Aa
Anyone With MS Homebound ??'s
I was referred to the MS Forums from where i first posted in the Amxiety/Depression Forums from a very friendly member ''greenlydia''.. Just wondering if anyone with the Chronic Progressive form who is/has been housebound and wondering how you deal with it. I'm 44 and have worked since i was 17 when i joined the Navy in 1980 and loved to stay busy as a tradesman and also recreate all thruout my life (wieghtlifting, racquetball, swimming etc..) and now since dec i have been home since my paralysed feet/ankles keep me from working and getting out much. Friends i had have disapeared and family is not invlved in my life. I did get approved for SSDI so i'm grateful but just having a hard time at home alot.
I do go to a city park nearby with my cane and hang out there but i'm just getting bored and lonely and are any others out there and have any thoughts good or bad as it's good just to gab about it.
Thanks so much !!
harry
I do go to a city park nearby with my cane and hang out there but i'm just getting bored and lonely and are any others out there and have any thoughts good or bad as it's good just to gab about it.
Thanks so much !!
harry
Thanks Sue as that gave me all the info i was looking for.as Medicare is the federal Gov. program and Medicaid is the state level. I found the ''Income Support Division'' office here in Albuquerque to go and apply as being on SSD is an qualification.
Thankyou so much Sue !!!!!
harry...
Thankyou so much Sue !!!!!
harry...
Here's the site for Social Security issues. If you can't find the answer there, I would check with your local Social Security office about Medicaid/Medicare.
http://ssa.gov/
Sue
http://ssa.gov/
Sue
Hi Fluffysmom and thanks for the post as i enjoyed reading it and thanks for the thoughts and insights.
Take care !!
harry...
Take care !!
harry...
Hi Quixotic and thanks for the post. I have a question for ya. You said you were approved for SSD as was i but i won't start recieving my first check until aug, 27th. Do you know how either Medicare or Medicade works?? Since i have no heath insurance does Social Security provide any or do you have any thoughts on that??
Thanks again for posting and be well !!
harry
Thanks again for posting and be well !!
harry
Hi, I'm adding my welcome to all the rest. It took me a while to get to the bottom so I could take my turn! This forum is the greatest place, I'm glad that greenlydia sent you our way.
I live on SSD and do just fine. I have one cat; he's nearly 14 and has developed some health problems, so he's a bit more expensive than your average pet, but he has helped me through some really rough times over the years. If you get a pet, remember to factor in routine vet care like vaccines and such. I got pet insurance when Fluffy turned 8, which helped because by then he was needing teeth cleanings. It cost around $30.00 a month.
I used to climb mountains, too, once upon a time. Now I'm down to walking (which can be painful), light weights, and water aerobics.
You might check into community centers for water exercise classes. I go to 24 Hour Fitness, which would be expensive if a friend hadn't bought me in 9 years ago and locked me in to a monthly rate of $16.58. There are a wide range of people that go to water exercise classes, from people recovering from strokes or heart attacks, to young people that love water and work really hard. That's the great thing about it, you can work as hard as you are able by regulating how hard you resist the water.
Oh, and some of the instructors are really hot, in case you were interested. There is one instructor that when she teaches, the jacuzzi, sauna, and steam room are always full of men! :o)
I actually met my best friend online; she needed someone to do some research for her. When she moved up to my area to be closer to her aging parents, we became fast friends. She's divorced, and has lots of timeshares, so I get to go along on wonderful trips that cost me very little.
I don't drive much because of fatigue and dizziness; I assess my safety level before I get in my car. It saves me a heck of a lot on gas, which is a good thing in this economic environment.
If you're not up to or can't afford driving, you can research low-cost transports. I live in Portland, and they have Tri-Met lift buses that you can call in advance for to take you just about anywhere, and the cost is minimal. I have a friend in a wheelchair that takes the lift up to the yearly Safeway LPGA Golf Tournament, and picks her up afterwards. Safeway has this huge tent where they hand out samples, so she enjoys that, and then motors down to the flat parts of the course and follows her favorite golfers. She even chatted with the mom of her favorite, and the player recognizes her each year. She even got an autographed picture.
OK, I've got an autographed picture of me with Juli Inkster. I never paid attention to golf until I had a friend that volunteered as a walking scorer, and I found out it is really enjoyable to watch.
