Breaking the chronic illness cycle
Vložit
- čas přidán 29. 08. 2024
- Do I deserve fun and joy, or am I asking for too much?
Having chronic conditions started this narrative in my brain that I’m already asking for enough by just existing. That people have to accommodate me so much due to my diseases that I don’t have any right to ask for more. But you and I DO deserve more than a life that feels frustrating, or small, or unmanageable.
This is part 1 in a series about thriving with chronic conditions. I'd love to know your thoughts in the comments, and I know the community would love to know them, too!
Resources & Ideas mentioned:
- Mini house: amzn.to/3Y48NWh
- Diamond art: amzn.to/4bICZJS
- Embroidery: amzn.to/3Sa0BAd
- Spotify includes 15 hours a month listening to their wide selection of audiobooks with a subscription.
- Google online clubs in your area
Check out my website for more support: www.sarahmcglory.com
I love planning - meals, get togethers, vacations, etc. so thankful for my tribe of friends who understand my limits, yet support and celebrate with me. 🎉. I turned 50 earlier this week and four of them came out to help me celebrate. We ate good food, chatted, went for a drive and swam in the lake!
That's amazing! Support is huge. Happy 50th to you!!
"You just don't think you're deserving of accommodation. Like, we've already asked for too much the fact the people around us have to deal with our disease processes or our mental health stuff or whatever the case may be, so we just kinda like sometimes go inward and think that we're gonna make ourselves really small so that we have less needs in an already very needy situation. But that's not fair."
Great, now I'm crying.
I hope it's a good cry!
I just had a third autoimmune diagnosis added. I am going to have to deal with all this for years. Your words really resonate with me, thank you for sharing.
Thank you so much for your support and the great idea about what brings you joy! Sending you hugs as you navigate your symptoms/diagnosis!
Sarah, the timing of this series is perfect! I've been riding the struggle bus SO hard since I broke my ankle in the spring. I gained weight and have been struggling more than ever with fatigue and pain. I have been trying to find something to help me climb back out into real life! Love this!❤
It's wild how everything in life changes when your body is compromised in some way. It is easy for things to snowball in a negative way. But I also know that positive change snowballs, too! I hope this series gives you beneficial tools!
I’m really looking forward to more in this series! ❤
I'm so glad! I love being able to talk about this.
I've forgotten how to have fun too. This is a good reminder. Since kids, everything has changed.
It's like forging a new identity and learning how to do everything again.
When you’re depressed it’s so easy to feel like you don’t deserve anything good and nothing matters anyway. One of the best things I have done is imagining that I’m taking care of a loved one when I’m taking care of myself. I not only deserve to shower, but I could paint my nails. I can take time to cook a quick meal for myself, I don’t have to live on granola bars. The most fun thing I’ve started doing is also a book club! It’s been really good for me.
I totally agree. It feels like it will always feel bad, so what's the use? But it doesn't always feel terrible. And I've done the same thing to pull myself to higher ground- how would I treat a loved one? Yay for book clubs!
Thank you for sharing this. I have no idea if I have any autoimmune diseases but I do have chronic asthma that has been kicking my butt hard for the last 6 years. Everything fell apart in 2018 and I am still trying to get things sorted within myself, my life and my home. Six years of fighting to be taken seriously and still nothing else being checked, so I spend my days in agony and exhausted. This video has given me so much to work with already. I am so looking forward to the next one. xxx 💗💗💗
The hardest thing is not being listened to about your symptoms. I hope you're able to find the right care that will be curious and driven to find out what is causing your asthma. Sending you hugs! And I hope the future videos will give you lots of ideas and tools!
Thank you so much for this video! I have EDS + CFS, så I live with alot of pain and alot of fatigue. I have had so much of the feelings you describe. When my first born was about 6 months, I picked up knitting again. I made a break when I was pregnant and it felt sooo good to start again. She is turning 6 in November, and the knitting saved me in many ways. I can only fully agree with what you are saying in this video, and it also explains a bit to me why my knitting is a big thing for my mental health.
It gives me meaning, relaxation and joy.
From time to time, I haven't had the energy to think (brainfog) and sometimes the pain has made it impossible.
Last year I joined a local knitting group. I love it so much when my brain has enough energy to go visit my lovely knitting ladies. It givese alot, but also takes from that small amount of brain power I actually have. But it is _Fun!_
Of course!
I love that you have knitting, and it's so cool you have a group to visit with when you have the capacity! Having fun makes such a difference, especially when so much of the time we're handling symptoms like pain and exhaustion.
@@SarahMcGloryHomeyes, and I love that you bring this up! Bc it is spot on how I feel. I am not needed and rarely speak up for my needs and wants, and that is how I feel. But people around me seem to think I am fussy and have alot of needs, but those are due to my condition. Not _Me_!
And so much time and energy goes in to trying to funktion and not be all exhausted not being able to move and making sure there is energy left for cooking later etc. Spot on, thank you. It feels so good to get confirmation, bc then it feels true, not only in my mind.
I have not yet been diagnosed with an autoimmune (or ASD) but I do think I have (both). I have major fatigue/motivation issues and/or executive dysfunction so I’m constantly beating myself up and after watching your videos and another CZcamsr who specializes in behavior change, trying to adjust my mindset so my negative thoughts don’t continue to stop me from starting. Thank you! ❤
I'm so glad you're trusting what your mind and body are telling you. For yearsss I convinced myself I was making it all up because I was lazy or not trying hard enough. I wish I could take back the way I gaslit myself. I'm so proud of you for working on your mindset! It takes a lot of time but it so worthwhile. If you feel comfortable, would you drop the name of the other CZcamsr that's been helpful? Maybe that channel can be a resource for this community.
@@SarahMcGloryHome her name is Karin Nordin, PhD with @BrainBodyAlliance.
I've struggled with reading huge novels the way I used to before the brain fog took over. I struggle to learn a new set of characters/magic system/world building stuff. So, I'm a bit embarrassed but I've been reading fanfiction (please be careful of avoiding content/ratings you want to avoid). My favorite characters if they met in a different time period? Yes please! The Hobbits run a modern coffee shop and play matchmaker? Brain candy.
I also chase the dopamine by hiding tiny ducks wherever I go. I have a couple fairy gardens in my front yard I rearrange and play with regularly. I save my favorite funny videos to share with my kids later. I put silly stickers on my emotional support water bottles and tray I use for infusions.
Yes!! I think it's amazing you swapped out big novels for fanfic! I'm a big fan of turning things I resist into an action that works for my realistic day. I want to make a fairy garden! And also a little book nook thing!
@@SarahMcGloryHome I have great plans for a little sharing library to put out front! I want to do several- with one for puzzles to swap.