Some thoughts about spoon life, depression and living life, how they might be related.
Note: This is a long post – grab a coffee or whatever floats your boat and get comfy. I had to get all the info/explanations in about spoons and my life, so you would (hopefully) understand the context of what I am trying to say and all the rest… maybe?
So I was thinking….
About spoons, and my life and depression.
I read a post last year and several since then about spoon theory and lifelong illnesses. Most recently about spoon theory and mental health. I then read a few more, just to see if all the people that talk about spoon theory are all talking about it the same way. They sort of are, enough that I can see why the theory makes sense in terms of explaining why people with invisible illnesses like chronic fatigue, or permanent pain issues have difficulty doing things that the normal or average person can do with ease.
If you have never heard of spoon theory, a woman in café was trying to explain to a friend how it feels to be ill all the time, and used spoons to help her explain. The example is 1 unit = 1 spoon and every task you do, every day, takes one or more units (spoons).
One common thread in all these posts is that everyone who is in a position to need to use spoon theory to explain their disorder or illness is also trying to find a way of explaining to their friends, family, employers and work colleagues how to be supportive.
By supportive – I mean actual support rather than saying things like “oh cheer up, it’s not that bad” or “just buck up and get on with it”, which trust me on this, is NOT supportive at all.
I have a number of health issues that mean that I am in constant low grade pain. There are days when I notice it less, there are days when I have tricks and tips to make it less noticeable or to make certain jobs easier for me to do. I also have other issues that mean I also have to deal with chronic fatigue on a regular basis, and that is much more difficult to deal with. I also suffer with an anxiety disorder and when health things are all combining together and making each other worse this often leads to depression.
I have had some very dark days recently. Days where I can barely think straight. Days when it seems as though I am unable to complete even the smallest task. Just getting out of bed to go to the bathroom seems an overwhelming thing to have to do. My body feels so heavy, and so clumsy that getting it to move takes all my energy and strength. Just thinking about walking from my bedroom to the bathroom feels like planning an expedition up Everest. I have definitely had moments where I wonder if getting a bucket next to the bed might be an idea, or just not bothering at all and lying in my own waste because going to the bathroom is just too much.
So far…. I have not got bucket,
and my bedding and mattress are safe from personal waste.
I am, however, as I write this, utterly horrified that I even had the thought in the first place.
Just how bad does your life have to be that a person gets into that way of thinking, and at the time of thinking those thoughts can see nothing wrong with it at all? I was seriously ok with lying in my own waste and basically just giving up. That is not like me at all, and I have no idea how I got there.
Normal or Average People and their daily spoons
Afterward I recovered from the toilet vs bucket thing, I started thinking about it and kept coming back to spoon theory. I think it’s possible that how you feel can affect how many spoons you have, and also how many spoons you need to complete a task.
If you think of spoons as units of personal energy used to complete daily tasks. Everything from eating, washing, talking, walking, typing, listening - to planning for the future, whether is getting out clothes to wear the next day or wondering when you are going to be able to get out and do a trip to the shops to re-stock the freezer…. (But also possibly alertness and personal strength – not the kind you need to lift weights, the kind of emotional strength that helps you get through difficult situations.) Some tasks will only need one spoon to complete, others need more.
If you think of the average person starting every day with a certain number of spoons – let’s say one thousand, just to make the maths a bit easier. An average person will also use almost all of their 1,000 spoons during the course of a normal day, but very importantly not all of them. (Let’s say 900 spoons – which leaves them going to sleep with 100 spoons in reserve*) This means that at the end of their day, they are pleasantly tired and able to sleep, waking the next morning with their normal 1,000 spoons available to them so they can get through their day.
Needing a certain number of spoons to sleep well
* this 100 spoons as they go to bed is not carry-overable (is that a real word?) to the next day. This spare 100 spoons are what is used in order to help the body and mind shut down properly to get a good night’s sleep, do any running repairs and maintenance on the body whilst sleeping etc. This is all the 100 spoons are normally used for and usually less than 100 spoons are needed for this. If you are in good health maybe only 30 spoons. If you are tired or older you might use 40 or 50 spoons per night.
This means that if this person is woken in the night they still have some of these special night spoons to use in the initial waking up and dealing with things phase, of whatever it is that is happening (without using special reserve bank spoons or borrowing spoons from tomorrow) … examples might be; a nightmare, restless legs, muscle cramp, unexpected noises keeping them awake or emergency type things like sudden illness themselves/sudden illness by someone else in the house/phone call in the middle of the night/fire/flood/gas leak/burglars…. You get the picture.
