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How do you deal with feeling down?
I can't but notice you all seem so brave in dealing with what mother nature has dealt you. I know we all cover our true feelings at times but I just wondered how you cheer yourself through your darker days? I'm feeling a bit down recently because I've always been such an active person but my legs are feeling really weak & wobbly and tingle constantly. I'm hoping it will ease off soon but yesterday I decided to walk home from town (its a brisk 15 min walk) and I started to feel a bit panicky because I felt so wobbly and my eyes had fogged right over. I've been in tears on/off over the weekend. It started because I couldn't tell what colour my jumper was and then I read that people with MS live on average for 30 years after the disease onset. Logic tells me none of us know how long we've got but I can't shake the feeling of panic and also I keep getting so worried because all this only started 6 months ago but I've had no real break in symptoms yet. I should be starting dmd's very soon (I've chosen copaxone) so fingers crossed, that will help. Sorry if this is a bit depressing to read but I just needed to vent and to speak to people who might understand. Thanks!
Zoe,
For me, when everything first started happening I was feeling sorry for myself and getting down a lot. I had to pull myself out of those funks. I did it by positive self talk and family and friends.
It is a hard disease to live with at times but then there are time where it isn't so bad. I cherish the times it isn't bad and live for the day instead of what tomorrow may bring. We never know what tomorrow will bring so living for the day/moment is the way I go.
I also look at it as it could always be worse, there are people out there that are suffering more than I am. I wouldn't wish that on anyone but it could always be worse so I am thankful that I am where I am.
I get down sometimes, especially when I can't do things like I use to but I have learned to adapt to my new "normal". It was hard not being able to do things outdoors when it is real hot out, especially with my family but I have learned that there are things I can do in the house or go to the movies or do something inside somewhere, that way I stay cool and my symptoms stay at bay.
It is hard but please if you think you need extra help, seek it out. A therapist is always willing to listen and they have the training to help with those kinds of feelings.
I have my good days and my bad days. Before I use to walk fast and everyone commented on how fast I walked and I could walk for a long long time. Now I walk slower and I can't walk very long without taking a break because of my leg but I don't let that stop me. I avoid the heat so my symptoms don't get worse. I still do things that sometimes push me over the edge and regret it later but it all works out in the end.
I hope what I am saying makes sense to you. I am just trying to say that we are all here for you and that learning to adapt to what you have been delt can be difficult but it is also something you can overcome.
Oh and I would like to know where you learned the 30 year number too. With the DMD's now I am pretty sure the life span is the same as it is with someone without MS.
Take Care,
Paula
For me, when everything first started happening I was feeling sorry for myself and getting down a lot. I had to pull myself out of those funks. I did it by positive self talk and family and friends.
It is a hard disease to live with at times but then there are time where it isn't so bad. I cherish the times it isn't bad and live for the day instead of what tomorrow may bring. We never know what tomorrow will bring so living for the day/moment is the way I go.
I also look at it as it could always be worse, there are people out there that are suffering more than I am. I wouldn't wish that on anyone but it could always be worse so I am thankful that I am where I am.
I get down sometimes, especially when I can't do things like I use to but I have learned to adapt to my new "normal". It was hard not being able to do things outdoors when it is real hot out, especially with my family but I have learned that there are things I can do in the house or go to the movies or do something inside somewhere, that way I stay cool and my symptoms stay at bay.
It is hard but please if you think you need extra help, seek it out. A therapist is always willing to listen and they have the training to help with those kinds of feelings.
I have my good days and my bad days. Before I use to walk fast and everyone commented on how fast I walked and I could walk for a long long time. Now I walk slower and I can't walk very long without taking a break because of my leg but I don't let that stop me. I avoid the heat so my symptoms don't get worse. I still do things that sometimes push me over the edge and regret it later but it all works out in the end.
I hope what I am saying makes sense to you. I am just trying to say that we are all here for you and that learning to adapt to what you have been delt can be difficult but it is also something you can overcome.
Oh and I would like to know where you learned the 30 year number too. With the DMD's now I am pretty sure the life span is the same as it is with someone without MS.