I make jewelry when my tremors aren't acting up, and it totally absorbs my attention. If you can think of a hobby you might enjoy, it could fill up time and you could produce cool stuff, like gifts for the new friends you're going to make to replace the thoughtless ones that disappeared out of your world.
I hope you like to read, sorry about rambling on. Welcome once again!
Kathy
I live on SSD and do just fine. I have one cat; he's nearly 14 and has developed some health problems, so he's a bit more expensive than your average pet, but he has helped me through some really rough times over the years. If you get a pet, remember to factor in routine vet care like vaccines and such. I got pet insurance when Fluffy turned 8, which helped because by then he was needing teeth cleanings. It cost around $30.00 a month.
I used to climb mountains, too, once upon a time. Now I'm down to walking (which can be painful), light weights, and water aerobics.
You might check into community centers for water exercise classes. I go to 24 Hour Fitness, which would be expensive if a friend hadn't bought me in 9 years ago and locked me in to a monthly rate of $16.58. There are a wide range of people that go to water exercise classes, from people recovering from strokes or heart attacks, to young people that love water and work really hard. That's the great thing about it, you can work as hard as you are able by regulating how hard you resist the water.
Oh, and some of the instructors are really hot, in case you were interested. There is one instructor that when she teaches, the jacuzzi, sauna, and steam room are always full of men! :o)
I actually met my best friend online; she needed someone to do some research for her. When she moved up to my area to be closer to her aging parents, we became fast friends. She's divorced, and has lots of timeshares, so I get to go along on wonderful trips that cost me very little.
I don't drive much because of fatigue and dizziness; I assess my safety level before I get in my car. It saves me a heck of a lot on gas, which is a good thing in this economic environment.
If you're not up to or can't afford driving, you can research low-cost transports. I live in Portland, and they have Tri-Met lift buses that you can call in advance for to take you just about anywhere, and the cost is minimal. I have a friend in a wheelchair that takes the lift up to the yearly Safeway LPGA Golf Tournament, and picks her up afterwards. Safeway has this huge tent where they hand out samples, so she enjoys that, and then motors down to the flat parts of the course and follows her favorite golfers. She even chatted with the mom of her favorite, and the player recognizes her each year. She even got an autographed picture.
OK, I've got an autographed picture of me with Juli Inkster. I never paid attention to golf until I had a friend that volunteered as a walking scorer, and I found out it is really enjoyable to watch.
I make jewelry when my tremors aren't acting up, and it totally absorbs my attention. If you can think of a hobby you might enjoy, it could fill up time and you could produce cool stuff, like gifts for the new friends you're going to make to replace the thoughtless ones that disappeared out of your world.
I hope you like to read, sorry about rambling on. Welcome once again!
Kathy
Hi, There! Wow, what a lively discussion you brought to us with your questions! I didn't know all this stuff existed either. WELCOME to our forum! We really do have a great group full of ideas and experiences! I am Quix, the local medical expert. I was a pediatrician in my former life - before becoming pretty much house bound. So, mostly for my recreation I play with my forum here and write up informational stuff about the World of MS. I'm sorry this disease rose up and slapped you down. The first year is definitely the hardest as you try to wrap your mind around what is happening.
I have been pretty much homebound for the last three years. Mine is due to severe reactions to the motion of the car. And recently with being unable to lift my foot to the brake because my hip flexors are weak. I also have foot drop, but just on one side. They made me a lightweight plastic brace, called an AFO, that keeps my toes up and allows me to walk so much better.
One of our members, T-Lynn (screen name young at heart) wears braces on both legs and gets around fairly well.
Have you been in physical therapy? That can be so useful in retraining your gait. It also gets you out and talking to people. Also, if there is any difficulty in lifting your foot to the brake while driving, you can have your car adapted to have hand brakes. That's one of my next chores, because many days I can't lift my right leg that far.
I also qualified easily - in my case - for SSD. I gathered up all of my medical records from the prior year and sent them with my application. I sent them two cases of records. I was approved within 4 weeks. Since you have a diagnosis that is on their list of disabling illnesses, it should be easier for you.
Well, I also have four cats, and a sister that will run any errand I wish. She's a gardner and handles the yard, too so I am very lucky, but I only leave the house 3 or 4 times a month. Just to make you smile, you can go to my profile and click on it. The first photo I have up is of my demented little Teddy cat peeing in the toilet.
