Posted by: hockeygrl1 | February 14, 2011

A Day in the Life a Spoonie

Living with lupus has been a huge change for me and for my children. I can no longer make plans and know that I will be able to keep them. I just don’t know how I will feel from day to day. It’s not anyone’s fault that they can’t understand what it’s like to live with an unpredictable illness. They don’t know what it’s like to not be able to jump out of bed at 5 am and run off to work because you can’t jump anymore. They don’t know how hard it is to cancel a date with your friends because you just can’t find the strength to go out or leave the dishes on the stove because washing them isn’t important once you admit you can’t do it all.

I try to accomplish as much as I can in a day. I cook for myself and clean my own area. I even walk up and down the stairs a million times to do the dishes or cook. That gets hard when your arms and legs feel like they’re full of lead. I shop for necessities for me and the kids, like TP and shampoo. I help the kids with homework and when I’m well and not heavily medicated, drive Cassie to and from dance. I take breaks often because I would collapse if I didn’t, but the jobs get done. Some of you might think it doesn’t sound like I do a lot and for a healthy person it’s not, but I’m not healthy or normal like I used to be.

I don’t know why my lupus didn’t show signs of its seriousness earlier in my life. I know it did show signs. My cholesterol was always high, I know now that this was because of the lupus attacking my pancreas, not because of my diet. My blood pressure was always high, this is because of my kidneys not functioning well because of the lupus and I could sleep all day on the weekends and still sleep at night. Mom always thought this was crazy, but it was getting me by at the time.

The problem I have is that I have to live with plenty of people that are normal. I compare myself to them and try to fit in with them and try to keep up with them. Hell, I try to be as normal as I can must of the time. When people let me know in advance that something is going on, a party, a dinner, even dance competitions, I’m afraid to put them on the calendar. As the day gets closer, I try to do less, thinking that some of this energy I am saving can be used on the day of the event. I get nervous and anxious knowing that I won’t be able to keep up with them and that I’ll feel like crap afterward or that I will have to call and cancel because I’m just not able to function that day.

I try to do as much as I can in advance, such as shower and straighten my hair the day before. I know some of you think this is crazy, but taking a shower takes way more energy than cooking. It gets even worse if I add things like shaving my legs. It’s all the up and down of the arms to wash your hair and down to wash your legs and feet and then put lotion on after because of the dry skin from steroids and deodorant and if you’re going someplace nice you need make-up because otherwise they can see the bags and dark circles under your eyes. It’s all an act to make everyone else think you’re normal. So they don’t say you look like ‘death’ or ‘white as a sheet’. I forgot, if the sun is out, I need sunscreen on every part of my body that shows, even if it is just to drive to the doctor. The sun sucks the life out of me.

I try to remind people of my limitations when things come up, but they don’t know how it is, or they think they do know how it is and try to help with their remedies. I think if caffeine was a fix for my fatigue the doctor would have prescribed it by now. *smirk* The truth is, there is no easy fix for my sickness. And I know it’s not easy for people who knew the ‘old’ or ‘healthy’ me to understand because I did run a million miles a minute.

It’s hard to compare how lupus affects one person to how it is in another. It’s never the same. Everyone is different and different medications and limitations affect each person. Some people are lucky and only get the face rash and I kind of wish that was me. I’d take the rash over all this other crap anytime. Some people have a short flare and medications manage their symptoms, I’m jealous of these people as well, since I have not had a true remission since my diagnosis in 2007. My history with medications is not great either. They always seem to make me sicker or destroy another part of my body. I get to move on to a medication that is in clinical trials. Yeah I’m a Ginnie Pig! Let’s see how this one changes my body.

What am I trying to say about my day? It’s as full as it can be right now. I have all I can manage with kids and cleaning. That’s why social security says I’m disabled. Social Security guidelines for lupus are clear:

Systemic lupus erythematosus with one of the following:

  • Joint Involvement
  • Muscle Involvement
  • Ocular Involvement
  • Respiratory Involvement
  • Cardiovascular involvement
  • Digestive Involvement
  • Renal involvement
  • Hematologic involvement
  • Skin involvement
  • Neurological involvement
  • Mental involvement

Or Lesser involvement of two or more organs/body systems listed in paragraph A, with significant, documented, constitutional symptoms and signs of severe fatigue, fever, malaise, and weight loss. At least one of the organs/body systems must be involved to at least a moderate level of severity.”

What does that mean in my case? Systems involved: joints, respiratory, cardiovascular, digestive, renal, hematologic and skin. All of these are at least moderate, most are severe.

It’s due to these guidelines I am disabled and I can’t think of a job that will let me nap every afternoon to stay healthy. I’ve tried looking into working from home jobs, but none have panned out. I just keep hoping that something will happen, either my health will improve so I can hold down a full time job, or I’ll find something that is flexible enough to work with my symptoms.

Until then, I’ll just deal with what I’ve been dealt and hope that I have the support of my friends and family to get through this hard time in my life. Maybe normal is just around the corner, maybe not, I can keep hoping!

The Spoonie reference it to “The Spoon Theory” which describes living with an inviable illness such as lupus or fibromyalgia. Here is a link to the story: http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/

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