this! For the next attempt, I got some Halls Soothers to suck on to clear my head. These also came in useful once the tube was in. Because your throat isn’t used to having a plastic tube down it, you will probably feel some discomfort. Sucking on ice pops and cough sweets can help ease this a bit (assuming you can safely manage them, check with your medical team).

I found the NG tube to be uncomfortable the whole time it was in but there are ways of reducing this or at least not making it worse. I found turning my head and keeping it turned for too long led to irritation. Similarly if I talked for too long or if I bent down. Basically anything that would move the tube too much was uncomfortable. But it eased off if I returned to having my head facing forward and my chin up. This applies to sleeping positions as well. They recommend sleeping at a 30 degree angle if you’re being fed via your tube anyway but I found this to be the only position I could actually sleep in from a comfort point of view.

Having fluids or food down an NG tube feels weird, at least at first. Because the temperature of the liquid is different to the temperature of your body, you can feel it moving across your face and then down your throat. The first time this happened I wasn’t expecting it and I started to gag. My body seemed to think that I was drinking but that I wasn’t swallowing and I freaked out. Just breathe gently and get the nurse to talk to you as a distraction. After a while it feels normal and you won’t notice it.

NJ Tube

An NJ is very similar to an NG except it doesn’t go into your stomach, instead it goes further into your digestive system, ending in your duodenum or jejunum. Mine was put in whilst I was sedated so I can’t tell you anything about the procedure but I understand it’s much the same as the NG.

That said, I much preferred my NJ. Perhaps it was because I hadn’t been aware of the insertion but it felt more comfortable and more stable. I think the tubes themselves are softer as well. The disadvantage of an NJ tube is that you can’t have as much feed going in you at once compared with the NG. This is because feed can sit in your stomach and wait to be digested whereas feed from the NJ has nowhere to sit. This meant I was on my feed continuously. Not a major problem but taking a drip stand everywhere can be a pain!

Both the NG and the NJ tubes can feel worse when they ‘hang’ as they pull on the tube inside you. I employed a couple of strategies to take the weight off my tubes. Firstly, I hooked it up and around my hairband. Secondly, and this is a slightly stranger look but works well, is I hooked an elastic band around the tube and used a hair clip to attach it to my hair. This meant it have enough give that I wasn’t pulling the tube if I moved and took the weight off the part of the tube that was down my throat. You might also want to look at ways of taping the tube to your face, some nurses are better than others when it comes to that… I believe you can also get stickers which mean you look less medical – and who doesn’t want a dinosaur on their cheek?!

A note on feed

Your dietitian will probably prescribe you a standard feed. When you first start on it you will probably experience diarrhoea. Depending on your other health issues, you may want to ask the hospital for some incontinence pads. Especially if you’re in hospital and sharing the toilet with other people. As awful as it feels, it’s good to have the back up of the pads. When I was in hospital most recently I was violently sick every time I moved so getting to the toilet was an ordeal and it took ages because I couldn’t walk. This meant getting a nurse who then had to get a commode and then get me to the toilet, providing of course the toilet wasn’t in use.

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My yummy feed…

There are other types of feed out there, if you aren’t getting on with one, talk to the dietitian as they can explore others. For example, the one I was put on to start with was repeating on me and tasted of meat, which as a vegetarian was really unpleasant. If you find the diarrhoea continues, they might explore feeds with higher fibre etc.

Depending on why you needed an NG or NJ tube, you might also still be able to eat and drink. In my case, I could still drink and I collected a range of different flavours and types of drink to keep life interesting. I also craved certain foods and I was able to suck on ice pops. I also sucked on spicy roasted chickpeas for the flavour and salt and then spat them out, discretely I’d like to add! Avoid toffee and you might want to start with moister foods if you’re able to eat.

I’m also going to do a post about my PEG and what I’ve learnt, tips I’ve picked up etc.