Glad to have you among us!
Quix
I have been pretty much homebound for the last three years. Mine is due to severe reactions to the motion of the car. And recently with being unable to lift my foot to the brake because my hip flexors are weak. I also have foot drop, but just on one side. They made me a lightweight plastic brace, called an AFO, that keeps my toes up and allows me to walk so much better.
One of our members, T-Lynn (screen name young at heart) wears braces on both legs and gets around fairly well.
Have you been in physical therapy? That can be so useful in retraining your gait. It also gets you out and talking to people. Also, if there is any difficulty in lifting your foot to the brake while driving, you can have your car adapted to have hand brakes. That's one of my next chores, because many days I can't lift my right leg that far.
I also qualified easily - in my case - for SSD. I gathered up all of my medical records from the prior year and sent them with my application. I sent them two cases of records. I was approved within 4 weeks. Since you have a diagnosis that is on their list of disabling illnesses, it should be easier for you.
Well, I also have four cats, and a sister that will run any errand I wish. She's a gardner and handles the yard, too so I am very lucky, but I only leave the house 3 or 4 times a month. Just to make you smile, you can go to my profile and click on it. The first photo I have up is of my demented little Teddy cat peeing in the toilet.
Glad to have you among us!
Quix
Thanks for the info on your cats and the costs to have them as that sounds very good. I grew up with Black Labs and cats as a kid so i'll explore in the near future about acquiring one. Yes i'm renting but i may relocate as the rent is too high for me now so i'm searching different places in albuquerque and may go to southern new mexico or arizona where it's cheaper to rent and live.
That really sucks about your spouse doing that as it makes me wonder about the marriage vowel ''til death do us apart'' ??? Especially when you need support the most and people bail out as it really just sucks......
I checked out firefox and played the Tennis game as that was cool as there are many others so again thanks as i appreciate the game sites...Sue.
I do appreciate the nice offer of gabbing whenever i need a shoulder as i'll keep that i mind and again thanks for all Sue........
harry...
That really sucks about your spouse doing that as it makes me wonder about the marriage vowel ''til death do us apart'' ??? Especially when you need support the most and people bail out as it really just sucks......
I checked out firefox and played the Tennis game as that was cool as there are many others so again thanks as i appreciate the game sites...Sue.
I do appreciate the nice offer of gabbing whenever i need a shoulder as i'll keep that i mind and again thanks for all Sue........
harry...
Here's the end of it (after the 3rd = sign):
utf-8&aq=t&rls=org.mozilla:en-US:official&client=firefox-a
utf-8&aq=t&rls=org.mozilla:en-US:official&client=firefox-a
Here you go. I googled online games and here's what came up:
http://www.google.com/search?q=online+games&ie=utf-8&oe=utf-8&aq=t&rls=org.mozilla:en-US:official&client=firefox-a
Enjoy!!!
Sue
http://www.google.com/search?q=online+games&ie=utf-8&oe=utf-8&aq=t&rls=org.mozilla:en-US:official&client=firefox-a
Enjoy!!!
Sue
Harry,
In response to the comment you left for essdipity, any woman who wouldn't want you because of your disability isn't a woman you'd need in your life anyway. I'm someone who wouldn't care a bit about whether someone had a disability. There are more like me out there. What's important is who you are and how you treat and love others, not what disability your body has. Don't forget that, ok!! That's an order!!
Sue
In response to the comment you left for essdipity, any woman who wouldn't want you because of your disability isn't a woman you'd need in your life anyway. I'm someone who wouldn't care a bit about whether someone had a disability. There are more like me out there. What's important is who you are and how you treat and love others, not what disability your body has. Don't forget that, ok!! That's an order!!
Sue
Harry,
I have 2 cats. I really don't spend that much on cat food or litter. Their companionship and having an animal to care for and give me some purpose is worth so much more!
I do understand that you're living on a limited income though. You're renting, right? You may have to pay a monthly deposit to have a pet.
