Opioid addiction and chronic pain: How to tell when someone is addicted

Because of the legitimate pain and need for pain relief, identifying when a chronic pain patient is addicted is a very difficult area.  It is common for someone taking opioids to become physically dependant and tolerant of them over time but this isn’t the same as an addiction.  For addiction to be present, you’d expect behavioural changes in addition to the dependence.

The behavioural changes in a person addicted to necessary prescription medication tend to be harder to spot than those in a person addicted to unprescribed substances.  As they have a legitimate need, it’s easier to cover up or explain away possible signs of addiction and some of the sings of addiction are also explained by the chronic pain itself.  However, a cluster of signs can indicate the need for concern and to explore the possibility of someone being addicted.  These signs include:

  • Frequent contact with doctors, whether that’s visits or phone calls
  • Having appointments about a different issue and asking for a prescription at the end of the appointment
  • Doctor shopping – contacting or visiting different doctors so there is less continuity and the person can play the doctors off each other a bit to try and get more opiates.
  • Manipulating care providers
  • Frequently complaining about medical conditions which justify the need for the drug use and which also justify the need for increasing dosages.
  • Complaining about new medical conditions and pain.
  • Reporting certain drug allergies and lack of therapeutic effect of alternative drugs which mean that the opioid is the only option for pain relief.
  • Frequent reports of losing medication and prescriptions.
  • Declining work or school performance
  • Relationship dysfunction
  • Decreased interest in other pain relieving options such as regular physiotherapy and other ‘health’ work needed to improve quality of life
  • Defensiveness when talking about prescriptions.
  • Increased irritability and anxiousness especially about the availability of the drug, when the next dose is etc
  • Overwhelming concern about the amount of medication etc
  • Mood swings, irritability, anxiety etc
  • Concern from friends, family and other observers
  • Insisting on managing own medication, especially in hospital settings
  • Increasing side effects and lack on concern about them
  • Signs of withdrawal

The physical side effects of opiates can also be a warning sign, especially if they seem to be getting worse.  When it comes to opiates, there is a sedative effect which can be seen in confusion, poor judgement, poor memory, drowsiness and unsteadiness.

If the person is open to a discussion, it can be much easier to get an idea about addiction however the caginess that comes with addiction can make this very difficult.  Unless a person is very open with you, these are probably questions best asked by medical professional, or dropped into conversation more as thinking points.  Avoid making it seem like an attack as anyone attacked about any part of themselves is likely to just get defensive.

  • Quantity: Does the person take more medication than needed? Are they taking more than they used to? Are they taking it more frequently?
  • Attitude: Do they want to cut down or stop taking the medication? Are they using the meds despite knowing they are having dangerous effects on their body?
  • Time: Do they spend a lot of time thinking about the drugs and when the next dose can be taken? Do they spend a lot of time getting and using the drug?
  • Social effects: Are they able to manage their responsibilities? Is drug use affecting any of their relationships?  Are they socialising as much as they used to?  Are they withdrawing from activities?  Has their circle of friends changed?
  • Do they get cravings and urges to use the drug?

Again, I want to reiterate that this is a grey area and it’s hard to identify when legitimate use for chronic pain turns into and problem.  It happens slowly and insidiously.

If you or someone you know is addicted to any kind of drug, please seek help and advice.  If you or someone you know is in immediate danger, ring the emergency services.

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Opioid addiction and chronic pain: Long term effects

There are a number of common side effects of opiate use including feelings of euphoria, feeling spaced out and ‘high’, and drowsiness.  According to the RCOA, between 50% and 80% of patients in clinical trials experience at least one side effect from opioid therapy.

“Evidence shows that chronic opioid therapy is associated with constipation, sleep-disordered breathing, fractures, hypothalamic-pituitary-adrenal dysregulation, and overdose… Opioid-related adverse effects can cause significant declines in health-related quality of life and increased health care costs.”
A Review of Potential Adverse Effects of Long-Term Opioid Therapy: A Practitioner’s Guide

To understand the effects of long term use, you need to know that opiates work by depressing everything, including the pain, but also natural bodily functions such as breathing, blood pressure, heart rate and alertness.

