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Instead of ‘Get well soon!’

If you, too, squirm every time you hear ‘get well soon!’ Then this is for you, with love, from me 🥰

I just want to preface that there is nuance here! Of course the intentions of ‘get well soon’ are good and it’s a way to show you care. But for many of us with mental health conditions, chronic illnesses, disabilities, or many other ailments, hearing it over and over again can be really grating, passive, and is a reminder of something that might not, or in some cases will never, happen. In some cases, when said repeatedly even after being told by someone that these words are hurtful, they are an ableist microaggression. I am done with feeling ashamed about not liking these words. Why on earth wouldn’t we all want to use more inclusive language? Why wouldn’t we want to say something that is more helpful than just ‘feel better’? If this isn’t for you that’s fine, I hope another post of mine is more helpful! But I think language can be really important in helping us empathise with other people. In this case, people who are constantly ‘not well’ and may never be completely ‘better’ 🌸 

Obviously the relationship you have with the person dictates what you will say, but if in doubt, a funny meme or cute baby animal picture is usually guaranteed to make someone feel loved! 

ID: Title reads ‘what to say instead of get well soon’ with six cute illustrated mushrooms, each attached to a different phrase: 1 you’re coping really well!

2 would you like to talk about it?

3 I’m here for you

4 I’m happy to listen to you

5 that sounds so hard

6 let me know if I can do anything

to help?

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Feeling Ill?

Things that helped me survive Covid, and should help you cope with any illness:

💉 Vaccines!!!

🫁 Deep Breathing Exercises

🧊 Migraine Patches

🍯 Honey, lemon, ginger & apple cider vinegar in hot water (a dream for sore throats!) 

🧼 Bubble Baths

🍋 Honey & Lemon flavour chloraseptic anaesthetic throat spray

🍊 Vitamin C & Probiotic

🤧 When you’re sick, do less than you feel able to, fatigue is hard to deal with so don’t go back to your ‘normal’ too soon! Take any exercise or movement gently.

😴 Make sure you rest as much as you can, put on a good TV show or your comfort movie, sleep lots, and keep drinking water and warm drinks. My chosen distraction was The Good Place, a show that I can confirm only gets better with rewatching!

😘 Your work and other responsibilities can wait. Nothing is more important than your own health so try to clear your plans and schedule time to just heal. (this is harder to do in practice, of course!)

Sickness on top of chronic illness or disability is hard for so many reasons, so if you, like me, have to deal with both, I hope you are really proud of yourself! Your strength is hardly ever recognised and even less frequently celebrated, but I see you. You’re doing great, sweet tea 🤪☕️

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100%

Something I like to think about is how my body has got me through 100% of the painful days so far. 

For all of the resentment I give my body for being broken, for not working properly, for hurting, for betraying me… it deserves credit for surviving. Survival is pretty much the only comfort there is when you’re chronically ill. I can’t tell myself I will recover. I can’t say I will feel better tomorrow, next week, or even next year. It’s another thing that is taken away, the comfort of recovery, the ability to imagine a future where I am ‘better’. In the midst of agony, I can tell myself it is temporary, but I won’t believe it. Because my pain is not temporary, it’s chronic. That means it doesn’t end, it just becomes different. Worse, maybe. Quieter, hopefully. Gone, never. But I have hope. 

I have hope that a painkiller that doesn’t give me side effects and does take away my pain is discovered. I have knowledge that new video games will be created that I can escape into briefly. And I have thoughts that tell me ‘You’ve survived before, and you can do it again. Your attendance record at life is 100%’

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Pain & Joy

This is the face of someone who has just been discharged from hospital and narrowly avoided an operation. This is the face of someone who is loved and cared for by a lot of incredible friends. This is also the face of someone dealing with incurable excruciating pain without painkillers, it is the face of someone who misses their mum, it is the face of someone who is so close to being done.

Pain exists at the same time as joy. There is never one without the other. They sit side by side and sometimes they coincide and on difficult days they collide.

This is my face, and I find it remarkable how many marks it is missing, considering all those collisions.

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Chronic Pain Management

Mangement Strategies? Tips? Help?! For what? Strategies for how to explain to people that I can’t do today what I did yesterday? Tips for keeping calm when a doctor offers to chop off your leg (yes that actually happened) Help for not crying all the time over how much pain you’re in?! MANAGEMENT STRATEGIES?! What do you mean?! There is not one single strategy let alone plural that can manage all these terrible, difficult situations- oh wait. Yes there is.
Breathing.

