EDS and drinking, take two

Four or so years ago I wrote a blog post about EDS and drinking and felt it was time for an update!

What are the issues with EDS and drinking…

  • you may not be able to swallow or have a limited swallow.  In my case I can drink some things and not others.  Generally when people can’t swallow liquids very well they are advised to try thicker drinks. In my case this concept is reversed, I can’t drink thick drinks but can do water and squash and thin liquids.  I also can’t drink anything with sugar in.  No idea why this is the case but wanted to mention in case it helps someone else identify a pattern in their own swallowing.
  • you may not be able to lift a drinking vessel
  • you may not be able to open a bottle with your hands or a sports cap with your teeth
  • you may have a tendency to spill or drop drinks
  • you may need to drink more than the average person to manage POTS

What are the solutions?

Contigo Autoseal are still my go to for hot drinks and I still haven’t had a problem with the flask mentioned in my first post about this subject!  They have a couple of designs so it’s worth having a think about what will be best for you.  I find the ones without handles easier but the ones with handles do have locks for added security.  The button you press to open the mouth bit is fairly easy to press but not so easy it’ll get pressed in your bag.  You can also get a replacement lid if you ever need to so you won’t need to throw the whole thing away.

Note of caution: your drink will stay hot for hours. If you want to be able to drink it soon, add some cold water!

Straw wise, you’ve now got a range of options which is amazing!  There is lots of advice out there now in response to the straw bans but I find this from @rollwthepunches particularly helpful:

straw

Hopefully it will help you think through your options.  Personally I use metal straws for cold drinks and I have a little pouch that I take out with one in so my bag doesn’t get wet after use.  I also take out straws which are made of plastic designed for hot drinks, a bit like these from Serephina’s Kitchen.  Note, don’t use the metal ones for hot drinks!!!

I’ve tried glass straws and liked them for drinking wine – it felt classier than using plastic or metal – but my carers ended up breaking them all.  All of these can be hard to clean if you have hand issues so do consider that as well.  Some can go in the dishwasher and this might be something to think about if you don’t have someone who can help you clean them.

When it comes to cold drinks, I get through ridiculous amounts of squash and diet fizzy drinks in a day.  I’m talking 5 to 6 litres a day.  Obviously this means I don’t leave the house without a bottle and that bottle is one from Hydrate for Health.  It pops in the side pocket of my wheelchair bag and the long straw means it reaches round the chair and clips onto my coat or skirt or whatever.  Without it, I’d be asking my carers to open a drink every two seconds…  I also use it overnight.  It hooks onto the trolley by my bed and means I can easily drink when in bed.  I can even drink laying down, all I have to do is move my arm!  You can also buy replacement bits which is great – I have two bottles and have had them for years now but from time to time I need a new clip or straw and I like that I can get them separately.

At the other end of the size spectrum I have a Contingo Autoseal water bottle which is a mere 300ml and has been to Cambodia and back with me.  When I was on the plane, I got it refilled with water and hence didn’t have to bother with plastic cups.  I have absolutely no issues with it and, like my flask, have had it for a number of years now!

During the day I like to drink fizzy drinks and the hydrate for health doesn’t really work for that so I use those plastic cups with lids and straws.  You can find them in bargain home stores and have grown in popularity over the last few years so are fairly easy to find.  If you don’t know what I’m talking about, look at this one from amazon but note that you can normally get them for less than £3.

Safe Sip drink covers can another great product and can be used on wine glasses! They are easy to use and small enough to carry with you if you’re going out.  Pop them in a little pouch with your straw!

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A life of pain

There are a lot of posts online about how long it has taken for people to be diagnosed with Ehlers Danlos Syndrome (EDS). I was thinking about joining in as it is the helpful way to raise awareness of both the condition and the struggle that people have to be diagnosed.

However, I don’t know when I first became aware of my symptoms. For me, they were normal. I remember coming out of exams in school surrounded by friends who were telling me how much their hands hurt. My hands hurts so badly that my handwriting was virtually illegible, my pain was through the roof and I hadn’t been able to write everything I wanted to. I assumed my pain with the same as theirs and that I was weak, overly sensitive and over-dramatic. I didn’t know my pain wasn’t normal.  I didn’t know what I was experiencing wasn’t ok.

I was told over and over again that I was useless at sports and PE because I was unhealthy and unfit.  I assumed the pains shooting through my legs were because of this.  It never clicked that it was or could be something else.  I restarted dance lessons when I was 12 because I wanted to get healthier.  I quickly lost track of the number of times my ankles rolled and twisted and sprained.  We did a week of performances in the summer of 2000.  I danced every night on a strapped up, sprained ankle.  I went to school and walked around as if everything was normal.  Because for me it was.

My friend’s mum was horrified and suggested I try this and that to reduce the pain.  I was used to a mother who glossed over these things.  To have someone treat my pain like it was legitimate and a big deal was weird.  But sprained ankles come and sprained ankles go and after all, this was an intense week – I was performing every night for a full week and walking round school and walking home.  All of this factors came together to explain why this particular pain was so bad.

