Lately I have struggled and some of my favorite misconceptions about chronic illness have come out of the woodwork. I know most are well-meaning.
1. Well you went off all those prescriptions you must be getting better
While I have left a lot of symptoms that were actually side effects of medications I was taking, it means by no means that everything is gone. There was a reason why I was put on those medications. There are always side effects and you know that going in. Many times I had tried natural remedies. The thing is, it is hard to wait for natural remedies to kick in. They also often won’t be as helpful if you are on other medications. Yes, I dropped a lot of prescriptions. I take a lot of pills. I don’t need that pointed out. I have enough issues with the amount of pills I take. However more and more now are supplements. It is a balance that people with chronic illness have to walk. I know I got on so many because I was just so tired of reading side effects. I didn’t care, I just wanted it to stop.
2. You are looking better you must be feeling better
Better is a relative term when you are dealing with chronic illness. Some days I can eat and drink the same things and feel fine. Some days the same exact things leave me in bed. If you want to say something just say you are looking better, leave it at that. It takes a lot of effort to look the way I do each day. Some days I hide it better, some days not so much.
3. You did it before, you can do it again
Oh how this frustrates me, on so many many levels. On a personal level because I freaking know I did it before. Sometimes my body cooperates with me. Some days what my brain says we get done that day we actually get done. Some days though, they fail to communicate. There is just something missing. Perhaps that day my leg muscles were feeling fine, maybe today they are giving me hell. My favorite is when they play this game that they are to short for the space they are in. Fetal position sound familiar? Now imagine your muscle frozen there and didn’t want to elongate again.
4. If it hurts why do you keep doing it.
Because I can do it. If I stop because it hurts I will lose the ability to do it. Whatever, it happens to be. MY favorite one is crossing my legs. Yes it hurts, yes it pisses my hips off. but I can still do it most of the time. I do it because sometimes on my worst days I can’t do it and it frustrates and saddens me. Some days I do it and the next day that spot my ankle rested on is so angry. Like someone just sat there punching it instead of just an ankle sitting there.
5. It’s okay to take time for yourself but maybe you are taking too much
It is a constant inner struggle I deal with. Taking time for me, staying in bed resting, taking a walk just by myself. I fight to take it and I fight my gut instinct to rest. Sometimes I pay more for that. If I am taking time to myself, I really need it. It maybe I need it mentally or physically but the point is I need it. Please don’t question how much time I am taking.
6. It must be nice to take a nap
No. Most of the time it isn’t. Most of the time when I take a nap it is unintentional. Most of the time when I wake up I feel worse not better. If I end up taking a nap I know there will be little to no functioning that day. If I feel I need a nap, chances are I won’t be able to fall asleep. I could be yawning so much my eyes are watering, I won’t sleep. Please don’t tell me that is in my head. I have spent hours laying in bed with my eyes closed yawing and eyes watering and still didn’t sleep. Then there are days that I was just going to lay down for fifteen minutes, just long enough to get the muscles to stop protesting. The next thing I know its forty-five minutes later and I feel horrid.
7. If you ate a better diet you would feel better
Chances are if I am eating junk food or drinking soda, it’s the only thing keeping me going that day. I do believe food is healing. I do believe eating healthy is where it is at. I do that for the most part. I am particular about our meals being balanced. We all have our vices, mine happens to be mountain dew. It could also be that you caught me during my cycle or right before it when I crave sweets and salts. What isn’t obvious is I try really hard to limit those to that one week. It’s a form of choosing your battles wisely.
8. If you dressed for the weather you might be more comfortable.
This is one that always gets people. I wear jeans 99 percent of the time. Things brushing my shins hurts. It can even just be air or wind. It doesn’t feel good.It’s like that electrical shock feeling that leaves you on edge. Sometimes, on really fun days, I feel that all over. If a little extra sweat will make that pain bearable, that is what I am gonna do.
9. You pushed through it before why is it different now?
No two flares are the same.If its a flare just brought on by the illness itself its one thing to push through. If it is a flare from pushing through to get something done,probably not going to be able to push through it again. This is the same thing as number three. Sometimes I am so extra lucky that I get a flare and recover and then flare again! How freaking great is that.
10. Aren’t you taking something for that?
Chances are, yes. Actually I am probably taking or doing multiple things for “that”. Unless you have found a magic pill that makes everything go away, let’s just skip that whole comment okay?