coins

Well, here we go. To be honest or not? This is now my third attempt at posting this weeks blog. I’ve actually almost pressed post on two fabulously uplifting feel good blogs. I just couldn’t. I figured the only way this relationship is going to work between you and me is to be frightfully honest.

Reality is, I’ve had a shocker of a week. Worst in a long time. When my health declined this week I didn’t handle it well. In fact, I fell in a heap and cried. I was so cranky with myself for opening my big fat gob last week and proclaiming to the world that recovery was possible, and now here I was – one big fat mess. I’m nothing but a fake, I proclaimed to my husband as I sat on our kitchen floor in full thrall of the ugly cry. I really wanted to crawl into a hole with copious amounts of dark chocolate and stay there. I’m just not ready! What was I thinking? I must now wait until I’ve gotten myself completely sorted before I write again. I felt like more of a health worrier than a health warrior.

After much thought and with the encouragement of some lovely people, I’ve decided to get on with it and write anyway. If I wait until I’ve got it all together, I just may never do anything. It’s like trying to get fit before joining the gym. I figure that Successful people are not necessarily the ones with it all together we are the ones having a go with what we have right now, no matter how small. We all have something we can do well. For me that changes daily. Some days its ‘well done me’ I’ve brushed my teeth and other days I’ve conquered stuff off the to do list like a freaking superhero. Funny thing is, the days I have managed to drag my arse out of bed and shower when I’ve been violently ill took loads more strength and fortitude than the days when I achieve heaps just cause my health allowed it. So this is me – imperfectly having a go. To help you all understand what life is like for me and maybe even you or someone you may know, I thought I’d share the story of ‘Meli’s coin purse.’

About ten years ago I was feeling frustrated out of my brain that I was unable to convey to my husband what day to day living was like for me. I came up with “meli’s coin purse.” It worked like a dream and gave me a practical way of providing him with insight into my world.  I wholeheartedly encourage those of you who are having trouble explaining to your loved ones what living with chronic illness is like day to day, please give this analogy a go, as it really worked for me. For those also reading who don’t get “it” – listen up.

Overwhelmed one morning that I had so much on my plate that day and that my hubby just wasn’t getting it, I lost it with him and screamed at him, “It’s ok for you, you have endless coins for the day.” He looked at me blankly wondering what I was on about.  I explained to  him that he might have a hundred coins a day to spend, I only have five; which is tough because a coin would be required in order to achieve the simplest of daily tasks.  How many coins did he need in a day?  He gave a coin for work, a coin for gym, a coin for family, etc, etc. I asked him how would he get all that done if he only had five coins?  Especially when a coin would be required to just to get out of bed, another to shower, driving to work another coin. Taking a phone call – a coin.  Every single task, no matter how small would require a coin.

I watched as he contemplated his coins in a whole new light .   All of a sudden he became aware of every part of his daily functioning. He said to me, there’s no way I could get everything done with only five coins.   Your right. I told him. You can’t! Welcome to my world.  You must now choose very carefully how you spend each coin, because when they are gone, they are gone. And the consequences of over spending could leave you penniless for days. He looked at me, his eyes filled with tears. He finally got it.

What makes it all the more difficult, is the ups and downs for those that suffer mental illness or Chronic fatigue. We never know until the day just how many coins we might have to spend. Until we open our eyes in the morning we do not know.  I hope that  this might help you understand why we canceled that coffee date with you, why we didn’t offer to help you move house or babysit your kids. It wasn’t because we are ignorant or didn’t want to, actually saying no broke our heart.  Everyday for us is about making choices,  striving to keep balance and avoid a crash.  It’s survival.

Learning to make sense of  ‘the coins’ might help those of you who have loved ones that suffer. I hope sharing this brings understanding.  Please know that when we do spend time with you it is a well thought out intentional choice to spend our precious coins, it is never without forethought. So all those times you felt like our friendship was imbalanced maybe you felt like you were the one making more effort. I’m sorry if it feels this way for you, when in fact we are forced to think about everything we do, we have to plan and prepare.

We have to spend less coins if a big day is coming up. After an event like a family party or those days when unforeseen things happen, especially with children, these unplanned situations deplete us, often not only of today’s coins but also eat into tomorrows portion. Living in such a deliberate manner is not easy to implement, particularly for those of us who have naturally fun spontaneous personalities. Restraint is hard – we hate it!

This can all be confusing and frustrating for family and friends. Some days we might have ten coins and other days only five. We never know. This is why our commitment might seem irregular and inconsistent. I hear things like, “Oh, I thought you were over that? You seemed so well last week.”  Friends see a photo of you at an event on Facebook and think, “Oh Melissa is better that’s good.” Little do they know that I couldn’t shower or leave the house for days after that event due to coin depletion.