Breathing

In terms of breathing, there are a number of ways that opiates affect this vital function.  They slow down your breathing, they are associated with central sleep apnea, atiaxic breathing hypoxemia and carbon dioxide retention.

Let’s bring in some definitions to help explain what these terms actually mean for the patient:

  • Central Sleep Apnea: pauses in breathing while asleep during which the body does not attempt to breathe. A certain number of pauses in sleep are normal but with CSA, the pauses are longer and more frequent and are the result of the brain not sending the right signals to the muscles related to breathing.
  • Ataxic Breathing: an irregular, uncoordinated breathing pattern.
  • Hypoxemia: Low blood oxygen which can cause low oxygen levels in your tissues.
  • Carbon Dioxide Retention: abnormally high levels of carbon dioxide in the blood.

Essentially, breathing is no longer an automatic reflex.  All of these can lead to additional health issues, for example if you aren’t getting enough oxygen there is a risk of brain damage as well as damage to other vital organs.  Deprived of oxygen over a period of time can result in organs shutting down and for some patients, their breathing is so depressed that they fail to wake when they don’t breathe.  It is this, and organ failure, that is behind many opioid overdoses and deaths.

For patients on around the clock opiates for at least six months, sleep disordered breathing issues were found to be as high as 75%, as opposed to 3-20% in the general population.  These effects appear to be related to the dose strength, with ataxic breathing observed in 92% of people taking a morphine equivalent dose of 200mg, 61% of people taking under 200mg and 5% of people not taking opioids.

We will see the effects on the brains performance when we consider the mental effects of long term use.

Gastrointestinal

Just as the breathing system is slowed down, so too is the gastrointestinal system.  The urge to pass stools reduces causing constipation and even impacted bowels.  Opiate use can also cause vomiting, cramping and bloating.

Hormones

One of the things that shocked me when I was looking into the effects of opiates was the impact on the hormonal system.

When you think hormones you tend to think sex so I’m going to start there.  Opiate use can decrease your sex drive, can cause infertility, can cause erectile dysfunction and can cause issues with menstruation.  Fatigue and hot flashes, inappropriate milk production can also occur.

Hormones are also involved in other bodily functions and can affect bone density causing osteoporosis and impaired healing.  Growth hormones, thyroid stimulating hormones and many others are also affected.

Mental

As an organ, your brain is affected and thus your mental wellbeing and functions are impaired.  Opiate use can cause confusion, lack of concentration, drowsiness, depressed alertness, depression and other mental illness.

As the person’s judgement is affected, they can make decisions that they wouldn’t otherwise.  There are impulse control issues as well as impaired insight and issues with reasoning.  Demotivation and apathy can lead to social withdrawal and the persons world can become smaller and smaller.  Moodswings, hostility, increased secrecy and a change in personality can all come about because of opioid use.

Due to the reduced oxygen levels, the brain struggles to perform even basic tasks (such as breathing) and the person can experience agitation and disorientation. Impaired memory is another common effect.

Muscular skeletal

The combination of the confusion and the bone density issues, muscular skeletal issues are common.  Impaired coordination can lead to an increased fall risk, as can dizziness and a sedative effect.  When falls occur, fractures are more likely.

Hyperalgesia

Possibly one of the most counterintuitive effects of long term opioid use is hyperalgesia, that is a heightened sensitivity to pain.  This feels like the most insidious of the effects as it likely leads to more opiate use and makes the whole situation worse…

Pain associated with hyperalgesia tends to be more diffuse than the pre-existing pain and less defined.

Other

Other effects include a reduced immune system responsive, slurred and slow speech, falling asleep mid conversation and not realising it, blackouts and forgetfulness.  Increased sensitivity to sights, sounds and emotions may also be present.  Dry mouth that can cause tooth decay is yet another possible effect as is a suppressed cough reflex.