In 2001, my ex-husband divorced me, because of my illness and not being able to give him enough attention. He was like a small child and required a lot of attention!! LOL
Anyway, I had to live on $450 a month for about 1 1/2-2 years, while waiting on either SSI or SSD. I had to get Section 8 and food stamps. They denied me at first, so I got an attorney that got payed only if I won (and only got up to a certain amount). Then, they offered me SSI. My attorney told me I could accept that or fight it and keep trying for SSD and possibly end up with nothing. I decided to fight it. Boy was I scared!!! I ended up getting SSD in the end. You might want to find an attorney in your area that specializes in Social Security cases. You may be able to still get SSD. I got it, even though I hadn't been able to work for over 15 years!
Try to find something to pass the time. It would be less expensive to play games at iwon or pch.com. Check them out. You may also try paint-by-numbers, making models or something like that.
Feel free to write back anytime or send me a message directly from my profile. I'll get back to you as soon as I can. I usually get on the computer every day.
Sue
I have 2 cats. I really don't spend that much on cat food or litter. Their companionship and having an animal to care for and give me some purpose is worth so much more!
I do understand that you're living on a limited income though. You're renting, right? You may have to pay a monthly deposit to have a pet.
In 2001, my ex-husband divorced me, because of my illness and not being able to give him enough attention. He was like a small child and required a lot of attention!! LOL
Anyway, I had to live on $450 a month for about 1 1/2-2 years, while waiting on either SSI or SSD. I had to get Section 8 and food stamps. They denied me at first, so I got an attorney that got payed only if I won (and only got up to a certain amount). Then, they offered me SSI. My attorney told me I could accept that or fight it and keep trying for SSD and possibly end up with nothing. I decided to fight it. Boy was I scared!!! I ended up getting SSD in the end. You might want to find an attorney in your area that specializes in Social Security cases. You may be able to still get SSD. I got it, even though I hadn't been able to work for over 15 years!
Try to find something to pass the time. It would be less expensive to play games at iwon or pch.com. Check them out. You may also try paint-by-numbers, making models or something like that.
Feel free to write back anytime or send me a message directly from my profile. I'll get back to you as soon as I can. I usually get on the computer every day.
Sue
Just to say hey SL and thanks for stopping by to say hey !!!!
I just wanted to say again that i'm glad that Greenlydia (member here) recommended me to come over here and i have added this forum site to my Favorates.
Anyway talk to in a while.
harry....
I just wanted to say again that i'm glad that Greenlydia (member here) recommended me to come over here and i have added this forum site to my Favorates.
Anyway talk to in a while.
harry....
essdipity....
Thanks so much for the site ''meetup.com'' as that was interesting as i'll dig thru it more today. Also you gave me an idea and so i Googled Disability and Dating and i saw several good sites as i'll explore them today and beyond. You know i've been an athlete all my life as i'm tall and semi muscular and always had a nice lady in my life and now with this MS with Foot Drop it's really crushed my self esteem as i feel as a man i'm a weakling. I guess kinda like a women being scared in her face would bother her as we men value our strength and women value their beuti in a general sense if that makes sense.. Oh yeah i can drive as i just have to raise my legs a tad higher with Foot Drop but i do go for a drive so often just to get out even with the high gas prices so transportation is not a problem for me.
Anyway everyone is giving me ideas and i'm starting to Brainstorm on the different ideas and all.
Thanks so much for the site ''meetup.com'' as that was interesting as i'll dig thru it more today. Also you gave me an idea and so i Googled Disability and Dating and i saw several good sites as i'll explore them today and beyond. You know i've been an athlete all my life as i'm tall and semi muscular and always had a nice lady in my life and now with this MS with Foot Drop it's really crushed my self esteem as i feel as a man i'm a weakling. I guess kinda like a women being scared in her face would bother her as we men value our strength and women value their beuti in a general sense if that makes sense.. Oh yeah i can drive as i just have to raise my legs a tad higher with Foot Drop but i do go for a drive so often just to get out even with the high gas prices so transportation is not a problem for me.
Anyway everyone is giving me ideas and i'm starting to Brainstorm on the different ideas and all.
Hi Santana....
Just to say hey for responding and and glad to see ya posting. Thanks for your insight and sharing your experiences in this as i'm feeling better not that others are suffering with this but just knowing i'm/we are not alone so again thankyou !!!
harry......
Just to say hey for responding and and glad to see ya posting. Thanks for your insight and sharing your experiences in this as i'm feeling better not that others are suffering with this but just knowing i'm/we are not alone so again thankyou !!!
harry......
