From the title of this post you are here for a reason. Probably someone you know is effected in this way and you want to learn more. You may be about to become a mum and being a spoonie wondering how the hell you will navigate this. Perhaps you were already a parent and your health has changed and you are now a spoonie.
Being a spoonie is different for everyone.
Firstly being a spoonie is different for everyone, hell it is different for me from one day to the next so please do not take my story as a definitive. It is true for me and for others it will be different so if you are here to learn more about how you can support a spoonie parent then remember to listen and take note of their specific needs. Before I jump in I suppose I should give you an overview of what a spoonie is. If you are one you probably know the term but for everyone else the term spoons in this sense was coined by Christine Miserandino in 2003 in her essay “The Spoon Theory”. The spoons were used as a visual aid when explaining to her friend what it was like to live with Lupus. Christine handed her friend spoons and asked her to describe her day in tasks and removed spoons for each activity. Some activities may replenish a spoon. It is our task to make it through the day using the spoons we have.
Being a mum is a role I always wanted
I always wanted to be a mum. I wanted four children. I wanted to read books, play games, watch them grow, nurture them, the whole nine yards. I had to fight to have the two boys that I have. If you want to read more about my thoughts on being a mum, miscarriage and still birth then follow the links. Needless to say I wanted this and because of mental and physical health issues we were passed over for adoption, I could talk further about that but I will save that rant for another day.
When I imagined my life with children I never imagined being hindered in any way, odd really as in every other task I am hindered so motherhood would not be immune. Being a parent means your day automatically requires more spoons. This is true for every parent not just spoonies. The trouble is I, like other people managing disability/chronic illness or both start each day with less spoons. So as a spoonie mum I now have my own daily tasks and the ever changing needs of my children to assign spoons to. When I say there really are not enough spoons in a day I am not exaggerating.
Rationing my spoons
If you are someone who has limited spoons then you have to consciously plan your day in a way that an able bodied healthy person does not.
- Get dressed – 1 spoon
- Have breakfast – 1 spoon
- Go back upstairs to the toilet – 1 spoon
- Read book to the children – 1 Spoon
- Make Lunch – 1 spoon
You get the idea. I have ranted on instagram about the co-opting of the term self-care to mean mummy is having a glass of wine, a bubble bath and a face mask, hashtag self-care. For me those tasks are at least 3 or 4 spoons. Filling a bath, getting into it and out again and drying myself is exhausting. Some days a face mask would make me feel like it is lava on my face because my skin hurts that day. The bummer is I might gain a spoon as the hot water helps the pain, but it also makes me faint and will have a bout of palpitations and can it bring on a migraine. Spoon juggling is really a complex process. So adding in the tasks of being the sort of mum I want to be takes some very complex spoon juggling.
There is no typical day being a spoonie mum
- Wake up, get dressed and get the children dressed – 3 spoons (Children run around and getting them dressed, changing nappies etc takes up a few spoons so I have to plan and perhaps today I don’t get to wash my face and teeth straight away as that is too tiring I will do that after breakfast and a sit down.)
- Eat breakfast/feed children – 1 spoon (normally that would be a neutral spoon for me as I gain a spoon and lose a spoon but feeding kids, preparing extra food, washing extra pots)
- Take medication and painkillers, dink water, sit down. – Gain a spoon (Yeah I have clawed back a spoon, don’t worry it will be used)
- Read stories to children – 1 spoon
- Messy Play – 2 spoons
- Make/eat lunch – 1 spoon
So hang on how on earth do I get through the day? Well I try an swap tasks out like delaying washing myself. Think of it as driving slower when you are running low on fuel. I also try to reduce the number of spoons needed, let me explain. Reading books to the children, if I make sure I am in a really comfortable position and they are leaning or sitting on me in a way that causes less pain I can keep that task as a neutral spoon. A neutral spoon is how I classify a task that takes and gives a spoon. Creating neutral spoon events is the key to my existence. I also have to just let some stuff slide. Yes honey I would have adored to save some spoons today so that we could enjoy some love making but I played with the children instead. More on sex and disability in another post. Or perhaps I don’t clean up the toys and dishes today, but I have a mental disorder and that can impact on my mental state. Ahh the complexity of spoons.
