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.



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.


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 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.


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.


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.


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.

Pain scales are a pain in my…

One of the most frustrating things from my stay in hospital is when they asked about pain.  On a scale of one to ten, with ten being the worst pain imaginable, where would you rate yourself when you’re up and moving around?  And when you’re comfortable and resting?  And right now?

Arghhhhh… This question does not work for people with chronic pain.  As I wasn’t actually in for pain I didn’t put much thought into my answers especially after I (politely) challenged a nurse about the uselessness of me answering.  But had I been in for pain related stuff, how would I respond when the first half of that pain scale never really applies to me.  This means I lose nuance and nurses who don’t know what ehlers danlos is look at me funny when I say 5, 6 or 7 – my most common pain scores according to their scale.  I no longer look in pain when my pain is 7 or below.

Also, the expected result was that when I was moving around my pain would be higher than it is when I’m in bed.  But for me that’s often not the case.  I know how to read my body and know when I’m overdoing it and I stop.  Because most of the pain isn’t an instant thing, it’s not like I stand and immediately I’m in agony, I tend to be in more pain when I’ve stopped.  Some of this is adrenaline and some is that I’ve stopped before the pain peaks.

The other really frustrating part of it was hearing other people claim to be at a 10 when they were pretty much fully functional.  In my books, a 10 has you close to passing out or passed out.

But there are options out there for improving this quantitative measure of pain.

Firstly, do the basics and show a patient the pain scale with faces on, it gives a bit more context and helps the patient have a guide to consider.

Although again, for people with chronic pain, the scale shifts.  It takes a hell of a lot of pain to make me cry or even get close to tears these days.

Maybe go one further and use this one from Hyperbole and a Half:

There are also written pain scales which patients might find useful as they don’t just look at the pain but look at the impact of said pain:

0  Pain free
1  Very minor annoyance-occasional minor twinges
2  Minor annoyance-occasional
3  Annoying enough to be distracting
4  Can be ignored if you are really involved in your work, but still distracting,
5  Can’t be ignored for more than 30 minutes.
6  Can’t be ignored for any length of time, but you can still go to work and participate in social activities.
7  Make it difficult to concentrate, interferes with sleep, you can still function with effort
8  Physical activity severely limited. You can read and converse with effort. Nausea and dizziness may occur.
9  Unable to speak, crying out or moaning uncontrollable- pain makes you pass out
10  Unconscious. Pain makes you pass out.
As an aside, according to this particular scale, my pain is always 7 or above…
A similar version exists but with colour coding to help:
Again, I’m a 7 or above most of the time with this one and I regularly hit 8 in the night.. See how unhelpful they are for chronic pain?!
You can also personalise your own pain scale which might be helpful for taking to appointments which are about pain.  There’s a tool online which can help with this and I’d recommend looking at other pain scales as well to get a flavour for things.
There is work going into pain scales, at least in America and I’m hoping that work goes into how the NHS use them as well.  They are a useful tool but they need a lot more tweaking before they can be anywhere near accurate measures of a persons pain.

The ever wise and wonderful Jo Southall has a post on her blog about painscales which I’m considering printing off and handing to the pain clinic next time I go.  Every time I have to fill in the pain scale form and draw on an outline of a body where my pain is, here’s a hint, pretty much everywhere…

As Jo suggests in her blog, much more helpful questions are about how you are coping with your pain, how it is affecting your life and whether it is disrupting your day to day activities.  Not only does this give a clearer picture to the medical practitioner but it also means you can look at making adjustments which will ease those issues caused by pain and in turn you may well make the pain more manageable.

Another post about things which make my life easier!

I’ve done a lot of these posts but I am also continually finding new things which make my life with chronic pain and fatigue easier.  And my condition changes so I need to find new ways of coping.  All the info in the past posts is still really relevant and if you’re new to chronic illness or my blog, I would recommend looking back at them.

