Here are some things you should NEVER say to me if you want to only see my good sides, and I dare say you don't want to see my bad sides, so pay attention.
NEVER EVER comment on my weight! I am fully aware that I carry some extra load, but you know what? I'm happy just the way I am and beauty comes in all sizes! I'm confident with who I am and I do wear a 2 piece when I go to swim, and no one points or make rude comments. I'll never call anyone a skinny bitch, so don't you dare calling me fat! For your information, I constantly battle with low appetite and barely eat! If I was to eat any less than I do, I'd basically live on air.
DO NOT comment on how I live my life! My condition makes it impossible to know from one day to another what I can do and not. I do what I am able to do, no more and no less and what I do varies from one day to another. Sometimes it's an achievement to get up, take a shower and get dressed. Other days I do all those things just fine and even manage to go out of town for other things than medical appointments.
DO NOT tell me to exercise more! My body can not tolerate exercise as in physiotherapy or going to a gym, it only does me more harm than good and is very likely to have me in bed for days afterwards. I don't have enough energy as it is, and exercising only takes energy, giving me nothing in return other than pain flares and debilitating fatigue, and in the case of the local gym: a neck injury that severely limits my ability to even be upright. I do however try to live as active as possible, as in going somewhere manually rather than taking the car when going somewhere within my town on the right side of the railroad.
DON'T EVER call me lazy! If you want to see lazy, go to Wal-Mart and watch the people shopping there in their pajamas! They most likely have no medical reason to stay in their pajamas all day, yet that's what they do and don't even change clothes when going out shopping. I don't judge people, but yeah, if you want to see lazy, look at healthy people shopping in pajamas instead of judging someone with a medical condition! You'll never see me out in public in a pajamas, nor will you see me munching on chips all day while farting and watching movies! There's a huge difference between being lazy, or having a medical condition that severely limits your ability to live a very active life! And for your information, I do not spend my days farting and watching movies!
NEVER judge me for using a wheelchair to get around! You don't have to be paralyzed to use a wheelchair, you can also use one because of severe pain, fatigue and instability. I didn't buy my wheelchair, it was provided to me through my Occupational Therapist and the wheelchair center, and to get an "active chair" like mine, you need to meet certain criteria, which I obviously do since I have a lightweight active chair, which is quite expensive. They do not give those out randomly to people! The wheelchair helps me greatly, I can be more active in the wheelchair and be out for longer, and cover greater distances than if I'm on my feet. I can only stand up for a couple of minutes before I feel really unwell.
DO NOT blame things on my medication, or say it's wrong of me to take medicines to manage my condition! The medicines I take are not something you can buy over the counter, nor are they something doctors look upon lightly. They are heavy duty and the type and dosage is adapted to fit me, and it took a long time for me and my doctor to decide which was the best for me. With it I can function better, I can think more clearly and physically function better. Without my medicines, I'm a useless pile of ouch that you can barely touch without making me scream from pain, and I have a high pain tolerance, a broken bone barely makes me flinch!
DO NOT say using bracing and splints is wrong! Using joint supports is common practice for Ehlers Danlos Syndrome and I don't know anyone with EDS anywhere in the world who doesn't use bracing if their skin can tolerate it! The important thing to remember is to only use the bracing as much as you need and not more. If used right, bracing prevents injury, delays long term issues such as arthritis and improves your physical ability to do something, be it enabling you to use your hands better, or be it preventing you from constantly spraining an ankle when walking. Bracing can also relieve some of the pain.
If you truly care, you're more than welcome to come with friendly suggestions of things I could try, things that may have helped you if you live with a similar condition. But don't ever say I SHOULD do those things, or judge me if I choose to do things my way! There's a pretty damn good reason I do things the way I do them- I live in this body 24/7, this is MY body and MY life. And unless you live in MY body, don't tell me how to best manage MY condition!
My life is a fine balance act on the edge of a cliff. A step wrong and I may suffer really bad for a long time. I have a team of medical professionals around me. And the way I live my life and do things has been approved by the medical professionals I have on my case.
Pacing is the key, and listening to what my body is saying, and trying to keep my hip in place when I do get in and out of the car when driving...
I also have a frog living in my chest, also known as possible case of POTS or dysautonomia, this further complicates things a bit and forces me to be extra careful so I don't pass out, or fall due to a big jump in my heart rate, especially when I stand up.
Extreme fatigue increases the risk of falling and injuries, if you can't remember what I wrote about exercise, just go back and read it again.
So, these are some of my pet peeves... I won't judge your way of life, if you don't judge mine! I only ever give people helpful suggestions, and they can choose themselves if they want to try it or not.
I could make this list longer, but my hands are seriously killing now...
Well said!! Thanks for sharing your feelings
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