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Old 12-29-2007, 12:53 PM   #1
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hello034 HB User
Weekends-who needs them?

I'm new to this site...but love people..with MS-handicapped-can't get out-just myself & 2 cats. Work at home during the week-so all is great-but than come the weekends-most of my so called friends have abandoned me-don't understand MS..think one can get better-improve-always be up....doesn't work that way-I'm sure you all understand good days & bad days...
Anyway just wanted to say Hi.....
Was anyone out there alone on Christmas? Still get upset when someone says "How was your Christmas"...do I tell them the truth..or say "Oh it was GREAT"

That's all for now......hope to talk to someone soon,
"Hello 034"

 
Old 12-29-2007, 02:24 PM   #2
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april1848 HB User
Re: Weekends-who needs them?

Welcome, Hello.

I am not home bound and I work full-time, although it's getting difficult. But I do understand the Friend issue. I deal with constant, intense fatigue often (the past few weeks particularly have been a struggle), and I also found that some of my friends don't get it. Currently I am pretty much unable to leave my home during the weekends, due to the side effects of my medication, and because I am completely, physically drained after a work week and I have to rest to prepare for the next one.

It would be lovely if some of my friends would visit on the weekends, but they all want to go out. I'm married, but he works very long hours, including the weekends, so I'm alone most of the day. Surprisingly to me, the only person who will visit is my mother. SHe'll come by on Saturdays and straighten up my house, and she doesn't mind if I spend the whole time sitting in my favorite chair. I'm not much fun on the weekends! But it would be great to have a friend of my own age come by once in awhile.

I'm sorry you didn't have a good Christmas. Regarding your question about whether or not you should be honest when people ask you how Christmas was, I have no answer to that. I am newly diagnosed and I am still struggling with being honest on how things went, how I'm doing or feeling, and all of those questions that people ask. In my experience, many people don't really want to know the truth, they want a generic answer that won't put them in an awkward situation. Other people really do want to know, and they sincerely care. I guess it depends on who's asking.

I am new to all of this, but MS is a lonely disease. Maybe all diseases are. It's hard when you can't do what "normal" people do. I'm trying to deal with the fact that there are limitations to what I can do, and the consequences if I ignore those limitations. It's really hard.

I'm just rambling now. Please keep posting on this board. There are many friends to be made here, who understand. We won't get mad if you're having a bad day! We can have a party here every weekend!

 
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Old 12-29-2007, 04:56 PM   #3
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Smile Re: Weekends-who needs them?

Quote:
Originally Posted by april1848 View Post
Welcome, Hello.

Hi there-One thing I'm lucky with is work set me up at home when I had a relapse 3 years ago and my leg went...so I use a walker & wheelchair. A phone & a program on the computor is set up & it's no different than working in the office. It's a shame you have to leave your home each day. I can only imagine how you must feel at the end of the day & than have to transport yourself home. I'm tired too, but all I do is turn off computor & roll over to the kitchen. My family lives in another state & I lost my Mon will be 6 years in March. You're lucky to have yours-and it's great she's such a big help. I have a cleaning gal-who also does my landry-she's not 100% dependable-but it is someone I can trust. Do you have children? I don't-never married-but have 2 wonderful cats-who I found behind my house 4 years ago. So I consider them my kids-though many don't understand that. What med do you take? I use Avonex-so it's just once a week. Though my doctor wants me to get a MRI so he can see if anything changed-he migh want to change my meds. Until my relaspe all was normal-went out-drove-socialized....than surprise.....But don't let me get you scared-look at Montel Williams.....

So..if anyone out there just wants to say hi.........say HI!!!!!
hello034 (my lucky Keno number)


I am not home bound and I work full-time, although it's getting difficult. But I do understand the Friend issue. I deal with constant, intense fatigue often (the past few weeks particularly have been a struggle), and I also found that some of my friends don't get it. Currently I am pretty much unable to leave my home during the weekends, due to the side effects of my medication, and because I am completely, physically drained after a work week and I have to rest to prepare for the next one.

It would be lovely if some of my friends would visit on the weekends, but they all want to go out. I'm married, but he works very long hours, including the weekends, so I'm alone most of the day. Surprisingly to me, the only person who will visit is my mother. SHe'll come by on Saturdays and straighten up my house, and she doesn't mind if I spend the whole time sitting in my favorite chair. I'm not much fun on the weekends! But it would be great to have a friend of my own age come by once in awhile.

I'm sorry you didn't have a good Christmas. Regarding your question about whether or not you should be honest when people ask you how Christmas was, I have no answer to that. I am newly diagnosed and I am still struggling with being honest on how things went, how I'm doing or feeling, and all of those questions that people ask. In my experience, many people don't really want to know the truth, they want a generic answer that won't put them in an awkward situation. Other people really do want to know, and they sincerely care. I guess it depends on who's asking.

