Day #27: What's the most helpful advice you have had?
I know I say this a lot, but this one won't be easy to answer either. If tried to come up with the most helpful advice I've received, I would probably spend way too much time thinking and still not come up with an answer.
Some generally helpful adivice I've heard is to figure out what you have the energy for, trust it, and accept it. Respect your body/mind for what it can do, and appreciate it for how hard it fights. Give yourself a break. Or two breaks. Or two hundred. Work on accepting your limitations, and don't try to stop yourself from grieving your old expectations if that's what you need to do. If you have a hard time doing something, let someone help you. Remember that it may not be hard at all for them. You're doing great.
Okay, that's not really one piece of advice. I just named helpful tips and reminders I've heard off the top of my head... but I think they all really have helped me.
@huggerofcats I love the advice to figure out what you have the energy for, trust it, and accept it. I've been working on the trusting it part recently. I think I can do more than I actually can and then end up really regretting it and scolding myself for not listening to myself. I'm trying to trust my instincts more.
@lovingBanana5204 Same. I think a lot of it comes from our society's ideal of people pushing themselves... it seems like people sacrificing their health to be "productive enough" is an ideal now. It's really, really hard to unlearn.
@huggerofcats Mmm, that's a really good point. I have definitely seen this in my school. The people who come into school sneezing and coughing or with a fever and getting everyone else sick are called "warriors" for putting school over their health. I think health should always come first. And then there are the people who take pride in getting so few hours of sleep, because that somehow makes them a better, more committed student. Gah I really hate it.
Day 28: Name 5 things you have achieved despite your illness.
I haven't done much in my lifetime, but I'll try my best.
1. I may be taking a break from school now, but I've been able to take a few classes despite feeling horrible.
2. Traveled to a few new places, including New Mexico and Yellowstone. Yes, I've had to do a lot of pacing and felt bad for a good amount of the time, but I'm grateful for the experiences I've had at those places.
3. A professor wanted to keep my essay as an example for future students once.
4. I've gotten some letters from a few honor societies even though I've only taken a few classes (probably the reason I got high grades). It's weird because they started sending me them a little while after I started my break from school.
5. Pretty sure I've won some rollarblade and foot races when I was little, and I remember having a lot of joint pain back then (though it was periodic).
Day #29: What has helped you cope with the stress of this lifestyle?
I'll list a few things that come to mind.
-My cats. They've always given me a reason to keep going, and they're really good at comforting me. It's also nice that they'll come to visit me when I'm lying down when I don't have people who can/will.
-My partner. I've never been as comfortable around anyone else. He knows me really well, and we've been through some tough times together I didn't think we'd make it through. He's stuck around when he probably should have left. Several years later, he's still with me and understands the whole chronic illness thing surprisingly well.
-My mom. We usually don't get along too well, and things can be chaotic between us, but she lives with many of the same illnesses. I learn a lot from her, and she plans a lot of my appointments for me because I can't get myself to talk to people. This lifestyle would've been much harder without her.
-Coffee. It seems to help with my pain and therefore makes me more functional.
-Online communities. Knowing others who also live with chronic illness can be comforting and can help me have lower expectations of myself.
-Food that's easy to get and eat. Do I really have to explain this one?
Day #30: And finally... starting at your toes and working up to your head, name each part of your body and how your illness has affected it, followed by something you like about that part of your body.
Looks like I finally made it to the end in a lot longer than 30 days. This one's going to be a challenge. I'll try to not stress about it and only talk about the most commonly-known body parts.
-Toes. My illnesses have affected my toes by causing them to constantly crack and occassionally hurt when I walk. They have also made my toes constantly cold, no matter how much heat is applied to them. What do I like about them? That's hard to say. I don't have the most visually appealing toes. I like how they support me and help my balance while I walk. (That's what toes do, right?)
-Feet & ankles. My feet and ankles are affected in similar ways to my toes. Actually, they might have to go through a little more since EDS has made me flat-footed, and much of the achy pain starts around my ankles (and wrists). I like them because they support me as I walk and fit in a pretty average-sized shoe, meaning shoe shopping usually isn't a problem (though now that I have shoe inserts, that part has changed a bit).
-Calves. They're often hit by the achy pain when it starts to spread from my ankles. My calves have to deal with that... as well as the pain that shoots down when my knee pops into a weird position. They're also a lot weaker than they used to be and are often sore from mild exercise I did over a week ago. One thing I like about them is (similar to everything else) they allow me to walk. Sometimes I like how they look, too. It really depends.
-Knees. When cataplexy hits, it likes to go for the knees. I also get a lot of sharp pains and weird pops in them--probably from the EDS. The pain, occasional limited mobility, and the constant about-to-crack feeling can make it hard to walk. I like that they allow my legs to bend, and I find wobbling my knee caps around kind of amusing. (Yes, I know I shouldn't be doing that.)