Whilst one person is unlikely to experience all of these effects, in general the risk increases as the dose increases. Please do not let this put you off taking pain medication that you need, but monitor your use and your mental state and discuss any concerns you have with your doctor.

If you or someone you know is addicted to any kind of drug, please seek help and advice.  If you or someone you know is in immediate danger, ring the emergency services.

Part one: Opioid addiction and chronic pain: Statistics

Opioid addiction and chronic pain: Statistics

There has been a lot in the news about opioid addiction over the last few years, especially in America and primarily about people who have had a legitimate prescription and need for painkillers.  The standard storyline is that someone has an acute injury, has been prescribed opioid painkillers, gets addicted and then takes them without a pain need.  Whilst this common tale is an important one, it can be hard for those of us who have a legitimate need for long term opiates because of chronic pain.  We can find ourselves having to justify our need for pain relief, having that need doubted and minimised, and in some cases have much needed medication stopped.

My position in this debate is a very complicated one.  I use opiates daily.  I can only function because of the pain relief they give me.  I can only write this because of the pain relief.  Even with constant pain relief, I still experience high levels of pain and very reduced function and ability to participate in normal daily tasks.  I strongly defend my use of opioids.  I don’t think I should have to justify my use of them repeatedly and I don’t think I should be treated in a degrading manner when I ask for them.

However.  And this is a big however.

Someone close to me, who has a legitimate need for pain relief, is almost certainly addicted.  And I’m having to watch this person essentially kill themselves.

What happens when someone who needs opioids on a long term basis, for a chronic pain condition, becomes addicted?  It is probably because it is so complicated that this isn’t a story we hear as often.  This story has many parts and I’m hoping to cover them in a few different posts, partly to educate myself about the effects of this addiction and to try and unpick how it happens and what can be done about it.  For confidentiality and privacy, this isn’t going to be the story of the person close to me.

Statistics and definitions

Before we can talk about addiction, we need to try and find a definition for addiction, which turns out to be harder than expected.  It seems that opioid addiction, especially in chronic pain patients, is something that science has yet to agree on a definition for.

What we do know is that physical dependence is not the same as addiction.  Physical dependence is a physiologic adaptation to the continuous presence of certain drugs in the body.  Physical dependence is an expected consequence of prolonged use.  Tolerance to opioids is another expected consequence of long term use and is not a sign of addiction.

Addiction is characterised by behaviours including being unable to control drug use, compulsive use, cravings and using the drug despite knowing it’s harming you.  It cannot be identified on the basis of one event, instead it is necessary to observe a number of behaviours across a period of time.  Where physical dependence and tolerance are expected, predictable responses that occur with persistent use of opioids, addiction is not.

When it comes to defining addiction in the context of patients with chronic pain who are taking opioids, R K Portenoy has suggested the following definition of addiction:

‘‘Addiction is a psychological and behavioural syndrome characterised by evidence of psychological dependence, and evidence of compulsive drug use, and/or evidence of other aberrant drug related behaviours’’

The American Society of Addiction Medicine defines addiction as “a primary, chronic disease of brain reward, motivation, memory and related circuitry.”  The psychological aspect and the compulsive nature are important in helping to figure out the grey area between appropriate use and addiction.  With the latter, there is an intense desire for the drug, loss of control over drug use and compulsive drug use, and continued use despite significant side effects.  As opioids impact the brain and can lead to a temporary feeling of intense pleasure, addiction can develop quickly.

It proved very difficult to identify statistics around addiction amongst people who have chronic pain in the UK so instead I took a look at statistics around opiates and drugs in England and Wales:

  • Around 1 in 12 (8.5%) adults aged 16 to 59 in England and Wales had taken an illicit drug in the year 2016/17
  • In 1993, there were 471 deaths from opioids but by 2017 there were 1985 deaths.
  • 279,793 individuals were in contact with drug and alcohol services in 2016/17, with a majority of them having used opiates.
  • In 2017, there were over 24 million prescriptions of opioids – an increase of 10 million since 2007.
  • Fatalities from the synthetic opioid fentanyl were up by almost 30 per cent in 2017 from the previous year.
  • In 1996, there was one death which mentioned tramadol use but by 2011 there were 154 deaths.