If like me, you’re stuck inside, I hope my connecting with nature posts give you some inspiration:

A good mattress.  I’ve written before about the value of a mattress topper and they do make a lot of difference.  But I’ve just bought a new bed and mattress and the difference is amazing!  Although now I stop and think about it, my mattress topper was probably over 5 years old… Everyone has different mattress needs but I have gone with a mammoth mattress and bed (there was a deal if you got both).  Because it’s a medical mattress, I got VAT off.  When I was trying out mattresses, I lay on them like everyone else but I also made sure to do lots of wiggling as that’s how I sleep. For me, memory foam was awful – I couldn’t turn over and it was a nightmare to get me off them as I sort of got sucked in…!  Of all the memory foam ones, the ones which were half sprung, half memory foam were the best.  But the mammoth was the one which was best for me.  If you’re mattress shopping and have a bed raiser or profiling bed, make sure to ask for advice.  Some of the mattresses we looked at would not have worked well if they’d had to bend.

Electric hot water bottle.  All of the hot water bottle benefits without having to use scolding hot water.  Mine are (I have two!) from noozie and take about ten mins to heat up and stay warm for a few hours after, longer if they’re in bed with you.

Metal straws. I use a lot of straws for meds and my drinks and when I go out.  Metal straws are cheaper and more environmentally friendly than the plastic sort.  Depending on where you buy them, you can get a pouch to pop one in your bag and keep it clean.  Most seem to come with a cleaner.  NB, don’t use metal straws for hot drinks, you could burn yourself.  Plastic straws designed for hot drinks are the way forward there.

Toiletry bottles.  You know the ones I mean?  They come free in washbags and you use them to take shampoo away with you.  Well, if you’re on a lot of liquid meds, they can be an easier and lighter alternative to taking all your glass bottles with you.

Salt sachets. My lovely friend picks these up every time we go for coffee now so I have a good stash!  I use them to add salt to drinks when I’m feeling potsy and have some in my bag, my wheelchair and on my trolley.

Earphone headband. I hate sleeping with earphones in but I have awful neighbours who can be so loud I can’t hear my audiobook at night.  Enter sleepphones.  They are a headband which has flat speakers inside.  You can feel them but they are so much better than earphones.  They come with a cord or a bluetooth connection.  Whilst I was concerned about strangling myself in my sleep, I tried the corded version as they’re cheaper and I’ve been fine!  The cable is a good length and their customer service is great. I had a little issue with mine and they responded and acted on my email within 12 hours, no questions asked, no fuss.

Beanbag laptray. You can get some really cool ones these days including ones you can add your own photos to.  They are great for eating off but also for using in bed.  I have my laptop on one at the moment.  I also use them for doing little craft things on so that I can lift and move the whole project easily without dropping stuff everywhere.  You can get crafters trays as well if that’s specifically what you’re wanting.

I’m very certain there were more things I wanted to include on this list but that is the nature of brain fog… If I remember I might add them to the comments!

Insert your own swallowing pun here

trigger warning for anorexia and eating disorders

So, having developed POTS earlier in the year, I now find myself with severely worsened swallowing issues…

Partly this post is so I don’t have to repeat myself but partly it’s also a grumble.  EDS is the gift that keeps on giving.  And just when you’ve got used to one new symptom, bang, there’s another one.

The health issue

I’ve had trouble swallowing for years but never particularly severely.  Mostly it’d be a feeling of a lump in my throat or difficulty swallowing saliva.  Then a year and a half ago I started having trouble with tablets coming back up.  Not often so it took a few months till I went to the dr.  She tried me on PPIs thinking it was silent reflux.  They made it a lot lot worse.  I went from bringing up tablets once a week to once a day. And it didn’t matter what shape or type the tablet was.

I was then referred to ENT.  By the time I saw them I’d managed to regurgitate a lot of juice in the middle of the night, a scary time.  ENT then stuck a camera up my nose and declared there was some redness, probably from silent reflux.  They gave me a really awful printed advise sheet which was full of common sense and nothing I wasn’t already doing…

Then came an appointment with a lovely speech and language person who declared my swallow is slow to get started and a bit weak.  She couldn’t help me with regurgitation issues because the speech and language team only deal with things going down.  She looked into what to do next with me.

Somewhere along the way I also had a barium swallow test which came back fine.