-Thighs. My thighs are affected similarly to every other part of my legs. The achy pain often spreads up there, too, and they're much weaker and more shaky than they used to be. On top of that, I feel a lot of my period pain (which can get bad) in my thighs, and they have to deal with pain caused by hip issues. Like the rest of my legs, they allow me to walk. I also like how they look occassionally--or I did when I had a little more weight on me. They have potential.
-Hips. A lot of my joint pain comes from my hips. They're also partially responsible for my flat feet and therefore cause pain in a lot of other areas. And (thanks to the EDS), they can bend pretty far in different directions and freak other people out. That can be fun.
-Stomach. The upper part of my stomach (which would technically be my stomach) has caused a lot of nausea. My lower stomach has to deal with bloating, IBS symptoms, as well as period pains. I like how it can digest food, which means I can eat and enjoy food. It doesn't really look bad either.
-Chest. My illnesses have caused heart palpitations, tachycardia, breathing issues, lung inflammation, etc., so my chest often hurts, feels really off, or feels heavy. Still, my heart and lungs keep me going when they can. I'm often grateful for that.
-Back. This is where most of the ongoing pain is. No matter what position I'm in, it hurts to some degree. It's mostly in the upper back and probably comes from a mix of scoliosis, nerve problems, ribs being in the wrong position, and inflammation. The muscles in my back can also get weak, making it hard for me to hold myself upright. But, for most of the time, my back can hold me up decently, and I'm grateful for that. It also plays a role in stablizing the rest of my body. When it's fixed, some other body parts will probably feel better as well.
-Shoulders. They mostly experience lots of popping, weakness, and pain. I think I generally like how they look, though... minus the boniness. They also serve me well when they're working somewhat correctly.
-Arms & elbows. Even though my elbows bend really far backwards, my arms aren't affected too badly. I'll get the occasional sharp elbow or upper-arm pains (probably from my shoulder), and they'll get inflammed a every now and then, but they're almost left untouched compared to the rest of my body. Oh, and they're often where tremors and muscle jumps are located. To be honest, I'm not that fond of my arms, but... they help me get through the day? I think I also like the freckles on them because that makes them somewhat unique.
-Hands & wrists. I get a lot of tremors in my hands, so doing anything that involves fine motor skills can be difficult. My wrists are also where a lot of the achy pains start. But my hands still do allow me to do some things I can enjoy, like playing games, drawing, or doing makeup. (The tremors have definitely made all of those activities more difficult, though. At least that gives me a challenge...?)
-Neck. Like my upper back, my neck goes through a lot of consistant pain. Often, after spasms, I'll have a hard time holding it up. To be honest, it's hard to think of something I like about my neck. It holds my head up and can bend a lot. That'll have to be good enough.
-Head. I get a lot of headaches--probably for multiple reasons. I'm also going to mention the vertigo because it's been annoying the heck out of me for the past however many days. The skin on my face also gets messed up, and my eyes are usually very heavy and hard to keep open from constantly being on the verge of sleep. I can also get a lot of tingling and other weird symptoms in my head. When it comes to my eyes... I often temporarily lose vision or grey out when I stand up, and there are constantly floaters and other moving things in my vision. And my throat hurts. And then there's brain fog and all the other brain problems. I'm going to stop now, though. Something I like about my head? I like that I can use it to think my way through this stuff (even if I'm not that happy about how I think), and I like that the senses on my face can take in the environment around me. And I like that my brain, in turn, can often find something unique/artistic about it.
Hopefully that was somewhat readable. My head got foggier and foggier as I wrote this, and I had to return from multiple interuptions. At least that shows my dedication, right?
Thanks to whoever came up with this challenge... and to the person who posted it on 7 Cups. I'm glad I came across this and will probably continue to read the things other people write.
Day 14:
I am grateful for modern medicine, my mother, animals (especially puppies!), my computer and having a job.
It's rare disease day, so thought this would be a good time to bump this up!
If you've posted before, feel free to continue on. Newcomers are welcome to join in!
Day 15:
I would tell them that it's possible to manage it and there is treatment available as well as painkillers! You will get bad days, but you have to pace yourself and accept that you're not totally healthy so take a break if you need it! Also, try and find at least one person who understands and supports you.
Bumping this up for Chronic Condition Week
Are there any other people dealing with chronic Lyme Disease?
Day 1: My name is Rainbow. I have Hereditary Neuropathy with Liabilities to Pressure Palsies(12 years), Small Fiber Neuropathy(6 years), hypermobility Ehlers Danlos Syndrome (hEDS - 1 year) and Postural Orthostatic Tachycardia Syndrome (6 years)
