What having chronic illnesses has taught me

Navigating life with multiple chronic illnesses is hard, I spend a lot of time battling crippling pain and fatigue which can make the simple is of activities a monumental task. That being said I have learnt so much from having chronic illnesses and I just thought id share some of them with you

❤️ Chronic illness does not discriminate – it doesn’t matter how young you, how fit or how active you are you can suffer with a chronic illness

❤️ To truly listen to my body and give it what it needs – with chronic illness if you don’t listen and act on what your body needs you will feel worse.

❤️Time spent resting is not wasted time – I have never really someone who has been able to just sit and do nothing. I saw it as there was always something that neededed sorting or doing. Now I truly listen to my body I realise that actually at times rest and to do nothing is exactly what my body needs and so is a good use of time and not a waste.

❤️ You can do everything right and still flare – you can take your medication, rest lots, eat well and get some fresh air and still end up in a flare which you have absolutely no control over.

❤️ To use my time wisley – as discussed in my post on spoon theory when it comes to energy those with chronic illnesses only have a finite amount. Meaning I need to think about how to use it and not waste it on things that I just don’t need.

❤️ The importance of mindfullness and being in the moment – mindfullness can help in a couple of ways, firstly its a great way of managing and minimising stress which is a major trigger for fibromyalgia and Endometriosis. Secondly it helps you stay in the moment, with chronic illnesses I often find myself stressing over things in the past and worrying how the chronic illness will affect things coming up both of these rob you of the present moment. So mindfullness can help you recenter yourself and just be in the moment.

❤️ Who my true friend are – when you have a chronic illness you tend to cancel plans last minute despite wanting to do whatever it is because your body just can’t manage it. You will lose friends along the way but the true friends will understand and stick by you no matter how many plans you cancel.

❤️ How amazing the online chronic illness community are – there is so much support in the chronic illness social media communities. There are so many people who are there to support you.

❤️ How to hide my symptoms really well – over the years I have masteree how to make myself look absolutely fine from the outside. I know some people may find this strange but sometimes in some situations its easier to not have to explain what’s wrong with me.

❤️ How to truly advocate for myself – endometriosis in particular took a very long time to diagnose as the medical system as a whole sees painful periods (even ones that leave unable to function) as normal. To get diagnosed it took me a lot of research and a lot of standing my ground and insisting I see a gynecologist.

❤️ The importance of preparing for medical appointments – my very first appointment with my gynecology specialist was certainly a learning curve, I got all flustered as I really didn’t feel I was being listened to meaning there was loads of things I wanted to say and ask that escaped me in the moment. After that I have never turned up to an appointment unprepared. I keep a diary of my symptoms (I use an app called bearable) , what they are, how it effects me, when they occurred and how long they lasted and what if any medication I took to help and how effective it was. I also have all the questions I need to ask writen down!

❤️ The true extent of my inner strength – I’ve always been very adventurous which people view as me being stong. But I never really understood just what inner strength I had till I was living in pain everyday. It takes a lot of strength to carry on with a normal day while your body is betraying you and raging in pain! No wonder the community calls each other as warriors.

So why a spoonie way of life?

When deciding on a name for my blog I wanted something that encompass all my chronic illnesses but wasn’t only about that and A Spoonie way of life was born.

But what is a spoonie and how is it relevant to my life. The term spoonie is well known within the chronic illness community but what actually is a spoonie?

The term comes from Christine Miserandino’s Spoon theory which she used as a metaphor to describe how she felt about managing her energy and activities due to Lupus. The theory is a great representation of the struggles people with chronic illness have trying to do normal day to day activities with only a set amount of energy and is widely used within the chronic illness community and is a fantastic way to describe to those without chronic illnesses how you have to plan a head when living with a chronic illness. So simply a spoonie is simply someone who has to manage their energy due to chronic illness. So for me my endometriosis, Fibromyalgia, chronic fatigue syndrome and Hypermobility spectrum disorder all fall into the spoon theory analogy hence I class myself as a spoonie.

So what actually is spoon theory? In short you start the day with 12 spoons which represent your energy and each time you do an activity you take spoons away.

For example if like me last night you managed very little sleep you automatically take a spoon away before even getting out of bed. You also take one spoon away automatically if you forgot to take your meds or skipped a meal and if you are sick on top of your chronic illnesses you take away four spoons.

The activity vales are broken down as following –

One spoon – getting out of bed, getting dressed, taking your meds and watching tv.

Two spoons – bathe, style hair, surf the Internet and study or read.

Three Spoons – make and eat a meal, make plans and socialise, light housework and drive somewhere.

Four spoons – go to work / school, go to the doctors, exercise and go shopping.

You are able to borrow spoons from the next day but the only way to replenish them is by rest.

Welcome to Living a spoonie life

I guess the first thing I should do is explain a little about myself so here goes. I’m Naomi a 30 something attempting to live as normal a life as possible despite multiple chronic illnesses which mean I battle chronic fatigue and chronic pain in some form everyday.

While I don’t want to dwell on or focus to much on my illnesses as they don’t define me as a person, I feel its important to talk about them as they are major aspects of my life.

Endometriosis was my first chronic illness diagnosis back in 2018 after over 10 years of suffering! Then came my Fibromyalgia / chronic fatigue syndrome diagnosis in 2019 and my most recent diagnosis was hypermobility spectrum disorder which came in 2020. All three have pain and fatigue / chronic fatigue as some of their main symptoms which means unfortunately there isn’t any time I am not in pain or working with a limited amount of energy! The latter is where the name Living a spoonie life comes from but I there will be more on that in my next post.

Right now that’s out the way a little more about me. I am a self confessed crazy cat lady (I have three black rescue cat) who has a love of rugby, travelling, baking, films, comedy and crafting.
I wanted to start a blog to show what life with chronic illnesses is really like and how despite them having a major impact on my life with a few little changes and plenty of life hacks I can still do pretty much all the things I could do pre chronic illnesses.