Easy to swallow foods

When my swallow was starting to decline, I went through a range of foods that I could manage and thought it might help to share.  This is all based on my experience which seems to have been quite different to most people.  I had trouble swallowing anything thicker than water, drinks with sugar in and bitty foods.  I also can’t eat dairy and don’t eat meat which did make this a bit harder…

Almost everything in this world is about reducing your calories but if you’re having swallowing problems you’re probably going to need to focus on increasing calories.  Avoid diet and low fat foods.  Think about maximising the calories in what you can eat.  It’ll probably require a mental adjustment, particularly if you’re a woman who’s been socialised to aim for weight loss.

The key thing I struggled with was keeping up my calorie intake but I also struggled with lack of flavour and lack of salt and I found very little advice that was relevant to me.  Hence this post.  Hopefully some of what I have learnt will help others.

Drinks

For some people with swallowing difficulties, thin drinks can be more of a problem than thick ones.  This wasn’t the case for me.  I also found drinks with sugar in to be worse for my swallow.  However, in order to keep calories up it is definitely worth trying non diet coke etc and drinks like lucozade are another good idea.  I started ‘watering’ them down with diet lemonade so that I would still get some of the benefit without so much sugar.

Fruit and vegetable juices and smoothies are great, providing nutrition was well as energy.  They come in a range of textures as well so it’s a good idea to play around with different types, different brands etc.  I had to water these down as well and used water or lemonade to keep things a bit more interesting!

If you need to keep up your salt levels then a little bit added to your drink can help and, unless you’re heavy handed, you can’t taste it.  Bovril and related drinks would also give you a shot of salt.

Hot chocolate, milky drinks and coffee are other ways of keeping up your food intake.  If you can drink dairy there are lots of milk based drinks for boosting your intake.  And whilst they won’t help with nutrition, herbal teas are good for managing any related nausea etc.  Ginger is particularly good, I have lemon and ginger tea every day.  Mint can be good as well and I prefer my mint tea to be mixed with a bit of green tea.  Fruit and herbal teas can also bring more flavour into your life.

Not at all medical advice but I also managed to drink alcohol which does have calories in…!

Foods

This will be a trial and error journey for anyone experiencing swallowing difficulties.  I needed food that melted into nothing in my mouth and wasn’t made up of, or chewed into, bits.  Bread and similar textures aren’t possible for me and nor are rice and pasta.

Soups are most people’s go to with swallowing issues but I couldn’t manage any which had bits in or those which were thicker than water. I did just about manage a very thin, blended version of cullen skink.  I increased the amount of fluids and decreased the amount of potatoes, don’t forget you can play around with recipes!

If you can do soup, try adding red lentils for a nutritional boost.  There’s a couple of soup recipes in my chronic pain cookbook (free download).  If you’re looking at shop brought soup, you can sieve out any lumps and you can blend them as well if you need to.

I made a variety of types of broth using coconut milk and adding herbs and spices to give it flavour.  I had to water this down and could only manage a tiny amount but it was better than nothing.  My favourite was a thai broth; add garlic puree, lemongrass puree, ginger puree and chilli powder to a pan, once warmed add your coconut milk, when it’s hot it’s ready to serve, just add a dash of fish sauce and lime juice.  This also helped hit the spot when it came to salt cravings.  Use full fat coconut milk or cream.  Life hacker has an infographic which shows how to create different flavours using herbs and spices.

Homemade dairy free cauliflower cheese made with thin sauce and really small pieces of cauliflower worked for me for a while.  I had to eat it very slowly with very small mouthfuls.  I think for me, part of the swallowing problem is related to how much fluid (dissolved food and saliva) I have in my mouth.  I had my cauliflower cheese very salty which also hit that craving.

I couldn’t manage jacket potatoes but they are worth a go and also try baked sweet potatoes as they tend to be a bit softer and silkier.  Soft cheeses or houmous will add some extra nutrition and flavour.  Garlic butter might be a good way to add more flavour.

I managed scrambled eggs for a while and I could also swallow grated boiled eggs (tip: boil very well).  I was also able to swallow baby gnocchi (or normal gnocchi cut into small pieces) which come in different flavours and can be served in a flavoured oil.  I also added a little bit of finely grated cheese which was easier to swallow once melted.

