Aa
Being newly diagnosed is bizarre
I have an explanation for how I've been feeling. I have validation. I've started treatment. All good!
But, it doesn't make any difference in so many ways. Friends don't understand why I can't do much of what I used to do. I confessed to my roommate that I was frustrated and a little scared by how tired i got doing simple things, how my arms and legs felt like jelly inside, though my bones and ligaments still held me upright after running some errands.
She went off on a tear about her long and exhausting day, both emotionally and physically draining for her. I felt like I had no right to complain, that I have an explanation but no excuse. No wonder we get depressed!
I'm trying to psych myself up for a Christmas Eve gathering that I'll be driving myself to, interacting with extended family members that I don't see often. I just hope my Provigil gets approved soon, or they let me know that there's no way they'll pay, so I can buy some. I only have a couple pills left, and have some minor events to get to before then, not to mention doing some Christmas shopping.
I drove back roads to a close store today, and had just about enough energy to drive the four mile round trip and buy a loaf of bread and some chili seasoning.
So, how do you find a good therapist that understands MS issues? A group would be nice, but I would love to speak with someone one on one, so that I could feel heard and bare the injured little parts of my soul. Oops, I just did a little.
I know depression, and I'm not there, yet. I want to head it off at the pass, so to speak.
I'm kind of alone with all this, except for this forum. My MS nurse is very helpful, but very busy.
How do others deal with this stuff?
Kathy
But, it doesn't make any difference in so many ways. Friends don't understand why I can't do much of what I used to do. I confessed to my roommate that I was frustrated and a little scared by how tired i got doing simple things, how my arms and legs felt like jelly inside, though my bones and ligaments still held me upright after running some errands.
She went off on a tear about her long and exhausting day, both emotionally and physically draining for her. I felt like I had no right to complain, that I have an explanation but no excuse. No wonder we get depressed!
I'm trying to psych myself up for a Christmas Eve gathering that I'll be driving myself to, interacting with extended family members that I don't see often. I just hope my Provigil gets approved soon, or they let me know that there's no way they'll pay, so I can buy some. I only have a couple pills left, and have some minor events to get to before then, not to mention doing some Christmas shopping.
I drove back roads to a close store today, and had just about enough energy to drive the four mile round trip and buy a loaf of bread and some chili seasoning.
So, how do you find a good therapist that understands MS issues? A group would be nice, but I would love to speak with someone one on one, so that I could feel heard and bare the injured little parts of my soul. Oops, I just did a little.
I know depression, and I'm not there, yet. I want to head it off at the pass, so to speak.
I'm kind of alone with all this, except for this forum. My MS nurse is very helpful, but very busy.
How do others deal with this stuff?
Kathy
Good for you Kathy! I have a cat who knows when I have injected. He gets in my face and purrs like mad.
It is also o.k. to have bad days. I was so depressed at first I almost did not make it. Luckily I told professionals how bad it was and they helped me through. Knowing when you need help is a strength not a weakness.
Polly is now a part of my every day activities. She is so well behaved and is a lead in to all these important people. Legislators who would never give me the time of day now respond because of Polly. She may be the best MS lobbyist out there.
Polly showed me being different is no big deal. She was born deaf but she is happy and brave. We work together well because she has to trust me to be her ears and I trust her to protect my left side. It is as if we are one being.
Alex
It is also o.k. to have bad days. I was so depressed at first I almost did not make it. Luckily I told professionals how bad it was and they helped me through. Knowing when you need help is a strength not a weakness.
Polly is now a part of my every day activities. She is so well behaved and is a lead in to all these important people. Legislators who would never give me the time of day now respond because of Polly. She may be the best MS lobbyist out there.
Polly showed me being different is no big deal. She was born deaf but she is happy and brave. We work together well because she has to trust me to be her ears and I trust her to protect my left side. It is as if we are one being.
Alex
Alex, that is where I want to be with my life!
I did a great job with my injection last night, don't ache to badly, and am just extra fatigued. I had native american flute music playing as I prepared my injection last night. As I was ready to inject, I checked in with my body, found my heart beating too fast, just breathed until it slowed, then injected perfectly. Life is good!
Training a service dog would be way cool. Even better is being closer with your husband than ever before. Being more serene is wonderful.
