As I lay on the sofa last week feeling lethargic with a bloated and sore pelvis, achy legs, an angry gut and very low mood I realised something…
I’ve reached my tolerance limit.
Symptoms have become too regular, affecting my daily life more than I’m happy to accept.
I imagine we all have our own innate limit – you know in yourself what you can manage and what you can’t – and most importantly when it’s time to take action. As someone living with IBS and endometriosis, I’ve accepted there’s going to be good days and bad days – that’s the nature of chronic conditions. But when the good days become overshadowed by the bad, it’s not on – and I’m at that point.
The problem with this realisation is the feeling that you’re back to square one. Again. But in reality, I know that’s not true. I’ve learnt so much about myself over the last few years – I’ve just got more to investigate, that’s all. Besides, it was only December that I was diagnosed with endometriosis and I’m very much still learning about the condition and how it affects me. It’s a lot to digest! (Pun intended…)
So back to this tolerance limit – I’ve noticed a cycle and it goes a bit like this:
The cycle of tolerance
- Experience symptoms
- Either find a way of managing them, or, for whatever reason, they start managing you
- Period of feeling crap, leading to even lower mood and constant questioning of self, potentially to the point of doubting own chronic illness
- Stay feeling crap or decide enough is enough
Repeat cycle until you find your balance – this will (hopefully) last, or you may end up revisiting the cycle somewhere down the line.
Looks can be deceiving
The difficult thing about all this is that to the outside world there is nothing to show how you are feeling inside. It’s a bit like a duck – leisurely swimming along and appearing calm and collected on the outside, but underneath paddling like mad. You can paddle this way for a certain amount of time, but eventually, you wear out.
On a day-to-day basis, at work or in social situations, I try to get on with it. I suppose I’ve become so used to feeling this way of late. I only really talk in-depth about how it affects me to those I’m very close to – after all, who wants to be greeted with ‘well actually I had a really bad flare-up’ or ‘my pelvis was giving me jip’ on a Monday morning after asking ‘How was your weekend?’ Hardly a conversation starter is it?!
Not only that, I get sick of hearing myself moan. I feel so guilty because I know things could be so much worse – gosh, you only have to turn the news on and see the horrific things taking place across the world. I think it comes back to the chronic nature of it – it has the power to take over your life, gradually impacting the things you do and it’s the daily grind of it that gradually gets to you. I’m noticing myself becoming more and more negative schmegative and I’ve realised just how much managing my symptoms (or not, as it seems) restricts my lifestyle.
Staying positive and proactive
Having reached my tolerance limit, I’m trying to take positive steps to help myself. One of the biggest learnings I’ve had through all of this is that you’re the boss of your own health and you have to be your own body’s detective – no-one else can do it for you. Agreed, this can be difficult if, like myself, you’ve attended a number of doctors’ appointments where you’ve left feeling like nothing more than a neurotic nuisance…but anyway – let’s pass over that. By being proactive, I believe it keeps you positive because you feel like you’re taking steps forwards, instead of back. So, the steps I’m taking?
- I’ve asked for a referral to see an endometriosis specialist – keeping everything crossed.
- I’m educating myself more about endometriosis since the condition is so new to me. Well, not really ‘new’ given that I’ve been experiencing symptoms for well over 5 years, but you know what I mean. I’ve started reading ‘From Pain to Peace with Endo’, written by Aubree Deimler – one very inspiring woman. The part I’ve just read is about diet and it’s fascinating. The low-FODMAP diet made a big difference to me back in 2014 with IBS – who knows, maybe it’s time to revisit that again given so much time has passed and things have changed – perhaps I’ve become too ‘modified’ in what I eat and need to consider dietary changes for endometriosis.
- I’m going to see an Ayurvedic Practitioner. This came from a recommendation through one of my mum’s friends and I’m really intrigued to learn more (I’ll keep you posted!)
Can any fellow spoonies relate this cycle? I’d love to hear where you’re at and how you deal with the ups and downs.
Sending hugs and support,