Something happens unexpectedly and the average person – IN SPITE of having had a normally full day STILL HAS spoons to deal with waking up and get organised to deal with unexpected night time things which may or may not be emergencies!
These spoons are important because without them you cannot think clearly to deal with tasks like getting out of bed, finding clothes, shoes, telephone numbers or anything else that might be required…. Like checking if you have any spoons anywhere else you might be able to use or borrow to deal with the emergency…
People with chronic life time illnesses have hardly any sleep spoons left to deal with night time stuff that happens after they went to sleep. They used all the sleep spoons that were available in order to get to sleep in the first place.
Special Spoon Reserves
People talk about having “reserves of strength” and I wondered where that expression came from.
If you imagine that the average person also has the facility to put unused daily spoons (not night one) into a special reserve bank, up to a finite limit as a personal reserve of let’s say, five hundred spoons. The special reserve bank, will keep whatever number of spoons you put in it (up to the maximum limit of 500 and no more) for an unlimited amount of time, or until such time as they are used, after which point you can top up the bank at any later date, again only up to the maximum limit.
So – if they have a quiet day, doing not much and they only use say 5 or 6 hundred spoons, they can top up their reserve up to a maximum limit of 500 spoons in the reserve. If the reserve bank already has 500 spoons in it, then they can’t put any more in – we after all, only human.
Every night that a normal or average person who is in good health, and gets a reasonable amount of restful, restorative sleep - they wake up in the morning with 1,000 new spoons (of which 900 are usable during the day and 100 are reserved for sleeping/night time stuff as mentioned above). This happens every day for them. Every day. Every single day.
That reserve bank means that the average person can have a difficult day that requires more than their daily 1,000 spoons and still cope because they can dip into the reserve bank and use those. They can also top up their reserve later, one spoon at a time if need be.
For every person who has a health issue, eg: an average person gets the flu – the number of spoons you have per day is reduced. Let’s say by one hundred spoons a day, per health issue.
Other things that reduce the number the spoons you have available to you would be things like not getting enough, good quality restful sleep. Or overwork. Or injury. Or a strong emotion like grief.
So if a normal person gets the flu, they lose 100 spoons a day. The flu means they probably aren’t sleeping well either, so they lose another 100 spoons per day that they don’t sleep well. If while they have flu they also get shingles, they lose another 100 spoons a day, this still leaves them with 700 spoons per day.
Also – whilst you are ill or injured or for example suffering from grief – in addition to losing 100 spoons per day, every task you do takes twice as many spoons as it would do normally if you were well. This is the same for average people and those with chronic illnesses.
This is why it best to take time off work if you are ill, you will recover faster if you take care of your spoons and get some restful sleep so your body can recover.
If they borrowed reserves form the reserve bank for any reason (illness, to work longer hours, to deal with an emergency) and haven’t had some time to build the reserve bank back up, a normal day for the average person with no reserves will be tiring.
But – they will have time and energy to take a day off and restock the reserve bank.
Now – let’s look at someone with a chronic illness.
They automatically start every day with less spoons than the average person – say 700 spoons. This is just part of having a life long illness. It is not the cause, or an effect of the illness – it just is. It is part of the spoon theory that allows people to explain why we don’t have as much energy as everyone else.
For every additional thing, just like the average person, they lose 100 spoons per day. Some of these extra things are other permanent illnesses or disorders so they might have a much lower start point than the average person. Depending on the number of illnesses or disorders they have they might be starting every day with only 500 spoons and there is no medication in the world that will give them more.
Every person who has less spoons as a starting point for their day is trying to live in a world where every person is expected to have a full complement of 1,000 spoons per day.
A person with 700 spoons per day can manage to live as an “average person” but they struggle with some things, and every time they have to deal with something else, then they had less spoons available to start with. Their reserve bank is also smaller and as they have less spoons to start with takes a lot longer to top up the reserve if they need to use it, because every day takes all the spoons they have – every time, so there are rarely any spare spoons to be able to add them to the special reserve bank.
When people with certain types of lifelong illness that mean they are already starting every day with less spoons gets ill with something else – like flu – instead of it taking twice as many spoons to do everyday tasks (like an average person with the flu) it takes three times as many spoons to do everyday tasks, meaning it also takes them longer to recover and probably with many day to day tasks undone (household chores, food shopping etc.) as they were trying to conserve spoons to try to speed recovery.
An average person might use some reserve spoons maybe once a month. Someone with a chronic illness, however is probably dipping into theirs at least once a week, if not more often and will find it very difficult to take the time to build up any reserves.
Social pressure adds to this lack of ability to take the time to recover and rebuild the spoon back. Employers don’t yet (on the whole) understand a spoonies need to take more breaks than the average person. Friends, family and acquaintances might not understand either.