Then, two months ago, I woke up one morning and everything fell apart.  Suddenly I couldn’t swallow most foods without regurgitation, my tablets became a battle and even some drinks flew out the window.  What I have been left with is a strange menu of small portions of dairy free cauliflower cheese (cauliflower cut up super small), gnocchi and grated cheese (but only 8 pieces of gnocchi…) and ice cream.  Up until recently I could do white chocolate buttons (lower melting point than others), only 4, but that seems to be too much now.  I could also do apple juice if it was watered down by half.  Now I’m on a third apple juice to two thirds water and struggling.  I can do lucazade if it’s watered down with lemonade.  And I can do wine, which is probably not a great idea on the amount I’m eating but it’s also probably the main reason I’ve not lost more weight than I have…

I have gone from eating vaguely normally to an amount my anorexia likes and I have gone from drinking 6+ litres of fluid to less than 2 and my salt intake, which I need for controlling the POTS has inevitably dropped drastically…

Thankfully I had a gastro appointment six weeks into the troubles and the dr has been really helpful, or at least he listened well and took note of what I was saying.  Unfortunately there aren’t many options.  I’ve just tried one medication which hasn’t helped, may have made things worse and came with weird side effects.  I’m waiting to hear about a second med he wanted to try but it is a long shot.  And he didn’t want to talk about what happens after that…  Based on the options he ruled out, I can’t see anything other than feeding tubes ahead… Which is a hard thing to think about.

The social issue

A lot of socialising revolves around food but also, right now, i don’t have the energy or the mood to be people-ing much… which i also know is going to make my mood worse…

None of the foods I can eat are any good for eating outside the house because they either aren’t available or need cooking.  This means on the full day course I did recently and the day trip I took, I’ve had some nibbles of cheese, four buttons and glucose tablets to get me through.

There is also the aspect of having to repeat everything to people when I see them and having helpful suggestions made.  Which brings me onto my care.

The care issue

I know that my carers are doing what they’re doing primarily out of concern.  But they keep suggesting foods I should try, asking if they can tempt me into breakfast and telling me about the meals they’re going out for.  Some of this is because it’s hard to know how to help, in fact they can’t help, but some of it is thoughtlessness.

I have placed a huge sign in my kitchen asking people not to talk to me about food or my swallow unless it’s necessary or I bring it up – it seems to be being ignored…  Yes, I do want to grumble to my care team now and then as it’s a horrible situation and I’m annoyed.  But I don’t want to be asked if I’ve thought about soup/custard/blended food, especially when I’ve already explained that I can’t.  And I definitely don’t want to hear the details of your Christmas dinner, because mine is likely to suck.  Literally.

The mental health issue

And of course, within this all, we have the anorexia.  Which was in a good place mostly.  And I think anyone’s mental health would suffer in this situation.  Firstly, I’m not getting enough food and that’s bad for your mind, I’m not getting enough sleep either and I am so bored of the few foods I can eat.  Plus I’m really craving salty foods and cravings are tough to deal with.  And my only real experience of beating down cravings is anorexia…  When I am not experiencing disordered eating, I don’t limit what I eat or when I eat really…  Which actually reminds me that I’m not fully recovered from the anorexia because there are still lots of foods I won’t eat or aren’t comfortable with and I do limit quantity.

So that’s all fun, right?  I’m going to balance this out with a blog post about a new pretty oracle deck in a few minutes!

FOMO and chronic illness

It’s not a phrase I use, so in case you’re not familar with it, FOMO is the fear of missing out.

Meg, from That Hummingbird Life, sent out an email recently about FOMO:

Whether it’s feeling like we should have done things in the past, getting caught up in thinking we need to do/buy something because we’ll regret it if we don’t, or feeling like the odd one out, it’s fair to say we’ve all experienced it.

It’s something I’ve had to deal with, although I’m not sure I’ve been especially conscious of the process, because of my pain. There are obviously many things I can’t do and I have to be more choosy about what I do do. Which almost makes it easier because there are physical consequences to trying to do everything and I know I physically can’t do everything I want to do. One, probably less helpful, way I have dealt with it is by mentally blocking out things which aren’t an option. Most of the time I don’t think about me going on holiday, even when talking about other people’s holidays, because it’s probably not going to happen.