Kathy
I did a great job with my injection last night, don't ache to badly, and am just extra fatigued. I had native american flute music playing as I prepared my injection last night. As I was ready to inject, I checked in with my body, found my heart beating too fast, just breathed until it slowed, then injected perfectly. Life is good!
Training a service dog would be way cool. Even better is being closer with your husband than ever before. Being more serene is wonderful.
Kathy
May NONE of us ever be annoyed by the complaints of others better off than we are...I think I am sometimes guilty of this. Fatigue is fatigue whether it has happened standing or sitting in a wheelchair.
Pain is pain and cannot be compared between people.
That's why no one should ever hesitate to post here because others are worse off. Piddle Posh!
Pain is pain and cannot be compared between people.
That's why no one should ever hesitate to post here because others are worse off. Piddle Posh!
My Doctor told me in a year I would think so much differently about MS. I was diagnosed in April. I already think differently about it.
People can't understand what I am going through. I can't understand what others are going through. I was at my MS group Xmas party and said to my husband I needed to sit down I had been standing all day. Someone in a wheel chair got angry with me.
I am feeling gratitude for my MS these days. I have discovered what truly matters in life and what is transitory. My husband and I are closer than ever. MS has lead me in a different direction with my life. I trained a service dog how cool is that? I live in the moment something. I am a lot more serene.
I may hurt and have neurological problems but I am alive. Life is good!
Alex
People can't understand what I am going through. I can't understand what others are going through. I was at my MS group Xmas party and said to my husband I needed to sit down I had been standing all day. Someone in a wheel chair got angry with me.
I am feeling gratitude for my MS these days. I have discovered what truly matters in life and what is transitory. My husband and I are closer than ever. MS has lead me in a different direction with my life. I trained a service dog how cool is that? I live in the moment something. I am a lot more serene.
I may hurt and have neurological problems but I am alive. Life is good!
Alex
Heather, that was indeed a beautiful post with important messages. Of course you are making sense. I do know that you wrote it because you truly care, and not one bit of it made me mad!
I've always known that pain and suffering is relative. Each person's experiences are no less important than anothers, and I often feel better when I put my stuff on a shelf and try to help someone else feel better or cheer them up. I drove a friend to her knee surgery when I was having trouble walking myself, spending the night on an air mattress. I drove my roommate to her knee surgery when I was only a couple weeks into recovering from surgery of my own. I fed her, brought her ice for her GameReady ice machine, even read to her.
I just never expected to have this disease and its fatigue and all combined with arthritis, knees that need replacing, nerve pain, etc. It has knocked me for a loop, a bit. I am sympathetic with all that my roommate is going through, help out when I'm able. She does understand a lot, but when she's totally stressed and in pain, she can be grumpy.
We went and decorated her 89 year old mom's tree last night. She was so crabby that her mom kept looking at me with raised eyebrows. Finally, I said "aren't you just a cranky puss!", and she started being nicer, and apologized to me when we were leaving, called her mom and told her how much she loved her, and apologized to her, too. I could tell it was difficult; their family doesn't discuss emotions much.
I've been trying to get up the energy to come on the forum more and respond to people's posts, as I always feel better when I'm able to contribute. My side effects to Avonex last for three days, though I can drive with Provigil during the third day. My injection leg aches badly that day, like I had worked out really hard. They are improving, though I'm not at full dose yet.
I've decided to pay for the Provigil, rather than wait and see how long it takes to have it approved or not. I've been going without, and it really points out how much it does help me when I DO take it.
Last night my roommate said she would pay for this month's prescription of it. Wow, what a Christmas present!
As for a therapist, the one I saw at the pain clinic said, after my second visit, that I didn't need to make a new appointment, that I was very able to deal with what life was handing me. Of course, that was before the MS stuff, so it will be interesting to see her again. I hope she knows of someone to refer me too.
I'll look out for toxic support groups; thanks for the heads up.
Thanks for all the support and encouragement. This Forum really is the best, with the most awesome people.
Hugs,
Kathy
I've always known that pain and suffering is relative. Each person's experiences are no less important than anothers, and I often feel better when I put my stuff on a shelf and try to help someone else feel better or cheer them up. I drove a friend to her knee surgery when I was having trouble walking myself, spending the night on an air mattress. I drove my roommate to her knee surgery when I was only a couple weeks into recovering from surgery of my own. I fed her, brought her ice for her GameReady ice machine, even read to her.
