Hey there, and happy Monday! I hope you had a fabulous last week (I’ve been a little absent around here) and a great weekend. Highlights from my time away included:
- Slowly finding more of a routine
- Getting down to a part-time work schedule
- A Reese’s cup Blizzard from Dairy Queen
- Sweet potato fries with a ton of ketchup
- Shopping with my mom
- Grocery shopping with my dad
- Cooking a little more
- Baking (this bread, these cupcakes, these cookies)
- A family reunion
Anyway, part of the reason I did not post last week was a general feeling of overwhelmed-ness and busyness. The more honest (and admittedly illogical) reason was that I had one post I wanted to write but I couldn’t really find the words. It didn’t feel quite right to write about things that weren’t really on my mind, so I didn’t write anything. I think I found the words, though, and there might be a lot of them. Know that none of what follows is meant to come across as woe-is-me or as a girl angling for pity. I fully understand that, despite my issues, my life is wonderful. This is just me relating my experience, because it’s a little different from the average. It’s part of the “uncommon” in the title of my blog.
See, for as long as I can truly remember, I’ve physically hurt. I had some aches in my legs as a kid. I started getting migraines in fifth grade. And just as the migraines became more manageable, my neck, shoulders, and back turned into a mess of muscles knots and pain. My hips and hamstrings tightened up. Basically, everything hurts on a daily basis.
{So maybe it isn’t so uncommon}
In my case, a lot of the pain is likely due to Ehlers-Danlos Syndrome. I’ve gathered that my variety of it basically makes me really flexible and sore. It’s a lovely little illness. Anyhow…
What It Feels Like
This is different for different people. For me, it might be an uncomfortable tightness in some muscle that escalates to a feeling of burning, swelling, or stabbing. It feels a little like the muscles just needs to be stretched, but even after a good stretch… that feeling is still there. My joints feel a little stiff and achy usually, but they also get sharp pains sometimes. It feels like I’m probably in the body of a person seventy years older than me.
It feels restless. The longer I’m still, the more pain I experience. This is why work proved to be unexpectedly difficult for me. My pain has intensified a lot recently, and working requires more stillness than I am used to. I am absolutely the fidgety person who is pacing or stretching almost constantly, alternating between standing and sitting, and generally bouncing around. It isn’t to make you antsy; it’s to keep me feeling a little more sane.
It feels like being torn between wanting to crawl in bed and wanting to go to the gym or for a long walk. Odd as it sounds, hurting is exhausting. I don’t sleep well, but I still look forward to just letting my body relax entirely. That said, nothing relieves my pain (even if only very briefly) like movement or exercise.
It feels like being a total freak, honestly. I know I’m going to hurt pretty much no matter what I do, but I know what makes the pain worse – and many of those things are fairly normal for many people. However, if I don’t get enough sleep, don’t work out, eat generally unhealthily for more than a day or so, spend too much time in hot weather, or sit for too long, I’m probably going to be even more of a mess than I normally am. I typically choose to do the responsible thing for my health/sanity, and that is not always the most “fun” thing. In fact, it usually isn’t.
What I Do to Manage
- Stretch regularly
- Drink tons of water
- Eat a lot of healthy things
- Exercise (at least briefly) daily
- Get massages
- Sleep as much as I can
- Occasionally see a chiropractor
- Try various medications that might work (obviously with a doctor’s supervision)
- Relax as much as I can
- Occasionally feel sorry for myself (…it’s true)
And lately, I ask for help. Or I try to. As I mentioned, I’ve been hurting more than ever over the last couple of weeks. My parents have helped me deal with the pain and the stress of the pain so much. They have been patient during my pity parties, massaged me daily, and offered to research other doctors and specialists I can see while I’m home.
Why It’s Bugging Me
Aside from the fact that pain hurts, I think it has really hit me recently that normal life things (including 9-5 desk jobs and roller coasters) are not the best for me – and that makes me wonder what my future does look like. Also, it’s hard to fathom hurting for the rest of my life. It also feels a bit high maintenance to respond to people’s questions about whether I’m feeling better by saying, “No.” But that’s the thing about chronic pain: it doesn’t really go away.
Anyway, I have gotten more comfortable with telling people that I have issues (hi, internet friends and strangers), but it’s still not easy. Honesty is the best policy here, though, since pain does impact my life and my decisions, even if I would rather it didn’t. For example, I’ve been known to cancel plans because I hurt. “But you look fine!” My response:
{Source}
Even so, if I had my way, I wouldn’t ever have to cancel plans because I’m in pain. (For other truths about chronic pain, see this lovely, very accurate listicle: 19 Things People With Chronic Pain Want You to Know.)
