A "normal" day

Recently, multiple people have told me I need to get a job and get back out there now. Please, stop. I am not without a job by choice. I am without a job because I CANNOT physically work. I am not "unemployed". I am "disabled" and there is a HUGE difference. Please before you start advising me on how to live my life, learn more about my conditions and how they affect me. Unfortunately, I think the people who seem to give such advice won't read this.

Let's go through a "normal" day.

I HAVE to wake up naturally. If I set an alarm, my whole body gets thrown off for the rest of the day. No it's not the same as you experience, it's different, because I have health conditions and this sets off those health conditions.

So the time I wake up changes, but once I do I can't get right up out of bed either. I have to lay there and focus on my breathing to get my breathing back to normal, to expand my lungs, and get things adjusted to begin a day. This typically takes an hour from the time I wake up to the time I can get out of bed.

Then I go downstairs and eat a simple breakfast as I make my coffee. My body isn't ready to be upright yet so as soon as this is done, I have to go lay back down. When I say lay, I mean I sit up in bed with my legs extended. It's hard to sit in a chair because my legs have to be up so the blood doesn't pool so I don't get weak and pass out. So I sit in bed, drink my coffee, read my daily devotional, pray, check email, etc.

If I then have enough energy I will change, throw my hair up and go for a short walk. This is to give my body a little bit of "exercise" while getting outdoors because I really dislike being cooped up in here all the time. But I don't last long and I sit down throughout the walk.

When I come back I have to rest more before I can take a shower. After my shower, I don't dry my hair, I don't put on makeup. Why? To conserve my energy. I get dressed and rest again, with my legs up, while I eat lunch- typically that someone else made for me. Then I need to continue with my legs up to let my food digest. My body can't really handle multiple functioning at once.

In the afternoon I will typically come on my computer and get things done. This could be bills, medical claims, writing a blog, etc. This is again with my legs up, and typically in bed because my arms can rest. I can't continuously type on a computer at a desk or table. My arms must rest or MG will move to my diaphragm. I take breaks throughout the afternoon to basically pace the house a little or bounce on my mini trampoline- yes I know that sounds weird. I have a mini trampoline and I bounce, not jump, it's supposed to help with blood circulation or something. If I have to make phone calls, afterwards I'm even more worn out. If its a stressful call, my body will sometimes just shut off and I am forced to do absolutely nothing.

Then there is dinner, typically something very simple- a salad or smoothie I can do myself without a lot of muscle usage or standing upright in one place. Rest after dinner, legs up. Breaks of pacing the house or mini trampoline. Then maybe I'll read, listen to music, maybe watch a show, chat with friends, then bed.

A few times a week I try to get out... to a store, visiting with a friend, something fun... but it's only for a few hours at a time and I had to basically take all day to take my time getting ready for that, and rest the day before and the day after. You see pictures of those rare moments, not of every other frequent moment of exhaustion, fatigue, weakness, nausea, dizziness, lightheadedness, breathing trouble, tachycardia, bradycardia, so on and so forth.

If this sounds relaxing, try doing it every single day. Not because you want to but because you are forced to. I would LOVE to be able to work, I would LOVE to be able to have an income, I would LOVE to be able to live alone. But this is my day and that makes it slightly impossible. So I make the most of every moment of energy I have, and if I spend it with you realize that's all I can do for the day and it's a pretty big deal to be able to do that.

If I don't rest over and over and over, specifically with my legs up, arms down, specifically not doing anything, not talking during those rest breaks. I will crash and I will crash hard. Even if I tried to do a part time job say from 12-4 every other day, I can't last 4 hours. And I can't shower, dress, drive, and work all at once. I only have so much energy and the majority of it is used merely to get through a day of doing nothing.

So if you want to advise that I "get a job"... please, go find me a very very part time one, say 2 or 3 hours a day with a break in between those hours, that I can do from home, from bed, that doesn't involve anything in repetition/constant meaning no I cannot do a call center type of job because I cannot talk for an extended period of time. I cannot do anything for an extended period of time. I last maybe an hour at a time, and then an hour rest, over and over and doing very simple, non-physical things. But if you find a "work-from-bed" part time as you have the energy to type of position, THEN pass it on. Until then, I don't need advice on what I should do with this body that prevents me from doing it. If I could, I would and I would appreciate if you stop making me feel bad that I can't.

Thank you.