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.

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Chronic Pain: Family and friends

None of us live in a bubble.  However independent we strive to be, we live in a society that works because of interdependence and the same is true of relationships.  Unless you live in a very isolated area, off the grid, away from tap water and supermarkets, you are interdependent.  For those of us who have chronic pain or illness, this means that you are not the only person affected by the pain/illness.

One of the sessions on the EDS pain management programme covers relationships and there was so so much I wanted to say or ask but that we didn’t have time for so I thought a blog post could be helpful.

Firstly, relationships are affected by and affect our pain.  Loved ones don’t tend to like seeing us hurting and so they try to fix it.  And obviously chronic illness can’t easily be fixed, if at all.  This can lead to friends and family getting frustrated at the circumstances and inadvertently taking it out on us.  It can also mean that they say things which are hurtful or counterproductive, even if they come from a well intentioned place.

From my own experience, there tends to be a spectrum of reactions from people we are close to – either the other person goes straight into care giver or parenting relationship instead of being a partner or friend, or, at the other end, tries to pretend that nothing is happening.  The latter seems especially true of longer term friends who knew you before your pain.  Neither extremes are especially healthy.  Whilst you do want friends who care, it’s more supportive if they support you rather than look after you.  Some people fall into the trap of defining their self worth around how they care for you and this can be a hindrance if you are trying to do more for yourself or if your condition fluctuates a lot.  This can leave them feeling roleless if you do get better and need less help, or if you get worse and need support from other people.  With the people who try to ignore or minimise your condition, you can feel you can’t talk about it with them and they are less likely to adapt with you and your condition.

Talking of adapting… Having chronic illnesses does make you a bit of a master of adaptation.  You learn how to do things in particular ways and so on but it’s easy to forget that friends and family need to adapt as well.  When I started needing crutches and wheelchairs, I started to invite friends for coffee at mine more than going out and I explained this was because of my pain and fatigue.  Again, some friends weren’t as on board with this as others but I feel like all you can do is explain the situation and what you need.  As awful as it sounds, this does mean that you will lose friends, but these are the friends that in the long term you don’t want anyway…

Let’s assume you’re surrounded by loving, well-intentioned people.  How do you want them to react when you are having a flare up or a bad day?  Do you know the answer to that yourself?  Are you expecting your loved ones to be mind readers?  How could you communicate your needs?  The answers to these will be different for everyone and probably different at different times but they are worth thinking about.

I have found a couple of tools that are really useful for me, one I created and the other I stole off a fantastic friend!  I’m going to include them below but before that, here are a few things that have helped me over the years:

  • Discuss flare ups etc before they happen.  Help your loved one to understand that it’s helpful to do x or y or maybe you need them to understand that there is nothing they can do and that it will pass and you just need quiet time.
    • Create a flare up plan and share this with them.  I have my troubleshooting a helen guide on my fridge so my care team have a head start when things are bad.
  • Put together a blog post or video which explains your health etc so that you don’t have to repeat yourself over and over again.
  • If you are in the early stages of an intimate relationship, talk, suggest, listen and laugh.
  • Be specific about what you need – even if you don’t need anything, tell your loved ones that.
  • As much as possible, it can help to acknowledge that whatever irritating thing they are doing is because they care about you – “I appreciate your help and I know that you want to try and make me feel better because you love me.  Right now, the most helpful thing you could do is…”  And of course, reinforce the things they do well!
  • The nature of some chronic illness means that your health fluctuates and this can be really hard for other people to get their head around.  You might find the spoon theory helps them with this.

The two tools I wanted to go into more detail about are the 8 o’clock rule and troubleshooting a helen.

A close friend of mine uses the 8 o’clock rule with her family and friends and it’s a really good way of saying I love you but you need to leave.  The following is information I gave to each of my carers for whilst I am on the pain management programme:

The 8 o’clock rule is designed as a way of saying you need to leave or have people leave because you are tired or in pain or at risk of overdoing things etc.  You are saying to people “I care about you, I’ve enjoyed myself but I need to be alone now”.

If you say “It’s 8 o’clock” it means you need to leave or you need other people to leave.

You can say “It’s getting towards 8 o’clock” as a sign that it’s time to wind things up.

You can also say “It’s 8 o’clock for me” and this means that you are leaving but everyone else can carry on having fun and don’t need to feel bad about doing things without you or feel they need to break up the fun.