Yoghurts come in a wide range of textures and flavours, try a variety of them and see if any are suitable.  If so, think about adding it to soups, smoothies and using it as a base for a sauce.  Baby foods, fruit and veg purees might also be worth exploring.

Whilst you might have automatically ruled them out without trying (I did), some crisps are easier to eat than others.  I can’t eat normal crisps but I can manage Cheetos (the spicy ones are dairy free) and similar.  Think about puffed snacks and you’re on the right track.  Purely for flavour, I have been sucking on crisps and spicy nuts then spitting them out.  For me this is crucial for managing my need for salt and it also lets you taste different flavours.

A sweet tooth

Ice cream, ice pops and sorbets were great for swallowing, again in small mouthfuls, and will help anyone with a sweet tooth.  Get a range of flavours and make your own so you’ve got a bountiful stash to raid.

Meringues melt in your mouth so they could be another nice sweet treat.  And they give you a crispy, crunchy texture which is hard to find in easy swallowing diets.

Try different types of chocolate in different forms.  Chocolate melts at body temperature so it can melt in your mouth.  I managed dairy free white chocolate buttons provided I went slowly and focused on quality over quantity.

Mints and boiled sweets might be ok as well and you can stock up on different types to keep your tastebuds interested.

Other thoughts

  • Maxfacts have some really useful practical tips and things to think about when it comes to swallowing.
  • Think about adding butter and cheese to savoury meals, add tofu to smoothies and soups etc
  • Build more snacking time into your day!
  • Play with taste, textures and temperature of foods as well as the time of day you eat them.  Try dinner for breakfast and if it works, screw convention!
  • Get a blender and experiment with pureed meals.
  • Look in the baby aisle.  It’s not just the baby food in tins that might help you, things like baby rice and baby pasta and baby crisps are all designed for little mouths which are still learning to swallow.

Swallowing issues

One of the many things that can arise alongside Ehlers Danlos Syndrome are issues with the gut.  And this includes your swallow.  And in my case in has.  The last few years my swallow has been getting worse and then in September 2017 I woke up one morning and suddenly what I could swallow had declined significantly.

Swallowing issues present themselves in many ways and I am only going to talk about my experience in this post.

There is no definitive answer on why I am having swallowing problems.  A few tests have been run, various medications tried and nothing has come up as an obvious answer.  My feeling is that it’s just EDS playing around with swallow muscles etc.

My swallowing problems presented in a few ways, mainly one of these three ways:

  • Bread, cake and similar textures would go down and just sit in my throat.  Nothing seemed to shift them, no amount of coughing or drinking or whatever.  It made me feel sick and was rather uncomfortable.
  • Food that is bitty or that you chew into bits (rice, pasta etc) would go down and then come back up.  This was regurgitation as opposed to vomiting or acid reflux.  This also happened a few times with drinks of squash and would happen with any liquid thicker than water*.
  • Some drinks go down ok and then they form what feels like a hair ball in my throat**.  This feels absolutely awful, it makes it very hard to swallow other drinks and also impairs my ability to swallow my own saliva.  This makes it a nightmare to try and get to sleep or do pretty much anything.

*for most people thicker liquids are easier to swallow than thinner ones and you can get thickener to add to drinks if you think this will help you.  a lot of fortified drinks are also in thicker textures because of this.  

**for me, this included the fortified drinks that you can get which wiped out that route of supplementing my tiny food intake. it also seems to include most drinks with sugar in (so i can drink diet coke but not coke) but we don’t know if that’s coincidence or not.

Needless to say medication became impossible and I got very ill from that and from not being able to get enough energy.  A long story later and I now have a PEG fitted which means food goes straight into my stomach via a tube.  This means the majority of my nutrition is via the PEG but I can still eat and drink as my swallow allows.

This entire experience has obviously changed what I can eat and drink and I’m planning on writing about that when I’m a bit stronger.  In the meantime, I have found that I can do better with frozen liquids.  So I can eat a little bit of ice cream even though I couldn’t manage cream.  It seems to be about how much I have in my mouth and how much saliva is produced and so how much I have to swallow at once.  I also seem to have a certain amount of swallows a day, not literally, but if I have x in the morning then I can’t manage y in the afternoon.  If you’ve heard of the spoon theory, it’s a bit like that.