More helpfully, I sort of approach FOMO in terms of compersion or shepping naches. The first is a term used mostly in terms of poly relationships and the second is a Yiddish phrase. Both essentially mean getting pleasure from seeing someone else get pleasure. For compersion, this might be feeling all full of love when you see your partner is in love with their other partner. For the Yiddish, it seems to be used mostly for the pride or gratification that a parent/teacher/grandparent gets when they see their child enjoying themselves or achieving something.

This can be tricky, but for me it basically means that I don’t get jealous when someone is doing something awesome (well, I do sometimes…). I see it as something that is making them really happy and I am happy when my loved ones are happy. We are a very individualistic society and are socialised to think “I want that” when we see someone with something, even if we don’t actually want it. I think part of FOMO is tied into that. When someone is telling you about something brilliant they’ve done or are doing, a part of us leaps to I want that or I should want that or I should do that. By doing this, we miss the awesomeness of just basking in the glow of someone who feels great.

Maybe my thought process might help explain..

Person A: I have just been on a great holiday…
Person B: Oh, I’m so jealous, I really want/need a holiday (this may be said, thought or internalised somehow)
Person C: Oh that’s great but shit, I should be going on holiday/wanting to go on holiday/all my friends love travelling what’s wrong with me…
Person D: Brilliant, tell me more about it, I’d love to hear the details and see some pics (might have a moment of longing or holiday lust but goes back to listening to person A and living the experience through them. I want to say living vicariously but that, to me, has negative connotations.)

Person B and C are probably going to experience a bit of FOMO and think they should be going on holiday and possibly to the same part of the world because A had a great time and they want to join in.

Person D is getting the magic of A retelling the adventure and seeing A smile and engaging with A. Person D is experiencing something different to the holiday itself but it’s still it’s own magic. Person D, for whatever reason, hasn’t got bogged down in what they don’t have or aren’t doing. They are focusing on what they do have which is a great friend who’s wanting to share, rather than what they don’t or can’t have, namely a holiday.

Person D is probably more like a parent filled with delight when their child comes home from school full of excitment about their spelling test going well and having a great time playing with their friends and having been invited to someone’s house for tea for the first time.

We are so socialised into needing everything for ourselves that when we hear about something we can’t be part of, we sulk and we kick off. Not because we want the thing, but because we are conditioned to want everything, especially if someone else has it and we don’t.

I think, for me, the other important aspect of how I approach FOMO is prioritising! I have limited energy and know that if I do something on monday, I need to rest on Tuesday etc. I have no choice. If I ignore this and book something in monday and tuesday, tuesday’s thing will probably end up a write off. So I have to figure out what I want to do most, and this is helpful in living authentically anyway. So I’m faced with x and y, which initially I want to go to both of. But then I stop and think and maybe x is more interesting or y is similar to something I’ve done recently or actually, I didn’t want to do y but I felt I should. X is the winner! And I will enjoy x a lot more than if I tried to do x and y because I would break myself doing both and would spend all of x worrying about how I would get through y. Essentially, I do fewer things but with more heart. The same goes for friends, I go for quality over quanitity both in terms of the actual people and the way I spend time with them.

And if there’s something that you do really want to do, do it. Or find a way to bring it into your life. Or do bits of it. Like if we’re talking about a party, go for the first hour, really throw yourself into it and then head home. Basically, slow down and think about what you actually want. And be grateful for the things that you do experience. And change your viewpoint. Instead of thinking a half day trip is stupid and not anywhere near as good as a two week holiday, make it a big deal if it’s a big deal for you. Take photos, treat yourself to something as a reminder, make a collage afterwards etc. Treat it with the same respect as a holiday.