I just never expected to have this disease and its fatigue and all combined with arthritis, knees that need replacing, nerve pain, etc. It has knocked me for a loop, a bit. I am sympathetic with all that my roommate is going through, help out when I'm able. She does understand a lot, but when she's totally stressed and in pain, she can be grumpy.
We went and decorated her 89 year old mom's tree last night. She was so crabby that her mom kept looking at me with raised eyebrows. Finally, I said "aren't you just a cranky puss!", and she started being nicer, and apologized to me when we were leaving, called her mom and told her how much she loved her, and apologized to her, too. I could tell it was difficult; their family doesn't discuss emotions much.
I've been trying to get up the energy to come on the forum more and respond to people's posts, as I always feel better when I'm able to contribute. My side effects to Avonex last for three days, though I can drive with Provigil during the third day. My injection leg aches badly that day, like I had worked out really hard. They are improving, though I'm not at full dose yet.
I've decided to pay for the Provigil, rather than wait and see how long it takes to have it approved or not. I've been going without, and it really points out how much it does help me when I DO take it.
Last night my roommate said she would pay for this month's prescription of it. Wow, what a Christmas present!
As for a therapist, the one I saw at the pain clinic said, after my second visit, that I didn't need to make a new appointment, that I was very able to deal with what life was handing me. Of course, that was before the MS stuff, so it will be interesting to see her again. I hope she knows of someone to refer me too.
I'll look out for toxic support groups; thanks for the heads up.
Thanks for all the support and encouragement. This Forum really is the best, with the most awesome people.
Hugs,
Kathy
It is difficult to deal with the diagnosis and adjust to everything that goes along with MS, especially the Avonex.
Help is right around the corner. The Provigil will help you--I know it! This medicine has changed my life. It probably takes a bit to adjust to this medicine as well. I had a bit of a weird feeling on it at first--kind of like I was ready to jump right out of my skin. I wanted to do all of the physical activities that I couldn't do before, like clean my house, go shopping, etc. I felt I had the energy, but couldn't get to oomph behind me to do it. It was really strange. My heart also raced a little bit. It took about two weeks and a change in dosage before I felt like a different person. I still take only half of what was originally prescribed, but it works for me at that dosage.
Hang in there, forum friend!
Deb
Help is right around the corner. The Provigil will help you--I know it! This medicine has changed my life. It probably takes a bit to adjust to this medicine as well. I had a bit of a weird feeling on it at first--kind of like I was ready to jump right out of my skin. I wanted to do all of the physical activities that I couldn't do before, like clean my house, go shopping, etc. I felt I had the energy, but couldn't get to oomph behind me to do it. It was really strange. My heart also raced a little bit. It took about two weeks and a change in dosage before I felt like a different person. I still take only half of what was originally prescribed, but it works for me at that dosage.
Hang in there, forum friend!
Deb
I can only imagine what you're going through, Kathy. I hope your insurance company comes through SOON for you on the Provigil if it's working for you. And I think finding a good therapist for one-on-one sessions is a great idea in addition to checking out a support group.
Good luck, and hang in there!
Good luck, and hang in there!
I have been pushed aside by people that do not understand, ever since my diagnosis of MS, 14 years ago. I do not believe, like I am sure you would agree, that people with other diseases, get any more respect than we do. Like Ess says, "no one and I mean NO ONE, understands this, unless they have it." I think that goes for anyone fighting a disease or disorder that most people do not understand.
Please don't get mad at me, when I tell you Kathy; that you will probably experience people's ignorance as long as you are dealing with this serious ailment know as MS. When you do look for a support group to go to, please find one that is not full of gloom and doom. They are out there, by the dozens. If you find that a particular support group, does nothing but whine and complain at every meeting, you will soon find yourself more depressed and getting quite grumpy yourself. You need to surround yourself with people that have a more positive attitude and doesn't sweat the small stuff.
WE have to learn to understand other's and THEIR bad days too. When someone talks about their pain and their exhaustion, we must be polite to them and be sympathetic to them. They too are suffering, but in a different way. They want validation as much as we do. We have to remember that. If we don't get validation back from them, then that may be a "friend" that you really don't want to have around.