There are also times when my swallow is worse than others – if I’m tired, if I’m on my period etc.  Part of my life over the next few months is going to be figuring these things out.  I can still swallow some liquids and I want to maintain the swallow function I have.  I also want to find a way to include flavour etc in my life and these little tasters like ice cream are one way of doing that.  I hope to be able to share some of my experiences and ideas on here, especially given that the majority of information online is aimed at people who need thicker textures not thinner ones!

If you are looking for ideas in the meantime, MaxFacts has a good selection of recipes aimed at people with issues around mouth, jaw and face but which also helps with swallowing issues.  My post on soft foods might also be worth a peek at depending on what your particular issues are.

Soft foods

This is a post I’ve been meaning to write for a while and someone on twitter just reminded me.

I can’t eat certain foods as they set off jaw pain.  Things like french sticks, apples, doritos are all no goes for me.  And as I mentioned in my last post I don’t really like soup that much…

So here are some suggestions for not-soup-soft-foods:

  • jacket potatoes (I have to leave the skin) with… cheese, houmous, soft cheese, tuna… or even use a sweet potato for more variety
  • lentils, see below for a suggested recipe
  • fishfinger sandwiches, cut up small and using soft bread
  • cauliflower cheese
  • overcooked pasta (use small pasta so you don’t have to chew much)
  • pancakes
  • baked eggs
  • poached eggs
  • fried eggs
  • scrambled eggs
  • omlette
  • poached or steamed fish can be easy to eat and prepared in many different ways
  • smoothies
  • juice
  • hot chocolate
  • tofu – baked, in curry, fried with rice, scrambled etc. if you’re new to tofu, it’s nice and soft and the flavour is very much down to how you season it
  • yogurt
  • pureed fruit
  • mashed potatoes
  • ice cream
  • some fruits like bananas and raspberries might be ok for you
  • some people are ok with rice, i’m not one of them, too much rice and it triggers jaw pain…
  • you could try eating cake although it will probably be slower than normal, cream or ice cream might make it easier
  • houmous with pita or very soft breads
  • other dips are a great way of adding some flavour to what can feel like a very bland diet
  • when my jaw was bad i could manage croissants and pain au chocolate, provided they were cut up small, as they sort of melt in your mouth
  • on a similar note, puff pastry with cheese on top was ok for me too
  • mousse
  • mushy peas
  • soft chips (as opposed to the crispy kind)
  • porridge with fruit
  • baby food
  • you might be able to manage something like macaroni cheese or fish pie depending on how much you can chew.  as my pain was easing, i could eat macaroni cheese when it was made with small pasta shapes and provided i ate very slowly and had very small mouthfuls

I know there will be many many other options but these were the ones which sprang to mind today!


Lemon and coriander lentils

Red lentils
Salt and pepper
Garlic paste
Cumin powder
Coriander powder
Lemon juice
Chopped coriander (frozen is good)

Put a saucepan on the heat and pour in the cumin powder, coriander powder, salt, pepper and add garlic paste. Once they’ve started to heat, add your lentils. Stir them into the spices and once well stirred, add enough water to cover the lentils. Stir occasionally and keep an eye on the water, you will probably need to top it up. At the end, you want to end up with no excess water. You’ll know it’s ready because the lentils will be soft and light in colour, normally takes about 20 minutes. Stir in a splash of lemon juice and the chopped coriander. Serve with rice.

Vary the spices for variety, you might want to use thai flavours for example.

Thai inspired lentil and potato soup

I’m currently experiencing a lot of jaw pain which has me on a mostly soft food diet so I thought I’d share a rough recipe for my thai inspired soup.

In addition to very soft bread rolls and soup, I am also eating a lot of yoghurt and drinking a lot of hot chocolate… I’m not a fan of soft food so to make a change from shop bought soup, I got my carer to help me make this much thicker, but still soft, soup.  The lentils mean that as it cools it thickens a lot so if you prefer a thinner soup, maybe reduce the amount of lentils or increase the amount of liquid.