Living with less spoons to start with means that you are always short of spoons before you even begin to take on extra stuff.
If someone is your friend and they want to spend time with you, it will be more important to them to find a way to spend time with your than it is for them to do whatever the latest social thing is, that might not be suitable for someone with less spoons.
On a good day I think I probably start with about 700 spoons, this means that on a good day I can appear normal, as long as I am careful not to do too much and take care of myself.
Spoon loss through other things
I also have an idea that there might be some things that over time, rob you of spoons. Almost as though the very act of trying to put a spoon into the reserve bank actually costs you a spoon, so you need to save two spoons just to get one spoon to go into the reserve. It’s also possible that the more often you use the reserve you also start getting charged a spoon for every withdrawal as well.
The more I think about how I ended up even remotely contemplating the idea of not going to the bathroom, the more I think that I have been losing spoons at a rate I was unaware of.
I think that anxiety might add to unrecognised spoon loss. When you are anxious you are using more mental energy to deal with the anxiety and often to hide your anxiety from others, but I think most people haven’t thought about how many spoons their anxiety might be costing them every day.
I think this also happens for lack of sleep and other mental issues including depression.
Does spoon loss lead to depression?
Does the kind of spoon loss due to the cost of banking and retrieval of banked, reserved spoons lead to depression? I think it might.
When I see how easy it was for me to slip into the kind of thinking about getting a bucket so I don’t have to get out of bed to go to the toilet – or worse, just not bothering at all…. I wonder how on earth I got there. On a good day I would never think like that so how did it happen?
A note on depression and suicide and spoons.
I have seen a number of articles about suicide recently, most of which ask the question “Why did this person, who took their own life, not talk to me? Why did they not call a helpline of they thought things were so bad? I am their friend/lover/family member – so why did they not talk to me about this?”
I look at that and think… have any of you who are asking, ever felt that you didn’t know how you ended up thinking something about yourself?
There was no identifiable moment for me when I could have stopped the thought about the toilet/bucket/bed issue. Following the toilet issue came the thought – what is the point? To anything? Life, the universe, everything… what is the point?
I think that it is possible that the suicidal thoughts came from my lack of spoons at the time. I just didn’t have any reserves to think clearly enough to even begin to see a way out.
I did not realise how low on spoons I was, because I think depression also robs you of your ability to keep track of how many you left. You are already fighting so many battles all of which cost spoons that somewhere in there is a tipping point – an unidentifiable tipping point – where you are not able to monitor your spoons and do the sensible thing, which is take time out to regain/restore some of the missing spoons.
Time off to assess the amount of spoons you have and the rate of spoon loss is something that you need to know about to be able to do. You cannot plug a leak if you are unaware of the leak in the first place. I think depression robs us of our ability to do this and some people never learn how to do this assessment for themselves in the first place – even on a good day.
I think you do not have to be a spoonie through other health issues, to reach a point in your life where you are losing spoons so fast each day that depression creeps in and robs you of even more spoons.
I think that there might be a point at which depression stops your ability not just to count the number of spoons you have left, but to regenerate spoons properly – regardless if you are normally an average person or a spoonie with a life long illness.
I think if you are worried about something, it can cost you spoons.
I think lack of confidence in yourself can cost you spoons.
I think lack of pleasant things in your life can cost you spoons.
I think life without pleasant things, fun, wonder, amazement, kindness, gentleness, is not a life at all – it is merely an existence which is not the same thing at all. Some people are able to exist for a long time, but they fade away and die through lack of spoons. Some of these people have no idea that they are existing rather than living so they can’t make the changes necessary to have a life again. Some (not all) of these people take their own lives, sometimes their body shuts down on its own.
I think that anyone can end up with issues that they might not be aware of themselves, and as such are unable to tell anyone about… depression can be like that. No apparent reason, it just is… and it stops people from living. It slowly steals away their spoons till they have none left, even if it looks like they are living on the outside, they are merely existing on the inside. Sometimes the person knows that and sometimes they don’t. Sometimes a person asks for help, but equally – even if they know they need help, they may not ask for it through fear of being judged or rejected.
I think it can happen to anyone and the person it is happening to might not even be aware of spoons and how many they need to get through each day, and how to keep track of them, how to save some for later, how to conserve spoons for later, how to deal with people who expect you to have a full complement of spoons very single day….. They might never understand that a hug from someone safe could restore a mental spoon, or slow the rate of loss - so they can’t ask for a something they don’t understand or know that they need.