If I say it’s 8 o’clock whilst we are in London then it means I am in pain, I am tired and I need some time alone.  There isn’t much you can do for me except check if I need medication or anything to eat or drink.  I might also tell you to be quiet. Neither of these mean you have done anything wrong, they are about me not you.

When I am in a lot of pain or very tired, the last thing I want to do is tell someone that as their concern for me often results in tears.  When I worked, I got round this with my manager by sending him a particular emoji on our work messenger system.  He knew this meant it was a bad day and so it was then easier to ask later on if I could leave early or take a five minute break.

Troubleshooting a Helen was something I pulled together because when I am in a bad place, flare up, whatever, I often forget what it is I can do to feel better.  When I have a cold, it takes someone else pointing out to me that I can try lemsip or paracetamol.  For me it also means the carers understand there are different responses to different situations or different types of pain.  My troubleshooting guide covers pain, fatigue, mental health, migraines, colds etc.

To give an example, the pain section asks:

  • Where is the pain?
  • What kind of pain is it?
  • Have I overdone things?
  • Have I missed medication?
  • Options to help me: medication, heat, ice, splint, pressure, rest…

Obviously everyone will have different needs which will be met in different ways but even if I only ever used my troubleshooting guide myself, I would still have benefited enormously from it.

As with all humans, relationships and the people around us are very important to our wellbeing and for those of us with chronic illness, they can really affect how we feel about ourselves and how we respond to our pain.  They can also be really valuable tools to help us manage as best we can.  And at the end of the day, our loved ones don’t want to see us suffer if there is anything they can do.  But they also need guidance and if there is nothing they can do, they need to know that as well.  It seems to be that when people start guessing, that’s when the problems arise.

Disability and style

I think I’ve written about this, or at least touched on it before, but when you are disabled, there is an assumption that you don’t care about your appearance.  But appearance is about far more than looks, it is a way of communicating to the world about who you are.

I am still working on getting back to my own sense of style in terms of my body.  I’ve cracked it with my flat and one of the nicest things someone has said was that my flat basically looks like my soul!  This is despite the boxes of food for my peg, despite the equipment and the wheelchairs and the bed raiser and the trolley and the… Well, you get the picture.

But my body is harder.  You can’t get around needing to wear splints, using a wheelchair, having a tube in you and needing comfort from your clothes.  What I want to do with this post is share with you some people who are doing this (seemingly) well and my own little hacks that I’ve found to help me out.

First of all, a bit about the importance of style for your mental wellbeing:

This entire post was prompted by an article on Disability Horizons so do check that out as well.

I’ve always had a very individual sense of style.  I was the teenager who didn’t care what other people were wearing.  I loved bright colours and was the only person in my sixth form to have DMs, let alone DMs with epic-ly long coloured laces and over the knee stripey socks.

I lost my sense of style at various points in my life – when I started working for example and when my depression was incredibly severe.  But the most acute and painful lose of sense of style, and sense of self, came when my disability started to interfere with how I appeared to the world.

For me this was a gradual process.  I started wearing wrist splints, then finger splints, then knee splints and ankle splints.  Then came the crutches.  Then the wheelchairs.  And alongside this I was having to wear ever more practical clothing.  My beautiful satchel was replaced by a functional rucksack.  I stopped being able to wash my hair very often.  And I stopped being able to do anything with my hair.  I’ve never worn much make up but that was no longer an option.  And then I stopped being able to wear trousers, tights and leggings because I couldn’t pull them down to go to the toilet.

It was this, the loss of my iconicly me tights, that hit the hardest.  I had a huge drawer filled with all different colours and different thicknesses.  I was known for my tights.  And I lost that.  That hurts more than not being able to wear my beautiful black boots or my much loved DMs.  Even as I sit here, I still feel these losses.  It’s like losing a part of yourself.  My DMs and my tights were so much a part of me and how I expressed myself to the world…

But.  Slowly I am working my way back to myself.  My wrist splints are hidden by arm covers which come in a fantastic array of designs and have the added advantage of stopping the velcro from sticking to everything.  These are the ones I have on today:

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To overcome the unwashed hair, I obviously turned to dry shampoo, lush being my preferred choice – it’s more expensive but lasts forever so it’s a good investment and it smells yummy and isn’t a spray which I find difficult to use and also not great for my allergies.  I also turned to hair bands and headscarves.  When my hair hasn’t been cut for a while my fringe annoys me and these have the advantage of a) covering the unwashed hair and b) keeping my hair out of my eyes.  Soft fabric hairbands are really comfy and you can get whatever colour or pattern you want online but I also like the headscarves and hairwraps that cover all your hair and I’ve got mine from ebay.

