I feel like I need to share some thoughts I have had recently so bare
with me. It’s been a few days of insomnia, intense pain and a lot of
sleeping during the day.
I mean like all day, night etc. It Feels like I am wasting my life away sleeping and i hate it.
I try so hard to get myself up and make an effort to do something, anything to feel normal But what the norm for others is nowhere near my norm. And my body is in control.
When you suffer from Lupus it makes things like bathing, dressing, brushing your hair, laundry and house cleaning a chore and I am sad to admit this but I do require help from time to time even to get to the bathroom.
Lupus is the most unscheduled, unorganized disease and it doesn't care what you have planned. My day is dependent on how I feel. People say that you have to be positive about it and take control. I wish it were that easy.
The reality is...
If I hurt I can't Move, if I am sick I can't move, if my body hurts I Don't want to move. So yes Lupus wins! It's not something I can turn off and on.
I can only make the best of my positive days and pay for it days after.
I don't want to be negative but it's hard not to.
-To hide it all or Embrace it?
I thought keeping it hidden was the way to go but learned it wasn't. (And I learned the hard way.)
When people would say things to me about how I did or didn't look or even behind my back.
When I was passed up on a higher position I knew it was because I had Lupus and not because of my qualifications. But I am still human and it hurt which didn't help but make the guilt I felt inside worse. So it spiraled into depression a dark depression filled with things i am not happy to share.
How do you manage a chronic illness and keep a job?
You Try But as usual the feelings inside take over and you start to concentrate on being better than the disease You are just stuck I worked at a call center for Usaa FSB and i loved it But to face the reality that i would never move up i would just be on the phones what was hard for me was when i saw someone else getting promoted in a position i should be in (and i knew that i was the best candidate for the job) But no matter what i did it would never be good enough and i would never get anywhere because of this disease. You can hope and pray it will go into remission and that you can try again someday. Or be like me and do the wrong thing Put my health last and make things alot worse . I knew that when I was able to walk through the door at work that it was always in the back of my mind. Am I good enough? Do they care? Is what they are promising me true? I beat myself up more every day, doubted myself and believed that people did care.
Mind you I know a few honestly understood but it was there job and there hands were tied .
I tried harder everyday and pushed myself more only to make my symptoms worse. I did my best for a year but it was so hard when my symptoms hit my body a lot harder and faster than I thought it would. The Summer was the hardest and the roughest.
The guilt I felt when I missed a day or days because of a flare was the hardest thing on me and I was stubborn and wouldn't rest like my body needed me to which makes it alot harder trust me .
It was my choice to put my health first and so i resigned and am no longer working . I am so Thankful things worked out financially so I could be home it has been a lot better and i find my Flare ups don't happen as much . I have learned my lesson and will listen to my body from now on and will rest when needed..
-What happened to your Face?
Explaining to people my Butterfly rash was not pretty at all.
It comes and goes and last as long as it wants and there is nothing I can do about it.
Usually when this happens I stay inside, hide and try to cover it with makeup but this also is a struggle, if I use the wrong product it may cause a harsher reaction or make it stand out more and sometimes make it look worse. I never know until I try it. What worked yesterday may cause a side effect today. Covering it at times is extremely difficult Or I just don't have the energy too. I have found a few foundations I like that work but not 100% satisfied yet. Still on the hunt for that perfect product I can use. I find that these are the days I need more rest and that is usually what I do.
Support-
I have a great support system my kids and my Wonderful husband. He has picked up a lot of the things I used to do.
(Like everything basically) and doesn't complain. I am so thankful for him in my life I know it isn't easy but he does it. He works hard all day, comes home cooks dinner and handles any chore I wasn't able to do. Never once saying anything hurtful or mean or guilt me because I can't do something.
Sadly I know some other spouses that do this and it breaks my heart for them because i understand. We talk all the time about what is happening with me and this disease and I can trust him to be honest with me even if it’s not something I want to hear.
I need the honesty to help me fight harder.
Recently on a rough day I asked how long he thought he had with me and he said only 3 yrs. and this was Because my body is degenerating too fast and I am weaker and weaker everyday .
Did I want to hear that?
No it broke my heart.
I don't want to die at age 43. Honestly I don't want to die at all until I am old and it's my time.
(Unless I can be a vampire then I am okay with immortality.. 🎥)
DIET-
I have changed my diet and given up the foods I can't have which are trigger foods.
I am trying my best to eat healthier but with all the allergies I have to fruit ,nuts and fish that makes a diet hard.
