Work as long as you can! I just turned 57, retired at 45, DX at 35. If you are going for SS disability get a lawyer. I used a personal injury firm, it took 6 months.
The first 10 years or so after my dx, I needed probably one day of doing nothing every week, sometimes less, sometimes more. I worked 40 hours weeks for the first year, and 30 hours per week since then. Over the last 7 years Iāve been needing increasingly more rest days. About four years ago I had to start pacing myself when it came to house work, only able to do one chore each day (dishes one day, vacuum another, mopping up a third day). These last 20 months I have had maybe one semi okay day every two weeks, Iāve been on sick leave from work for almost 1,5 years and I spend at least 2-4 days every week literally doing nothing but sleeping and forcing myself to get something to eat from the kitchen.
My sister will come with me to do my grocery shopping about once every ten days, and also sometimes help me when I have an errand to run. She will take me to throw away trash at the recycling center. I will use my good days to take out the regular garbage, get my mail and/or walk to thesmall grocery store (itās only 200 meters away). My BIL (he only works during the warmer seasons) will usually drive me if I need to go to a doctors appointment thatās more than 30 minutes away. My neurologist is 20 minutes away by bus, and Iām usually pretty exhausted after a round trip to the hospital, but I can still manage it pretty well on my own. Public transport is great where I live so I can get most places no problem. My sister, brother and BIL will also help me when I need something done around the house, but I do my own cooking and cleaning, when I have the energy. I donāt really invite friends over because of the state of things, but I donāt really care if family sees the dust bunnies hiding under the bed. I have two cats that sheād like crazy so the bunnies are pretty much always around anyway.
Everything is broken down into chunks when you have no energy. A normal person would fly through many things but for us it's like trying to run through treacle. I understand.
Youāre so very right. You need energy to do things, but also to plan things, get ready for things, wrap up the thing you were doing. I read/heard a long time ago that someone with MS uses up three times as much energy doing something compared with a healthy person. Thatās kind of crazy if itās true.
I totally get that hat you mean. Sometimes I sit here and mentally take myself through whatever task I want to get done. Sometimes that itself exhausts me and I get nothing physically done.
I call these MS Pajama Days. They are important!
I sleep 11 hrs a day and work halftime. So I only take an MS Pajama day once a month or so. I usually need one if Iāve been out late the night before, like 10pm lol! Or if Iāve just pushed myself way too hard.
I have not done a total rest day since my diagnosis one year ago. I definitely need to rest throughout the week on my days off. Reading the responses now I have Iāve been thinking I need to do a full day, I think it would help me be more functional
Not nearly enough. I just finished my first year as a full-time professor and am currently crashing and burning. My husband wonders why Iāve been mostly in bed for days, but itās because Iām burnt out and itās all kind of hitting at once.
The last 2 years 1 day out is a 4-7 day bed bound. I'm doing a little better where it's only taking 2-3 days but I'm currently waiting on soulmedrol infusion. Long story short I was septic last year and didn't recover and was fighting infection for the entire year.
I finally had surgery and IV antibiotics then continued on home antibiotics to be sure it didn't return.
In the midst of all that my Ocrevus was late I went into a relapse that had new to me symptoms and since my Ocrevus I'm still having some of them and my doctor feels that we can do better. Basically trying to fight the effects of surgery, infection and Kate Ocrevus.
I'm praying it gets me over this slump.
I need a full day of nothing and sofa/bed rest once a week š
Co-signed
+1
U working pt / ft?
I do 4 days a week, corporate job. Dropped down a day after I was diagnosed.
Usually one day a week. But I'm retired so I can pace myself. I try to do as much walking as possible the rest of the week.
Great that you are still so active. Feel I'm ready to retire at 52!
Work as long as you can! I just turned 57, retired at 45, DX at 35. If you are going for SS disability get a lawyer. I used a personal injury firm, it took 6 months.