A 2014/15 survey for England and Wales looked at the effects of using prescription opioids which were not prescribed to the user.  Whilst this is something slightly different to my focus, it can show some of the impact of addiction.

  • Overall, 5.4 % of adults aged 16 to 59 years had misused a prescription-only painkiller not prescribed to them
  • People with a long-standing illness or disability were more likely to have misused prescription-only painkillers and to have used an illicit drug in the last year.
    • Among those with a long-standing illness, 8.5 per cent had misused prescription-only painkillers in the last year (compared with 4.8% without an illness) and 11.9 per cent had taken an illicit drug in the last year (compared with 8.1% without an illness).

Basically, in summary, opioid addiction is not rare, it can affect people who have a legitimate pain relief need and it can destroy lives.

In future posts I’m going to take a look at the effects of long term opiate use and abuse, how to tell if you or someone you know is addicted, how the risk of addiction could be managed and how someone who is addicted can be helped.

If you or someone you know is addicted to any kind of drug, please seek help and advice.  If you or someone you know is in immediate danger, ring the emergency services.

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.

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.

EDS Rehab

Some of you might know that I’ve just started a three week pain management programme to try and help me manage my Ehlers Danlos Syndrome.  Well, we had a rocky start and a few issues with the hotel but today is day three and things seem to be going a bit more smoothly.  The rest of the group are lovely and friendly which I think will really make a difference, particularly as the weeks go on.

Whilst I’m not going to be sharing everything we’ve been doing, there are a few things that I think other people with chronic pain might find helpful and some other info that you might want to know if you’re considering coming.

Hotel

First of all, there are two versions – one run in a hospital and the other in a hotel, mine is the hotel version so I can have care with me.  This meant that I was assigned an accessible twin room.  Thankfully I am able to walk a little way otherwise I think I’d have had to go home again…  The room is tiny, the twin beds are essentially one big bed and I can’t get my manual or electric chair to the bed.  There certainly isn’t space for transferring.  Ditto for the toilet and the shower is so tiny that anyone much bigger than me would struggle.  It does have a shower seat but when it’s down there’s no space for your legs…  It’s certainly been an intimate experience when my carer has showered me…

The rooms that the hospital use all seem to be on the lower floor and there is a wheelchair platform lift as opposed to a regular lift.  We used this once when we arrived and I think we broke it. No one asked how heavy my electric chair was and it was only when I was going up it in my manual yesterday that I noticed we were probably 100kg over the maximum weight…  This means that if I want to go to reception or the restaurant we have to go to the far end of the building and then out the fire exit, through the car park and back into reception.  This isn’t great but thankfully isn’t raining… Although the fire door gets locked from the inside at night so we have to arrange for someone to meet us there and let us in.  Last night we also discovered that a door between the main corridors and rooms and the fire exit gets locked at a certain time so we couldn’t get in that way… This poses questions about how I get out in a fire as it’s the only ramped fire escape… Questions that so far the hotel have been unable to answer…

Pain

Up to now we’ve done some one to one work with a physio, an OT and a psychologist and had some talks about what pain is, the psychological element of pain and such things. In one of these sessions, we were shown a really interesting Ted Talk which shows the role of the brain in interpreting pain:

This is not to say that the pain is “all in your head”, you are not making the pain up but your brain has an important role in pain.  As Moseley explains, your nerves send signals to your spinal cord which passes them onto the brain for interpretation.  It is here that our bodies decide whether something is a threat or not.

In people with chronic pain, the messenger system which conveys sensations to brain can become over sensitive and sends more messages to the brain about stimuli and sensations.  The spinal cord also becomes really good at hearing these messages so it picks up on quieter messages and hears them more loudly.

We’ve also been looking at how prior experiences, beliefs, culture and relationships affect how we feel pain and how we think about it.

