Hi everyone. Sorry I've been gone for quite some time now. I thought I should give everyone a little update as to why that is.
Long story short, I've been going through an unwanted divorce and it became final about a month ago. That's the big portion of my life I had yet to mention and still can't go into detail on so not to intrude on others. Divorce is one of the most stressful life events many people unfortunately encounter. Seeing as stress makes MG and POTS worse, it's been hard, very hard. But by the grace of God I've been able to stay out of the hospital. Please keep praying that continues.
However, the last month has been incredibly stressful and exhausting. Much of my stuff which was still in Texas arrived to me in Illinois without having the date of delivery coordinated. That in itself was stressful but then I've been having to sort through each and every thing and put things away. 3 weeks later I've sorted through everything but still am putting it away. My body is exhausted. You don't realize the blessing of your muscles working properly until they no longer do. It's really really hard.
I sit here and stare at the mess around me. I sit here and watch as my mom puts things away for me. I sit here because when my body stops working that's all I can do is sit here. My face has been very much affected, vision has been off, swallowing shockingly hit me hard waking up choking a few nights, arms and legs really bad. But thankfully, praise God, my breathing has been alright. So thankful for that!
On top of the "stuff", of course there is the process/paperwork and such of everything getting split up, signed over, etc. I'm also working on the name change stuff and that seems like a bunch of jumping through hoops. It's really a lot of work when your body doesn't function well.
In the past month I've really declined. I've been using all strength and energy I have to do everything I need to do with this so the house isn't a disaster and so pending things are no longer pending. So I haven't gotten on to write because whenever I'm resting, I'm literally resting... arms and eyes included. So just wanted to pop in and give you all an update as to why I haven't been writing frequently. Hopefully all this will come to a close soon and I can get back to "my normal" and be writing more frequently again soon. Until then prayers are much appreciated. Please raise me up in prayer for total healing, body, mind and soul. Thank you all! God bless!
Wednesday, July 23, 2014
Saturday, July 5, 2014
Why normal needs to not happen
Yesterday, the 4th of July... I tried to be *somewhat* "normal".
I went to the parade in the morning, and I strayed off my healthy eating routine.
That's all, and now I'm paying for it.
Today I'm super weak. When I tried to walk a bit, all the muscles in my legs started spasming. They can't handle walking today. No big deal? If I kept going I would topple over my own legs because they would no longer be able to support me. My eyelids are drooping, that rarely happens to me. Lots of trouble focusing with my vision. My face and jaw are weak, not talking and definitely not smiling much, I can't. My arms and upper body are weak. I'm resting. After this blog I need to stop typing, even with my arms rested on me as I lay here, today it's too much. I'm laying in bed resting. That's all I can do. And I'm hoping it gets better rather than worse, because worse would be dangerous.
All this because...
I went out in the morning when typically my body can't function well enough until the afternoon.
I sat outside, in the sun, for about an hour, when sun makes MG worse.
I ate a sub sandwich- that means bread, processed meats, cheese, non-organic veggies, those things are poison to my body.
All of that seems only part of a normal day for anyone healthy. For me it was too much and set off my MG. This is exactly why "normal" can't happen. Even if we are starting to feel like we can do "normal", we shouldn't because the result is this. The result is a day or multiple days weak, unable to do anything, possibly with a hospital stay, and occasionally ICU with the vent. That's MG.
It's hard for those who don't have it to understand this. It doesn't make sense. We know that. But we aren't asking you to fix us or figure things out. We're just asking you to listen, to care, to be there however we need you because we do need you.
So once again, please understand- THIS IS MG... or POTS or whatever it is hitting us at the moment, or all things combined. It is not being depressed, it is not us having anxiety, it is not us complaining, it is not us being lazy. It is a REAL PHYSICAL DISABLING ILLNESS that we battle every single second of every single day. It's invisible, but it's real, and we need people to stop arguing us on that... because another thing that flares us up... stress.
Thank you. Prayers are much appreciated.
I went to the parade in the morning, and I strayed off my healthy eating routine.
That's all, and now I'm paying for it.
Today I'm super weak. When I tried to walk a bit, all the muscles in my legs started spasming. They can't handle walking today. No big deal? If I kept going I would topple over my own legs because they would no longer be able to support me. My eyelids are drooping, that rarely happens to me. Lots of trouble focusing with my vision. My face and jaw are weak, not talking and definitely not smiling much, I can't. My arms and upper body are weak. I'm resting. After this blog I need to stop typing, even with my arms rested on me as I lay here, today it's too much. I'm laying in bed resting. That's all I can do. And I'm hoping it gets better rather than worse, because worse would be dangerous.
All this because...
I went out in the morning when typically my body can't function well enough until the afternoon.
I sat outside, in the sun, for about an hour, when sun makes MG worse.
I ate a sub sandwich- that means bread, processed meats, cheese, non-organic veggies, those things are poison to my body.
All of that seems only part of a normal day for anyone healthy. For me it was too much and set off my MG. This is exactly why "normal" can't happen. Even if we are starting to feel like we can do "normal", we shouldn't because the result is this. The result is a day or multiple days weak, unable to do anything, possibly with a hospital stay, and occasionally ICU with the vent. That's MG.
It's hard for those who don't have it to understand this. It doesn't make sense. We know that. But we aren't asking you to fix us or figure things out. We're just asking you to listen, to care, to be there however we need you because we do need you.
So once again, please understand- THIS IS MG... or POTS or whatever it is hitting us at the moment, or all things combined. It is not being depressed, it is not us having anxiety, it is not us complaining, it is not us being lazy. It is a REAL PHYSICAL DISABLING ILLNESS that we battle every single second of every single day. It's invisible, but it's real, and we need people to stop arguing us on that... because another thing that flares us up... stress.
Thank you. Prayers are much appreciated.
Wednesday, July 2, 2014
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.
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.
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