Take Care,
Paula
Hi Zoe,
I've read everyone's comments, and I would think that alone would help you feel better. I so understand about being down in the dumps over MS or anything else in your life you can't control. I've been slowly coming to grips with the fact that I"m going to have to come up with my " new normal" The frustration is not knowing what that new normal is or is going to be. That's what is hard to come to grips with. I try to be positive, but now and then I just give myself permission to have a personal pity party. Have a glass of wine, watch a sappy sad movie and cry my eyes out. The trick is not letting that get the best of you. Having friends or family you can vent to helps soooo much. I've met some very compassionate people on this forum, and I've only been on here for 2 days. I thank everyone who's made comments to me, but also the comments made to others. As it seems we're all in one way or another in that same situation, it just helps to know you're not alone in that situation.....So, feel free Zoe, or anyone else who reads this post to send me a note if YOU need to vent or talk about any issues. I may not be able to help much, but I am surely willing to lend an ear!
Hope you feel better Zoe!
:)
Rainey
I've read everyone's comments, and I would think that alone would help you feel better. I so understand about being down in the dumps over MS or anything else in your life you can't control. I've been slowly coming to grips with the fact that I"m going to have to come up with my " new normal" The frustration is not knowing what that new normal is or is going to be. That's what is hard to come to grips with. I try to be positive, but now and then I just give myself permission to have a personal pity party. Have a glass of wine, watch a sappy sad movie and cry my eyes out. The trick is not letting that get the best of you. Having friends or family you can vent to helps soooo much. I've met some very compassionate people on this forum, and I've only been on here for 2 days. I thank everyone who's made comments to me, but also the comments made to others. As it seems we're all in one way or another in that same situation, it just helps to know you're not alone in that situation.....So, feel free Zoe, or anyone else who reads this post to send me a note if YOU need to vent or talk about any issues. I may not be able to help much, but I am surely willing to lend an ear!
Hope you feel better Zoe!
:)
Rainey
My symptoms started in the legs.
A year later I have overall weakness and muscle spasms that hinder my walking a great deal. I use a wheelchair outdoors.
Mine isn't the typical progression though.
So don't worry about losing your mobility so quickly.
Everyone's ms is different.
I am always making the mistake of comparing myself to others and that only makes me crazy.
I Hqve never had any optical issues though.
About a month ago my neuro gave me a prescription for a drug called Provigil. It has been wonderful helping with my fatigue.
I take one at 8AM and another at 12AM.
It does the trick for me.
Hope that helps.
Kerri
A year later I have overall weakness and muscle spasms that hinder my walking a great deal. I use a wheelchair outdoors.
Mine isn't the typical progression though.
So don't worry about losing your mobility so quickly.
Everyone's ms is different.
I am always making the mistake of comparing myself to others and that only makes me crazy.
I Hqve never had any optical issues though.
About a month ago my neuro gave me a prescription for a drug called Provigil. It has been wonderful helping with my fatigue.
I take one at 8AM and another at 12AM.
It does the trick for me.
Hope that helps.
Kerri
Thanks Kerri, this forum is such a great help, isn't it? I think we're lucky to have kids we can focus on but it is hard when you feel so exhausted! I've never known such exhaustion. I seem to hit a wall of tiredness in the afternoons which magically lifts in the evening. Are most of your symptoms with your legs? I started with ON and it just hasn't let up ever since really but it does 100% help knowing I'm not alone.
All the best, Zoe x
All the best, Zoe x
I identify with you so much.
For the last two weeks I thought I was dying of ALS based on my professional medical opinion and misconstruing what everyone around me was saying.
I am not a medical professionl. I was just a little nutso for a couple of weeks.
What brought me out of it was someone replying to my frantic post with a good dose of truth and compassion.
Try not to beat yourself up over feeling down.
I agree with everyone else not that I have lived it for a while.
You Hqve dealt with more than your share and just dealing with your loss is something i cannot even imagine.
So I think you are way stronger than you think.
There are some days I hobble around my house in my pajamas and change into normal clothes right before my son arrives home from school.
I have four children and when I am really down I try to focus on them and how beautiful they are. Being a mom is tough.
Especially when you are sick. But I think my children are the gift that keep me out of the hole.
I hope you can get through this and come out of it realizing that you are not alone.