I am new to all of this, but MS is a lonely disease. Maybe all diseases are. It's hard when you can't do what "normal" people do. I'm trying to deal with the fact that there are limitations to what I can do, and the consequences if I ignore those limitations. It's really hard.

I'm just rambling now. Please keep posting on this board. There are many friends to be made here, who understand. We won't get mad if you're having a bad day! We can have a party here every weekend!

 
Old 12-29-2007, 05:00 PM   #4
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MSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB UserMSJayhawk HB User
Re: Weekends-who needs them?

I always look forward to the weekends. Sunday I get to church for an hour or so, but the remainder of the weekend I spend relaxing. Saturday and Sunday I rest and recharge my batteries (and my power chair batteries). My fair weather friends have since long departed. My weekdays are busy with home schooling and my online studies. How was my Christmas? I can always say, I honored my Savior in the remembrance of his birth.

When MS lays you out and you are recovering in bed, look towards Heaven and rejoice. Seek out at least one thing a day to enjoy. I enjoy watching God's creation.

You are not alone in this. Here you may enjoy the company of others who have the burden of MS. Some of us are in bad shape, some take meds, some do not take meds- we all share MS as our commonality. You are not alone and I do not think you will find fair weather friends here. The only limitations on your life are those limitations we place upon ourselves.

Last edited by MSJayhawk; 12-29-2007 at 06:38 PM. Reason: typo

 
Old 12-29-2007, 06:35 PM   #5
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april1848 HB User
Re: Weekends-who needs them?

I'm using Avonex too. I had my seventh injection last night.

I don't have any kids, but I have a stepdaughter who's usually here Sundays and Mondays. I also have a cat, who is my baby. Yes, I understand that cats are your kids! I never wanted kids, but I'll always have cats in my life.

It's wonderful that your employer has been so great. Mine has not. I'm the assistant to the CEO, and he hasn't been supportive. I got a "talking to" about missing work when I needed IV steroids (I had plenty of sick time). I am also the Human Resources person so I know my rights. But because I'm the HR person, there's also no buffer or mediator between the boss and I.

I was off of work this past week and I'm dreading going back on Monday. I feel that no matter how well I do my job, my future there is doomed. But I've also had time to think, and I think it's time to start looking for a new job! I think it's time to try a job that isn't as mentally exhausting.

My mother has been a blessing. She wasn't there for me when I was a kid, but I think I need her more now. My husband is great about giving me injections and helping around the house sometimes, but often he's distant too.

I tend to get scared when I'm not feeling that great. I try to be optimistic about the future, especially new treatments that may come. I am definitely on a roller coaster!

How long have you been on the Avonex?

 
Old 12-30-2007, 06:49 AM   #6
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Re: Weekends-who needs them?

Hey Hello034. I live less than half an hour from you. Just out of curiosity, are you going to any MS support groups? I used to belong to one, which I no longer attend, only due to work and time issues- but they were a really nice bunch of people, and it managed to give me some contacts who DID understand my issues and constraints. I still keep in touch with most of the people from the group You can look into it thru the Philadelphia MS Society. It might be helpful if you could make some friends who are in the same boat as all of us.
Meanwhile, we are here if you care to chat..

In answer to your question: I couldnt live without weekends. Could honestly care less about my lack of social life, I depend on weekends to catch up mostly on rest, but also on housework and things which need to be done!
Hugs and Happy New Year
Nikki
__________________
RRMS- dx 05

Last edited by MSNik; 12-30-2007 at 06:50 AM.

 
Old 12-30-2007, 09:03 AM   #7
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hello034 HB User
Re: Weekends-who needs them?

Thank you for your input...no I don't belong to any support groups..I do work Mon-Fri 10A-7P, of course from home. But I will look into this-I at times don't find the MS Society of Phila too helpful. Will call them tomorrow-though they might not be there. Yes, I do need people who understand-just to talk to...it's hard right now with the holidays-but I will get though. I'll let you know how I make out-thank you again

 
Old 12-30-2007, 10:32 AM   #8
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Re: Weekends-who needs them?

Hello, hello! When in doubt, rest assured you are certainly not alone! There are many virtual communities out there made up with people who have MS who are experiencing what you are.

 
Old 12-30-2007, 11:12 AM   #9
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hello034 HB User
Re: Weekends-who needs them?