My whole life is thought out. Every exertion is tallied. A constant profit and loss statement running in the back of my mind each time I’m asked or needed to do something. A glass of wine at a party uses a coin. A late night could use two coins. An unplanned phone call depletes me.

Friends and family have often poked fun at me about how I shut them out when I close the front gate on our property. These judgements can be hurtful.  When I choose to take time out some see this as me succumbing  to the illness and being reclusive. They think I’m giving up, going easy on myself. When in fact, I close the gate when I know I’m on a low coin allowance that day. I close the gate when I know that an unannounced visitor would take coins that were already allocated elsewhere, usually for my children. My gate is closed as a safeguard to ensure my wellness  – not my illness!

My husband and my darling Dad now often refer to the coins. Sometimes as a secret code when out socialising they will whisper to me, “how are your coins?” Or if I’m planning too many big days in a row, they will gently ask, “Do you have enough coins for all that?” This is an easy less confronting way for them to check in with me; and not so insulting as being told what to do.  Even my teenage boys refer to the coins.  On my way out the door to pick up my youngest from dance the other day I was stopped by my seventeen year old son Arlan.  “Mum” he said, “I’ll go pick up Seth from dance. Save your coins, I know your going out tonight, save your coins for that.” This kind of support and understanding can make all the difference.

Please don’t  think that we are unaware of how difficult it is to be in a relationship with us. We realise that sometimes it’s all or nothing, that some weeks you may receive 10 texts from us and then not hear from us for weeks, sometimes months. We know it. We dislike it. We are trying with every fibre of our being to change it. Please be patient – we need you! Know that when we do choose to  spend our coins on you it was a well thought out deliberate choice because we really love you!

Now go and have the best week you can. If possible let a dog lick you in the face. I promise you’ll laugh.

Buziaki,
Meli     xx

PS: Since writing this piece I have been made aware of the ‘spoon theory’ and that Christine Miserandio has copyrighted her theory.  I’ve googled the theory and wow it’s a big deal out there…..obviously I have been living under a rock?  Some have questioned my stories authenticity and now seeing how famous the spoon theory is and how amazingly similar our stories are, I understand some of your suspicions. My heart is 100% for community and loving and helping others. My coin story is pure and real and mine, I’ve been implementing it in my life for many years now. Any similarities in our stories is purely because we are living the same battles.

 

37 thoughts on “coins

  1. Mel, I look forward to your posts so much! I love to hear your take on everything – never be afraid to post the ugly – those are the moments that inspire all of us to keep on trying xxx Love the coin story xxx

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  2. What a wonderfully honest blog. Thank you for your coins analogy, it will help a lot of people understand how conscious we all must be if how we spend our coins, not just the unwell, there is a lesson for us all in spending wisely. May your purse overflow soon.

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  3. Mel, you are full of surprises. Please dont feel you have to apologise for your bad week. You know they are going to come. And then they go. You’re strength to then pick yourself up again is inspiring. Love you longtime! Xx

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  4. Oh…My…Goodness! No one has EVER described my situation as well as this Mel. Thank you so, so, so much for sharing so courageously. I look forward to sharing it in the ME/CFS/Fibromyalga online community. Rest well. I can only imagine the coins it took to write this.

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  5. I look forward to these blogs.. Thanks so much for keeping it real and speaking honestly about your everyday life. I’m sure it must make you feel quite exposed but it really does help us to look at things differently and to grow in compassion and understanding. Be encouraged and I really do pray that your coins start to multiply in number each and every day. Xx

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  6. Thank you for this post. I am also recovering from lyme / CFS and know what you are going through. I was once the mom who ran four miles with her kids in a double jogger for groceries in 90 degree heat. The transition has been as difficult physically as it has emotionally. You mourn your former self every day. I’m improving as you are, but there are many set backs along the road to recovery. You just keep your head up and keep doing the right things, knowing it’s a journey and you’re gonna get there.

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  7. I’m so glad you chose to turf your other posts Mel! The awesomeness of your honesty & bravery is an honour to read! Though we don’t get to see each other as often as we once did you are always in my thoughts & heart. Love you. XXX

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  8. Mel
    What can I say that was just beautiful and amazing ……..
    At times I could barely read through my tears
    You are one very brace and talented young lady whom I am so glad I got to grow up with even though we have been apart for years I still can smell and feel times together 🙂
    You have just shower me the most perfect way to help me and my family connect and let them understand my every day 😦
    I try to alway make the best efforts to do everything and stay bubbly and positive but in the inside feel like I am going to die.
    I had a stroke 18 months ago and now suffer anxiety and chronic fatigue
    No one understands as they say you look so good and happy but the effort behind it is excruiciating and to go out in public just makes me feel ill
    So can I say a very big thank you for showing me a way