Kerri
For the last two weeks I thought I was dying of ALS based on my professional medical opinion and misconstruing what everyone around me was saying.
I am not a medical professionl. I was just a little nutso for a couple of weeks.
What brought me out of it was someone replying to my frantic post with a good dose of truth and compassion.
Try not to beat yourself up over feeling down.
I agree with everyone else not that I have lived it for a while.
You Hqve dealt with more than your share and just dealing with your loss is something i cannot even imagine.
So I think you are way stronger than you think.
There are some days I hobble around my house in my pajamas and change into normal clothes right before my son arrives home from school.
I have four children and when I am really down I try to focus on them and how beautiful they are. Being a mom is tough.
Especially when you are sick. But I think my children are the gift that keep me out of the hole.
I hope you can get through this and come out of it realizing that you are not alone.
Kerri
Thank you very, very much everybody for taking the time to reply.
I think the MS was just the icing on the cake for what has been a pretty tough couple of years including the stillbirth of our son and death of my dad followed by the birth of our son. I barely registered the idea of MS as my mind was still digesting everything else that had happened. I think it's just sinking in more and I will just have to learn to live slightly differently, just the same as everybody else has to. I think the leg issues tipped me over the edge but its eased a bit today so I'm feeling cheerier! It wouldn't be so bad if I could just sit and read or something but the eye issues spoil that. Luckily I do have two very entertaining kids to keep me smiling!
Thanks again.
I think the MS was just the icing on the cake for what has been a pretty tough couple of years including the stillbirth of our son and death of my dad followed by the birth of our son. I barely registered the idea of MS as my mind was still digesting everything else that had happened. I think it's just sinking in more and I will just have to learn to live slightly differently, just the same as everybody else has to. I think the leg issues tipped me over the edge but its eased a bit today so I'm feeling cheerier! It wouldn't be so bad if I could just sit and read or something but the eye issues spoil that. Luckily I do have two very entertaining kids to keep me smiling!
Thanks again.
I bought the PBS Qi Gong series. I can usually do it even on days that I feel like my legs are overly wobbly. I think the peaceful music and deep breathing help physically and mentally. There are days I can give it 100% and days I give it a little less effort, but it always helps. I feel like I'm doing something for me. We all have those down days so don't feel alone there. The important thing is that you try to pick yourself up and keep going. A happier mood is just around the corner!!
I have found that throwing myself into voulenteering in a MOPS group helps. I try to focus on what I can still do for others. I have a good friend with hoshimoto's (sp?). We spend time together talking on the phone and we are both on the leadership team for the MOPS group. When one of us has a physical limitation, the other tries to help pick up the slack. We both have 3 children 7 and under.
So, I just want you to consider finding a group of people to associate with. I find that I enjoy church groups and civic groups better than MS support groups. You would be suprised how many people out there are functioning with chronic disease. Focus on the positive. When the negative rises up to bight you, call on a friend that truly loves you. (You can always come "talk" to us!)
Best to you!
Ann
So, I just want you to consider finding a group of people to associate with. I find that I enjoy church groups and civic groups better than MS support groups. You would be suprised how many people out there are functioning with chronic disease. Focus on the positive. When the negative rises up to bight you, call on a friend that truly loves you. (You can always come "talk" to us!)
Best to you!
Ann
COMMUNITY LEADER
I couldn't really agree more with what everyone has said so far, its so true that chronic anything can be really difficult to handle even with all thats available to help but one thing for sure though and thats someones going to say that it really comes down to (blasted) 'acceptance' and couldn't you just scream at that dam term, like its an easy thing to do, sooooo so not true, it can take a heck of a lot to get there.
I'm actually well aware that i'm an odd ball when it comes to the normally expected emotional responses and I really do put it down to growing up with a mum with bipolar. I sort of do have a different perspective than the norm, which has helped me deal with some pretty heavy unfair for ever things. For me my reaction is calm focus or over the top humor, some think thats my protective bubble but its not really like that at all.
It's out side of my control, the more dire the circumstance the more I will giggle or the calmer i become, I just dont know which. The more i learn about the brain though the more i've come to recognise that brain lesions can be the route cause of a persons emotional responses. Laughter or tears, calm or anger its all part of the same thing, polar opposites but if lesions are in play it still basically comes down to being the same.