I'm been on Avonex since the start-7 years. When I was told my good new-HAHA, my doctor said do you want to do it once a week-every day-or every other day-so not knowing what I was getting into to-I said once a week-only to find out it was a needle. I was the person who when you mentioned a needle-I would faint!!!! I had a friend who offered to do this for me once a week..in the beginning you had to mix it together. Of course the Avonex people kept calling me to come out & show me how to do it-kept putting that off. There was no way I could ever do that myself. Of course after a while the calls stopped. Than also-my so called friend was getting tired of doing it-at times I'll do to my doctor's office & the nurse would do it-even found someone at work who could do it..that was funny we'd go into the handicapped bathroom-where she would do it...well finally I thought this is nuts, I got to learn to do it..called Avonex-they sent out a nurse-who was great-and lo & behold..it's easy. So now I control when I do it..Now it's Sat evening-than do right to bed. I used to do it Friday night-but a few times-Sat AM would be horrible-fell down my steps once (didn't hurt anything)..many times couldn't get out of bed-legs were locked...I remembered when I was in the hospital (when leg went) in re-hab...all was good during the week-come Sat I couldn't do anything that I had done during the week-and Sun was back to normal. I questioned Avenox-they said the injection goes into your bad area-so it effected my leg-well I figured it out-working all week-come Fri night I was tired-so it effected my legs-so now I do it Sat night-no major problems on Sun. Have u had any bad side effects?
About work, at first my boss was going to let me go, said he had to reduce the staff-well I know I wasn't low man on the totem pole-but what was I to do. I called the MS Society to get names of lawyers-thought well guess I'll go on disability-I'd rather have a lawyer do the paper work-did mention-think I lost my job because of my disability (see I was unable to drive) they said have I spoken to ADA-called them-they said could u do your job at home-yes...did I work for a company with more than 15 employees-yes-could your company afford about $300.00 to set you up at home-yes...so I called my HR mentioned ADA and they said did I want to speak to their ADA person?.....never knew my Co. had an ADA person on their payroll...well spoke to her, after papers were faxed back & forth between me-my doctors.....I had a job!!!!! Was put back on full salary-in a few weeks was told where I would work out of (home base) and about 3 months later..I'm working. Unfortunatley I did place a complaint aganist my 1st boss-felt bad-but he should have known about the ADA person or at least mentioned to someone about my new disability-they guaranteed me he wouldn't loss his job-though I almost did-wouldn't have wanted that to happen to him. It'll be 3 years in May that I've been working from home...and no problems....when a client calls they don't know where I am..it doesn't make a difference.
It's a shame you are getting flack-where can you go..you are the HR person-makes it hard. Have u looked into working from your home in another field? I know there was a gal on Good Morning America who was talking about various at home jobs. Maybe go on GMA's web site-there still might be something about that. I'm so thankful I can & am able to still work. I love my job...and without the job I'd go crazy!!!!!
Good luck with work..........hope to talk to you soon again

 
Old 12-30-2007, 03:47 PM   #10
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Re: Weekends-who needs them?

Hi Hello034.

I would love to have an employment situation like yours. Most of my job can't be done from home because I have to be there for the employees and especially for the CEO and Board of Directors. I work for a non-profit, so there are also fundraisers, which I plan, and many other annual events. This is why I'm considering getting a new job. Without a job, I have no insurance, so I have no choice in the matter. My husband is self-employed, so no insurance for him. No private insurance company would cover us if we wanted to pay for it ourselves--he had a heart attack last year (healthy now) and I have MS, probably the most expensive disease to treat.

My plan is to find a less demanding job with benefits. I can get COBRA in the interim so I don't have to deal with any pre-existing condition clauses.

It takes a lot of energy to look for a job, but I have to do it. I would rather leave my current job before I fail at it, or wear myself out.

My side effects from the Avonex go away within 48 hours, which is why I do it on Friday night. I have headaches and bad fatigue throughout the week. I am having a few new symptoms lately, such as vertigo and constipation. Some symptoms have never left me since my last attack, like weakness, pain, occasional numbness, and muscle spasms. Often I can't concentrate and I get overwhelmed a lot. One time I had blurry vision in my left eye, but it went away. I have fallen three times since my diagnosis in September, but I only hurt myself once. I fell and hit my head on the kitchen counter. Not fun!

I did see that lady on Good Morning America about working from home. Unfortunately, these things usually don't pay benefits, but I would love to do it on the side anyway, on top of a benefit job. I know I could do medical transcription from home. I was trained in it, and medical terminology, anatomy, and all of that. I've always worked on the adminstrative or clerical side of behavioral health clinics, mental health and addiction. I think I may go into a different field altogether. I would go crazy without a job too!

That's interesting that the Avonex people said that it goes to the bad areas. My left side is my worst, especially my leg. I've had problems with my leg lately, and sometimes I limp. Maybe that's the Avonex going to where I need it!

 
Old 01-01-2008, 05:19 PM   #11
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Thumbs up Re: Weekends-who needs them?

When I worked full-time (until July, '07), I slept from the time I got home on Friday until I went to work on Monday mornng. Weekends were essential.

Now I can't work and I'm home all day. It was very interesting to see who from work would keep in touch with me - 3 people I never would have expected.

Dealing with MS is definitely a solo effort. My husband is terrific but he can't possibly know what it's like to live with this beast - no one can who doesn't have it. Mine is relentless (progressive - duh!).

Everyone on this massage board is a valiant trooper. Being afraid comes with the illness.

I'm 52 and I just know this disease will be cured in about 10-15 years. I'm planning what I'm going to do and it's a blast just thinking about the freedom. Try it when you get down.

HAPPY 2008!!!

 
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