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  9. Dearest Beautiful Mel, my mum brought up your coins blog today and told me I need to read it and I got home and remembered she was insistent that I read it and I’m glad I have ….. A lot of people I have known ,know or have met like to sweep illness wether it be pyhsical or mental under the mat and we will deal with it when we can handle it or they are ready however those of us with these illnesses don’t have the luxury of choosing when we deal with it as we live it everyday… I remember days of not getting out of bed or showering or dealing with the kids I just wanted to hide under the covers and the world to disappear and hiding from the outside world never letting my kids go to others places the fear would over take me….I have been lucky to have a supportive nan and mum by my side and I have a few friends who understand.. I tend to give and give and I crash hard… However I understand each day is a challenge and even now some days my mind and body want to do opposite things however I have learned to breathe and I take everyday that comes …thank u for sharing your hard times as well as your good… Love you mel and I take your coin Analgy with me…xxxx

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  10. Mel, what a brilliant, honest post!! This describes what my daughter faces everyday! CFS and many other chronic illnesses have such little understanding. Thankyou for explaining the coins so well. And please keep writing, your voice needs to be heard!! Xx

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  11. Amazing! Thank you so much for finally giving me a way to explain how my illness and chronic pain effects me. Love you and your courage to blog such honesty xx

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  12. Wow, I have only just discovered your blog and this post resonates with me enormously! Thank you for your honesty, it is very refreshing.

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  13. Why oh why are so many people struggling with this today? Thanks for your honesty. I am sharing your blog with my children & SIL. I ‘get it’. Putting ourselves and family first is a priority for mental health, health , wellness & happiness. All the best!

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  14. This is awesome! So glad I came across it! I had a bad week last week to and I loved how you described the coin analogy. Thank you

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  15. I don’t even have a chronic illness (mild anxiety & depression at times) but I can so relate to this. My coin allowance probably doesn’t change so much from day to day, but the rest – absolutely. And my balance does seem to carry over. Spend too much today and it takes away from tomorrow’s balance. Do that a few days in a row and wowee! Look out! And I feel dreadful because I enjoyed spending my coins – I should be happy, shouldn’t i? But I’ve spent too many coins and left none for things like patience and cooking dinner or even making myself lunch (and end up eating toast, coffee and lollies, all of which give me credit for a few hours but charge me interest in the long run!) So yes, I’m reluctant to commit to things because I’m worried that when I get there I won’t have the coins to pay for it and I’ll end up disappointing people or letting them down. :/

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  16. may god bless you whoever you are..yes am suffering..and i dont care about the people what they think about me ..even i dont need any sympathy… but god bless you whoever wrote ths

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  17. Having lived with a husband who was chronically ill for many years, this really spoke to me. I understand all too well the judgements, misconceptions that exist from well meaning friends and family. I also understand the emotional impact it has on a young family and your personal relationship. For me the hardest thing was not knowing a single person who could relate and having no one to talk to about it. Being chronically ill can make you feel so isolated from everyone. Good on you for sharing.

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    1. Oh my goodness.
      You’ve just put words to my feelings
      I feel like that was my heart and soul being expressed as I read through your blog.
      Thanks so much for making the decision to share it. Going by the remarks above you’ve blessed so many by doing so.
      A heartfelt Thank you!

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  18. I love the analogy about the coins, that’s exactly how I feel! I will definitely use that one! Brilliant blog, keep it up! 🙏

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  19. Wow. This is my world too. Thank you for putting it into words so clearly for others to understand. The coin analogy is brilliant.I have just lifted you up in prayer. May you be wrapped in a blanket of God’s warm blessings of comfort, peace and strength.

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  20. Wow. This article nails what I have been going through. Please read and share. It will give you so much insight into the lives of most tackle these challenges. Love the coin analogy and this paragraph particularly: “What makes it all the more difficult, is the ups and downs for those that suffer mental illness or Chronic fatigue. We never know until the day just how many coins we might have to spend. Until we open our eyes in the morning we do not know. I hope that this might help you understand why we canceled that coffee date with you, why we didn’t offer to help you move house or babysit your kids. It wasn’t because we are ignorant or didn’t want to, actually saying no broke our heart. Everyday for us is about making choices, striving to keep balance and avoid a crash. It’s survival.”

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  21. Oh my!! This really made me cry sooo much as it is if you are describing me, my life and how hard it is to explain or talk about it to loved ones or anyone for that matter.. Thankyou from the bottom of my heart for sharing this as you are braver than I am for at least attempting to be honest and share with us what its like living day to day on little “coins” you have 😊 Honestly I can’t thankyou enough ❤

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  22. Mel, you are truely an inspiration. I suffer with mental health issues and live along, so many people only see me when I have enough coins!! Please keep well and always have enough coins for yourself, but keep writing when you can, it is a joy to read your thoughts.