When my domestic partner complains about a horrible backache or leg cramps that wake him up in the middle of the night, I get up and try to comfort him. He then apologies that "he shouldn't complain, because with me having MS, he certainly doesn't suffer like I do." I tell him that he is wrong about that. We all have our own burdens, pain and obstacles to overcome. His pain, hurts! So I need to remember that, if I want HIM to be sympathetic, in my times of pain. Am I making any sense?
As the days, months and years go by (although I am praying for the cure in this decade) we have to concern ourselves with conserving our emotional energy on people that are upbeat. People that encourage you; not put you down when you cannot do something. There are people like that out there, everywhere.
I do feel also, that a therapist is a good option. It's knowing when to stop therapy and not depend on them to guide us through every step of our lives. I know people that have been in therapy for years and they are no further ahead that they were a year into their therapy. I have found that some therapists have a tendency to drag appointments out. Some of them will keep you on the appointment books, as long as you will keep coming back. Find one that will teach you lessons about living life with a disease; the ups and the downs, then get out into life and put those lessions to use. Get on with the job of living the best you can.
Is MS a super pain the butt? You bet it is. Find friends that want to share in your life, but don't be the person in that group, that continually complains about the pain you are in or the fatigue that you suffer from. Save that for the people here on the Forum that DO understand what you are going through or that "happy" support group, that be with you through the good days as well as the bad days. Always remember to give that encouragement back to others.
I hope you know, that I am not directing this post at you, specifically. I am saying it to myself and to everyone else that is dealing with this diseasae. It IS a b**ch and it's dern hard to live like this. The biggest thing we can do for ourselves and possibly others, is surround ourselves with people that have a zest for living. People that take those obstacles and do their best to turn them into positives.
Most of all, please do not let yourself get depressed from those people that "do NOT understand" what you are fighting, day in and day out. You could go out in public everyday and I guarantee, you will find people that are so wrapped up in themselves and their lives, that they would never give YOU support. That is true whether you have MS or any other problem you are going through in life. The best advice I can give anyone, is to NOT become one of those uncaring and uninterested people yourself.
Know that I love you dearheart, that's why I took the time to write this. I know that it probably makes some people mad to hear it, but I find it's the only reasoning I can use to keep fighting the fight and not loose my mind in the process.
We are here for you sweetheart....always. Keep that chin up and no matter how you are feeling when you get up in the morning, go into that bathroom, look at yourself in the mirror and tell yourself, that you are one important person that has alot to give to others....You are a fighter. And you ARE special...
Big Hugs and Much Love,
Heather
Please don't get mad at me, when I tell you Kathy; that you will probably experience people's ignorance as long as you are dealing with this serious ailment know as MS. When you do look for a support group to go to, please find one that is not full of gloom and doom. They are out there, by the dozens. If you find that a particular support group, does nothing but whine and complain at every meeting, you will soon find yourself more depressed and getting quite grumpy yourself. You need to surround yourself with people that have a more positive attitude and doesn't sweat the small stuff.
WE have to learn to understand other's and THEIR bad days too. When someone talks about their pain and their exhaustion, we must be polite to them and be sympathetic to them. They too are suffering, but in a different way. They want validation as much as we do. We have to remember that. If we don't get validation back from them, then that may be a "friend" that you really don't want to have around.
When my domestic partner complains about a horrible backache or leg cramps that wake him up in the middle of the night, I get up and try to comfort him. He then apologies that "he shouldn't complain, because with me having MS, he certainly doesn't suffer like I do." I tell him that he is wrong about that. We all have our own burdens, pain and obstacles to overcome. His pain, hurts! So I need to remember that, if I want HIM to be sympathetic, in my times of pain. Am I making any sense?
As the days, months and years go by (although I am praying for the cure in this decade) we have to concern ourselves with conserving our emotional energy on people that are upbeat. People that encourage you; not put you down when you cannot do something. There are people like that out there, everywhere.
I do feel also, that a therapist is a good option. It's knowing when to stop therapy and not depend on them to guide us through every step of our lives. I know people that have been in therapy for years and they are no further ahead that they were a year into their therapy. I have found that some therapists have a tendency to drag appointments out. Some of them will keep you on the appointment books, as long as you will keep coming back. Find one that will teach you lessons about living life with a disease; the ups and the downs, then get out into life and put those lessions to use. Get on with the job of living the best you can.
