You see me at the store. My hair is all coiffed perfect. Colored green, and black. I have a cute hairstyle, and my makeup looks good. I seem happy. I'm doing the things other Moms do. I'm buying food. I'm playing with my kids. I seem in control. I'm not in a wheelchair. I'm not carrying around an oxygen tank. I don't look like one of the zombies form Michael Jackson's Thriller. I don't have a wooden leg, and I have all 10 toes. So I can't be sick right? WRONG! If you only knew for 1). The prep it took me to be able to go to the store, and 2). the hell crash after math I will pay just for going to the store. When a normy wants to go to the store they make a list, they get dressed, get their kids, and they go. Me? Let me tell you what I have to do just to go to the DAMN store. You see me, and say "oh well she looks good!" Oh I shall tell you just what it takes to "look good", and "not sick".
Okay so I cut my own hair. I have to because my damn meds cost 250-300 a month so I can't afford a haircut in a salon. While I'm happy I CAN cut my own hair it takes me an hours an a half. Cut a little let arms fall. Because when you have POTS, and lift your arms above your head your get dizzy! So a what should be a 15 minute haircut turns into an hour, and a half. I color my hair funny colors to be fun. It gives me some happy in a shitty illness. So ya that is me. Fun nothing else. Sometimes however I'm to weak, and my husband has to do my color. Ya a man does my color. After 10 years of marriage he has seen it enough he knows how to do it. The shower I took before I can to the store. I can't bend over to shave my legs. If so I will pass out in the shower. If I lift my arms to long I see stars. So I have learned to shave my arm pits faster than you can say Mississippi. I use barely warm water. To hot makes me dizzy, and to cold makes my BP drop. Sometimes I shower sitting down. My hair is short because I just cant care for long hair any more. Washing, and blow drying long hair is out of the question!
The make up you see me wear? That makes my skin look so good? First off when you have EDS you naturally look younger. That is not some miracle cream. So that is a bonus. I can only wear the kind of foundation that blends to different skin tones. You know comes in Light, light-medium, and medium. I have Medium. Because who knows if I will be medium light, medium dark, or just medium. It changes daily. Depends how I feel, and if I have color that day? My skin color changes with my blood pressure. So if my blood pressure is crap then I'm pale. If I'm having a pretty good day, and feel okay then I just might be my normal skin tone. So that blend to your skin foundation comes in handy vs. buying 6 different foundations. Then there is the 2 coats of concealer, the 2 different kinds of powder too. That all is before the eye makeup, blush, and lipstick. All of which is applied sitting down because of POTS I get dizzy standing up. So I do allot things most people do standing up sitting down.
You look at all my pictures on FaceBook, and you say 'wow how can she be as sick as she says? She sure does allot!' FaceBook is cool because I enjoy sharing my life journey. However I can edit as I choose. So you really think I include everything? No! I can manipulate it as I need it. If my living room is a mess I don't take a picture in there. If I smell bad no one knows. No one knows that I was up until 4am puking with a migraine unless I choose to share it, and that I have insomnia. Unless I tell them I do. FaceBook is the perfect fake it till you make it paradise!
The many things I do, I do so to keep my mind of things. And look closely. Do you see allot pictures of me? No. Why? I look like hell. If you do see me I'm sitting down, or laying down. The pictures of the things I post are things that can be done sitting. Cooking, crafting, writing, playing on the floor with my kids. I have modified my life around this illness. There is not a room in my house that you cannot go into, and see that it has not been modified in some way to suit me. My kitchen has lighter things. A chair, a food processor, a fancy mixer. My bathroom is full of things that are sick friendly. The many meds. The 3 different eye drops, and lighter hair brushes for messed up hands. Bath salts to help with sore muscles, and only the best TP because I poop all the time. Magazines to read when I'm stuck on said John 30 minutes. Then look into my bedroom. Haha if you didn't know me personally you would think I was 87. A CPAP machine, tons of medications, Kleenex, boring bedding, and it's kind of a mess. It doesn't appear to be a room of a young middle aged women.
Sure I do many things. I cook. I clean. I craft, and I make some very cute things. I write, I'm happy. I'm a mom, a friend, a daughter, and I blog. How possibly could I be sick? Well you don't live with me. You are on the outside looking in, and you only see a portion of my life. It doesn't mean that I'm sick any less. It just means that I have a life. I have kids. A husband, dogs, and cats. I have something to live for. People need me. I need them. So I'm driven to want to cook them a meal, be pleasant at least sometimes. To go out, and be with them, and spend time with them. Even if it's hard on me sometimes. And do things for them. It's no different than when I'm sick my husband is driven to want to care for me. I'm still a caregiver too. It gets me out of bed everyday. It helps me move on. It doesn't mean that I'm any less sick than the next guy. It just means that I choose to not let sick take over my life. I just accept it, and realize it's a part of me. The same as I'm short or my eyes are hazel.
You cannot judge people for the lack of what they don't do. Or like me for all the things that I do. My doctor, and husband would be happy to tell you that I'm advised against doing some of them, and other things wear me out really bad. To me it's worth it. I will take a few crashes here, and there to enjoy some glory days once in awhile! If we sit around fearing what might happen, or what could happen that leads for a very boring life. Because when you are ill like me everything could make you worse, and you should always do more than you are currently doing. Eating more. Drinking more water. Eating more salt, eating less fat. Stressing less, and loving more. Taking your meds exactly as prescribed. It always something! Blah blah blah. Plus my ass gets get plum sick of being on the couch. I'm scared I will get a bedsore or something. I have a life to live. It may not be what you think is a good life, but I think it's okay. Sure I'm sick. So what? I'm past that. It's a part of me. It's here to stay. I can't afford to waste my precious energy feeling sorry for myself. There are people way worse than me. Like dead for example!
So I'm gonna live a little, even if it's hard on me sometimes. I have seen people with illnesses far more severe than mine do more than I. Likewise I have seen people with minor alignments do a whole lot less. It boils down to determination. How determined are you? Well me I'm determined that there is more to life than living on this couch. Bitching about others.....judging them, and thinking I know how their life really is. TV sucks, and I can only read so much. So I get up, and every day I do at least 3 things. Because I refuse to just sit rotting away saying I didn't try my best. Please don't judge me! Unless you live with me, and know the full story. You might be surprised just how sick I really am, but somedays you just can't care.............
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