#potsiewarrior

[bethelightbethechange]

Me, still, 3 years into chronic illness diagnosis despite living with symptoms daily What is this? What's happening to me? Is it all in my head? Wtf?!

[bethelightbethechange]

When you have been sick as long as I have ( and many others), and were once high functioning you realise how much of the little things in life that you took for granted are now luxuries. Things like washing your hair. Blow-drying. Moisturising your body. Applying any form of make up. Eating a nice, home cooked meal. Waking up and cleaning the house. Falling asleep with freshly washed sheets that you took off the line. Things I used to take for granted or even complain about I now cherish and bring me infinite joy to do- when I can do them

[bethelightbethechange]

Your dreams don't go away when you have chronic illnesses. They just become muted, pushed to the back of your mind to be accessed again when you are capable of achieving them. For me, they are just hazy, on the edge of my consciousness at all times- a constant reminder of what I can't do, who I want to be.

bethelightbethechange

[bethelightbethechange]

Spoonie tip

When you have a flare, know that you will be extra sensitive the following days and don't be so hard on yourself. Wear the eye mask Put in the earplugs Avoid the crowds Look after yourself and be kind

[bethelightbethechange]

Being constantly house and bedbound is one of the most overwhelming experiences- ever. You feel and ARE literally stuck in one place, whilst the rest of the world is moving and experiencing things around you. You feel like you are running out of time, missing out, not realising your potential. And you never know how long it will be for, I think that's the worst part. You never give up on getting better but at the same time you don't have a clear treatment plan to follow, or confident Drs that know how to treat you. They just throw random doses and medications at you that "may" help and you have to suffer the consequences and side effects when they don't. That's a heavy burden for someone already suffering don't you think?

[bethelightbethechange]

Spoonie tip

Before doing anything, ask yourself " is there an easier way to do this?" ( Or even better delegate it)

Small adjustments like sitting instead of standing whilst doing something make a big difference

You don't have to do things the way you used to

Don't let your pride and ego get in the way

It's time to think differently

💟

Bethelightbethechange

[bethelightbethechange]

I watched a clip on social media years ago. It was an old navy dude saying if you achieve one thing today start with making the bed. It was about discipline I think. I took it to heart ( because no one was helping me, I was trying to find my way) and at the worst of my CFS all I was doing was getting up, making my bed, going to the toilet and getting back in. I was using an able bodied persons logic around what constitutes perseverance, success and discipline. I've only recently realised how distorted cognitively I am in so many ways, trying to still apply what is easy and normal and basic for a high functioning person rather than modifying for my conditions. Nobody has taught me that though. I have had to be the one to say hang on, I can't do things the same way anymore, what else is possible? I've had to be like, no it's ok that i don't use that energy to make the bed because actually I need it to stand, walk, talk, shower, eat, brush my teeth instead. You don't realise how much energy simple actions take until you have to break everything down. And you have to break everything down and figure out what's really important and what's not. A nice made bed is awesome but if you are crawling back into it in 5 minutes wouldn't you rather use that energy to eat? I used to feel huge guilt not doing it or even basic things or from sleeping in because I couldn't fall asleep until 2am. Now, I realise I can't force my body to be something it's not. I just have to support and love myself as best as possible and find a realistic baseline of activity that doesn't make me feel shitter first, before I start including less necessary stuff. It's a exruitatingly slow process. And it's really stressful when I'm constantly comparing myself to how I "should" be and to how other wellbeing public speakers say I should live. That's the hardest part. And we can't be stressed because then our bodies and minds don't actively rest so we don't heal. Chronic illness is complicated, there are so many layers to understand and add that to all the grief and loss you feel because of who you were- my god it's a huge convulted mess! So, be ok with who you are and what you can do, today. Make the adjustments and swallow your pride and forget what you think you should do, and do what you can. You are not lazy. You are not unmotivated or complacent. Look a how hard you fight EVERY DAY to get better and to improve. If you could do more, you would. And eventually you will be able to but it may not be how you used to. Just be incredibly kind to yourself for now and give yourself time x

[bethelightbethechange]

Me when my symptoms start increasing: is it my blood sugar? Blood pressure? Heart rate? Pots? Mould? Just tired? Post exertional malaise? Anxiety? PTSD? Or something new?

I don't know where to even start anymore😂