Jessica Kellgren-Fozard has some great tips for hairstyles when you have limited mobility:

So, working down, we come to clothing and here comfort is really important to me.  I’m either spending a lot of time sitting in my bed, in my riser recliner or in my wheelchair and my clothes must accommodate that.  As I can’t do trousers or leggings I wear a lot of dresses.  I love tshirt style dresses, jumper dresses and knitted skirts.  But this doesn’t mean boycotting style.  What I tend to do is stock up when they’re in fashion or when I find a dress I really like, I’ll buy it in a couple of colours.

And you can always accessorise.  I feel like I’m very unqualified to be telling people about any of this but this is my experience.

Splints… There is no getting round the fact I wear them.  As I said, I cover up my wrist splints but that still leaves fingers, knees and ankles.  I’ve not found a way of making my knee splints any more stylish but my ankles tend to be hidden because I love wearing boots.  I have to buy them a couple of sizes bigger to accommodate the splints and I can’t wear DMs any more because I can’t get my feet in them easily enough with the splints.  What I’ve found works best for me is ranges with a wide option and boots with a full zip down the side.  Unlike putting a foot in a boot, a splinted foot doesn’t have as much give so you need the shoes to do the hard work.

When it comes to my fingers, I was always covered in beautiful silver rings with stones and patterns and then the splints came along and they were replaced by pieces of NHS beige plastic.  You know the colour… And then I found silver ring splints. Mine were from a company which no longer ships to the UK but again, etsy has a wide range and there are other people who sell them.  When I’m out and about, even when I’m in hospital, people compliment me on my rings, thinking that they’re just decorative and that is such an empowering feeling.  They are complimenting me not commenting on my disability.

I am very aware that this post is getting to be pretty long but bear with me…

Next to the matter of my tights, or lack of them… Instead of tights and leggings, these days I wear very long socks.  All the joy of warmth without the difficulty of pulling them down when you go to the toilet.  I get mine from Sock Dreams in the US because they have a fantastic range and, crucially, give you detailed information about length and width at the top.  A lot of long socks assume your legs are the same width all the way up which is obviously not the case for most people!  I also have to wear compression socks from time to time and was very excited to get an email from Sock Dreams this week about their new range.  I’ve also had some great pairs from Compression Sock Shop including a pair of purple spotty ones!  There is no need for compression socks to be boring, let your style shine through them!

I am not always the tidiest of eaters, especially as I can’t always use cutlery… This of course means sticky fingers and I am starting a small collection of lovely, reusable napkins.  I think they are underrated – most of us grab a piece of kitchen roll if we need to – but resuable ones are obviously better for the environment and plus, I’m allergic to paper… Again, I turned to ebay as well as etsy and there are so many great designs out there these days.

Hmm… What else did I want to say…  I don’t remember!  And to be fair, I think this is probably long enough…

In addition to the links through out, check out:

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 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.

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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.

Another enforced break

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As much as I’m keen to continue with my nature and writing project, my swallowing issues haven’t been resolved so I’m now quite malnourished and incredibly exhausted.  I’m beyond reading anything more than a few lines long and am on a strict regime of trashy tv.

I am really really hoping that the consultants will take some action soon and get me back on artificial feeding but I am not having great experiences with them.  At the last appointment, I saw a different consultant (again) and despite her having my notes in her hand, she made me start all over again which I was not expecting.  I was not prepared for this and was exhausted and emotional and frustrated and therefore missed out vast chunks of my medical history and other relevant info… That appointment ended with acid tablets (which I’d taken before and which made my swallowing worse), some really foul tasting supplement drinks (which I couldn’t swallow) and a referral to the eating disorder team (despite it not being an eating disorder).  Nothing around my actual problem progressed, we were just firefighting…

Anyway, grumble over for now.  My point is there is going to be a break in posts but I hope to be back soonish with more interesting bird info for you!  Regardless of when things pick up I’m going to stick with birds for a bit longer, wrap up whatever calendar month that is and then move onto the sea, possibly marine life and possibly the water itself, still to be decided.

I am also going to do a giveaway of some of the resources I’ve used.  They’ll be ones that I’ve read and don’t think I’ll re-read or dip back into but there are some great books sitting and waiting patiently for new readers.

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.