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hi all. I am almost 52 and was diagnosed with ? My MRI looked like swiss cheese w/o contrast. No contrast cause I have kidney disease and lupus, too. I have used a cane for 2 years and have about zero balance. How do you keep going? How do you respond to familyl members who accuse you of faking it? You just need to push yourself, that's all is what I get told alot. I also have cognitive problems and I just had to tell my 24 year old daughter, "I just have MS..I'm not retarded" because she was talking to me like I was a 2 year old. I could really use some tips. Oh, the best one is my 31 year old daughter who says I should be more like Montel! My neurologist said, "There's not many MS patients who can do what Montel does." arghh. It's frustrating.
Welcome to the forum. I'm sorry I missed you yesterday. And I am so sorry you are not getting the kind of support your need from your family. You have heard some very good words here and I, too, hope you will stay. I agree that showing your family the pictures of your swiss cheese brain compared with normals may give them a real feeling for the fact that this is a true disease of the brain. I also agree that many people do the "you're just wanting sympathy" thing because of fear and denial. But, it is extremely hurtful to you.
I also got some of that - not outright or aloud, but especially from my dad. I could tell he had come to regard me as a royal pain with my severe fatigue and heat intolerance. His once-high achieving daughter was now a high-maintenance lazy slob. Since the diagnosis he is trying really hard, but I'm not sure he understands.
I think its the fatigue that people don't get. Heck, they've been really tired before and they got over it. What's the problem? You've had 14 hours of sleep today?! They don't get how bone-crushing this fatigue is. How those extra steps to the kitchen make the meal you need just not worth it. The MS Society has a couple good brochures you can print on Fatigue and on Invisible symptoms.
The balance thing causes a whole new level of fatigue on top of the MS fatigue, the harder work of dragging your legs around, and any any normal fatigue you have from living life or from depression or stress. When the brain loses it's automatic function of keeping you upright and balanced, the eyes have to take over and you begin using them to visually keep it together. However, this comes at a horrible price. The eyes use the conscious mind to keep your balance and this causes a mental fatigue.
When I was first disabled it was from intractable vertigo unrelated to the MS. I tried to continue working in my practice, but the fatigue kept overpowering me earlier and earlier in the day. It also robbed me of much of my quick cognitive function. I left medicine when I realized that I posed a danger to my patients.
Your daughter, if she's emotionally 16, may not get it. She self-involved and critical of you anyway at that age. I was a pediatrician for 23 years and worked with the developmentally delayed for 10 of those years, so that can be a really trying age.
This forum has grown to be the best place I could imagine for support, tips, a laugh or two and seeing that the really weird things you go through are being experienced by others,too. I hope you find the same thing.
Welcome again, Quix
I also got some of that - not outright or aloud, but especially from my dad. I could tell he had come to regard me as a royal pain with my severe fatigue and heat intolerance. His once-high achieving daughter was now a high-maintenance lazy slob. Since the diagnosis he is trying really hard, but I'm not sure he understands.
I think its the fatigue that people don't get. Heck, they've been really tired before and they got over it. What's the problem? You've had 14 hours of sleep today?! They don't get how bone-crushing this fatigue is. How those extra steps to the kitchen make the meal you need just not worth it. The MS Society has a couple good brochures you can print on Fatigue and on Invisible symptoms.
The balance thing causes a whole new level of fatigue on top of the MS fatigue, the harder work of dragging your legs around, and any any normal fatigue you have from living life or from depression or stress. When the brain loses it's automatic function of keeping you upright and balanced, the eyes have to take over and you begin using them to visually keep it together. However, this comes at a horrible price. The eyes use the conscious mind to keep your balance and this causes a mental fatigue.
When I was first disabled it was from intractable vertigo unrelated to the MS. I tried to continue working in my practice, but the fatigue kept overpowering me earlier and earlier in the day. It also robbed me of much of my quick cognitive function. I left medicine when I realized that I posed a danger to my patients.
Your daughter, if she's emotionally 16, may not get it. She self-involved and critical of you anyway at that age. I was a pediatrician for 23 years and worked with the developmentally delayed for 10 of those years, so that can be a really trying age.
This forum has grown to be the best place I could imagine for support, tips, a laugh or two and seeing that the really weird things you go through are being experienced by others,too. I hope you find the same thing.
Welcome again, Quix
Hi and welcome to the greatest forum there is, and sorry for being so conceited!!!!
I am sorry that you are having such a hard time with your other two conditions and now to top it off you have MS and two grown up daughters that do not understand what you are going through.
For starters, have they read Montel's two books called "Mountain Move out of my Way" and "Climbing Higher" and if not, have them read them. He looks like he does not have anything to wory about in the world, but he had to fight his own battles before he was dxd. For starters he had to wait for 17 years to have a dxd, he even had to leave the Navy, he was an officer, something he worked very hard to achieved. If I keep writing about him then they would not have to read the books, which they would be very surprised because sometimes he would be hurting so much, but he is a very responsible and dedicated individual, that he would do what ever it takes to do what he is scheduled to do.
Your daughters are grown up now and are probably in the denial phase, which we all go through, eventually they would come around. I have been dealing with the name of the monster for 12 years and was finally dxd in 2003 and my 26 year old son, even when he sometimes takes me to the hospital, my neuro's appointments and talks to her, has taken it so hard, that there are times that he does not accept that I have MS. I have been his mom and dad for 26 years and gone throgh thick and thin, so he thicks his mother is that strong and powerful woman who fought her battles in order to get where she is now and to get him to off to college, he is a year away to become an engineer, that there is no way that sometimes she is so sick that she cannot get up. He is going through counseling now.
I know that it is very hard to have your family, friends, anybody around you to understand what you are going through, but keep your chin up. There is a lot of information that you can acquire through the internet or by contacting the MS society or better yet , Montel Williams has the Montel William MS Foundation. Have your daughters and family members access this site and they well see that he, at time, had felt the same way you are feeling now.
In the mean time try, and I know this is better said than done, try not to think about of what others think because it hurts you and your stress level would go up, which may trigger an MS relapse, we do not want that, do we?
We all know what you are going through, we are here sometime or another, post your feeling, vent out, cry with us, do what ever you feel that would do any good, one of us will be with you. In the mean time, you will be in our prayers.
I forgot to tell you, let your family know that God decided that only special people get MS, so you are one of HIS chosen one. He does not make mistakes and works in misterious ways. Do not loose your faith.
Take good care of yourself,
Gooddays
I am sorry that you are having such a hard time with your other two conditions and now to top it off you have MS and two grown up daughters that do not understand what you are going through.
For starters, have they read Montel's two books called "Mountain Move out of my Way" and "Climbing Higher" and if not, have them read them. He looks like he does not have anything to wory about in the world, but he had to fight his own battles before he was dxd. For starters he had to wait for 17 years to have a dxd, he even had to leave the Navy, he was an officer, something he worked very hard to achieved. If I keep writing about him then they would not have to read the books, which they would be very surprised because sometimes he would be hurting so much, but he is a very responsible and dedicated individual, that he would do what ever it takes to do what he is scheduled to do.
Your daughters are grown up now and are probably in the denial phase, which we all go through, eventually they would come around. I have been dealing with the name of the monster for 12 years and was finally dxd in 2003 and my 26 year old son, even when he sometimes takes me to the hospital, my neuro's appointments and talks to her, has taken it so hard, that there are times that he does not accept that I have MS. I have been his mom and dad for 26 years and gone throgh thick and thin, so he thicks his mother is that strong and powerful woman who fought her battles in order to get where she is now and to get him to off to college, he is a year away to become an engineer, that there is no way that sometimes she is so sick that she cannot get up. He is going through counseling now.
I know that it is very hard to have your family, friends, anybody around you to understand what you are going through, but keep your chin up. There is a lot of information that you can acquire through the internet or by contacting the MS society or better yet , Montel Williams has the Montel William MS Foundation. Have your daughters and family members access this site and they well see that he, at time, had felt the same way you are feeling now.
In the mean time try, and I know this is better said than done, try not to think about of what others think because it hurts you and your stress level would go up, which may trigger an MS relapse, we do not want that, do we?
We all know what you are going through, we are here sometime or another, post your feeling, vent out, cry with us, do what ever you feel that would do any good, one of us will be with you. In the mean time, you will be in our prayers.
I forgot to tell you, let your family know that God decided that only special people get MS, so you are one of HIS chosen one. He does not make mistakes and works in misterious ways. Do not loose your faith.
Take good care of yourself,
Gooddays
People who don't have the knowledge about something such as MS tend to fear MS. When people fear something they back away from it and try to distance themselves from it to protect themselves. We know that knowledge is power because we have had to fight for the information we have gotten about this disease out of necessity and what we have gained for the most part is what has kept us alive!
The people in your life that are making things so difficult for you are, in my mind, to be pitied for the lack of knowledge that they have and what they are missing out on in not being a part of your life by pushing you away! However, you need to understand that it's not you they are pushing away, it is the fear of the unknown and as hard as it can be, it's up to you to provide them with the knowledge about MS so that they are not afraid!
Do you have a MS Society office in your area? If you can contact the MS Society, they can provide information for you to pass on to your family members in question. I am sure that if you asked them, they could arrange for some sort of counselling for you and the family. Unfortunately honey, I think that you are the one that is going to have to reach out for assistance here, just as you have started to by posting on the MS Forum.
This is only my opinion and you can take it or leave it but I fell strongly that your family would feel differently and their attitudes would change if you give them the tools to work with and the opportunity to use them.
Please stay in touch with us here in the Forum Willow...we are a group of caring individuals...some of us diagnosed with MS, some still in what we call 'Limboland', but we are here for you. Should you want to rant, rave, cry, laugh or just have someone's shoulder to lean on, we are here 24/7. Please reach out though and try to help your family...I really think they need help before they can help you.
Lots of Hugs,
Rena705
The people in your life that are making things so difficult for you are, in my mind, to be pitied for the lack of knowledge that they have and what they are missing out on in not being a part of your life by pushing you away! However, you need to understand that it's not you they are pushing away, it is the fear of the unknown and as hard as it can be, it's up to you to provide them with the knowledge about MS so that they are not afraid!
Do you have a MS Society office in your area? If you can contact the MS Society, they can provide information for you to pass on to your family members in question. I am sure that if you asked them, they could arrange for some sort of counselling for you and the family. Unfortunately honey, I think that you are the one that is going to have to reach out for assistance here, just as you have started to by posting on the MS Forum.
This is only my opinion and you can take it or leave it but I fell strongly that your family would feel differently and their attitudes would change if you give them the tools to work with and the opportunity to use them.
Please stay in touch with us here in the Forum Willow...we are a group of caring individuals...some of us diagnosed with MS, some still in what we call 'Limboland', but we are here for you. Should you want to rant, rave, cry, laugh or just have someone's shoulder to lean on, we are here 24/7. Please reach out though and try to help your family...I really think they need help before they can help you.
Lots of Hugs,
Rena705
I am sorry to hear that your not gettng the support you need right now. That has to be very frustrating. Have you thought of inviting any of your family members along on a doctor's visit? I know this isn't the same but I'm a speech therapist and I often have the primary care person tell me that their other family members aren't following through with treatment recommendations or don't believe their is anything really wrong so I often ask that person to have the spouse or in-law attend a therapy session. So I can answer their questions directly. Sometimes they have to hear it from someone else.
I have a chronically ill mother ( lymes disease that went undiagnosed for 2 years suffering for 10 years) and now that I have my mystery disease I look at her very differently now. I use too wonder why she didn't fight harder or advocate more. Now I know that it is all she can do some days to get up and take a shower. It was easy for me think those things in that body that hadn't failed me.
Hang in there and know that there are alot of people here that are going through the same things and we are here for you. You will be in my prayers.
Rebeccah
I have a chronically ill mother ( lymes disease that went undiagnosed for 2 years suffering for 10 years) and now that I have my mystery disease I look at her very differently now. I use too wonder why she didn't fight harder or advocate more. Now I know that it is all she can do some days to get up and take a shower. It was easy for me think those things in that body that hadn't failed me.
Hang in there and know that there are alot of people here that are going through the same things and we are here for you. You will be in my prayers.
Rebeccah
Have you considered carrying around a couple of pictures, one of someone's brain without lesions, and one of your "Swiss cheese" brain? You can show them to people who think you are "faking it." That oughta get the point across. Also, send your daughters to the Websites that are available to explain MS and its idiosyncratic course. There are useful links for "family" that they ought to read. Then they'll have a better idea of how to behave appropriately around their parent. Montel is experiencing a lucky course. MS has as many different groupings of manifestations are there are people who have it.
E
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Hello and welcome Willow. We feel your pain. I think everyone here knows exactly where you are coming from.
This is a great place to stop by and know that everyone here is much like you and understand. It is a great tool to help you get by. We have a wonderful group who is totally supportive.
Again welcome, and please stop in and vent or talk anytime you need to
Jazzy
This is a great place to stop by and know that everyone here is much like you and understand. It is a great tool to help you get by. We have a wonderful group who is totally supportive.
Again welcome, and please stop in and vent or talk anytime you need to
Jazzy
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