At no point during the conversations with myself about ending things did I think – “oh I know - I’ll call a friend or a helpline to ask them about the bucket/bed/toilet issue or to help me find some reason to make everything/living/existing for a bit longer worth it….”
After I recovered – on my own – I thought about this.
Would calling someone, anyone, a friend, my doctor or a stranger on a helpline have helped me?
Social judgement is a bad thing and does not aid recovery.
I also struggle with giving myself time to recover, time to regain some spoons. I often feel that every time I do something fun, something relaxing, and something that stops the sensation of rapid uncontrolled spoon loss - that society is judging me. That trying to help myself recover means I am a bad person.
I want to be normal, I want to fit in. I want people to think of me as a person - not a person with (insert name of illness/disorder here), just a person with thoughts, feelings, passions of my own that have nothing to do with my health. In order to do that I need to be able to function as independently as possible, and in order to function in this way, I need to be careful how I use my daily spoon allowance and give myself regular “days off” to recover.
This is something I need. Not want – need. There is a very big difference.
My need to fit in and my desire to be independent is what helps me to have a life worth living, and yet I regularly get people who tell me that my independence means I cannot possibly be ill with anything.
I do not understand how these people reach this conclusion. Do they think that the world is divided somehow into people who fit and well because this is the only way anyone can possibly be able to live independently - and the rest of the population is bed bound/isolated/hospitalised or in need of permanent 24hr care?
This simply isn’t true. There are so many things, small things that would make my life so much easier, so much more enjoyable and so much more valuable to me. Occasionally practical help would make my life very much easier to manage. The opportunity to do nice things without being judged, or penalised for it in some way would make things better too.
People I know – friends, family, employers, colleagues and acquaintances over the years of my life have repeatedly told me, sometimes loudly and nastily, that I cannot possibly have anything wrong with me if I can spend a whole day in bed sleeping, or watching dvd’s, or reading. I am just lazy, an attention seeker, etc., etc. etc. And it gets worse if I do something that involves leaving the house.
They do not understand that I just need time to recover. I need to stay still for a bit so my body can reduce the amount of pain it is currently in so I can do stuff the next day without screaming in agony.
I get told “how can you possibly be depressed and still go to live music events?” They fail to understand that this is one of the best things I have found for mental respite. When a musician whose music I love takes to the stage and the music starts, something amazing happens and the music takes over. As long as the musical performance lasts, it does not matter how appalling my day, week, or month has been – the music just floods and flows through me washing it all away. For the length of the performance, I get total respite and it is a wonderful and glorious thing.
Sometimes I have to balance the number of spoons it cost me to get to the event vs how much respite it will give me, and on a bad day sometimes it’s a very close thing. The reason I keep going to these things is that they can have a positive echo long past the event. Talking on social media with other people that were there – on that night, can really help and be a wonderful positive, re-affirming thing. People who were stood (or sat) there with you, all of you singing along or nodding your heads (depending on the gig). It’s a shared, communal event and a wonderful feeling shared by many.
It is totally different to listing to the radio or a cd.
I have also been judged for smiling … *sigh* … the person said I couldn’t possibly have depression because they saw me walking down the street with a smile on my face, so I was clearly faking to get attention – which clearly makes me a terrible person.
The person who said this did not cross the road to talk to me on that day. If they had they might have known I had just been given some good news, and was also listening to a very funny song through my headphones. (I rarely leave the house now without music in my ears – it helps and I’ll take all the help I can get).
The person who accused me of being a fake, just because they saw me smile, is one of the people that never call me - it’s always me that calls them. They never offer to help, and they never ask – they always assume. It took me a while to figure out that actually they are not my friend at all, and my life is easier without them in it.
Friendship
If you think you are my friend, please – NEVER assume, ALWAYS ask. The answer might surprise you and friendship is built on mutual trust and respect. Trust and respect and friendship spring from shared knowledge. That is a two way thing – you both need to share with each other.
You also don’t have to love everything about someone to be their friend, but in order for a friendship to grow and survive you might have to accept that there are things your friend thinks or believes that are very different to you. If you value them as a person, and want to be their friend – accept these things, and agree to disagree. If we were all the same the world would be a very boring place.
Recovery and respite are necessary for daily living
I struggle now more than ever with allowing myself time to heal from whatever is happening in my life.
I struggle with the idea of taking a “day off” to try to regain some spoons, because people around me don’t understand that it’s what I need to do to help myself.
Every so often, I know that if I do not do something relaxing/fun/rejuvenating, then I will fall into depression of the kind that leaves me thinking there is no possible point in continuing with my life because I have nothing good to look forward to.