The only management strategy for anything in life is working on the foundation that sustains us, our breath. It is also the only thing that gives me a chance to get on top of my pain. For the first five years, pre-diagnosis, I had no idea about breath work. Truth be told, I’ve only really become properly good at it since starting yoga this year. It’s a complete game changer. Our natural response when we are put in pain is to tense up, to freeze, but this does the opposite of what we want, rather than stopping the pain it makes it worse. Particularly for EDS, if I can feel a joint sublux, my reaction is what makes the difference between it being out of place several hours or several months. If I can focus on my breathing and relax the joint, I give it a better chance of shifting back in. If I tense up, it is more likely to get stuck and swollen. Equally, if I am to have any hope of not losing my temper in a doctor’s office, I need to rely on my calming breaths. If you have no idea what I’m on about or are curious and want to know more about breathing- do you know how to breathe, really? Do you?- listen to ‘Tranquili-tea’.

Management strategies for POTs and seizures include sprinkling salt on my tongue. It’s a blood pressure thing, I think?

A flare up is a term for chronic pain/ongoing symptoms becoming worse: flaring. My flare ups can look like me being silent (very unusual for me as I’m sure you can imagine!) because I’m so exhausted or not being able to move due to pain (but mentally I’m okay just frustrated-feeling-trapped-with-a-brain-that-wants-to-do-things-my-body-can’t!
On my worst days, it’s both.

Flare ups can be caused by me moving too quickly and subluxing something, or not moving at all and still subluxing something, or subluxing something by moving slightly! I sublux at least twice a day, if you’re not sure what subluxation is, it’s essentially a half dislocation, a joint moves out of place but not enough that you can slide it back in- instead it gets stuck and then swells up so it can’t move back! It’s excruciating! It can last from ten seconds to six weeks, sometimes even longer and it’s pretty annoying and agonising! Aside from subluxations, standing for too long, walking too quickly or for too long a distance, climbing stairs, a seizure, doing too much exercise, doing too little, going to a party for too long or going to a shop where the lighting is too bright- all these can cause a flare up. The one thing that is certain to cause a flare up? Periods. Due to higher levels of progesterone being released, joints become even more lax and thus prone to subluxation.

What does a flare up look like for me, you ask? It looks like nothing.

It looks like any healthy 19 year old girl. Because Ehlers Danlos Syndrome is invisible.

The one tool I wish I was better at using is kindness. Reminding myself I’m on a flare up and that I shouldn’t beat myself up for not doing enough. I usually forget this. My hip will sublux one day and at the end of that week I will think ‘My goodness! Look at how messy your room is! What on earth is wrong with you how lazy can you get-!’ and then, if I am sensible enough to tell them how I’m feeling, my mother or boyfriend or brother will remind me ‘Hey you spent the week in bed in tremendous pain- chill out!!’

Now you might be thinking ‘How can your room get so untidy if you have spent the week in bed, Blossom?’ Well, friend, it’s a skill, and I can’t let you in on all my secrets.

So, the tool I wish I would use more often in a flare up is kindness. If this resonates with you- struggling to be nice to yourself, having high expectations and standards, etc- I’d like to take this opportunity to recommend one of my favourite podcast episodes Relativi-tea I hope it’s helpful.

MY TOOL BOX
– Ice/heat packs
– @Lush Wiccy Magic Muscles Massage Bar (for headaches and muscle pain)
– Magnesium Salt Bath
– Body Pillows
– Comfort Food (hence the lemon meringue pie which I definitely am entirely allergic to but I like the photo, it goes with my theme, and it would be my favourite dessert hehe)
– Cuddles with pets/people
– Distractions

Feel Good TV: FRIENDS, Avatar the Last Airbender

Feel Good Movies: Any Rom-com- I recommend Easy A and Crazy, Stupid, Love. A Studio Ghibli Film, my favourite is Whisper of the Heart. A good Pixar like Ratatouille or Soul
– A good playlist of boppy songs with relatable lyrics
– Gentle, modified, slow Yoga with Adriene on Youtube
– (No caffeine) Tea!!!