And that’s what’s been on my heart and mind lately. If you made it to the end of this long post, thank you for reading. Blogging should be a little more normal this week! Have a wonderful Monday! 🙂
These things don’t have to define us but, make us who we are, stronger than we ever could have thought. XOXO
Beautifully put, Rebecca 🙂
Just the mere fact that you continue to live life despite the pain is something to admire in and of itself. Wishing you peace and comfort!
Thanks, Alison <3
I’m so sorry you have to deal with this in your every day life – it is commendable that you put such a positive foot forward every day. Sending love your way!
Thanks, Beverley! I appreciate your kindness 🙂
Life is so hard with a chronic pain. I have severe chronic migraines, and they pretty much control my life! I do many of the same things you do, its just so frustrating having to live with the pain!
Ugh, Tiffani, I’m so sorry you deal with migraines 🙁 They are pretty terrible and I’ve definitely been in the position where they rule my life. I hope you find something to help control them. And if you ever need to vent frustrations, feel free to email me!
You are an angel, a gem, a trooper, and the absolute sweetest person we know. And today I am whining with a very painful left hand (some arthritis that just appeared a couple weeks ago). And you deal with and have dealt with pain forever; so maybe I could use you as my mentor and stop whining. Thanks for sharing that valuable info. Love you so much’
Thanks, Grandma <3 I hope your hand gets to feeling better - and complaining is sometimes necessary for the healing process 😉
I’m so sorry you have to deal with all of that. Just from my small experiences with pain that’s only lasted a day I can relate to how unbelievable exhausting it is and you are such a trooper for making the best out of your situation. My heart goes out to you and I hope it eases up on you soon <3
Thanks so much, Christine! You’re too sweet <3
Thank you so much for sharing your story! I hope that you are feeling better soon, even though I know how difficult that can be with a chronic illness. Sending love and prayers your way!
XX, SS || A Little Seersucker Sass
Thanks so much for the kind thoughts <3
Sharing your story is incredibly powerful and shows that you are in charge of your life and your pain. Remember the power of the breath and let it help you through a difficult day (spoken like a yoga teacher, huh?). Be well!
Thanks, Constance! I’m so grateful for your advice and support 🙂
Wow Ellen. I super much respect people who deal with chronic pain, as I have very low pain tolerance myself, and I don’t know if I could handle it. Thanks for being willing to share your story!
Aw thanks, Emily! I’m confident you could handle it (but I’m glad you don’t have to). You’re stronger than you think!
Oh, Ellen, my heart goes out to you!! I’ve been meaning to comment for the last few days, but I just couldn’t find the words to express myself…
First of all, you are by no means a freak!! Everyone has their own issues/problems; some are just more obvious or hard-to-live-with than others.
Second of all, there is no way we would think that you are bemoaning or complaining about your life. You are a lovely person and that comes through quite clear in your writing. Everyone needs to talk about the negative things in life sometimes; otherwise, we’d all be pretending that life was all sparkles and unicorns and pink butterflies, that we’re all *always* happy and nothing *ever* bad happens…and that’s just not healthy, nor is it real life. Thank you so much for being willing to be open and vulnerable to us your internet friends on the blog!! It takes a lot of courage, and that is admirable, even if you didn’t have to live with the pain and frustration of your disease. I’ve never experienced anything as intense or as drastic as you do, but I kind of have a *teensy* glimpse into what it may be like, as my mom lives with a chronic pain condition, so I understand some of the hardships and cultural misunderstandings that go along with that (and, I’m kind of surprised everytime someone pulls the “but you don’t look sick!” line, as it seems a ton of people nowadays are sick and look completely healthy on the outside). I hope this doesn’t seem offensive or insensitive, but I am SO, SO sorry about all the pain you suffer through and work with on a daily basis!! I wish there was something I could do to help or make it easier for you! 🙁 Thank you so much for sharing your life with us!! Hugs! <3
Aw, Hannah, you’re too sweet! I don’t think enough attention is paid to “invisible illnesses” (whether mental or physical) and I like to think being open about it will help people understand if they don’t have them or feel less alone if they do. I so appreciate your support and encouragement 🙂 My heart goes out to your mom – I hate that anyone has to deal with pain. Hugs to you (and her!) as well <3