But also – every time I do… someone always makes one of those comments and I beat myself up for having taken a day off when I should have been… doing housework, or typing a document, or whatever it was I put off to spend a day in bed, or go to a gig.
It is VERY easy for this to become an endless circle (do stuff, try to recover, do stuff, try to recover …. Endlessly), and at some point, the pressure will make the circle snap. Since I know there is no cure for the health issues I have, there is only one possible outcome of that circle snapping - I will no longer be alive. My health, either physical or mental, will not be able to cope, I will have run out of spoons and will not have the ability to make more, so I will cease to exist.
When it happens, the idea of me making a phone call to any of the people or helplines won’t stop it. It will already be too late for that. The slide is way too fast, the snapping of the circle is unpreventable. It can be slowed, but for people like me it can’t be stopped. I might not take my own life – my body might give up instead, and there are definitely days when I think that slowing the rate of slide will definitely help me live longer.
I can already see that in my future and I am not afraid of the dying bit. My concern is how do I make the circle flow less fast and have a more positive life in amongst the merry-go-round of ups and downs and round-about’s that my life has?
How do I get people to understand my need for both physical and mental respite?
How do I get people to either leave me alone to get on with it & stop judging me, or help me in a way that’s actually helpful?
Physical help vs friendship vs spoons
My friends… none of them live close enough to me help me conserve physical spoons when I am unwell by coming over and helping with shopping or cleaning the house.
If I am too ill to get out of the house to get food shopping myself - I will have to go without, as the delivery charges for internet shopping are horrific especially if you just need a small amount of things… say a pint of milk and a loaf of bread. Cleaning will have to wait as well because not only can I not financially afford a cleaner, if I am too ill to clean, I won’t have enough mental spoons to guide them through what needs doing, where the clean bedding is, what is and is not rubbish (throw out my notes or old event tickets and face my wrath… when I am feeling better of course! One person’s treasures are some else’s rubbish – or something like that).
Most of my friendships were made when I was younger and we all moved away from there and now live all over the place. There is no, one city that I could move to, just to be close to friends who might be able to come and help with physical stuff. My nearest friend is a two hour drive away. That is a long way and a lot of petrol if I have run out of milk. I cannot afford a carer and I cannot get one for free – it is not a service that is available for people like me.
My friends very often, didn’t even know I was that ill. You see, we speak most often via the internet. They don’t phone and they don’t visit, and as much as they say after the fact that of course they would have helped if I had asked… I’ve actually been there before and there is a very definite limit to how many times someone wants to pop over and change your bedding for you, put it in the wash, help you shower and buy your groceries – mostly because they have lives of their own and this kind of practical help takes time…. Time out of their lives to drive over, time to help you and then do it all over again the next day and the next and then after you are better, go through the same again a month later when the next bug hits.
The friends that actually help start to become mysteriously unavailable or tell you that they see your friendship turning into carer and invalid.
They don’t want to be your carer so they stop being your friend.
They fail to understand that actually I don’t want them to be my carer either – but every time I’m sick and they find out afterwards they tell me to call them next time because that’s what friends are for…
I used to call them for help, but I won’t do it now – I would much rather manage on my own and still have them as friends after I recover. That’s why I have keep the freezer stocked with frozen meals, dry food (pasta and rice) and lots of wet wipes (for the days where a shower or bath is out of the question. Oh – and at least one full spare pack of nine toilet rolls, because you never know and I never want to go through That again!)
Mental health vs friendship vs spoons
It’s the same with mental health issues. I stopped telling people I thought of as friends because I was taking up too much of their precious time out of their own lives, out of their other relationships, and they started to see me as needy… Or clingy… always needing reassurance. They found talking to me about this stuff time consuming and difficult and stopped seeing our friendship as a proper friendship. They felt like my therapist or councillor and they didn’t want to be that - they wanted to be my friend instead.
There is no way in the world I will call any of these people when I am having a bad day. Not a chance! When I recover from whatever current hell I’m going through I will need someone to talk about fun stuff with and that will be those people. I need them to still be there when I come out the other side, so that I have something to recover FOR!
The time when the people writing the articles think I should be picking up the phone to call someone, is exactly the time I do not have enough spoons to start explaining my personal circumstances in order to stop some person (friend or a helpline) from telling me such clichés as “It is not that bad/cheer up/don’t worry/there is another way….” And my personal favourite “let me help you”
I tend to get sarcastic with the “let me help you” thing.
On a bad day my response might be – oh yeah? Going to drive over here and hold my hair while I throw up are you? Going to find a cure and fix my faulty DNA are you? Wanna fix my love life with a magic potion while you are holding my hair, restocking my cupboards, changing my sheets and trying to convince me life is not that bad? Really? Are you? ARE YOU?!!!