One of the really interesting points was that when you are experiencing a pain flare up, your body reacts in a very similar way to how it would if you were being chased by a lion – flight or fight mode.  This explains why your temperature changes, why your heart races, why you can struggle to breathe etc when pain is high.

I’ve also been given a few different physio exercises to try and strengthen my weak muscles and stretch out the tighter ones which we’ve been practising in my room.  Of course this all means increased pain right now and fatigue but it’s different pain to my normal pain so I’m taking that as a good thing!  And I get to do hydro which is very exciting!

The Sound of A Wild Snail Eating

“The velocity of the ill, however, is like that of the snail.”
– Emily Dickinson

The Sound of a Wild Snail Eating by Elisabeth Tova Bailey is a beautifully written book interweaving her experience with chronic illness with her life co-habiting with a snail. Perhaps my own chronic illness gave the book a certain poignancy but I couldn’t put it down.

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The book had been on my wish list for so long that I had forgotten what it was about until a post over on Bimblings reminded me. Read the book but also read the post, both are excellent, high quality pieces of writing.

Back to Wild Snails… Each chapter is snail sized, perfect for those of us with brain fog or hands which don’t like to hold books. It is scattered with quotes from others as well as quotable phrases from Bailey.

“When the body is rendered useless, the mind still runs like a bloodhound along well-worn trails of neurons, tracking the echoing questions: the confused family of whys, whats, and whens and their impossibly distant kin how. The search is exhaustive; the answers, elusive… Given the ease with which health infuses life with meaning and purpose, it is shocking how swiftly illness steals away those certainties.”
– Bailey

Unable to get out of bed, a friend brings her some flowers and a snail from nearby woods, something I’ve recommended before as a way of connecting with nature when you can’t leave your house. Friends have come bearing gifts of conkers, acorns, interesting looking leaves but so far no animals!

Hiding

“The tiny, intimate sound of the snails eating gave me a distinct feeling of companionship and shared space.”
– Bailey

I suspect that anyone who has been unable to leave their bed or house for long periods of time knows the feeling of loneliness, of enforced solitary confinement and for Bailey, the snail would alleviate some of this additional pain. But more than that, the snail would teach her and guide her like a mentor. Watching the snail “provided a sort of meditation; [her] often frantic and frustrated thoughts would gradually settle down to match its calm, smooth pace.”

Snails

In between her reflections on the snail and her own life, are interesting facts, for example her particular snail possessed around 2,640 teeth in it’s tiny mouth. And a snail’s world is painted predominately by smell, taste and touch. In learning about the snail, she sees herself:

“I learned that snails are extremely sensitive to the ingestion of toxic substances from pollution and to changes in environmental conditions, such as temperature, moisture, wind and vibration. I could relate to this, as my dysfunctional autonomic nervous system made me sensitive to these things as well.”

To see ourselves in a mirror, and to see others experiencing similar feelings, is incredibly helpful in coming to terms with our illnesses and our new way of being in the world. I think, to some extent, my animal spirit posts have given me something of this. They are vessels for self reflection but they are also companions in facing shared difficulties, alone but together.

““I am going to withdraw from the world; nothing that happens there is any concern of mine.” And the snail went into his house and puttied up the entrance.”
– Hans Christian Anderson

I devoured The Sound of a Wild Snail Eating in much the same way as Bailey’s snail ate it’s way through letters and envelopes. It is a short, small book, filled with poetic observations and for me, is the type of nature writing I aspire to. There is an ordinariness in it. She is not exploring remote, far flung places. She is not at a microscope. She is someone who could easily be me, or you. But through the snail, she found herself a way of coping in a challenging situation.

“In a March 2009 article in the New Yorker, Atul Gawande wrote, “All human beings experience isolation as torture.” Illness isolates; the isolated become invisible; the invisible become forgotten. But the snail… the snail kept my spirit from evaporating.”

By the end of the book, her health has improved but she remains ill, keeping the snails teachings with her; “lots to do at whatever pace I can go. I must remember the snail.”

Climb Mount Fuji
O snail
but slowly, slowly
– Kobayashi Issa