Is MS a super pain the butt? You bet it is. Find friends that want to share in your life, but don't be the person in that group, that continually complains about the pain you are in or the fatigue that you suffer from. Save that for the people here on the Forum that DO understand what you are going through or that "happy" support group, that be with you through the good days as well as the bad days. Always remember to give that encouragement back to others.
I hope you know, that I am not directing this post at you, specifically. I am saying it to myself and to everyone else that is dealing with this diseasae. It IS a b**ch and it's dern hard to live like this. The biggest thing we can do for ourselves and possibly others, is surround ourselves with people that have a zest for living. People that take those obstacles and do their best to turn them into positives.
Most of all, please do not let yourself get depressed from those people that "do NOT understand" what you are fighting, day in and day out. You could go out in public everyday and I guarantee, you will find people that are so wrapped up in themselves and their lives, that they would never give YOU support. That is true whether you have MS or any other problem you are going through in life. The best advice I can give anyone, is to NOT become one of those uncaring and uninterested people yourself.
Know that I love you dearheart, that's why I took the time to write this. I know that it probably makes some people mad to hear it, but I find it's the only reasoning I can use to keep fighting the fight and not loose my mind in the process.
We are here for you sweetheart....always. Keep that chin up and no matter how you are feeling when you get up in the morning, go into that bathroom, look at yourself in the mirror and tell yourself, that you are one important person that has alot to give to others....You are a fighter. And you ARE special...
Big Hugs and Much Love,
Heather
Hang in there! It takes time to get used to this cr@ppy diagnosis. No one, and I mean NO ONE, understands this unless they have it.
But that's what this forum is for, of course. Vent here, enjoy life elsewhere as much as you can.
Hugs,
ess
But that's what this forum is for, of course. Vent here, enjoy life elsewhere as much as you can.
Hugs,
ess
Thanks so much for your understanding, experiences, and suggestions. It's time for me to dig out that address for the local chapter of the NMSS, contact them, and figure out how to get to some support group meetings.
As for a one-on-one therapist, I decided to make an appointment with one I saw at a pain clinic a couple of times; figured that was a good place to start. Hmm, maybe people at a support group meeting would have some good ideas about local therapists, too.
You have really helped me feel better. I know I'm not alone in my experiences; it just feels like it sometimes!
Gg, thanks for the warm hugs and all.
WAF, I've tried Ritalin, and I can't tolerate it. It makes my heart race, increases my tremors, and gives me facial tics and I get real irritable.
Ren, you are awesome to organize a group for your area.
Tonya, I went through the denial thing a few times, too, as well as the others. I even hit acceptance, but I didn't stay put there. You understand the guilt thing, too. Thanks for sharing your emotional upheaval; sound very familiar.
D, your DH sound like a gem! I got the positive attitude stuff from the people at Avonex, too. Um, yes, I'm happy that I'm finally getting treatment, happy to have some answers.
Hugs to you all, and thanks again.
As for a one-on-one therapist, I decided to make an appointment with one I saw at a pain clinic a couple of times; figured that was a good place to start. Hmm, maybe people at a support group meeting would have some good ideas about local therapists, too.
You have really helped me feel better. I know I'm not alone in my experiences; it just feels like it sometimes!
Gg, thanks for the warm hugs and all.
WAF, I've tried Ritalin, and I can't tolerate it. It makes my heart race, increases my tremors, and gives me facial tics and I get real irritable.
Ren, you are awesome to organize a group for your area.
Tonya, I went through the denial thing a few times, too, as well as the others. I even hit acceptance, but I didn't stay put there. You understand the guilt thing, too. Thanks for sharing your emotional upheaval; sound very familiar.
D, your DH sound like a gem! I got the positive attitude stuff from the people at Avonex, too. Um, yes, I'm happy that I'm finally getting treatment, happy to have some answers.
Hugs to you all, and thanks again.
I hope that coming here to chat with us helps to relieve some of your negative feelings.
People just don't understand and there is really no way to make them understand.
Just know that you have to do the best for yourself and not worry about others. As I spend my life taking care of everyone else, that has been my hardest challange.
I get this one from the Drs all the time..."I can tell by your voice that you are very positive about all of this. Good for you!"
What is that?? Are we supposed to be curled up in a ball and crying all the time for people to believe we are not well?
My brother in law cracked his skull this summer being drunk and stupid. My DH and I drove 7 hrs and stayed in a hotel 3 nights while he was in the hospital, then brought him here for 3 weeks.
The stress of it drove me to by a cane and get an at home solumedrol treatment. So I am sitting there with an IV sticking out of my arm, crippling myself for this idiot and all he can do is moan and complain about how horrible he feels.
My DH finally went off on him and told him that he better shut up or he could make his injuries permanant like mine. I love him :)
People just have not got a clue.
Know you are sick and it is ok to do what you have to in order to stay somewhat healthy.
Hugs
D
People just don't understand and there is really no way to make them understand.
Just know that you have to do the best for yourself and not worry about others. As I spend my life taking care of everyone else, that has been my hardest challange.
I get this one from the Drs all the time..."I can tell by your voice that you are very positive about all of this. Good for you!"
What is that?? Are we supposed to be curled up in a ball and crying all the time for people to believe we are not well?
My brother in law cracked his skull this summer being drunk and stupid. My DH and I drove 7 hrs and stayed in a hotel 3 nights while he was in the hospital, then brought him here for 3 weeks.
The stress of it drove me to by a cane and get an at home solumedrol treatment. So I am sitting there with an IV sticking out of my arm, crippling myself for this idiot and all he can do is moan and complain about how horrible he feels.
My DH finally went off on him and told him that he better shut up or he could make his injuries permanant like mine. I love him :)
People just have not got a clue.
Know you are sick and it is ok to do what you have to in order to stay somewhat healthy.
Hugs
D
Hey there :)
With me being a newly diagnosed MSer myself........I know exactly what you are talking about. For me though, I have been in crazy "Emotional City" since I saw the dx on paper the day I was checking out and making my 4 week out appt., It was just So -Real to me from the very begininng.
I have certainly been using my fare share of the "stages" of acceptance. I Was VERY anxious at first, then a bit depressed, then anxious again, then denial, and I am still sliding up and down that scale.
I too have joined a local support group also sponsered by the NMSS. It's nice however, I am the youngest in the group and most of them have had MS for quite sometime to the point that they are all either in scooters, walkers, or crutches (w/ the brace part that goes on the top of their arm) and leg braces. All of them are very genuine and sincere.
And like you, I have plans to speak w/ someone one on one so that I can unload (if you will) on them instead of my poor hubby. People say they understand and perhaps even try to?? But.........they don't. So when ANYONE asks me how I am doing.....I tell them i'm OK! Like you also, the fatigue that I am trying to deal with is in sane!!!
I am trying to get over feeling guilty about sleeping as it doesn't help me to feel the guilt of something I have no control over.
Sorry this got so long. I guess I saw your post and wanted to tell my emotions to someone who was freshly in my shoes.
I hope your insurance will approve your meds soon. My only advice I have to myself and to others is to do what you can. Then if you need to rest then rest. If you get back to it then do so and if not it will be there tomorrow :)
Be Well,
~Tonya
ps, againl if the verbage and spelling are screwed up please over look it as my cognition (speaking, remembering, spelling) is the other deficite (sp) I have besides the fatigue and balance/weak leg issues.
With me being a newly diagnosed MSer myself........I know exactly what you are talking about. For me though, I have been in crazy "Emotional City" since I saw the dx on paper the day I was checking out and making my 4 week out appt., It was just So -Real to me from the very begininng.
I have certainly been using my fare share of the "stages" of acceptance. I Was VERY anxious at first, then a bit depressed, then anxious again, then denial, and I am still sliding up and down that scale.
I too have joined a local support group also sponsered by the NMSS. It's nice however, I am the youngest in the group and most of them have had MS for quite sometime to the point that they are all either in scooters, walkers, or crutches (w/ the brace part that goes on the top of their arm) and leg braces. All of them are very genuine and sincere.