On a good day – I do realise that none of the above sarcastic comments are particularly helpful. I said those things out of frustration, to try to make a point at the time. People on helplines cannot get in their car and drive over to hold my hair while I throw up – neither can my friends as they have jobs and lives of their own. None of them can fix my faulty DNA, we just don’t have the technology yet. Magic potions force someone to do something they would not do of their own free will.
As much as I want friends, I want them to like me because – well…. Because …. I am me! Not because they were fed a magic potion or threatened with the curse of someone taking their own life if they don’t befriend them right now and continue to be their friend for ever and ever…
Is there an alternative?
So …. What is the alternative to phoning a friend or a helpline when things get bad?
I think there isn’t one. Not at that point anyway.
I think it starts way, way WAY before that.
I think it starts with awareness, and friendship, and kindness and positive things that help stop the depression getting so bad that you feel that there really isn’t any other way. By the time you feel that bad about things, it is unlikely (in my personal experience) that you are going to pick up the phone, so stopping it getting that bad in the first place, is a better solution.
Awareness and how to help.
Not just spoonie awareness, but relationship awareness. How often do you contact people you say are your friends? How do you contact them? What do you talk about? Do they trust you to tell you what’s really going on or are they afraid to tell you in case you reject them as being “hard work”? How many people do you know that are spoonies? Are you sure?
If you want to help someone – find the time. Call them. Chat. Meet them.
Do not make them feel guilty about it by telling them about the things you gave up/stopped doing/sacrificed just to come over and help them with shopping, or changing the bed, or scraping mold off the walls, or having a coffee and a chat about stuff.
If a friend is constantly talking to you about struggles they have – there are all sorts of ways to help. One of them is to let them talk, but make them aware, gently, that they do this a lot and you want to help, but you also want to be a friend rather than their therapist. Suggest ways they can still talk to you about things in a way you are both happy with - maybe set a timer for serious talk and for every serious chat you have to chat about something fun too for the same amount of time. I already have someone I do this with and it helps both of us. My friend feels like they are helping me, and I feel like I am being helped without overwhelming my friend at the potential cost of our friendship.
Another thing I was advised to do is be wary of “helping” a friend by constantly telling them what they are doing wrong. Sometimes you need to just accept people as they are and if you can’t then you need to move on. If they ask for help and you choose to do this, make sure that for every potentially negative comment you make, you balance it with a positive one.
Be kind. Talk about what phrases are best to use that won’t offend either of you. If you suffer from depression regularly and your friend wants to help, come up with an agreed code list of words and both of you have them by the phone for bad days. An example from my own life is that I HATE being asked if I am ok. There are so many ways it can sound condescending and that one also really easy to over use and very easy to just answer I’m fine.
I have a list of codes, that a friend of mine who was concerned came up with after a long talk about stuff like this and how they could help me without making this worse. Usually one word or set of initials standing in for a phrase, so I can be asked if I am SWP (struggling with physical stuff - and I pick an appropriate number or response from the SWP list….eg: 1) yes I fell over but I’m fine, I’ll do it all tomorrow 2) yes but there’s nothing you can do about it, I will have to get a professional in, but thanks for your concern 3) I’m angry you asked AGAIN having already asked me 4 times today so get stuffed and change the subject 4) no – its depression (switch to depression/mental health list) 5) no its depression can I have a virtual hug please 6) don’t want to talk about that, and please remind me tomorrow I didn’t want to talk today and use the metal heath set tomorrow…
The codes mean we can exchange information without having a long conversation that could be very draining for both of us, and so far it works. We are still friends and can check on each other without offending the other one.
Small kindnesses really help
Look at your friends list – is there anyone on there you haven’t picked up the phone to in a while? Or emailed? Or met up with? If you refer to this person as your friend then surely you know something about them – what do they like? Send them something they will like enough to smile. It doesn’t have to be the price of a Faberge egg… it could be a funny cat picture in an email, or if they read a lot make a bookmark for them of something they like… art deco picture from the internet, song lyrics about friendship – ANYTHING!
Receiving things like this can make someone’s day – they know for sure that today someone was thinking specifically of them rather than making a general, grab all, social media post.
Think about the relationship you have with the people on your friend list. Are you really being a friend if they are always the one picking up the phone, or sending the first email and you only ever respond? If you are truly a friend then it should be roughly equal who calls or emails first… it just happens. If it’s not happening then are you really their friend?
And random acts of kindness to strangers are more valuable than I can possibly tell you. (Note to self – do a separate post about this)
For me, I know that small things really help. A lot.