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  23. Thank you Mel. You have helped me understand how I should confront my disease and help others understand me better. Many tears were shed by myself and loved ones reading your blog. I am so inspired and feel like I can move on to the next phase in my journey. Thank you, well wishes and positives thoughts being sent your way

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  24. I don’t make it a habit of commenting on blogs but reading this….it is as if you have read my mind. Thank you for sharing your coin analogy and putting into words how I feel so that I might be able to share it with those whom I love and those who rely on me. Blessings to you x

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  25. Thank you .I am just coming out of a particularly bad bout of depression and anxiety. I have lost a couple of friends this time round as they just did not understand how hard it was to even get out of bed,let alone go out for dinner or even talk on the phone.Love your coin idea. I am lucky to have the love and support of my partner .Thank you again for the well written article and heart felt words.I will be sharing.

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  26. You trusted your instincts and created a blog that is so real. Any person with chronic fatigue will totally identify with everything you have written about. One of the hardest parts of a “invisible” debilitating chronic condition is its tendency to create a feeling of deep isolation, that slowly disengages us from people who just don’t get it.
    It’s not the need to talk about our challenges all the time, but it is about the need to feel validated and at least somewhat understood. Good for you for putting it out there! It helps people in a similar struggle to feel a little less isolated. You have a great writing style so I hope you will carry on with your blog, and give yourself lots of leg room for an unstable energy distribution from day to day. In other words, don’t feel guilty about when you think you should have been writing but have not. 💛

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  27. I understand your story so well. I love the correlation between coins and energy…..love it! I too suffer from a fatigue that has stemmed from some injections given to me this past November and it has left me with a diagnosis called ‘Sirva’. I was told I might have flu like symptoms and to take something over the counter for pain and fever. If it did not subside, to come back in. Well, the symptoms came and they got increasingly worse by the day, until at the end of two weeks, I was unable to get out of bed without the help of my husband, just to go to the bathroom. Bathing was the largest chore I have encountered. The breath it takes to do this is unbelievable and then after a bath, I am so exhausted, I wanted to go back to bed and do. I have left the house very little and my friends think I am ignoring them. But it is hard to make them understand as you have stated that one knock on the door or one car driving up in my drive was more than I could handle. Just knowing that upon entrance, my energy that I had on space for reserve, was about to have the plug pulled and I would be totally drained only to reset the start button. I feel your pain, I know your walk, and I understand your testimony. I have not been to church for almost two years, due to the energy it takes to get there and then how quickly the reserve I have, depletes almost immediately just in speaking to friends and worshipping. We went to a wedding on Saturday, and before the reception could start, we had to leave so that I could breath and then when we came home, I just got out of my clothes and went to bed. Wanting to go to church where God lives is something I long for, but they look at me and cannot see the pain, I am harboring or the lack of energy I have. They seem to think cause I look normal?????????????…..that all is well!!!!!!! Not…..now I am going to go and read about the spoon theory…..interesting……you read my book and you don’t even know me. You spoke my words and we have never talked. You understood my plight and explained it effortlessly. Thank you for sharing…..I thought my friends were the only ones that thought I was going crazy and becoming a recluse. There are weeks that my truck does not leave the driveway and that is ok……I am better off in the confines of my home and my space rather than dealing with people who drain my energy and leave negative energy behind. I struggle with family relations now….but I don’t have time for them to try and understand when they have seen the slope I have been sliding down for years……I am almost at crash point but try everyday to move forward. Some days I too spend few coins and do well and then others I spend no coins cause I have had to go to bed because the few I spent the day before, has wiped me out for a week or sometimes two. God bless you……more of us out here than you realize.

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  28. Thank you so much for this post. It’s really helped me to help people in my life understand what I go through every day. I’m always fearful of being so honest in my posts but I do it anyway…people can think what they want. Reading posts like yours helps me so much X

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  29. Thankyou so much for sharing this coin analogy. It is so how I feel. I have CFS and autoimmune illnesses. I struggle most days and I am a health coach so I often feel a bit hypocritical!! But I also remind myself if the wounded warrior/healer concept. I will be definitely sharing this with others to help them to understand me ! Thankyou so so much X

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  30. Wow! I’ve used the “I only have so many dollars to spend in a day, and I don’t know how much I have till i wake up” analogy to explain to my husband and friends too. It was really helpfull, especially with hubby! I sometimes share it w clients as a communication strategy to use w their loved ones. Soooo Cool to meet someone who’s spontaneously come up w the same analogy – very excited and feeling connected to u right now! Your story is beautifully expressed. Thankyou For blogging this and raising awareness! Much Love xo

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