As I got older, I still carried the baggage of being dismissed, invalidated and told I was in pain because I was unfit.  It took breaking down in tears with my then partner because of the pain in my hands before I really started to realise that this wasn’t normal.  That people didn’t go around in pain day after day.  That people didn’t get shin splints from a short walk.  That writing notes in lectures shouldn’t leave me in agony.  I had lived with the pain for up to twenty years before I realised this.

I don’t know when I first noticed my pain.  I don’t know when it first became a problem.  All I do know is that by the time I was 22, I had finally realised this wasn’t normal.  This was the start of my journey towards a diagnosis.

Unfortunately, the first step on this journey involved a rheumatologist telling me I was hypermobile but it wasn’t a problem, that I was experiencing growing pains and that I would grow out of it.  He couldn’t understand why I burst into tears.

I was living in agony, I had realised that this wasn’t ok but here he was telling me that I was fine.  I spent the next couple of years in a weird grey space, not quite sure if I was overreacting to my pain, not quite sure if I was being dramatic and not quite sure if I was just overly sensitive.

I am now 32 and I know that my pain is real, I have a diagnosis and I have pain medication.  But I still ask myself whether I’m faking it or not.

A short history of feeding tubes

Whilst you’re probably vaguely familiar with nose and stomach feeding tubes, it hasn’t always been that way… rectal feeds were once the only way… and up until the 1940s the rectum was used for water, saline and glucose solutions.

The first recorded attempt dates back to ancient Egypt when reeds were used to give rectal feedings of chicken broth, wine and eggs. Rectal feeding was used as there was no way to reach the upper GI tract without killing the patient.

There is a long period before any known, recorded developments in artificial feeding.  In Spain, in the 12th century Ibn Zuhr attempted parenteral nutrition, supplying nourishment intravenously to a human with the aid of a hollow silver needle.  It is unknown how successful it was.

A few centuries later, in 1598, Capivacceus used a hollow tube with a bladder attached to one end to reach as far as the oesophagus.  This thinking was developed and in 1617 Fabricius ab Aquapendente used a silver type of NG (nasal gastric – nose to stomach) tube that went as far as the pharynx for patients with tetanus.

In 1646 Von Helmont used leather to create a flexible, hollow tube that patients would swallow and it would feed into the top of the oesophagus.  A syringe was used to deliver blended food.

By the mid 17th century, thinking was focused back on parenteral feeding:

“The idea of providing nutrients intravenously in humans was first realised when Sir Christopher Wren injected wine and ale in dogs way back in the middle of the 17th century.”
– Ahmad Fuad Shamsuddin

Wren had invented an IV made of goose quills and porcine bladders and was also able to give opiates to dogs through this.  There were issues and in 1710 Courten concluded that fats needed to be manipulated before being administered through an IV.  Despite these developments, IV feeding is a fairly new therapeutic tool.

In the 1700s physicians experimented with blends of wine, eggs, jellies and milk and in 1710 it was suggested that the leather tube could be used to reach down into the stomach.

Another stepping stone in the history of feeding tubes saw John Hunter, in 1790, using whalebone covered in eel skin attached to a bladder pump to feed a mix of jellies, beaten eggs, sugar, milk and wine.  In the early 1800s, food blends included thick custards, mashed potatoes and pre-digested milk, whatever delightful thing that is…

During the first half of 19th century stomach pumps were used to feed severely mentally ill patients in England but it wasn’t a straightforward technique with complications including stomach lacerations and drowning in beef broth…

Apparently it was in 1837 that the first gastronomy was suggested.  That is a tube which goes into the stomach through the tummy.  It was attempted around 1845 but there were many complications including infections which couldn’t be dealt with as antibiotics hadn’t yet been created.

In 1867 Kussmaul introduced a flexible orogastric tube – a tube that goes from mouth to stomach rather than nose to stomach.  Three years later, in 1870, Dr Staton was the first surgeon in the US to perform a gastrostomy with long term survival.  The patient was an 8 year old boy.  Another four years and Ewald and Oser would introduce a soft rubber tube.

It would be 1878 before the first jujunostomy was attempted – that’s a gastrostomy which goes into the duodenum instead of the stomach.  But rectal feeding was still about and in 1881 the US president James Garfield was kept alive after being shot by being rectally fed beef broth and whisky.

Moving into the 20th century, we the early days of the central line which would lead to IV feeding and parenteral feeding as well as soft flexible tubes introduced to make artificial feeding more comfortable and more successful.

Unfortunately, paralleling this was the forced feeding of suffragettes.  This was a torturous affair made up of brutal attacks.  A primitive method of feeding was used that was painful – the tube through the nose was often too large and any resistance from the prisoner lead to further pushing, if the nasal tube failed, a throat tube was used which involved a metal spring gag.

Around 1910, Einhorn began experimenting with NJ tubes and shortly after, in 1916 continuous and controlled delivery of liquid nutrition was suggested when it became clear bolus feeding was not always tolerated.  The Levin tube, introduced in 1921 was very stiff and thicker than the tubes used today which are made of soft polymers such as silicone and polyurethane but was presumably progress then.  Another development came in the 1930s with feeding via a pump.