Yes I know that a diet can’t cure Lupus but I can cut out those foods that hurt me and try to extend my life more . I have given up all meat except chicken, (no more Cafe Rio) :
'( all nightshade vegetables) potatoes, green beans and those are just a few.
I eat more salads and more of the vegtables I can have. I don't eat out anymore at fast food places.
I have noticed I am not sick as much overall. And I think back to being a child that the problems I had then we're associated with Lupus It makes more sense now. I still have struggles with caffeine but have lowered my soda intake and drink a lot more water.. (Baby Steps...)
Exercise more-
Yes I know the more I move the better I will feel. Exercise is hard because I hurt so badly. Walking is really all I can do now so I try too. It’s hard to get up and work out when every body part is screaming at you... Walking around in the mall puts me in bed for hours ..
But it's something I am hoping I can get to eventually.
Social life-
Social Life and Activities-
My Social life has taken a hit hard. I don't do a lot now days. And some days I am okay with that and others it kills me inside. I can barely handle family time or a walk through the grocery store. So yes sadly unless we are going to be laying on the couch or doing nothing I will not be attending.
I use to be adventurous and go out all the time and loved to shop and look at stuff for hours but now if its more than a few minutes count me out.
I recently went to the mall with my husband and daughter walked around went to a few more stores and when I got home at 3 my body crashed hard and no matter how I tried to stay awake it won and I slept until almost 8 o clock .
So I am sorry that I can’t make it to your event please understand that my life has changed and it’s not that I don't want to be there to celebrate with you. I physically and emotionally cant . But I still Love you and I am Happy for you... Lets wrap this up since my hands hurt and i am getting tired .
Thank you for taking the time reading this please know that I wish I could do the things I use to but it’s got to be done a different way now. And I am trying my best to adjust to this new way of doing things ...
Trust me don't take what you can do on a normal basis for granted because there may be someone out there praying that they can do at least one thing without any help like they used to do.
Well now I feel better and I hope you understand more of how I feel let's help spread awareness and find a cure.
My next post will be fun... I am waiting for my Dec. #Ipsy Glam Bag to arrive ... and will have some more reviews of makeup and skin care products.
I haven't been feeling to well to wear any makeup lately but have a few products I am hoping to try out... Till the next post
Stay strong and Keep Fighting
Don'tHideIt-EmbraceIt
💜Misty
I mean like all day, night etc. It Feels like I am wasting my life away sleeping and i hate it.
I try so hard to get myself up and make an effort to do something, anything to feel normal But what the norm for others is nowhere near my norm. And my body is in control.
When you suffer from Lupus it makes things like bathing, dressing, brushing your hair, laundry and house cleaning a chore and I am sad to admit this but I do require help from time to time even to get to the bathroom.
Lupus is the most unscheduled, unorganized disease and it doesn't care what you have planned. My day is dependent on how I feel. People say that you have to be positive about it and take control. I wish it were that easy.
The reality is...
If I hurt I can't Move, if I am sick I can't move, if my body hurts I Don't want to move. So yes Lupus wins! It's not something I can turn off and on.
I can only make the best of my positive days and pay for it days after.
I don't want to be negative but it's hard not to.
-To hide it all or Embrace it?
I thought keeping it hidden was the way to go but learned it wasn't. (And I learned the hard way.)
When people would say things to me about how I did or didn't look or even behind my back.
When I was passed up on a higher position I knew it was because I had Lupus and not because of my qualifications. But I am still human and it hurt which didn't help but make the guilt I felt inside worse. So it spiraled into depression a dark depression filled with things i am not happy to share.
How do you manage a chronic illness and keep a job?
You Try But as usual the feelings inside take over and you start to concentrate on being better than the disease You are just stuck I worked at a call center for Usaa FSB and i loved it But to face the reality that i would never move up i would just be on the phones what was hard for me was when i saw someone else getting promoted in a position i should be in (and i knew that i was the best candidate for the job) But no matter what i did it would never be good enough and i would never get anywhere because of this disease. You can hope and pray it will go into remission and that you can try again someday. Or be like me and do the wrong thing Put my health last and make things alot worse . I knew that when I was able to walk through the door at work that it was always in the back of my mind. Am I good enough? Do they care? Is what they are promising me true? I beat myself up more every day, doubted myself and believed that people did care.
Mind you I know a few honestly understood but it was there job and there hands were tied .
I tried harder everyday and pushed myself more only to make my symptoms worse. I did my best for a year but it was so hard when my symptoms hit my body a lot harder and faster than I thought it would. The Summer was the hardest and the roughest.
