*This post contains a gifted item from YuYu Bottle*
“ I’m constantly in pain. Yes, constantly. Every single second. The pain is still there when I’m smiling. The pain is still there when I don’t talk about it. When I say “I’m fine” I have a very different definition than you do” – @strongerthanpots
Chronic pain at any age is tough to live with, but especially at a young age because it’s unexpected. You have a certain view for what your life will be and chronic pain is not a part of that, one of the hardest parts is it might feel like you have no one to talk to about it because the majority of your friends don’t get it. I will never forget being told at 15 that I had Chronic Pain and would most likely be dealing with it for the rest of my life. It was like being thrown out to sea with no life raft, because their only management options were heavy duty medication which I have severe reactions to or CBT (Cognitive Behavioural Therapy). Both of which personally have not helped me, what I wanted to know was how to get through school, dealing with the chronic fatigue that goes along with it, dealing with chronic pain when you can’t tolerate medication, coping with high pain days mentally, how to maintain friendships and not come of as flaky.
There were so many things I wanted to know and now after over 2 years of living with it I have gotten some of those answers. So with the help of YuYu Bottle I have put together a mini survival guide of the top things I’ve found have helped me.
Whether you have recently been dealing with it or you have been living with chronic pain for years I hope some of these tips help you too…
“How can I maintain friendships and not come off as flaky?”
The biggest thing I wanted to know when I was diagnosed with Chronic Pain was how do I explain it to my friends and maintain friendships when my pain is so extreme and unpredictable. It took me 2 years to get to the point where I am now, where I can ignore the pain enough to enjoy time with my friends and mange the come down and extreme pain afterwards from doing so. But at the start I had absolutely no idea how to manage it. So the times i felt good enough to catch up with friends was few and far between. The biggest things I’ve learnt is:
1. Explain to your friends what your going through and try using a pain scale or pain comparison to help them understand the level of pain you are dealing with.
2. To reach out to friends, even if you can’t catch up with them in person FaceTime or call them, I do this with my Best Friend a few times a week when we want to catch up but are both too unwell to hang out in person.
3. Push yourself a little bit and catch up in person, I know this probably seems almost impossible with how much pain you are in but catching up with friends doesn’t have to be this big thing. Before I moved to Cairns I had a friend who would come over most days after school and we would just sit on my bed and play uno and talk. I had put off catching up for so long because I didn’t feel up to it, but he persisted and eventually we did catch up and I realised afterwards how much it helped my mental health and made me feel like a teenager instead of a 90 year old women haha.
4. If you don’t have any friends at the moment that’s totally ok! It’s normal unfortunately when you get sick/develop chronic pain for friends to drop off. Please know that there is absolutely nothing wrong with you, its all them and lack of understanding. Read Amy’s #TeenTalk post on Losing Friends When Chronically Ill here for more tips on dealing with it. Reach out to the Chronic Illness community on Instagram, surrounding yourself with people that understand what your going through can really help, plus allot of the time they are further along the journey than you and have some great advice and management tips. Some of my favourite people on Instagram are @confidentlychronic @sophiewardy @findyourownhope @invisiyouth and @bloggingbed
“How can I deal with the chronic fatigue?”
This may seem obvious but allow your body time to rest! I have always struggled with the guilt of feeling like I’m being “lazy’ because most teens are at school, working etc when I’m sleeping. But then someone told me that the chronic fatigue is my body’s way of recuperating so I can do the things I want to in the future. Think of it this way, everyday you are dealing with more pain than some can even fathom, it takes energy and strength to manage that on a daily basis. You don’t get a break from the pain, but your body needs time to rest so it can deal with the pains effect on it. Pushing your body when your already burnt out both physically and mentally from the pain will only make it worse and take longer to recuperate.
“How can I deal with feeling trapped when basically bed bound?”
Nighttime or sunset drives! I got this idea off my best friend and it has been a game changer for me. Even if you aren’t up to getting out and walking around just driving around cane be so freeing. Bring a pillow and a cosy throw blanket to make the drive more comfortable and try exploring an estate in your local area or looking for the best point to watch the sunset from. I love driving along our local beaches and parking someone quite so I can listen to the waves.
And if you can’t get out try making the space you spend the most time in a space you actually want to be in. It doesn’t have to be much it can be as simple as adding some fairy lights, print off some photos and inspirational quotes or even a vision/dream board. Whatever will bring a smile to your face when you see it. Claire Wineland used to set up and decorate every hospital room she stayed in so it expressed her and felt a bit like home, check out the video here.
“How can I find the motivation to get out of bed each day?”
Find something to focus on other than yourself and how your feeling. The most helpful advice I have ever been given was from by beautiful adopted Nana. She herself had chronic pain, it took over her life and like me she was forced to spend most of her time in bed. In the last few years of her life she started painting and discovered she had a real talent for it, she used to paint and sell dot paintings that would tell different dream time stories. She would spend hours hunched over the table painting, many times she would be caught falling asleep at the table. No one could fully understand why she would push herself so hard doing it, because they would see how much pain it would cause her in the process. But I did, it was the one thing she did that helped her to block out the pain, to her it was better than any pain killers she had to take. Because it brought her joy and gave her a purpose, a reason to get up everyday. She told me to find that one thing that was stronger than the pain, that brought me happiness and to spend everyday doing that.
For me that is writing, I cant really explain it but being able to put all of my thoughts and feelings into something impactful for others is honestly the best feeling in the world!
“How can I manage the pain if I can’t take medication?”
I am one of those unlucky people who cannot tolerate medication or pain killers due to my stomach issues. So my only source of relief comes from heat, over the past 2 years I have tried so many different sources of heat relief and by far my favourite is the YuYu Bottle. The YuYu Bottle is unlike any other hot water bottle I have had in the past as it is long, so it can be wrapped and tied around your body so you can have hands free relief. You can also add ice and ice water to turn it into a big ice pack as another form of pain relief. YuYu was kind enough to gift me my very own YuYu bottle to try out but all opinions and views are my own. I would never share about something I didn’t absolutely love and use everyday.
My YuYu Bottle has quickly become my go to for pain relief as my pain is in large areas that normal hot water bottles don’t cover. I especially love it for my leg pain as it is long enough to cover a lot of my legs. As well as for my stomach and back as I can wrap it around and cover both points, which is a game changer for managing my stomach / GI pain. Plus i can use the strap to tie it around me so I can walk around with it or use it out and about in cafes or hanging out with friends etc discreetly.
I think it’s so important to be aware and educated on the background of the products and brands you are using. YuYu Bottles are made from rubber sourced from Sri Lanka and is eco-friendly, biodegradable and fair trade. Their supplier is also actively involved in community initiatives like education, sports, art and disaster projects. I have the White Waffle YuYu which is a really soft material, but doesn’t attract animal fur which is a must living in a house with 5 white fluffy animals! But they have so many different collections including one of my favourites the White Label Collection that has been specially made for Chronic Pain Warriors which I will definitely be purchasing from in the future!
– How do you manage living with chronic pain and what has chronic pain taught you about yourself? Comment down below, I’d love to know! Xx