I too feel the same way, some people are starting to understand a little more about what is going on. People will see me in my wheel chair one day and then the next day I might be walking so they think that I am better and thats that. But they dont realize that I have good days and bad days. My brother I think is still in denial on what is going on and thinks that since I am home all day I have nothing to do and that I should be working. He finally got a little clue that I am truly sick when they found out that I am having seizures and the doctors were showing concerns. My mom has been by my side since day one and continues to be there and said she will be there till she is no longer able to take care of me. She is the only one that gets whats going on. There are a few other people I know that are also sick with other things such as MS and they to know how it feels to be sick. So its kind of funny we just sit around talking about how we feel and sympathize with each other. Sometimes you just need those people that are going through the same things to talk to. No one truly understands what someone goes through till they are in it them selves. One day you are living a normal life and just going on about your daily life and then all of a sudden it is forever changed.
It is frustrating! Here has to be one of the most frustrating examples: I have 2 young sons so I save all my energy for them. I know when I go on vacation, I will take time to recover but for me it is worth it. I will do whatever I can to have a great time with them. At our last Disney vacation (a 3 day trip that takes me 2 weeks to recover) my husband tells me that he can’t believe anything is wrong given that I can run around with them like I do. Forget the meds, rash, and the inability to stay awake anytime the next week.
Anita, I am so sorry to hear that the two of you both have a chronic disease but it disturbed me to hear that you would rather have your husband's "Parkinson's" because he has outward appearances of being sick. I've been struggling with Fibromyagia for 20+ years now and just recently been diagnosed with Lupus. Yes it's hard for people to understand what you go through on a daily basis but having a mother who died with Parkinson's I wouldn't wish that on my worst enemy. She became so distraught over not being able to do the simplest of things like feeding herself walking or writing a letter which she used to love to do. Her mind would leave her at times and she couldn't remember even my father and for the last couple of years of her life she refused to believe who he was even though he was a constant caregiver. I saw her go from a vibrant energetic and loving person down to a mere shell of her former self up til the day she died. She also had terrible episodes of painful spasms that nothing helped with. I know where you are coming from with the Lupus only too well but never down play what others have to deal with. I'm sure he's wishing the same thing too. God Bless you both during your upcoming days.
Anita Chandlef said:
I do to, because on the outside they see me and think that nothing is wrong, they don't know of the pain you have constantly, get winded when you try to do thing, I have taken to using a cane and when I stand up for longer times my hands and body starts to shake. Yes my husband has Parkinson and sometimes I wish I had that because out ward he looks to be sick, and it's like my disease don't count.
That was a great video Louters, thanks for posting it.
Louters said:
I too feel the same way, some people are starting to understand a little more about what is going on. People will see me in my wheel chair one day and then the next day I might be walking so they think that I am better and thats that. But they dont realize that I have good days and bad days. My brother I think is still in denial on what is going on and thinks that since I am home all day I have nothing to do and that I should be working. He finally got a little clue that I am truly sick when they found out that I am having seizures and the doctors were showing concerns. My mom has been by my side since day one and continues to be there and said she will be there till she is no longer able to take care of me. She is the only one that gets whats going on. There are a few other people I know that are also sick with other things such as MS and they to know how it feels to be sick. So its kind of funny we just sit around talking about how we feel and sympathize with each other. Sometimes you just need those people that are going through the same things to talk to. No one truly understands what someone goes through till they are in it them selves. One day you are living a normal life and just going on about your daily life and then all of a sudden it is forever changed.
I don't think that any chronic debilitating and possibly fatal disease should be taken lightly.
I can understand both sides to this, as before my diagnosis less than a year ago, I probably could have been mistaken for having Parkinson's including the tremors, the forgetfulness, the not knowing people, speaking to people who weren't there, etc. This is because lupus can attack the CNS just like any other organ.
As I have been getting "better" with my meds those that didn't see me back then find it hard to understand what the "big deal" was about.
Angelwing, I am so sorry for your loss. I do understand, believe me.