The literally life changing discovery of modern antibiotics in the 1940s changed the landscape of artificial feeding dramatically.  Many of the surgeries that had failed because of infection were now viable.  This was developed further in the late 1940s when polyethylene tubing began to be used and the first enteral feeding pump was developed.

In the 1960s, with the focus on space travel, work was carried out on nutrition to help astronauts get the right food and prevent malnutrition.  This information would later be used to create the formulas used today in tube feeding.  These were further developed in the 1970s.

In 1979, the PEG insertion technique was developed and performed on a 6 month old in the US.  This is a common method still used today which uses a cut in the stomach and an endoscopic tube – hence percutaneous endoscopic gastrostomy.  It’s this kind of insertion that I had.

I’ve written before about how grateful I am for my feeding tube, it has given me back my life and I am also incredibly grateful for all those innovative thinkers and all those unfortunate patients that have gone before me.  Thank you.

Sources and further reading:

EDS: What to do with a dislocation

I’ve been meaning to write this for ages but a friend asking me advice about her not-quite-in-the-right-place joint reminded me.

Please note, none of the following should replace medical advice and certainly isn’t relevant if you don’t have EDS.  If you don’t have EDS and think you may have dislocated a joint, go to A&E.

If you have EDS and are prone to full or partial dislocations then the following information may be helpful.  It came from a physio who works with people with EDS.

If you lose feeling in the limb or it gets cold or starts turning blue, then seek emergency help.

If not, then a good rule of thumb is that if it came out, it will probably go back in again.  But first the muscles must relax and this is what you can work on.  If you go to A&E, then they are likely to anaesthetise your muscles, then force the joint back.  Once the anaesthetic wears off, your muscles will then freak out and it’s likely they’ll pull your joint out again.  This can get you trapped in a vicious cycle which can result in long term deterioration.

Instead of force, try a gentler approach.  Everything I’m suggesting is with the aim of relaxing those muscles.

  • If you have pain medication, take it as prescribed, no need to be a martyr.
  • Take a few deep breaths; panic will make things worse.  If you panic, you increase your body’s stress which can lead to spasms which can make things worse.
  • If you have relaxation techniques, use them.  If not, maybe make a note to look into them when this is over.
  • Support the joint with pillows or a sling as this will take the pressure off the muscles.
  • Heat can help to relax the muscles, as can gentle massage – but only if you can tolerate it.  Remember we are trying to relax here, anything that adds to your pain or stress levels is unhelpful.
  • Use distraction.  This aims to reduce any panic or stress you might have about the joint.

But all of this will take time, that might be hours, it might be a few days.  And at some point you may still need to seek medical help.

Afterwards, try and see a physio to get advice on exercises that might be able to help strengthen or at least maintain the muscle tone around the joint.  You want to try and prevent it from happening again, so looking at what you were doing at the time may also be useful.  Can you do things differently in the future?  Can you get some equipment that might take some of the strain?  It might not have been the physical action itself either, it could be that you were particularly stressed or tired and that made you more susceptible to an injury.

How to be a carer, part three

If you’ve read the previous posts, or lessons, you might be aware that its important to keep in mind how much better you are than the client.  You are wiser, more intelligent, more able and just overall a much greater human being, after all, you contribute to society selflessly every day.

Golden rule: Assume the client is stupid. They need care and you provide care, therefore you are better than them.

Keeping that in mind, you must also be ready to step in with advice at every chance, preferably before being asked.  It doesn’t matter that you don’t know anything about the client’s condition and that you haven’t bothered to learn anything, you are the better human here so your advice should be taken as gospel.  This is especially true when treating symptoms and administering medication.  Whilst this might have been covered during training, you should forget everything you learnt.  Ideally, don’t pay attention to the training and if any of it does seep in, do your best to erase it.

If the client asks you to do something you don’t want to, just don’t do it.  It is that simple.  Don’t refuse, just make out that you have done it or don’t mention it again.  Related to this, what the client does that day should be dictated by you.  If you want to go out for coffee, that’s absolutely fine, just tell them over and over again that its the perfect day for a coffee or other activity that you want to do.

When the client is busy doing things, it’s best to either a) interrupt with pointless questions or b) sit and stare at them.  This is great because communication and spending time together are important in relationship building.

Expect the client to micromanage you.  This way you do the bare minimum work and if anything doesn’t get done, or doesn’t get done well enough, it’s not your fault, it’s the clients.

That said, you should use your initiative when it comes to things like medication.  Remember that golden rule… The client is stupid and they don’t know what medication they really need…

During showers, the priority is to keep yourself dry, don’t worry too much about actually washing the client.

Argue with everything the client says.  The sky is not blue, it’s shades of white and grey.  This is really good as it keeps the client’s mind sharp.

Tell the client that you don’t want to be a carer. It makes them feel extra special and really grateful that you’re doing it for them.

Follow these simple guidelines and you’re well on your way to becoming a fantastic carer.  All your friends and family will admire you for helping those less fortunate people and heap praise upon you for how you suffer for others.

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.