Thanks again Rena for the info on the Nationak MS society site as i'll check into that in detail today and do some other Googling along those lines today.Thanks again for your support and all.
harry.....
harry.....
Hi Sue.....
I'm sorry to hear about how long you've been housebound as 6 to 8 years is a long time. Thanks for saying it gets easier as maybe the first 6 months or longer are the toughest as its such an different lifestyle and readjustment. I have thought about getting a pet as maybe that would help as i hear that Seniors love their pets for companionship but i'm waiting untill aug 27 as thats when i het my fist SSDI payment. It's been tough as that's 8 months from when i quit work and applied on jan, 2nd so i'm living off my savings and credit cards . Do you spen alot on cat food/cat litter etc per month???
I wish i had crafts or hobbies as i've always been an outdoors recreational person who played basketvall and racquetball for leisure and used to hike the mountains etc...But i'll figure it out. Although i'm 44 and quit playing the video/arcade games since my 20's i.e. space invaders, asteroids, pole position etc...LOL.... Maybe i should buy one of the playstations etc..and get the madden football or other games where you can play for hours in league play. I'll check out iwon games as i too like the word/puzzle games etc...
Thanks again sue as i hope to gab to ya again......
harry.
I'm sorry to hear about how long you've been housebound as 6 to 8 years is a long time. Thanks for saying it gets easier as maybe the first 6 months or longer are the toughest as its such an different lifestyle and readjustment. I have thought about getting a pet as maybe that would help as i hear that Seniors love their pets for companionship but i'm waiting untill aug 27 as thats when i het my fist SSDI payment. It's been tough as that's 8 months from when i quit work and applied on jan, 2nd so i'm living off my savings and credit cards . Do you spen alot on cat food/cat litter etc per month???
I wish i had crafts or hobbies as i've always been an outdoors recreational person who played basketvall and racquetball for leisure and used to hike the mountains etc...But i'll figure it out. Although i'm 44 and quit playing the video/arcade games since my 20's i.e. space invaders, asteroids, pole position etc...LOL.... Maybe i should buy one of the playstations etc..and get the madden football or other games where you can play for hours in league play. I'll check out iwon games as i too like the word/puzzle games etc...
Thanks again sue as i hope to gab to ya again......
harry.
Hi Harry,
I'm adding on my welcome on for you too. So good to have you. I was dx'd with MS last year. I remember a friend of mine mentioned to me when I was 1st diagnosed that there are a lot of support groups. My immediate thought was, yea, well, that's nice and I smiled and went about my business.
In my heart, I felt they were just not for me. But, I joined this forum early on, looking for information - and have never left. Since then, I also went to a local chapter MS Society sponsored seminar. A Neurologist spoke, a therapist and a couple of others. It was WONDERFUL. I just didn't know back then that it could truly be this way. I strongly suggest to look into what your area has, and I hope you have the same experience as I did.
I also go to meet one of our forum members here - KITTEN! It was like I already knew her and we were family. We hugged, cried a little, it was just like seeing someone you haven't seen in a long time, but you've never forgotten them - - that kind of warm feeling.
So, Harry, thank you for coming our way. There was a blessing put on this forum, I just feel it because somehow we are all able to help each other - because we care so much, and truly "want" to be there for each other, through the good and the bad.
Hope to see you around here more often!
Be well,
SL
I'm adding on my welcome on for you too. So good to have you. I was dx'd with MS last year. I remember a friend of mine mentioned to me when I was 1st diagnosed that there are a lot of support groups. My immediate thought was, yea, well, that's nice and I smiled and went about my business.
In my heart, I felt they were just not for me. But, I joined this forum early on, looking for information - and have never left. Since then, I also went to a local chapter MS Society sponsored seminar. A Neurologist spoke, a therapist and a couple of others. It was WONDERFUL. I just didn't know back then that it could truly be this way. I strongly suggest to look into what your area has, and I hope you have the same experience as I did.
I also go to meet one of our forum members here - KITTEN! It was like I already knew her and we were family. We hugged, cried a little, it was just like seeing someone you haven't seen in a long time, but you've never forgotten them - - that kind of warm feeling.