Medications can only do so much, its not a quick fix, its just the begining really and what works for you maybe totally unique because thats what you are. Talk therapy helps as does painting/writing, gardening, laughter, hobbies, singing, shopping, physical activities, volunteering etc and combinations of, all get you temperarily out of negative head space but none of it can really keep you from spiralling out of control once your in a downward slump. Though I do really think it all helps to keep it from getting a hold on you.
So what do you want/like/feel you can do to bring some sunshine into your world?
HUGS.........JJ
PS please be kind to your self!!
I'm actually well aware that i'm an odd ball when it comes to the normally expected emotional responses and I really do put it down to growing up with a mum with bipolar. I sort of do have a different perspective than the norm, which has helped me deal with some pretty heavy unfair for ever things. For me my reaction is calm focus or over the top humor, some think thats my protective bubble but its not really like that at all.
It's out side of my control, the more dire the circumstance the more I will giggle or the calmer i become, I just dont know which. The more i learn about the brain though the more i've come to recognise that brain lesions can be the route cause of a persons emotional responses. Laughter or tears, calm or anger its all part of the same thing, polar opposites but if lesions are in play it still basically comes down to being the same.
Medications can only do so much, its not a quick fix, its just the begining really and what works for you maybe totally unique because thats what you are. Talk therapy helps as does painting/writing, gardening, laughter, hobbies, singing, shopping, physical activities, volunteering etc and combinations of, all get you temperarily out of negative head space but none of it can really keep you from spiralling out of control once your in a downward slump. Though I do really think it all helps to keep it from getting a hold on you.
So what do you want/like/feel you can do to bring some sunshine into your world?
HUGS.........JJ
PS please be kind to your self!!
I have gotten great suggestions on this forum to help my son Jordan. Sometimes he was angry and sometimes sad at all the changes and not liking how much his life has changed. We are still in Limboland with "highly suspected MS" but he has every symptom. Some suggested limiting the time focused on his symptoms (which is hard when they change and are always there) but we did and it really did help. Others encouraged laughter and joking (we watch a lot of funny movies and making jokes) so we did and it really did help. I tried to focus on things he could do and not so much on things he couldn't-which was another suggestion. It really did help! It wasn't overnight but over the past few months I have seen a huge improvement. For myself, as a mom, it is also so hard to watch. I cried a lot and was angry. For me it was medication that has helped. I know a few people that were diagnosed several years back (20-40+) and they are still doing ok. We have been told it is different in everyone but shouldn't make much difference as far as life span. I know people don't like to talk about death and dying but I have had friends and family with cancer, auto accidents, on-the-job accidents, etc... and I guess you never know what you are dealt. Live, laugh and love is truly a great saying. I am trying to teach Jordan that "THIS THING" may have have changed his life but it hasn't taken it. You just need to get to your place and I hope it comes soon! Everyone has a different journey to get to that place. Wishing you the best! Many positive thoughts your way!
Zoe,
For me I was devastated by the MS diagnosis even though I had MS since early childhood and the Doctors had not put it all together. It took me several years to really come to terms with it. In the mean time I got a counselor who deals with Chronic illness. We do self hypnosis. I work on distracting myself. I concentrate on what I can do and not what I can't.
I find I can do more than I thought when I have a good reason to do something. I joined local support groups. I call or visit others in my area with MS. We have four ladies in my neighborhood alone. Some can't get out so we go to them. I call people with or with out MS and ask how they are doing. I joined the local NMSS and do a lot of volunteer work. This gave me purpose.
I started therapeutic horseback riding and training a service dog. I paint pictures. When I am really sick I read or listen to books on tape.
My depression is not just situational sometimes it is my MS and my brain not working right. Some of it came from a great guilt I had from no longer being productive. I got rid of the guilt when I realized that harmed my family. I needed to move on it is hard living with someone who is beating themselves up.
For me the first year was a roller coaster of trying to find balance with the depression. Through therapy and my new activities I have pulled myself out of it am getting better and better. I am making new friends all the time.
I have new friends at the horse barn. I have new friends through the dog training. New friends through MS.
I am physically not the person I was but I am emotionally better than I ever have been.