And like you, I have plans to speak w/ someone one on one so that I can unload (if you will) on them instead of my poor hubby. People say they understand and perhaps even try to?? But.........they don't. So when ANYONE asks me how I am doing.....I tell them i'm OK! Like you also, the fatigue that I am trying to deal with is in sane!!!
I am trying to get over feeling guilty about sleeping as it doesn't help me to feel the guilt of something I have no control over.
Sorry this got so long. I guess I saw your post and wanted to tell my emotions to someone who was freshly in my shoes.
I hope your insurance will approve your meds soon. My only advice I have to myself and to others is to do what you can. Then if you need to rest then rest. If you get back to it then do so and if not it will be there tomorrow :)
Be Well,
~Tonya
ps, againl if the verbage and spelling are screwed up please over look it as my cognition (speaking, remembering, spelling) is the other deficite (sp) I have besides the fatigue and balance/weak leg issues.
I have no local NMSS group, unless you count a one hour plus drive local. My plan, to keep myself occupied mentally, is to start a group on the south side of the city where I live. The Regional Office sent me materials and told me there have been several requests/inquires for my area.
In the meantime, I found a counselor that deals in long term illness. It's where I go when no body "gets" how lousy I feel. I vent, she listens and redirects when necessary. All in all a good fit. Granted she doesn't have MS but she does have several other clients who do so she is familiar with the complaints of fatigue and knows it goes beyond normal fatigue.
Don't know if I was any help but I do know how you feel.
Hugs,
Ren
In the meantime, I found a counselor that deals in long term illness. It's where I go when no body "gets" how lousy I feel. I vent, she listens and redirects when necessary. All in all a good fit. Granted she doesn't have MS but she does have several other clients who do so she is familiar with the complaints of fatigue and knows it goes beyond normal fatigue.
Don't know if I was any help but I do know how you feel.
Hugs,
Ren
I second the motion to join a local support group!! That's a MUST!! I meant to do that even without a diagnosis - but I didn't have the energy to go.
Can sure relate to what you're saying about not being able to do things like you used to and feeling very limited. It's hard for others without a neuro condition to understand what we are really going through. This brand of fatigue is unreal!!!
Some insurance providers who don't approve Provigil may approve Ritalin instead. I'm not sure if that would help (it does have some bad press). But also, be careful with Provigil. I've found that it gives me scary heart symptoms and leaves me with even worse fatigue than before when it wears off. ALA has been helpful to some with MS. If you're too tired to do your Christmas routine, then just don't do it. Take care of yourself first - get enough rest no matter what!! I find if I don't I end up in the ER!!
I feel like I'm stuffed with cotton much of the time - weird feeling!!
Hugs to you and Fluffy!
WAF
Can sure relate to what you're saying about not being able to do things like you used to and feeling very limited. It's hard for others without a neuro condition to understand what we are really going through. This brand of fatigue is unreal!!!
Some insurance providers who don't approve Provigil may approve Ritalin instead. I'm not sure if that would help (it does have some bad press). But also, be careful with Provigil. I've found that it gives me scary heart symptoms and leaves me with even worse fatigue than before when it wears off. ALA has been helpful to some with MS. If you're too tired to do your Christmas routine, then just don't do it. Take care of yourself first - get enough rest no matter what!! I find if I don't I end up in the ER!!
I feel like I'm stuffed with cotton much of the time - weird feeling!!
Hugs to you and Fluffy!
WAF
I get that from folks all the time. I keep in mind they have absolutely NO CLUE what's happening to me.
I started attending a local MS support group, held the 2nd and 4th Monday of the month. It's sponsored by the NMSS. Maybe you have one up there. I can't imagine they wouldn't. We have two groups on the SF peninsula - 40 miles of suburbia by the bay (I'm in the mountains west of the hub-bub). It's so nice to talk with folks who understand all the zaps, zings, etc., without getting "you think YOUR day was hard..."
Warm Hugs,
Guitar_grrrl
I started attending a local MS support group, held the 2nd and 4th Monday of the month. It's sponsored by the NMSS. Maybe you have one up there. I can't imagine they wouldn't. We have two groups on the SF peninsula - 40 miles of suburbia by the bay (I'm in the mountains west of the hub-bub). It's so nice to talk with folks who understand all the zaps, zings, etc., without getting "you think YOUR day was hard..."
Warm Hugs,
Guitar_grrrl
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