Thai inspired lentil and potato soup

Potatoes – I used two large ones (roughly 500g together) and made a lot of soup. Cube and peel if you can be bothered, I didn’t…

Red lentils – I used about 120g

Ginger, garlic, lemongrass, chilli – all mine are pastes from the supermarket to reduce cutting and slicing

400ml coconut milk, a splash of fish sauce, lime juice

***

Add the ginger, garlic, lemongrass and chilli pastes to a large saucepan and turn on the heat.  Cook gently for a minute or two, until it starts to smell good.  Then stir in the potatoes, try and coat them with the paste.  The stir in the lentils.  Add enough water to cover and leave to simmer for a while.  You may need to top up the water because the lentils will suck it up.  Cook until the potatoes are ready, about 20 minutes.

Leave to cool.  This is a good chance to rest your hands.

Once cooled a bit, blend.  Because I had made so much soup, we did this in stages.

Return to pan and stir in coconut milk slowly (you may not need the whole can, it depends on how thick you like your soup).  Once combined, add a splash of fish sauce and lime juice to taste.

***

This made 6 portions I think although depending how thick or thin you like your soup this will vary.  Freezes ok.

Variations could include adding peppers and using sweet potatoes instead of or as well as potatoes.  I use the lentil and potatoes as a base for most of my soups, using different flavouring to add variety.

Lactose free life

If you have a chronic pain condition you’re probably already looking for easy food options but factor in not being able to eat particular things and it gets tricky…

Because I’m lactose intolerant, the chronic pain cookbook is made up of lactose free meals. And for me, this does include a number of substitute products which I thought would be helpful to go through.

Milk

I use oatly oat milk. I don’t have milk in tea or coffee so I’m not sure how well that works but it’s great for cooking and the chocolate flavoured one heated up makes an easy but yum hot chocolate. I also use oatly cream if I ever want cream but haven’t tried cooking with it.

The alternative milk market is growing and as well as oats, you can get soya, almond, coconut and Lactofree.

Yoghurt 

I have just discovered the amazingness which is coconut collaborative yoghurt. I love it so much. Add fruit. Add crushed meringues.  And I’m not even a yoghurt fan!

I tried the m&s coconut yoghurt yesterday and it’s almost as good…

Butter

Pure sunflower spread (pure is the brand, not a description!)  has always been my preferred option but again the market is expanding quickly so there are now lots of options.

Cheese

(these are milk products with lactose removed and may not be suitable for all intolerances/allergies)

Lactofree cheese – they sell two kinds of hard cheese and one soft cheese. For some reason the soft cheese makes me ill despite containing the same levels of (very low) residual lactose. Hard cheese wise I strongly recommend the mature over the other one. It’s got a much better flavour, texture and melting ability. Think of the mature one more like a cheddar and the other like an edam.

Marks and Spencer lactose free mozzarella – I tried this for the first time this week! And it is good on pizza! I don’t know how it compares to normal mozzarella though as I only ever had it in mozzarella sticks…

Ice cream

Swedish glace vanilla was my go to in terms of ice cream for a long time. It’s fairly cheap and reasonably easy to find. Obviously one of the difficulties with fresh/frozen food is that it’s harder to buy online (if your online supermarket doesn’t sell it).

Booja Booja (also do chocolates) make a very nice chocolate ice cream. I’ve not had their other flavours but, based on the chocolates I’ve had from them, I suspect they don’t make a bad thing!

Miscellaneous

Also there are a lot of things you expect to contain dairy which don’t. For example…

  • Jus roll croissants, pain an chocolate, cinnamon rolls, pastry
  • Bourbon biscuits, oreos, party rings
  • Mr kiplings jam tarts, Sainsburys jaffa cakes (only the regular sized ones, the mini ones contain milk),doughnuts are often dairy free

There are a lot of ‘accidental’ dairy free/vegan foods, try some of these links for more:

None of these products are giving me anything in return for this post and do check labels as there may be regional variations across the world and also things change…

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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!