I used to spend entire days by the sea, long day trips that I loved. As my pain got worse, I couldn’t cope with it anymore and got grumpy with myself when I had to leave after a few hours. I ended up ruining half day trips with dreams and longings for full day trips. Over time I realised I was shooting myself in the foot and started to let go of what I used to be able to do and focus instead on making sure my shorter trips were great in themselves. I had to stop comparing them to my full days and instead begin treating them as something in their own right. I no longer try and do everything I want to but instead I focus on what I want to do most and enjoy it for itself.

There is no way round it, when you have a chronic illness, you are going to miss out on things. But by focusing on missing out, you miss out on what you can enjoy.

I’ve lost my edges…

There is a note in my diary reminding me that I want to write to Oh Comely!, a magazine which inspires hand written, decorative notes not personalityless emails.  The note says I want to respond to something I read and tell them about proprioception.  But the note is possibly a year old now and I have long passed the issue on to a friend.  All my magazines are passed on, turned into collages or left in public spaces for strangers to discover.

proprioceptive: Relating to stimuli that are produced and perceived within an organism, especially those connected with the position and movement of the body.
Example sentences
Origin: Early 20th century: from Latin proprius ‘own’ + receptive.

Oxford English Dictionary

Proprioception is the sense of where your body is.  It is how you know where your arms are when the lights are off.  How you can walk without having to constantly look at your feet.

If you have a huge growth spurt, your proprioception can be temporarily impaired which is why we see clumsy teenagers who don’t seem to fit in their body.  That said, for most people, most of the time proprioception just ticks over in the background.

For people with certain conditions, including EDS, proprioception doesn’t function as well as it should.

I wake in the night, slowly coming back to myself from my dream world.  Before I can rouse myself enough to move, I lay still, figuring out my body.  I may not have an arm right now for all I know.  I’m trying to puzzle out where my left hand is.  I know there is a hand on top of a hand because of the feedback from my splints.  I’m awake enough now to summon up the energy to move that arm which may no longer exist.  How I can move a limb when I don’t know where it is boggles my mind.  It doesn’t take too much movement before I figure out where it is and my arm reattaches itself to my body map.

For me, this is not an unusual night.  My sense of where my body is is not consistent.  Some days I have a better idea than others.  To someone not used to it, waking up “missing” an arm might be scary, for me it’s normal and I can quickly reattach it.  I can’t always put my two fingers together, end to end, without looking.  There are certain muscles that I can’t tense because I can’t find them in my mind to send the messages.

My sense of myself seems to be less when I’m ill, when I’m tired, when I’m hormonal or worried or other states of vulnerability…

Perhaps the hardest to understand and hardest to cope with is when I “lose my edges”.  This mostly happens to my legs.  It is like I am spilling out into the world.  I no longer have skin containing me.  I have no boundaries.  I am the universe and the universe is me.  And I find that terrifying.  When I lose my edges, I kick my legs a lot, I fidget, I bang them against my bed.  I feel out of control and I feel unsafe and unsecure.  It feels like my nervous system is out of control pr non existent.  It is trying so hard to find my body that it is in overdrive.

Returning to the idea of a mental body map, I have lost the structure of my legs.  I know my legs are there and I have a vague sense of where they are but I don’t have any sense of where they end.  My body map, like the rest of me, has gone floppy and nebulous.  I merge and meld with the universe and it is terrifying.

One of the reasons this is so tough for me is that it feels a lot like the physical aspect of a panic attack or an asthma attack – the disconnect from your body that you experience when you aren’t getting enough oxygen.  The very feeling of this is enough to trigger an anxiety attack and it has taken me years to figure out that losing my edges and panic are not the same things, they just feel incredibly similar.

I don’t want this just to be a post trying to explain the sensation, although there is value in that alone.  I want to suggest my own ways of dealing with this in the hope that someone else can benefit.

I don’t have many ways of coping and would love to hear from others, but here we go:

  • There are some ideas on my post about grounding, including telling myself out loud that I am safe
  • A visualisation where I mentally wrap bandages around all my body, bit by bit
  • Blankets wrapped around me
  • Rubbing my limbs with hands, lotion or hairbrushes, anything to re-establish the boundaries
  • Stretching or, when possible, using weight based exercises to help eg arm curls with tins

More about proprioception: