Aa
Guilt and MS
So, we are finally moved into our new home. A few months ago when we found out we were moving an hour down the road, I felt pretty confident that I could continue some things in my life that were tied to our old base ... an hour from the new one.
Throughout the move, I've worked like crazy and felt so fatigued at times I couldn't even see straight. My legs feel so weak and I've been having pins and needles in my left side for a few days now. I can't see my new doc yet, but hopefully soon once they finish our medical processing.
All of these makes me feel so guilty ... I told my daughter she could continue her karate at our old base. She's excelled at the sport and even won four first place titles at last year's European championships. As a military family, there is often little continuity for her and I thought this would be so easy to give her. She loves the sport and they don't have it at the new base, so I agreed to drive her the hour twice a week for class.
Well, the first week we did it, I was so exhausted just driving the one way. I convinced myself it was because I'd been working so hard with the move. So I rested up and made the drive again this past week. It is still exhausting to me. I can't believe it ... it's a freaking hour drive.
I broke down crying to my husband the other night because I realized I'm jnot the same me anymore. I used to be able to set up our house after a move in just a couple days. Now, we're set up -- barring a few pictures on the wall, but I needed so much more help this time. The fatigue frustrated me and I got snippy at times.
Then the drive thing ... well, I realized I might not be able to continue it for my daughter. That's what really killed me. She sacrifices so much being a military child ... the moving, the deployments of her dad, having to start all over every time we relocate, etc. I so wanted to give her this one thing. But I'm honestly scared of driving down the autobahn ... more in the night when we return home ... when I'm just that exhausted.
My little breakdown with my husband helped me relieve some pent up guilt, but I still feel wretched that I cannot do this for my daughter. Are there meds for fatigue? Do they have lots of side effects? I hate MS for taking this energy away from me. I was so active once ... my family used to joke about how I could never sit down. Now climbing the stairs makes me want to rest.
Anyway ... I feel better having vented some. I'm so blessed to have my supportive family, but it's so nice to have others like you all who really understand what I am feeling.
Blessings,
ArmyGirl73
Throughout the move, I've worked like crazy and felt so fatigued at times I couldn't even see straight. My legs feel so weak and I've been having pins and needles in my left side for a few days now. I can't see my new doc yet, but hopefully soon once they finish our medical processing.
All of these makes me feel so guilty ... I told my daughter she could continue her karate at our old base. She's excelled at the sport and even won four first place titles at last year's European championships. As a military family, there is often little continuity for her and I thought this would be so easy to give her. She loves the sport and they don't have it at the new base, so I agreed to drive her the hour twice a week for class.
Well, the first week we did it, I was so exhausted just driving the one way. I convinced myself it was because I'd been working so hard with the move. So I rested up and made the drive again this past week. It is still exhausting to me. I can't believe it ... it's a freaking hour drive.
I broke down crying to my husband the other night because I realized I'm jnot the same me anymore. I used to be able to set up our house after a move in just a couple days. Now, we're set up -- barring a few pictures on the wall, but I needed so much more help this time. The fatigue frustrated me and I got snippy at times.
Then the drive thing ... well, I realized I might not be able to continue it for my daughter. That's what really killed me. She sacrifices so much being a military child ... the moving, the deployments of her dad, having to start all over every time we relocate, etc. I so wanted to give her this one thing. But I'm honestly scared of driving down the autobahn ... more in the night when we return home ... when I'm just that exhausted.
My little breakdown with my husband helped me relieve some pent up guilt, but I still feel wretched that I cannot do this for my daughter. Are there meds for fatigue? Do they have lots of side effects? I hate MS for taking this energy away from me. I was so active once ... my family used to joke about how I could never sit down. Now climbing the stairs makes me want to rest.
Anyway ... I feel better having vented some. I'm so blessed to have my supportive family, but it's so nice to have others like you all who really understand what I am feeling.
Blessings,
ArmyGirl73
Hello all,
I just read all your comments and I am so blessed to have all your support. I will take all this info to my doc to figure out the best fatigue medicine for sure.
We went on a short trip after I wrote this, and when I returned home of course I just needed some major recovery time. That with the move really wiped me out and it does increase some symptoms, doesn't it?
Thank you all so much for the advice and support. You all are such a true God send in my life. Thank you, thank you, thank you!
Cheers,
ArmyGirl73
I just read all your comments and I am so blessed to have all your support. I will take all this info to my doc to figure out the best fatigue medicine for sure.
We went on a short trip after I wrote this, and when I returned home of course I just needed some major recovery time. That with the move really wiped me out and it does increase some symptoms, doesn't it?
Thank you all so much for the advice and support. You all are such a true God send in my life. Thank you, thank you, thank you!
Cheers,
ArmyGirl73
During my last relapse, I took Concerta. It is an adhd med. I loved it. It really helped me get over the relapse. I quit taking it when I no longer needed it. I Niece gets it through the AF base here in MS. I hope they can give you something.
My heart went out to you when I read this. I know how desperately you want this and I see that you have several good suggestions. One of the realities for many of us with MS is that now we must ask for help. The fatigue robs us of soooo much!
I use Provigil (modenafil) for my fatigue. As my NS Neuro made the diagnosis he said, "Most of my MS patients like this drug the most." It was almost like night and day for me when I began it. At least I can accomplish a few things during my day.
Provigil is a brain stimulant without being so much a systemic stimulant. It helps enormously wqith alertness along with physical fatigue. Some people with high blood pressure cannot take it, most people handle it very well. There is little potential for abuse, unlike some of the ADD drugs which are also used for MS fatigue. IHowever, it is obscenely expensive. My supply of 30 tablets was about $300. t is US approved for the treatment of narcolepsy and shift-work fatigue. It is commonly used off-label for the fatigue of MS. Since it is not formally approved for MS, some insurers finagle out of paying for it.
Other meds used are those listed by Lulu, plus Adderal and Ritalin. She mentioned Amantidine which several people here take. This is a med that is also used for Parkinson's Disease and as an antiviral med (like against influenza), but has great anti-fatigue properties, but can have troublesome side effects in some.
Please be aware that overexerting can have lasting effects for days. Duh...you've likely learned that already. How often do you need to make the drive for karate? Would it be possible to rest up for a day or so ahead of time. It's hard, but we have to involve our families in budgeting our energy. As wives and mothers women tend to take on too much anyway. Trying to maintain that kind of superwomen role can ultimately defeat us.
I hope some of this helps. Does your husband understand all this?
There are some things that you can read and have your family read that might help with them understanding what you go through.
This is a brochure from the National MS Society:
http://www.nationalmssociety.org/search-results/index.aspx?pageindex=0&pagesize=20&keywords=But+you+look+so+good&x=30&y=9
Here is a poignant essay from a MedHelp Member with MS:
http://www.medhelp.org/health_pages/Multiple%20Sclerosis/What-I-want-my-family-and--friends-to-know/show/357?cid=36
Quix
I use Provigil (modenafil) for my fatigue. As my NS Neuro made the diagnosis he said, "Most of my MS patients like this drug the most." It was almost like night and day for me when I began it. At least I can accomplish a few things during my day.
Provigil is a brain stimulant without being so much a systemic stimulant. It helps enormously wqith alertness along with physical fatigue. Some people with high blood pressure cannot take it, most people handle it very well. There is little potential for abuse, unlike some of the ADD drugs which are also used for MS fatigue. IHowever, it is obscenely expensive. My supply of 30 tablets was about $300. t is US approved for the treatment of narcolepsy and shift-work fatigue. It is commonly used off-label for the fatigue of MS. Since it is not formally approved for MS, some insurers finagle out of paying for it.
Other meds used are those listed by Lulu, plus Adderal and Ritalin. She mentioned Amantidine which several people here take. This is a med that is also used for Parkinson's Disease and as an antiviral med (like against influenza), but has great anti-fatigue properties, but can have troublesome side effects in some.
Please be aware that overexerting can have lasting effects for days. Duh...you've likely learned that already. How often do you need to make the drive for karate? Would it be possible to rest up for a day or so ahead of time. It's hard, but we have to involve our families in budgeting our energy. As wives and mothers women tend to take on too much anyway. Trying to maintain that kind of superwomen role can ultimately defeat us.
I hope some of this helps. Does your husband understand all this?
There are some things that you can read and have your family read that might help with them understanding what you go through.
This is a brochure from the National MS Society:
http://www.nationalmssociety.org/search-results/index.aspx?pageindex=0&pagesize=20&keywords=But+you+look+so+good&x=30&y=9
Here is a poignant essay from a MedHelp Member with MS:
http://www.medhelp.org/health_pages/Multiple%20Sclerosis/What-I-want-my-family-and--friends-to-know/show/357?cid=36
Quix
Hello, I am a limoblander however I know about having your way of life (yourself) be taken from you.
My friends used to say that they needed to make an appt with me just to see me. Now I tell them, just knock on my bedroom door. My mom used to say, you try to get too much done in one day. Now she tells me I should be pushing myself to go to work and get it off my mind. yikes,,,,if I only had the energy I would.
You and your family sound amazing. And as Lu said, Thank you to you and your family for all that you do for the rest of us.I think her idea of a driver is excellent. Could make a much needed friendship for you as well!
The only other option I thought of is possibly your church if you are involved. Same concept..........I wish you and yours the absolute best! Ozzy
My friends used to say that they needed to make an appt with me just to see me. Now I tell them, just knock on my bedroom door. My mom used to say, you try to get too much done in one day. Now she tells me I should be pushing myself to go to work and get it off my mind. yikes,,,,if I only had the energy I would.
You and your family sound amazing. And as Lu said, Thank you to you and your family for all that you do for the rest of us.I think her idea of a driver is excellent. Could make a much needed friendship for you as well!
The only other option I thought of is possibly your church if you are involved. Same concept..........I wish you and yours the absolute best! Ozzy
Hi there,
So much of what you are feeling hits home with me because it's so hard to maintain what we have been providing to our families with limitaions. Takes so much more effort, or you have to rearrange tasks, or skip them altogether... and oh, that compounded guilt adds so much pressure!
I've not found the magic combo, and I'm usually carrying around guilt for one thing or another I couldn't get to or do. I know I do it to myselft too with my own expectations.
You bring up such an important topic. I hope others will share too.
-shell
So much of what you are feeling hits home with me because it's so hard to maintain what we have been providing to our families with limitaions. Takes so much more effort, or you have to rearrange tasks, or skip them altogether... and oh, that compounded guilt adds so much pressure!
I've not found the magic combo, and I'm usually carrying around guilt for one thing or another I couldn't get to or do. I know I do it to myselft too with my own expectations.
You bring up such an important topic. I hope others will share too.
-shell
Dear ArmyGirl,
You and your family give so much by living this career and lifestyle choice for all of us - thanks! The sacrifices go so much further than the service men and women - the families give up so much too. Thanks!
Fatigue control? Yes, there are some drugs that can help, and perhaps its time to talk to the doctors about them One that jumps into my mind immediately is Provigil and its new sister drug Nuvigil (drug name: Modafinil).
Other common drugs for fatigue are Amantadine, and Pemoline. That gives you some drug ideas to research and talk to your doctor about.
As for your daughter - good for you to recognize the sacrifices she makes. We are very good friends with two AF families and it breaks my heart each time they move - the children give up the most of anyone in their families.
Can you possible hire a "mother's helper" to assist with this transportation task? Find a teenager on your post who has driving privleges and can accompany you for the trip. You could drive one way, and the helper could possible drive home. It would be like hiring a baby sitter for 3-4 hours twice a week. Or contact your morale and welfare office and ask if there are volunteers that could assist you. And don't overlook posting a note on the PX bulletin boards. Who knows, there may be someone who has reasons to travel the hour too, and you could work together at getting there and back.
Try to think creatively and I know you will come up with a way for your daughter to stay connected.
my best,
Lulu
You and your family give so much by living this career and lifestyle choice for all of us - thanks! The sacrifices go so much further than the service men and women - the families give up so much too. Thanks!
Fatigue control? Yes, there are some drugs that can help, and perhaps its time to talk to the doctors about them One that jumps into my mind immediately is Provigil and its new sister drug Nuvigil (drug name: Modafinil).
Other common drugs for fatigue are Amantadine, and Pemoline. That gives you some drug ideas to research and talk to your doctor about.
As for your daughter - good for you to recognize the sacrifices she makes. We are very good friends with two AF families and it breaks my heart each time they move - the children give up the most of anyone in their families.
Can you possible hire a "mother's helper" to assist with this transportation task? Find a teenager on your post who has driving privleges and can accompany you for the trip. You could drive one way, and the helper could possible drive home. It would be like hiring a baby sitter for 3-4 hours twice a week. Or contact your morale and welfare office and ask if there are volunteers that could assist you. And don't overlook posting a note on the PX bulletin boards. Who knows, there may be someone who has reasons to travel the hour too, and you could work together at getting there and back.
Try to think creatively and I know you will come up with a way for your daughter to stay connected.
my best,
Lulu
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