So, Harry, thank you for coming our way. There was a blessing put on this forum, I just feel it because somehow we are all able to help each other - because we care so much, and truly "want" to be there for each other, through the good and the bad.
Hope to see you around here more often!
Be well,
SL
Back again, with a couple more suggestions. First, if you go through cycles of depression and sleeplessness, please understand that that's very common with MS, and can be a primary symptom of the disease. It also, of course, can be a secondary effect. Either way, you don't need to just suffer. Your doc can prescribe a mild antidepressant that can also help with sleep, so you'll feel more energetic and upbeat as you adjust to this new life. Please ask you doctor. It doesn't even have to be your neuro.
But as to human companionship, there are indeed more options. An MS group would be my first suggestion, although I don't know what activities they might have. Only one way to find out--give 'em a call!
Also, how about some volunteering? Would your health condition permit your giving an hour or two a week to volunteer work? Maybe teaching computer skills to little kids, or reading to kids in a disadvantaged-area preschool. There are loads of other such possibilities, depending on your interests and talents. You will find, as I have, that you get far more out of volunteering than you put into it.
A different way to broaden your horizons is an outfit called meetup.com. (In case that's xxx'd out, it's meetup, followed by a dot, and then com. Click on New Mexico, then your city. I just did it, and found well over a hundred different interest groups that meet there. You could explore some of these and email the leaders of ones that sound promising.
I don't know whether you can drive, and of course that can be a big problem, but especially for volunteer activities, the sponsors are often willing to provide rides. Or maybe you could swap out services. You fix someone's computer and they take you to sports events. You get the idea.
For times when being at home is the only act in town, I highly recommend Netflix. They have some really inexpensive plans and about a billion movies that you can rent from home. If you're not familiar, check out their site.
Good luck, Harry, and let us keep hearing from you.
ess
But as to human companionship, there are indeed more options. An MS group would be my first suggestion, although I don't know what activities they might have. Only one way to find out--give 'em a call!
Also, how about some volunteering? Would your health condition permit your giving an hour or two a week to volunteer work? Maybe teaching computer skills to little kids, or reading to kids in a disadvantaged-area preschool. There are loads of other such possibilities, depending on your interests and talents. You will find, as I have, that you get far more out of volunteering than you put into it.
A different way to broaden your horizons is an outfit called meetup.com. (In case that's xxx'd out, it's meetup, followed by a dot, and then com. Click on New Mexico, then your city. I just did it, and found well over a hundred different interest groups that meet there. You could explore some of these and email the leaders of ones that sound promising.
I don't know whether you can drive, and of course that can be a big problem, but especially for volunteer activities, the sponsors are often willing to provide rides. Or maybe you could swap out services. You fix someone's computer and they take you to sports events. You get the idea.
For times when being at home is the only act in town, I highly recommend Netflix. They have some really inexpensive plans and about a billion movies that you can rent from home. If you're not familiar, check out their site.
Good luck, Harry, and let us keep hearing from you.
ess
Hi, welcome to our group. I know you will find friendship and support here. I had a sudden attack two years ago that caused vision damage from the lesions in my brain. DX is ADEM for now but being watched for MS.
I can't really say I am completely house bound as I have no limb symptoms except for some transient tingleing in my calves and arms that only last for about 10-15 min at a time. I can go out but only if someone else drives me. I hanen't been able to drive for two years because of the visual field loss.
I am 41 and have three boys ages 15, 12, and 7. There are a lot of times that I miss so much being able to take them out to do things by myself. This has been a hard adjustment for me and them. My vision is still improving but it has been painfully slow and still is not enough to drive yet. I don't know if I will ever recover enough to be able to drive, but I still keep hoping.
I won't say I have ajusted to this, because I don't think that a person ever gets used to being limited, but I have learned to live with it, and eventhough I don't want to forever, I know I can if I have too!
I believe that it is human nature to grieve over a part of us that does not function the way it always has. I went through all of the emotions of fear, depresion, anger to partial acceptance, but I still have my down times. Besides this illness, I have suffered from depresion and anxiety disorder for most of my adult life.
This group has been a life saver for me, because I know that I can come online here and talk with my friends and I know that they do not gudge me and that they in thier own ways can relate to what I am going through and feeling. Life doen't stop and wait for anyone to catch up and it is nice to have a place to count on when things get to be too much to deal with.