Thinking about the toilet thing and the short path from there to potentially taking my own life, I have become aware that many, many MANY times something wonderful has diverted me from that path.
Most often it has been a phone call, or a kind word or a post on social media from someone who knew that I liked (this particular song or musician/that book/that movie/that comedian or style of humour/that artist) and just posted something to my timeline.
Some days it’s a random act of kindness from a stranger…
To tell or not to tell, to share or ask or …
What I wish the people writing these “why didn’t they say anything to me about this… if they had only talked to me” articles knew, and this includes people commenting on them, is that the person they are thinking about – probably did.
They very probably did try to tell you. You might not have been listening/paying attention or heard but you misunderstood, or you might have reacted in a way that made them think – ok, I don’t want to lose you as a friend so I am never talking to you about this ever again because you clearly don’t understand.
Or maybe – it’s not even you. They have had someone ELSE react that way and they thought – ok – I will never talk about this because it drives people away, and I don’t want to be the person that drives people away because of that is what happens when you tell people - they run away, or say unhelpful things, or totally misunderstand, or all of the above.
It won’t be a one off. There is every chance the person has had these feelings before, maybe before they knew you. Them not telling you, might have absolutely NOTHING to do with you and your friendship with them and have everything to do with something that happened a long time before they ever met you. People generally don’t tell their friends every single thing about their lives, especially if they have people react badly to it before.
I think about ending my life often, I’m still here though, and most of it I have gone through alone because I couldn’t face the risk of being judged again, or rejected because someone would rather tile their bathroom than talk to me, or tell me I must be imagining it – my life couldn’t possibly be that bad….
I can see how it might be the same for other people who have taken their own lives. I know from personal experience that telling someone you feel that way makes their behaviour towards you change - and what I want, and I suspect they did too – is for your friendship to remain the same.
Most people want to save someone, but most people also don’t want to be around someone who has told them they have thoughts of ending their own life, and especially if they have said they have thought about it more than once..
No one wants to be asked 20 times a day – are you ok? No one wants to walk into a room and have everyone look at you and then have every single one of those people ask if you are ok, or ask if you are planning to harm yourself, or find that all the food has been cut into small chunks and there are no knives in the house – it doesn’t work that way, and that behaviour just makes things worse.
My own experiences tell me that people who say “talk to me” only want to talk about it once, maybe twice, they don’t want to keep talking about it at various points for ever. Their expectation is that you will talk to them, they will say something and you will feel better so you will never experience that feeling again.
Sorry. That’s not how it works. Depression can make you feel like this 20 times a day. It’s one of the reasons people with depression don’t want to tell anyone how they feel.
If someone trusts you enough to tell you, they did not make that decision lightly, and will only have told you if they trust that your friendship will not change.
Please, please, if someone tells you that they feel this way, be very careful what you do next. They trusted you with this. Don’t make things worse.
Would anyone notice if I was gone?
I have friends that post stuff online for me, and I for them but also some acquaintances that I wish I knew better so I could do more to help when they have a bad day too…
But some days that is still not enough. Some days I still think the world would be a better place without me in it. I struggle with everything and cannot see any value in myself. I have no skills, I will not be missed. My existence causes more work and more difficulties for more people that my absence would.
On a good day I don’t think of myself as friendless or isolated. I think I have friends and a reasonably healthy social life.
On a bad day however, I realise that almost all my face to face interactions happen with strangers (people on the till at the supermarket, someone on the bus or at an event). I talk to most of my friends online. I have friends all over the world, and we talk via email, or social media, or in chat rooms. But I do not have regular contact with any of them. I have gone three weeks without internet access because of a fault with my laptop, and again when I moved trying to get the internet access set up – and no one noticed. Not a single query from family, or friends as to why they haven’t seen me online. Not one. Nothing. No phone calls either, no messages on my answer machine, no texts on my mobile – nothing. No one noticed.
Some days I panic about how long it might take people to notice I am gone, when that happens and how dreadful that might be for my neighbours…
I fell in the bath a few years ago and was there for more than a day before I managed to get the strength to lever myself out and several hours to get from the bathroom into bed. What if I had hit my head and died? No-one was expecting me to show up anywhere and I was not expecting visitors. No-one phoned. I spent a week in my home before I could walk well enough to get to the shop to get food. People saw me walking slowly and clearly in pain but did not offer to help. It was a fortnight before the phone rang and the person phoning wanted to ask me something and then they said “can’t talk, I’ll call you properly later”…
No one noticed, not even my neighbours. I wonder if I had died that day how long would it have been before someone got worried enough to check?
I realise now that when I got out of the bath I probably should have called an ambulance and got checked out, but I didn’t want to bother anyone. I didn’t call my friends for the same reason. I didn’t want to make a fuss.
