I’ve lived with pain my whole life! So that’s 38 years of experience on how to cope with my pain. Today I aim to give you ten ways to help you cope with pain from Ehlers-danlos Syndrome, or any chronic illness pain. Some of these techniques may work for you, some may not, everyone’s different, I can only share my real life tricks on how I work through the pain.
These tips are for when you are forced to stay at home due to your illness. Give my tips a go before dismissing them. Oh and spoiler alert, there aren’t any drugs or painkillers on this list to help you.
1/ Acknowledgement
You’re in extreme pain, you don’t need to acknowledge it, you are unfortunately more than aware of it! What I mean is, that it helps when a loved one, friend or even a stranger on social media, acknowledges your pain.
But once you have that acknowledgement, then move on. This is the trick. Announce your pain, let another person sincerely acknowledge it and then, don’t dwell on it. That’s the toughest part, not dwelling. Accept the person or persons placating words, then turn your attention to the next step in this list.
This is because dwelling on your pain, or talking about it too much can make it much, much worse. Don’t feed the pain!
2/ Acceptance
This is probably the hardest step but the most important. Many may read this and find it a bit defeatist but I promise, it’s an enlightening moment.
You need to accept there is no cure for your pain. No magic pill, no secret technique. Accept that pain is just a part of your life, forever! Sound’s depressing I know, but once you truly accept this fact, it frees you. Instead of using all your energy looking for a miracle, or waiting for help that isn’t going to come, instead you can begin helping yourself. You can begin moving on with your life. The pain won’t go away, but steadily you’ll learn to work with it instead of spending energy fighting it. These tips will help you work around the pain until you feel you have a good balance and can continue as ‘normal’.
Don’t fight it, accept this is a part of you, then move on. Remember, don’t feed the pain!
3/ Nest
This is my sanity saver. Building a nest. My boyfriend actually now does my nest building and I have to admit he does do them better than I ever did. Basically your nest is your comfort zone. So for me, we build a nest of pillows and duvets on the sofa until it’s the softest thing there is and doesn’t cause my body more pain. The nest needs to be good for sleeping as well as eating meals, so nothing too confining and it must be easy to handle as you will probably be in it all day if not longer.
The nest brings comfort and keeps you protected.
4/ Please the Senses
People with EDS tend to suffer from sensitivity to smells, light, sounds and more. Lots of people with chronic illness do, and these sensitivities will not help you deal with the pain. So it’s important to create the right atmosphere to soothe yourself. Dim lights or close curtains if you need to. Plug in night lights, fairy lights or a lava lamp if that improves your mood. Have a selection or aromatherapy oils that you adore, or wonderfully scented candles that you can burn and fill the room with smells that you love. As for sounds, personally this means no noises that grate on me like too many people talking. Aggressive tones and jarring sounds are a no no, so no death metal for me on a bad pain day. Also I avoid phone calls completely, the sound and act of engaging in a call is too much.
Everyone is different, just create the atmosphere you enjoy.
5/ Relax
A silly thing to ask anyone who is in pain, sometimes that’s physically impossible. But I’m still going to ask you to try. Once in your nest and comfortable then start by simply breathing. Long slow breaths. Instead of looking internally, breath in the smells you love, or enjoy the silence. I make sure I’m as comfortable as I can be. I try and release any negative thoughts. For me that’s feeling guilty about doing nothing (I suffer from extreme disabled guilt). I also try not to think about what I need to be doing or what I ‘should’ be doing. It’s important to just have a ‘you’ day. And don’t think about time. The pain won’t keep a schedule, it will just ebb and flow to it’s own rules, try to accept that.
Taking a day for yourself will recharge your super powers in the future for dealing with pain. So relax.
6/ Passive Distraction
Distraction is key when it comes to pain. You can’t just think about something else because pain is a willful force. But you can distract yourself from it. When I’m really bad, passive distraction is a lifesaver. Sometimes I can barely move so I can’t hold a book to read or play a video game. What I can do however is binge watch some obscure Japanese Anime. I can don my headphones and listen to an audiobook or some epic tunes. Passive distraction is letting something else do the hard work so your mind can transport out of your body, away from the pain and into that world.
7/ Hydration
You may think this is a no-brainer but I can’t state enough that hydration is vital. It helps your body, your mind and keeps your system nice and flushed. Personally I suffer from dehydration really quickly which can give me headaches and mental confusion. This is something you don’t need to add onto your already existing issues so drink!
8/ Release:
When you get a sharp pain, a burst of release helps, like a hiss or to swear violently. When you have chronic pain a release of some kind can still help. This can vary for everyone, if you want you to sing, then belt it out. My friends are used to me loudly and suddenly singing weird songs I made up in the face of too much pain. Why? Because it’s a way of forcing myself to make light of my pain, it’s a way of taking my pain and throwing it out into the world but in a positive way.
I also like a good old laugh, so watching stand up comics will force great big belly chuckles from me despite the pain. Laughing will probably result in me choking from esophagus spasms or dislocating a rib but I don’t care! Laughing makes you happier. And I will always choose happiness.
These methods of release are a small way of cheating the pain out of it’s all consuming grip on you. Try it.
9/ Treats
The fact is, life is hard for people with chronic pain, so to make it a little bit more colourful and cheerful, treat yourself. This can mean having a nice takeaway, or buying that pretty broach from Etsy or, if you’re me, buying more studio Ghibli merchandise. It’s retail therapy and brings a tiny bit of distraction and something to look forward too.
If you’re a bit short of funds then you can still treat yourself. Plan a nice day out when you are well enough. I love parks so I like to plan Which i’ll visit next. Or maybe plan on a new craft project to begin when you’re feeling better. And eventually you will feel better. Remember pain is like a wave, it comes and goes.
10/ Active Distraction
By active I mean things you can participate in. This is something that’s only possible if you are feeling a bit stronger. I like to play video games for my active distraction. Nothing too aggressive as you don’t want to become anxious. So things like Minecraft or Slime Rancher or Breath of the Wild are great. If games aren’t your thing then do some crafting. I enjoy a range of things from crochet to colouring in. Maybe you could use this is the time to learn a language. I’m trying to learn Japanese! Do anything you want as long as it engages you and distracts you but most importantly, makes you happy.
I really hope that at least one of these tips helps you as they have me. You are a warrior. Remember the best care you can have when you are in chronic pain, is the care and kindness you give yourself. Be strong. XXX
Chronically Lea 