Most of my friends disappeared too, Not one of them have even asked me if I needed a ride to do anything. Surprisingly, my family has not either. My husband and my three boys have been my sole support, except of course, for my new friends here on this forum.
But one things for sure, it lets me know who really cares about me and who I can count on. Not to say that seeing how many people didn't care doesn't hurt, because it does! But I don't expect them to understand something that they have no idea how hard it is to just live life every day. After all, how could they understand when they haven't been through it?
I had to come to some kind of peace with my ownself about this and the anger and betrayal I felt from being pretty much forgotten. I had to make a decision to live my life with what I have and find a way to be happy and thanful for all of the things that I can still do. This seems to help me to cope! I hope you stick around here with all of your new friends who will most definately always be here when you need us!
~Santana~
I can't really say I am completely house bound as I have no limb symptoms except for some transient tingleing in my calves and arms that only last for about 10-15 min at a time. I can go out but only if someone else drives me. I hanen't been able to drive for two years because of the visual field loss.
I am 41 and have three boys ages 15, 12, and 7. There are a lot of times that I miss so much being able to take them out to do things by myself. This has been a hard adjustment for me and them. My vision is still improving but it has been painfully slow and still is not enough to drive yet. I don't know if I will ever recover enough to be able to drive, but I still keep hoping.
I won't say I have ajusted to this, because I don't think that a person ever gets used to being limited, but I have learned to live with it, and eventhough I don't want to forever, I know I can if I have too!
I believe that it is human nature to grieve over a part of us that does not function the way it always has. I went through all of the emotions of fear, depresion, anger to partial acceptance, but I still have my down times. Besides this illness, I have suffered from depresion and anxiety disorder for most of my adult life.
This group has been a life saver for me, because I know that I can come online here and talk with my friends and I know that they do not gudge me and that they in thier own ways can relate to what I am going through and feeling. Life doen't stop and wait for anyone to catch up and it is nice to have a place to count on when things get to be too much to deal with.
Most of my friends disappeared too, Not one of them have even asked me if I needed a ride to do anything. Surprisingly, my family has not either. My husband and my three boys have been my sole support, except of course, for my new friends here on this forum.
But one things for sure, it lets me know who really cares about me and who I can count on. Not to say that seeing how many people didn't care doesn't hurt, because it does! But I don't expect them to understand something that they have no idea how hard it is to just live life every day. After all, how could they understand when they haven't been through it?
I had to come to some kind of peace with my ownself about this and the anger and betrayal I felt from being pretty much forgotten. I had to make a decision to live my life with what I have and find a way to be happy and thanful for all of the things that I can still do. This seems to help me to cope! I hope you stick around here with all of your new friends who will most definately always be here when you need us!
~Santana~
Hi again Harry...if you Google the National MS Society there is an affiliation with the University of New Mexico and I am sure that they would be able to put you together with any local support groups that there may be in your area! It can be very beneficial to be able to deal one on one with others that have MS because we tend to understand each other and our problems so much better than outsiders. I hope you have some luck with this and if not let us know and we will see what else we can come up with to help you along! You sound like a pretty strong person Harry and I hope you do stick around! LIke I said before you may be surprised at just how much you may be able to help others on our forum as well and how refreshing it is when you can! Give it a try honey! Welcome home!
Lots of hugs,
Rena
Lots of hugs,
Rena
I'm new here too. I have yet to be diagnosed with MS. The Neur. is pretty sure that I have it.
I'm 47 and have been housebound for many years, due to CFS and Fibro. I've had both for over 20 years. I'd say I've been housebound for the last 6-8 years or so. It's definitely something that takes time. There are still times I get very frustrated that I can't just come and go and do the other type of things healthy people can do. You have to try to just take one minute at a time (sometimes one second at a time). It will get easier.
I find myself getting aggravated at people that just take what they can do for granted.
It helps that my son still lives with me. He's 20 though. I don't know how much longer he'll be living with me. I also have 2 cats. Do you have any pets?
Yes, the internet definitely helps. It helps to be in touch with others who really do understand. I've started playing card and word games at iwon.com to help to pass the time and to try to help my cognition. I don't know if it's helping with that or not. Do you enjoy any kind of crafts?