One day… maybe… the things that are helping me get through each night, and give me the desire to get up in the morning. The things that make me want to fit in, to feel normal(ish), to find a way to do all the things I need to do that make other people think I might be normal…at least normal enough to fit in. The things that make me want to keep living a life worth living – one day they won’t be enough to take me through and I dread to think that after I am gone there will be people out there who I have met in real life saying silly things like “I wish they had called me”.
Communication goes both ways
Those people who say, after the fact – why didn’t they talk to me about this….
I don’t see any of those people saying – I should have called them. I can’t remember when I last called them or saw them person. What other help could I have given…
Just to be clear – I am not saying that a person who has taken their life might still be here if they had received one single phone call from one person. I’m trying to say that it goes both ways, and is often much more complicated than a single call or visit or chat will fix.
It’s not a case of there being two clear cut sides to anything, it’s often way more complicated than that, and having some insight into how someone might end up there, and how you can stop, or slow the process of them getting there is much more complicated than a single phone call at the right time, or even whether or not someone is depressed.
You don’t need to be depressed to want someone to be kind to you, or to feel accepted, valued, wanted, welcome, invited…..
Anyone who talks to me long enough to know anything about me knows I have health issues and is more than likely aware that I suffer with anxiety and depression as well, so why did so many people not notice that I was not around for three whole weeks?
Hint – to call you I don’t just need your phone number. I also need to trust you that you will NOT EVER tell me to; pull myself together/buck up/just get on with it/stop being so silly/it can’t be that bad/it’s not as bad as you think/things will get better/or any other similar nonsense! You are not me. You cannot feel what I am feeling. You do not and will never know what it is like to be me. Having your phone number is not enough to get me to call you about these things.
Spend time getting to know who I am if you want me to trust you.
Trust, respect and friendship need to be earned over time and can only be earned through regular, pleasant, kind contact. There are several people I currently call friends, but I am increasingly aware that this is probably a one way thing. I call them, they do not call me. These are also some of the people on the “most likely to say why didn’t they call me” list!
Some people, however, will never understand.
Raising awareness of things like spoon theory does help SOME of the people who regularly have 1,000 spoons per day (which includes the 100 sleep/night spoons) plus their secret reserve bank of a further 500 spoons,) to gain some insight and/or understanding what it might be like to live their whole lives with a lot less spoons.
Some people, sadly, will never understand. In their world, how they see things is “I can do this so I am sure you could if you just tried harder!” It will never matter how hard you try to help them understand that not everyone is the same, their minds are utterly inflexible.
Whilst I would not wish my life on anyone else – there have been moments in the middle of the night where I wonder if there were a way to have those who fail to understand, live in my body and my mind for just five minutes…. Would it help them? Would experiencing my life in full technicolour help them understand that trying harder or being told to pull myself together still isn’t going to fix my faulty brain or my faulty body? Would it stop them saying such things? I wonder….?
I have been in the position of telling someone my depression was so bad I didn’t see the point of continuing only to be told to pull myself together and stop being silly. I was told my answer to their question of how do I feel about life right now - was a stupid thing to say and I was just being clingy, needy and overly dramatic. I was also told I was trying to blackmail them into visiting me. They asked, I answered. I wish I hadn’t.
I can honestly say that this experience means how I feel, right now, in this moment as I write this, is that - I will not be calling any of my current friends or a helpline the next time I start thinking thoughts similar to the toilet and bucket issue.
Education, Awareness, and doing something helpful right now!
What I will be trying to do instead of the phone call thing, is educate people that are around me as to what my daily life is actually like (spoon theory explanations seem to be helping so I’ll probably try a few more of those) and see which ones stay in touch.
I will be trying to educate people around me that it is not about that moment of calling for help one day – it is about daily experiences. It is much more helpful to have positive experiences every day. This is something everyone can do regardless of whether you know someone – just take a small amount of time every day to do something nice for someone else.
Go online and find someone RIGHT NOW that you haven’t spoken to in a while, show how well you know them and send them something they will enjoy – just because you want to stay in touch.
Kindness, gentleness, thoughtfulness all restore mental spoons faster than anything else I can think of. Take the time to show people that there is kindness in the world. You might help save their life, even if it is just for today – tomorrow you get a fresh set of spoons, and so do they and that extra spoon you helped them hang onto or restore today means they make it to tomorrow!
Every act of kindness helps. Today, tomorrow, the day after… make every day count. Live Life, don’t just exist. Allow others to live their lives too.
And never forget - some days virtual hugs are just as effective as real ones.