Alex
For me I was devastated by the MS diagnosis even though I had MS since early childhood and the Doctors had not put it all together. It took me several years to really come to terms with it. In the mean time I got a counselor who deals with Chronic illness. We do self hypnosis. I work on distracting myself. I concentrate on what I can do and not what I can't.
I find I can do more than I thought when I have a good reason to do something. I joined local support groups. I call or visit others in my area with MS. We have four ladies in my neighborhood alone. Some can't get out so we go to them. I call people with or with out MS and ask how they are doing. I joined the local NMSS and do a lot of volunteer work. This gave me purpose.
I started therapeutic horseback riding and training a service dog. I paint pictures. When I am really sick I read or listen to books on tape.
My depression is not just situational sometimes it is my MS and my brain not working right. Some of it came from a great guilt I had from no longer being productive. I got rid of the guilt when I realized that harmed my family. I needed to move on it is hard living with someone who is beating themselves up.
For me the first year was a roller coaster of trying to find balance with the depression. Through therapy and my new activities I have pulled myself out of it am getting better and better. I am making new friends all the time.
I have new friends at the horse barn. I have new friends through the dog training. New friends through MS.
I am physically not the person I was but I am emotionally better than I ever have been.
Alex
I am on antidepressants too, and I also still have times when the limitations get to me. It stinks. Sometimes if my legs are too bad for me to walk or exercise, I'll sit and read instead. I love to read and don't often make time for it, so that makes me feel like I am getting an opportunity to do something I enjoy - like I'm treating myself. Do you have a similar hobby, or something you've been wanting to try that can be done sitting down? It's not a cure-all for feeling down about the changes, but it helps my perspective sometimes.
Hope you feel better soon.
Hope you feel better soon.
Thanks. Well, I've been on antidepressants for years so that side of things is nothing new for me. It's more that the reality of MS is starting to sink in and its been making me quite snappy and unpleasant. I guess I'd been thinking RRMS was not so bad as the symptoms come and go but as you know, its not quite that simple! I've accepted the vision loss without much trouble but the weak, wobbly legs drive me nuts and the MS nurse advised me to try and pace myself through stuff like housework and I'm finding that irritating!
Hi Zoe,
I 2nd Lu - talk to the doctor if you can't shake the blues, or worse depression. I find I've been in and out of it from time-to-time over the years. Sometimes w/a cause, sometimes not.... Sometimes worse than others, etc.
During some of the bad times I look back on and wish I talked to the doctor to get some medicine. But, thankfully it passed.
If you are experiencing temporary down in the dumps kind of days, then make sure you are getting some sunshine (you need that vitamin D) .......And, don't beat yourself up for not being able to move those legs as well as in the past. Time will help you adjust too.
I find just accepting the slowness of my body, and mind (the glitches too)lifts the add-on burden I often give myself.
I 2nd Lu - talk to the doctor if you can't shake the blues, or worse depression. I find I've been in and out of it from time-to-time over the years. Sometimes w/a cause, sometimes not.... Sometimes worse than others, etc.
During some of the bad times I look back on and wish I talked to the doctor to get some medicine. But, thankfully it passed.
If you are experiencing temporary down in the dumps kind of days, then make sure you are getting some sunshine (you need that vitamin D) .......And, don't beat yourself up for not being able to move those legs as well as in the past. Time will help you adjust too.
I find just accepting the slowness of my body, and mind (the glitches too)lifts the add-on burden I often give myself.
Zoe, nothing depressing about this because it is very common. Depression is a well recognized problem with ms. It can be organic or situational , but either way there can be treatment for it. Don't let yourself get so blue that it is hard. To shake.
Living with a chronic disease for life is difficult land will really test you. I'm curious as to where you found that 30 year comment? It used to be they said Msers live 7 yrs less than normal folks, but even that number has gotten Bette with all the Dmds available.
Please ask your doctor for help if these feelings linger long.
Hugs to you, Lu
Living with a chronic disease for life is difficult land will really test you. I'm curious as to where you found that 30 year comment? It used to be they said Msers live 7 yrs less than normal folks, but even that number has gotten Bette with all the Dmds available.
Please ask your doctor for help if these feelings linger long.
Hugs to you, Lu
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