As far as finding a local support group, you can sometimes find them listed in the newspaper. You can also try calling a hospital. They may be able to point you to one.
We're all here, if you need us!
Sue
I'm 47 and have been housebound for many years, due to CFS and Fibro. I've had both for over 20 years. I'd say I've been housebound for the last 6-8 years or so. It's definitely something that takes time. There are still times I get very frustrated that I can't just come and go and do the other type of things healthy people can do. You have to try to just take one minute at a time (sometimes one second at a time). It will get easier.
I find myself getting aggravated at people that just take what they can do for granted.
It helps that my son still lives with me. He's 20 though. I don't know how much longer he'll be living with me. I also have 2 cats. Do you have any pets?
Yes, the internet definitely helps. It helps to be in touch with others who really do understand. I've started playing card and word games at iwon.com to help to pass the time and to try to help my cognition. I don't know if it's helping with that or not. Do you enjoy any kind of crafts?
As far as finding a local support group, you can sometimes find them listed in the newspaper. You can also try calling a hospital. They may be able to point you to one.
We're all here, if you need us!
Sue
WOW !! Thanks so much Aura, Rena and Essdipity......I never realised about the Support Groups so please tell me more if you can. I'm here in Albuquerque so how would i finf these kind of groups and what all goes on in these meetings or gatherings??. Do they get together every so often and just talk and gab or do they try to plan events. How do these groups intertwine with each other when some members can walk fine. Others like me with a cane and others in a wheelchair?? Again very interesting.
The Internet is a life saver as is cable tv as i like the History Channel and Discovery Channel also. I just started working out again as we have a good gym at our apartment complex so that's helping and i do crusie different subject forums out there on the internet to keep occupied and i also like to read the science and tech magazine sites.
I guess it goes in cycles as a few weeks i'm fine then it starts to eat at me about all this so then i toss and turn and sleep for an hour or two a nite for about a week and that gets me tired and down and then it cycles again to feeling better.. I could possibly take meds (insomnia/depression) and maybe i will but just having Human interaction is a powerful depression buster as we humans need companioship .
Anyway enough of me gabbing as again thanks so much and i appreciate the advice and i'll flag this site in my favorates as i'll check in quite a bit and read about others on here and their threads and postings.
harry.....
The Internet is a life saver as is cable tv as i like the History Channel and Discovery Channel also. I just started working out again as we have a good gym at our apartment complex so that's helping and i do crusie different subject forums out there on the internet to keep occupied and i also like to read the science and tech magazine sites.
I guess it goes in cycles as a few weeks i'm fine then it starts to eat at me about all this so then i toss and turn and sleep for an hour or two a nite for about a week and that gets me tired and down and then it cycles again to feeling better.. I could possibly take meds (insomnia/depression) and maybe i will but just having Human interaction is a powerful depression buster as we humans need companioship .
Anyway enough of me gabbing as again thanks so much and i appreciate the advice and i'll flag this site in my favorates as i'll check in quite a bit and read about others on here and their threads and postings.
harry.....
Hi, Harry. I welcome you too. Rena's suggestion about getting involved with a support group is a good one. I will be thinking more as well about how your social life can get better, and I'm sure lots of others here have some interesting thoughts on this.
Right now, though, I'm wondering what kinds of activities you like that can be done at home, and that don't require a lot of moving around. Do you do much reading, or painting, or even cooking? What music do you like? Can you exercise at all? I've heard that the Wii system is great for that, especially Wii Fit. It's pretty pricey, so I don't know if that's in the cards. But speaking of cards, do you play? There are online poker games that many people love. I can think of quite a few activities but I don't know your interests. Just hanging out at a park doesn't sound like much fun.
Please stick around and await suggestions from the forum members. You have a lot of new friends now.
ess
Right now, though, I'm wondering what kinds of activities you like that can be done at home, and that don't require a lot of moving around. Do you do much reading, or painting, or even cooking? What music do you like? Can you exercise at all? I've heard that the Wii system is great for that, especially Wii Fit. It's pretty pricey, so I don't know if that's in the cards. But speaking of cards, do you play? There are online poker games that many people love. I can think of quite a few activities but I don't know your interests. Just hanging out at a park doesn't sound like much fun.
Please stick around and await suggestions from the forum members. You have a lot of new friends now.
ess
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