Mental health and physical health are different
This is a pretty obvious statement but it makes my life pretty bloody tricky at times. It is also something that many well-meaning friends and healthcare professionals forget. Hey your psychosis and depression would benefit from physical exercise and being outdoors. Yes, yes it would but the crippling pain from my hEDS is going to hamper that. There is always a pay-off so often, depending on which one of my illnesses is shouting loudest that day will determine how I use those spoons. This also impacts on how I parent. Being very exhausted means that being able to have the kids run around in the park is great idea in theory. I have some outside time which helps my mental state, it also gives them time to run around and I can just sit. Well maybe. Guess what you don’t sit down when your children are in the park if they are under 5. You are catching them at the bottom of the slide, pushing them in the swing. This is when the guilt starts to grow.
All mums feel guilt, trust me I feel more
Having to say no mummy cannot push you on the roundabout is not a nice feeling. I might calculate I probably have 1 swing and 4 slide catches and then I am out so today I know I cannot play ball with you afterwards. That is an awful feeling. I have been passing for normal mentally and physically for as long as I can remember and believe me when I tell you keeping my mentally ill brain in check is exhausting enough, add to that pain management, working out what the hell you are saying because I can only really hear on my right side and I am constantly exhausted. Think back to a time you had flu, real flu and how lifting your arm to drink water wiped you out, that is me, everyday. Yes I have more spoons on some days but I could also have less spoons, some days I have borrowed spoons from the next day to carry my child, when the next day comes I really feel that loan. Having to say no to my children is hard. Having to ask a stranger to lift my child out of the swing because I just can’t makes me feel guilty and it is humiliating.
Choice and necessisty can flip a situation
Getting my children to do things themselves makes me feel guilty. Having a 2 year old that can dress himself, children that can tidy up, fold washing get themselves drinks and snacks sounds great. In fact I am probably teaching them some great skills and fostering independence. That is all well and good if I knew if I wanted to go and get them a drink of milk right now I could, or tidy their room for them I could. Knowing that in the moment I tell them they have to that is the only choice available stops it being a parenting win and makes me feel like a failure. How I move past that is I explain that if I tidy your room with you I will use up my spoons and I would rather save them up to play trains with you or have some messy playtime. I am also thankful that I have created a business that I can run from my bed, most of the time and can re-arrange time/spoons to make the most of my day.
Spoonie mums are not selfish we are superheroes
This next section is less about me and more about the disgusting opinions of others. Many people who have a disability or chronic illness do not always show that outwardly. “Hey you don’t look ill”. No shit, I have never heard that one. What this means is I continually have to explain myself. I have been questioned; “Is that your blue badge you don’t look disabled?”. Or on the bus when I had my child in a pram because I could not physically manage to carry them on and off and fold and unfold and was told I should move for a disabled person. I am a disabled person the real villain here is an ineffective public transport system not me, and if I am honest not the tired mum who is not disabled just exhausted.
Could you please lift my child out of the swing, could you please push them on a roundabout because I cannot- yes I know I don’t look ill!
I have been lectured to more than once when I am explaining myself that I should not have had children if I knew I was sick and disabled. I have been told that I am selfish for bringing them into the world. People can be wonderful but sometimes they suck. When they suck pay zero attention to them you are not selfish, you are a superhero. And your children they will tell you the exact same thing. Just between you and me, I am trying to keep it on the downlow but they have said I am the best mummy in the world. I know, so chuffed, I am expecting a prize in the form of a mug very soon, possibly a lavish award ceremony?
Hearing those words make all the spoon juggling worth it. The smiles, the hugs, holding hands, the I love you – It is worth it.
If you are here for advice this is my summation.
For the spoonies; listen to yourself. If leaving things a mess is okay today and will enable you to do other things then so be it. If your mental state needs more attention than your physical today re arrange your spoons to accommodate that. If you want to borrow future spoons because bloody hell you should be allowed to enjoy your children do that. I did this recently I took the kids away without Joe and wanted to yes to swimming every day. I am still paying for that but I am glad of the memories.
For the non spoonies; if you are an adult/parent supporting a spoonie parent read the advice I gave to them and help them with it. If they have borrowed spoons to enjoy something with the children then support them afterwards when they are floored and don’t berate them for pushing things. Accept that if you are the partner of a spoonie parent your love making spoons are not going to come around as often, don’t make them feel like crap about this.
As always I am open for emails and questions in the comments. If you are going to be mean and judge me for having children I will say now I will not respond to you, you are not worth the spoons.