I think we all need to remember that this disease affects us all in different ways and some are more visible than others to the outside world.
And while I don't think any offense was meant, I also know that many members have that same sentiment at times. We have a "sometimes" invisible disease that makes it frustrating for many of us because we feel we must always convince others that we really are ill. Seriously ill in many cases.
I wish both of you good health,
DeAnne
angelwing said:
Anita, I am so sorry to hear that the two of you both have a chronic disease but it disturbed me to hear that you would rather have your husband's "Parkinson's" because he has outward appearances of being sick. I've been struggling with Fibromyagia for 20+ years now and just recently been diagnosed with Lupus. Yes it's hard for people to understand what you go through on a daily basis but having a mother who died with Parkinson's I wouldn't wish that on my worst enemy. She became so distraught over not being able to do the simplest of things like feeding herself walking or writing a letter which she used to love to do. Her mind would leave her at times and she couldn't remember even my father and for the last couple of years of her life she refused to believe who he was even though he was a constant caregiver. I saw her go from a vibrant energetic and loving person down to a mere shell of her former self up til the day she died. She also had terrible episodes of painful spasms that nothing helped with. I know where you are coming from with the Lupus only too well but never down play what others have to deal with. I'm sure he's wishing the same thing too. God Bless you both during your upcoming days.
Anita Chandlef said:
I do to, because on the outside they see me and think that nothing is wrong, they don't know of the pain you have constantly, get winded when you try to do thing, I have taken to using a cane and when I stand up for longer times my hands and body starts to shake. Yes my husband has Parkinson and sometimes I wish I had that because out ward he looks to be sick, and it's like my disease don't count.
Yes! We all here halve a lot to deal with-all the time. But how someone (family and friends),that are close to us -being smart mouth and in denial, I (myself can’t and don’t )with !! It makes me stress more…Beverly L.
Louters said:
I too feel the same way, some people are starting to understand a little more about what is going on. People will see me in my wheel chair one day and then the next day I might be walking so they think that I am better and thats that. But they dont realize that I have good days and bad days. My brother I think is still in denial on what is going on and thinks that since I am home all day I have nothing to do and that I should be working. He finally got a little clue that I am truly sick when they found out that I am having seizures and the doctors were showing concerns. My mom has been by my side since day one and continues to be there and said she will be there till she is no longer able to take care of me. She is the only one that gets whats going on. There are a few other people I know that are also sick with other things such as MS and they to know how it feels to be sick. So its kind of funny we just sit around talking about how we feel and sympathize with each other. Sometimes you just need those people that are going through the same things to talk to. No one truly understands what someone goes through till they are in it them selves. One day you are living a normal life and just going on about your daily life and then all of a sudden it is forever changed.
By all means do what your body allows! Take 30min. breaks in between,that will help you alot, then when you come back home your body won’t feel so over whelmmed…Beverly l.
Bebop said:
It is frustrating! Here has to be one of the most frustrating examples: I have 2 young sons so I save all my energy for them. I know when I go on vacation, I will take time to recover but for me it is worth it. I will do whatever I can to have a great time with them. At our last Disney vacation (a 3 day trip that takes me 2 weeks to recover) my husband tells me that he can’t believe anything is wrong given that I can run around with them like I do. Forget the meds, rash, and the inability to stay awake anytime the next week.
Had surgery yesterday to remove two bladder tumors and the nurse getting me ready for the surgery went over all my medical problems and said “you don’t look like u have so many medical issues”. That’s when I had to educate her on lupus and how most lupus patients look like they aren’t near as sick as they really are!
I’m reading a really good book right now on exactly that subject - it’s called “Just Fine: Unmasking Concealed Chronic Illness and Pain” by Carol Sveilich. I’m not that far into it yet, but so far it looks really good, and it was highly recommended. I think you can pick up used copies pretty cheap on Amazon (that’s what I did.) But it’s all about dealing with exactly the problems you mention - getting people to understand life with invisible illnesses, coping with the “but you don’t look sick” syndrome, all that stuff,