So I know I have been basically absent the last couple weeks… I’ve logged in and came to the community, but the thought of going through all that I’ve missed had been overwhelming and so I checked messages/replies that pertained specifically to me and get off again…
There is a “phenomenon” in the chronic illness community, especially those with autoimmune conditions and/or Dysautonomia (I have both) called the October Slide (for the Northern Hemisphere). So between limiting my social time trying to finish some tests I agreed to do, and then the October Slide, my brain has been fried… And I still have tests to finish…
Why do I share this? To remind everyone (especially during Mental Health Awareness Month) to take care of yourself, even if it means some isolation/withdrawal from social media… I immersed myself in my family, including taking a nice day trip (with plenty of time to play with yarn in the car) to the big city where we walked all over enjoying the sights. I enjoyed watching my kids play and my husband doing his photography… I’ve started using my lavender hydrosol on my pillows at night again… I’m resting my body when it needs it (which currently is a lot)… And I’m continuing to read my Bible daily… So, do what you need to do to take care of your mind and body! I’m going to try to catch up some today, but I’m going to take it slow… Don’t be surprised if I’m reacting or replying to old posts
PS I am an open book when it comes to my chronic illnesses (yes I have multiple including Postural Orthostatic Tachycardia Syndrome (POTS: a type of Dysautonomia), Rheumatoid Arthritis, Post-Treatment Lyme Disease, Hypermobile Ehler’s Danlos Syndrome (hEDS), Depression, & Anxiety), so feel free to ask any questions you may have and I’ll do my best to answer them. But don’t feel obligated to ask anything
Agreed, and I probably worded it wrong (part of the brain fog/brain fried deal)… I enjoy catching up, when I have the mentally capacity to do so… So I want to catch up… (I also think I may have a bit of OCD, so the idea of unopened topics kinda bothers my senses )
So to add to my original post: Take care of yourself, and jump in when and where you are ready/capable
And thanks @Frogfrog for extending that grace to me as well!
your welcome! as long as your doing what you enjoy go for it!
Yes, sometimes it is! When your autonomic nervous system (the system does does all the things you don’t think about like breathing, heart beating, temp regulation, etc) decides to malfunction it can be a real bear
Much appreciate the prayers, and I’ll get through as always…
If you ever need to vent, you can always hit me up!
I’m currently on disability at 26 years old for chronic pain and anxiety disorders. Pain relating to extremely severe endometriosis, migraines, and PCOS related symptoms and anxiety relating to agoraphobia and PTSD. When all the things are stacked on top they definitely get worse.
Not to mention, this time of year season depression kicks in for a LOT of people. Just make sure to take care of yourself, and ask for help if you need it! Whether it be a family member, a friend, or reaching out to someone online.
My biggest tip is to make yourself safe spaces and what I call “comfort boxes”. Comfort boxes are essentially a “go bag” for my worst days. For instance, mine includes my TENS machine, pain meds, a book I want to read, a candle I particularly love, a book, and a comfortable pillow and blanket that are soothing to me. This really helps when I feel overwhelmed and like I can’t help myself. I even have a checklist on a dry-erase marker to tell me what to do. Generally, my pain ramps up my anxiety and they feed off of each other in a vicious spiral.
I truly hope you feel better though. My sister battles with POTS, although hers is relatively under control right now with her being really careful about her diet. When she was undiagnosed it was awful, and she sometimes vents to me about her own battles. I can’t even imagine.
Sending all the virtual hugs and well wishes your way!
Thank you for being so vulnerable and sharing this with all of us! I know that, in and of itself, can take a lot.
Thanks… Yes I’ve been passing out since I was in my teens and had some of my other issues since childhood… I just wasn’t diagnosed with half of them until 20s and some of them not until 30s (as late as last year for hEDS)… So for the most part I’ve learned my triggers and how to avoid or reduce them… But I’m coming to learn there is no escaping the October Slide which usually hits around the end of September for me (yet another reason to not celebrate my birthday lol)
Personally I don’t find it being vulnerable, but rather empowering… Probably because I honestly don’t care what others think of me most of the time, and I’d rather share and help others know they aren’t alone than keep it to myself…
But thank you for your kind words and support! That is so appreciated (more than some may realize)
Thank you! And hugs in return (because who doesn’t like a hug now and then?)
I think for me, just having people understand (especially with “invisible illness”) is the main goal. I may look okay, but sometimes I’m really not. It’s really draining on a mental health level when people dont believe you, make comments how you dont look sick, or stop inviting you to things (the last being the hardest for me in high school). Like 7/10 times someone asks me to do something, I want to, I don’t want to sound flaky but I literally cannot know if I can make said times and dates until the day of. Just having people understand that my “maybes” are not no, and are not a yes, just a “I have to see if I can function that day” kind of thing.
Yea, I hear you. Getting long COVID in my 50s-I find not knowing what the day will be like the most frustrating.
I had to learn to never commit to anything. I don’t like this, I don’t like it at all.
People not believing you- I have so much grief over this-I’m sad because people don’t believe me. Even had someone accuse me of using drugs. That hurt.
Hard so hard to forgive, but there’s Jesus, so I must.
Stop inviting- I still want to be invited even though the answer will probably be no. Makes me feel wanted.
In America, it’s hard to have a disability, people respect- heck - or pay simple attention to you ONLY because you produce something. My heart goes out to the homeless, the mentally ( severe), ill, the addicts, the prostitutes, the person in wheelchairs, developmentally disabled, and so on because they live unseen.