I agree but I've had MS since 1998. Not in US so no need for lawyer, but thanks š
The first 10 years or so after my dx, I needed probably one day of doing nothing every week, sometimes less, sometimes more. I worked 40 hours weeks for the first year, and 30 hours per week since then. Over the last 7 years Iāve been needing increasingly more rest days. About four years ago I had to start pacing myself when it came to house work, only able to do one chore each day (dishes one day, vacuum another, mopping up a third day). These last 20 months I have had maybe one semi okay day every two weeks, Iāve been on sick leave from work for almost 1,5 years and I spend at least 2-4 days every week literally doing nothing but sleeping and forcing myself to get something to eat from the kitchen.
That sounds very tough, I'm sorry you are so exhausted. Have you any support or help?
My sister will come with me to do my grocery shopping about once every ten days, and also sometimes help me when I have an errand to run. She will take me to throw away trash at the recycling center. I will use my good days to take out the regular garbage, get my mail and/or walk to thesmall grocery store (itās only 200 meters away). My BIL (he only works during the warmer seasons) will usually drive me if I need to go to a doctors appointment thatās more than 30 minutes away. My neurologist is 20 minutes away by bus, and Iām usually pretty exhausted after a round trip to the hospital, but I can still manage it pretty well on my own. Public transport is great where I live so I can get most places no problem. My sister, brother and BIL will also help me when I need something done around the house, but I do my own cooking and cleaning, when I have the energy. I donāt really invite friends over because of the state of things, but I donāt really care if family sees the dust bunnies hiding under the bed. I have two cats that sheād like crazy so the bunnies are pretty much always around anyway.
Everything is broken down into chunks when you have no energy. A normal person would fly through many things but for us it's like trying to run through treacle. I understand.
Youāre so very right. You need energy to do things, but also to plan things, get ready for things, wrap up the thing you were doing. I read/heard a long time ago that someone with MS uses up three times as much energy doing something compared with a healthy person. Thatās kind of crazy if itās true.
I totally get that hat you mean. Sometimes I sit here and mentally take myself through whatever task I want to get done. Sometimes that itself exhausts me and I get nothing physically done.
Certainly feels like it!
Most days of the week are rest days š«¤
Same. :-/
I haven't got up at all today. That kind of rest day?
I call these MS Pajama Days. They are important! I sleep 11 hrs a day and work halftime. So I only take an MS Pajama day once a month or so. I usually need one if Iāve been out late the night before, like 10pm lol! Or if Iāve just pushed myself way too hard.
Yes agreed - I haven't got dressed yet, I'll get up tomorrow š. I've pushed myself way too hard recently.
You have to be good to yourself! We need time to recover.
I have an A type personality so rest times are very upsetting for me. I know I need them but it is a challenge to go with it.
I have not done a total rest day since my diagnosis one year ago. I definitely need to rest throughout the week on my days off. Reading the responses now I have Iāve been thinking I need to do a full day, I think it would help me be more functional
I'm 26 years after diagnosis so that probably has a bearing on things!
I slept 8 hours this night and four hours in the afternoon
Ooof!
Indeed
Not nearly enough. I just finished my first year as a full-time professor and am currently crashing and burning. My husband wonders why Iāve been mostly in bed for days, but itās because Iām burnt out and itās all kind of hitting at once.
I need a full day of rest roughly once every 2 weeks. If I can get one once a week, even better!
The last 2 years 1 day out is a 4-7 day bed bound. I'm doing a little better where it's only taking 2-3 days but I'm currently waiting on soulmedrol infusion. Long story short I was septic last year and didn't recover and was fighting infection for the entire year. I finally had surgery and IV antibiotics then continued on home antibiotics to be sure it didn't return. In the midst of all that my Ocrevus was late I went into a relapse that had new to me symptoms and since my Ocrevus I'm still having some of them and my doctor feels that we can do better. Basically trying to fight the effects of surgery, infection and Kate Ocrevus. I'm praying it gets me over this slump.
If I were heavily active the day before with a holiday, road trip or parade then I need the next two days in bed.
Every day is a rest ms day
There's stuff called total rest days?!??!
You beat me to it. I want to know where I can sign up. I can't imagine that existing for me every, tbh.