Welcome to the Everyday Spoonie.
Why everyday spoonie?
Because I’m just a spoonie, trying to make it through every day. Trying to be as normal as possible as I live in severe chronic pain.
Wondering what a spoonie is? Click here. It’s worth the read, trust me.
First of all I should say that I am not a doctor, this is not a medical website, and I am not giving any medical advice.
Secondly, as Cara Gael says, let me please say that unsolicited medical advice is never not annoying.
My official diagnoses are stage i/ii endometriosis, fibromyalgia, myofascial pain, and severe pelvic dysfunction. Unrelated but also painful, I have enthesitis in my hands. Also unrelated but not painful, I have Von Willebrand disease. Fun, right?
What They Mean
Endometriosis: endometriosis occurs when the endometrium, the tissue that lines the uterus, grows outside of the uterus. I tell people that its gone rogue. This tissue is what is shed during menstruation. When it’s not in the uterus, it can’t be shed, and instead becomes inflamed, and turns into a sort of tiny blisters inside your body. It can spread to a number of places. Stage i/ii means that there isn’t a whole bunch of it. Don’t be misled: the stage is NOT indicative of the level of pain. Some women can have a spot and be in excruciating pain, some women can be covered in it on the inside, and not even know they have it. The only way to diagnose it is through a laparoscopy. I had my first laparoscopy on June 23, 2016.
Fibromyalgia: is a common but complex chronic pain disorder that causes widespread pain and tenderness to touch that may occur body-wide or migrate over the body. Mine tends to migrate, sometimes I’m in pain in one area, other days it can be a totally different area. It’s exhausting to be in this much pain all the time, so I’m constantly tired and fighting to stay awake. It also makes me forgetful!
Myofascial pain: my muscles have been so tense from being in pain, that they’ve essentially created their own pain. This isn’t really a medical definition, but you won’t find medical definitions (or advice) on this site. I’m sharing every day experiences. My doctor said to imagine if you tensed up your biceps for months and months. If you tried to relax or move your arms, they would cause pain.
Severe pelvic dysfunction: I won’t get into the nitty gritty, but it means that normal bodily functions are very painful and unnecessarily difficult for me. It means that I can’t roll over in my sleep because my muscles don’t work like that anymore. It means that standing up from any position, or sitting down can be really, really difficult. Most of the time I let my arms do the work.
Enthesitis: enthesitis is basically inflammation of both the joints and tendons. When I have a flareup, it makes things like typing, eating, being on my phone, or doing anything with my hands very difficult. They tense up and just hurt, even in a resting position. They become claw-like. Mostly the cold weather brings the flareups, but it can also be completely random, and last for any length of time.
Von Willebrand Disease: this is an underdiagnosed blood disease that most people don’t even know they have. It means that I bruise very easily, heal slowly, and bleed profusely, but not to the extent of hemophilia. Most people inherit it from a parent. To me, this is fairly benign and I only think about it when I see bruises whose origin I couldn’t tell you if you paid me.
Together, what does this all mean?
In short, I live in chronic pain. I’ve spent the last year and a bit adapting my entire life around managing these diseases and their symptoms. A year may seem like a long time to be in pain, but there are so, so many people out there who make that look like a cake walk.
Of course, like any one else who lives with chronic illness, I’m not just my diseases. There is so much more to me.
I’m a mid-twenties not-so-girly girl just trying to figure my sh*t out. I mostly had it all figured out, but then life threw a couple curveballs (+ tons of hormones) and here I am. And that’s ok. Unlike many spoonies, I do work a full time job. At best, maintaining this job is very difficult and takes the majority of my energy. However, I’m very lucky to have some of the most understanding bosses in the world, and am given a lot of luxuries to help me at my job. I am forever grateful for this. I also love my job. That helps.
I have hobbies, too…
In my time off, I don’t often have the energy to get out and do things. So most of my hobbies and interests are the kind you pursue around the house, such as:
- Netflix (obviously, let’s be real here)
- My dog
- Video games (Xboxone, PC, Nintendo Switch, Nintendo 3DS and Samsung Galaxy 7)
- Jigsaw puzzles
- Takeout food (I don’t cook very often)
- Cross Stitching
- Nail Polish
- Online shopping
Of course, there’s a lot of things I’d love to do outside of the house, but unfortunately my pain is a big road block. I have trouble walking much further than 1km, so that pretty much rules out museums, shopping, parks, zoos, skating, or anything that involves any kind of physical activity. On a good day (these are rare and can never be planned for) you might find me at the movie theatres, getting a mani/pedi, or eating ’til I hate myself at an all-you-can-eat restaurant (often pain-inducing, always worth it).
Anyway. I’m really excited to share about my life, my experience, and any tips and tricks I pick up along the way – we are all on the same team here, and we’re all in this together. Whether you’re in perfect health, a fellow endosister, or are living with PCOS, POTS, EDS or diabetes – I hope you find some thing(s) you can relate to.
Please feel free at any time to connect with me just to say hi, or ask any questions!