The guilt I felt when I missed a day or days because of a flare was the hardest thing on me and I was stubborn and wouldn't rest like my body needed me to which makes it alot harder trust me .
It was my choice to put my health first and so i resigned and am no longer working . I am so Thankful things worked out financially so I could be home it has been a lot better and i find my Flare ups don't happen as much . I have learned my lesson and will listen to my body from now on and will rest when needed..
-What happened to your Face?
Explaining to people my Butterfly rash was not pretty at all.
It comes and goes and last as long as it wants and there is nothing I can do about it.
Usually when this happens I stay inside, hide and try to cover it with makeup but this also is a struggle, if I use the wrong product it may cause a harsher reaction or make it stand out more and sometimes make it look worse. I never know until I try it. What worked yesterday may cause a side effect today. Covering it at times is extremely difficult Or I just don't have the energy too. I have found a few foundations I like that work but not 100% satisfied yet. Still on the hunt for that perfect product I can use. I find that these are the days I need more rest and that is usually what I do.
Support-
I have a great support system my kids and my Wonderful husband. He has picked up a lot of the things I used to do.
(Like everything basically) and doesn't complain. I am so thankful for him in my life I know it isn't easy but he does it. He works hard all day, comes home cooks dinner and handles any chore I wasn't able to do. Never once saying anything hurtful or mean or guilt me because I can't do something.
Sadly I know some other spouses that do this and it breaks my heart for them because i understand. We talk all the time about what is happening with me and this disease and I can trust him to be honest with me even if it’s not something I want to hear.
I need the honesty to help me fight harder.
Recently on a rough day I asked how long he thought he had with me and he said only 3 yrs. and this was Because my body is degenerating too fast and I am weaker and weaker everyday .
Did I want to hear that?
No it broke my heart.
I don't want to die at age 43. Honestly I don't want to die at all until I am old and it's my time.
(Unless I can be a vampire then I am okay with immortality.. 🎥)
DIET-
I have changed my diet and given up the foods I can't have which are trigger foods.
I am trying my best to eat healthier but with all the allergies I have to fruit ,nuts and fish that makes a diet hard.
Yes I know that a diet can’t cure Lupus but I can cut out those foods that hurt me and try to extend my life more . I have given up all meat except chicken, (no more Cafe Rio) :
'( all nightshade vegetables) potatoes, green beans and those are just a few.
I eat more salads and more of the vegtables I can have. I don't eat out anymore at fast food places.
I have noticed I am not sick as much overall. And I think back to being a child that the problems I had then we're associated with Lupus It makes more sense now. I still have struggles with caffeine but have lowered my soda intake and drink a lot more water.. (Baby Steps...)
Exercise more-
Yes I know the more I move the better I will feel. Exercise is hard because I hurt so badly. Walking is really all I can do now so I try too. It’s hard to get up and work out when every body part is screaming at you... Walking around in the mall puts me in bed for hours ..
But it's something I am hoping I can get to eventually.
Social life-
Social Life and Activities-
My Social life has taken a hit hard. I don't do a lot now days. And some days I am okay with that and others it kills me inside. I can barely handle family time or a walk through the grocery store. So yes sadly unless we are going to be laying on the couch or doing nothing I will not be attending.
I use to be adventurous and go out all the time and loved to shop and look at stuff for hours but now if its more than a few minutes count me out.
I recently went to the mall with my husband and daughter walked around went to a few more stores and when I got home at 3 my body crashed hard and no matter how I tried to stay awake it won and I slept until almost 8 o clock .
So I am sorry that I can’t make it to your event please understand that my life has changed and it’s not that I don't want to be there to celebrate with you. I physically and emotionally cant . But I still Love you and I am Happy for you... Lets wrap this up since my hands hurt and i am getting tired .
Thank you for taking the time reading this please know that I wish I could do the things I use to but it’s got to be done a different way now. And I am trying my best to adjust to this new way of doing things ...
Trust me don't take what you can do on a normal basis for granted because there may be someone out there praying that they can do at least one thing without any help like they used to do.
Well now I feel better and I hope you understand more of how I feel let's help spread awareness and find a cure.
My next post will be fun... I am waiting for my Dec. #Ipsy Glam Bag to arrive ... and will have some more reviews of makeup and skin care products.
I haven't been feeling to well to wear any makeup lately but have a few products I am hoping to try out... Till the next post
Stay strong and Keep Fighting
Don'tHideIt-EmbraceIt
💜Misty
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