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’ which best explains not only my life fighting myalgic Encephalomyelitis/CFS but also many other chronic illnesses.
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.
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.