Hi all my lovelies! My favorite peeps! I pray this finds everyone well! I need some help from those of you that have been forced into retirement way to early due to this lovely friggin disease we call MS. Ok, I don't call it MS. I call it many things things, but since this is a family show. I won't share.
So my problem is this, Gosh, I am sure lazy. I have soooo many things I can do. I just don't. Actually I have so many things I need to do. I just don't do them. It has taken me 4 days to come up with the effort and energy to write this. I have dozens of things I have been asked to sell by my uncle. (tech stuff online) I have books galore. I could shower more than twice a week.( Oh shut up! I do wash myself) etc etc etc. You all get the point. I can't "find the time for anything" not that I am doing anything. Does that make since?
So my question is, to you lovely people that are retired with this monster. What are your tricks to staying motivated? to keeping busy? I know one of my issues is I am still pouting that I can't drive. Otherwise, I am sure I would be galavanting all over the place and have a reason for not getting things done. I just can't even get up the motivation to choose and watch a movie. I do watch a sh%^ ton of law & order! HAHAHAHAHAHA! I am old! Anyway, Any ideas, tricks, anything you guys do that you wouldn't mind sharing would be great. If you don't want to talk here in public message me and we can chat there or I can give you my email. Or, if you have my email. feel free to shoot me one and we can chat it up. At least then I will be getting something done! lol.
Anyway, Happy Monday to you all and remember, I love your faces!
Love,
Rob
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rlh1974
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Been there, done that and still struggle with that battle every single day. It's an ongoing process, one of which I'm not sure I will ever get completly through. Looking at a pile of diahes, or repeatedly smashing down the trash to avoid the 20 yard walk to the dumpster. Sometimes just setting another bag in front of the trash can to catch the overflow to postpone the walk. Some days I feel as though I have accomplished a whole lot of nothing, nadda. zilch ZERO. Then I think on it a bit well I got a shower or I managed to respond to someone's post.... I have to find victories in the small stuff that for so many years I took for granted before MS. I get alot of joy from my harmonica. It's not because I play it as much as it is something I am learning to do in spite of MS. Finding joy in small victories, like wow I have an empty sink, or I could wash my hair today goes a long way for my battle against my biggest enemy, feeling worthless. When those feelings get the best of me I just say, forget it, why bother, it will still be there tomorrow. It was a big turning point for me when I changed my perspective on things. Celebrating even the smallest of things changed my perspective, being grateful for the stuff I CAN still do, helps give me the motivation to fight through the pain. Some of my largest triumphs have not been glorious or even glamourious. Others would look at them, as I would have in the past as well, as routine. Celebrating the small victories are what keeps me pushing thrpugh those tough times, and that is a daily battle. I have to remind myself of the gifts the Lord has bestowed upon me in the midst of the adversity, chaos and confusion. Watching all I worked so hard for slip away, I had to find a way from the feelings of uselessness that were holding me back from being the best darn MS patient the world has ever seen. Knowing that every moment of every single day I do all that I am able, even if it's not much more than talking out the trash I celebrate the small victories as if I climbed Mt. Everest thst day, And In a way, I have.
Well said Allen. Having this debilitating disease does feel as though you have done a major climb, sometimes just going to the bathroom. Any accomplishment is an achievement. What used to take 10 minutes, now takes a hour. I can't rush any more or be rushed. I used to read 3/4 books a week, I can't even focus on that now, and latch hooking, that's gone by the wayside too. This forum is the only thing that gives me any motivation. Blessings Jimeka 🦋 🍫
Allen5280 to quote someone, who just said this "Well said Allen", Well said Allen. Now I know I'm not the only one. Motivation to do things is a big challenge. On of my favorite sayings is "Why do today, what can be put off till tomorrow" and everyday becomes the same. rlh1974 have you noticed that there is no longer a "work" week, which means Monday, Wednesday & Friday work day jokes do not apply to us anymore? So when someone asks me if I would like to do something this weekend, I always ask what day are you referring too? Just thought I would ramble on about this muse. As superman says, onward and upward.
Wow Rob. If I couldn’t drive I’d go absolutely nuts. When I do feel well enough to get out the door I go straight to my shop and piddle with my old GTO. I bought it to give myself incentive to get out of my recliner. It don’t work all the time but when I can I do all I can. The rest of the time I spend reading my bible and talking to my friends on the greatest MS site there is.😇😅🤪😝
Donnie, what I would give to even piddle around on a car again. I have over 100k in tools and can’t use a damn one! What year goat? My last hot rod went when my son needed braces! And I wouldn’t be able to work on anything anyway.
67 GTO with a built 455. I bought it in Nov. I sold my 79 trans am in May last year after my dx in April. Then I thought I’d never be able to mess with my favorite pastime anymore. But my best friend wouldn’t have it til he put me back in the drivers seat of an old hot rod. Without him it wouldn’t have been possible. I can’t do much but I do what I can.
I’ve said before how blessed I was to be 65 before ms reared it’s ugly head in my life. Though looking back it’s been showing up for years it never knocked me down.
As you said the other day I wish I could fix it for you and everybody else I would gladly do it. But til then all we can do is keep on praying.
however, more to the serious side, Rob. about 4 years ago my house mates said they wanted to get a small dog and would it be okay with me. Well, my thought was go ahead just don't expect me to have anything to do with it. I was too busy spending all my time in bed. They went to a shelter and found a dog who had been turn over by her owners because she was too difficult to deal with [my very learned response]. I fell in love with her. She is the sweetest cutest dog I have ever met. I now feed her full time. She eats better than we do. And she is so very picky about what she will or won't eat. To my knowledge she has never eaten dog food. Anyway I could go on and on, but the bottom line, she has helped me to take my focus off of me and given me something else to help focus my attention on. I get up every morning just to feed her. I take her out for drives around the neighborhoods. She loves to look at everything. I built a special seat so she could lay down and still look out the window. Many times the will "hang ten" with her paws on the window with her face staring into the wind. It is almost magic. I am now much more active [of course my recent treatment change to Rituxan Therapy helps make this happen] and I spend a lot less time in bed. My next endeavor is to start taking her for walks. Not for her but for me, but she gives me the reason to want to do it. You might want to consider it. That's my 2 cents worth.
I think that was an excellent 2 cents I had a dog called scratch and she kept me on my toes For the 1st 15 years of my diagnosis sadly she had to be put down at 14 1/2 but like you said one of the best medicines you can get I think a lot of people would benefit from a prescription PET 🐶🐰🐣🦉🐺🐷🐨🦆🐠🦑
oh I forgot to mention, I take drugs, lots of them and this month I have lots of doctor appointments to keep me busy. Peanut [the she dog] is the best therapy of all
I went from being a 12 hour shift nurse to a case manager to unemployed. If that isn'ta system shocker I don'tknow what is....but during this from 2009 to 2013 I got my Bachelor's degree with Magna Gum Laud honors and invited into the Master's program which I finished with a 3.43 GPA..not bad for a girl with MS although I have only had one job since graduating an d now I'm in a wheelchair full time so my husband has taken my car key away so I have lost all of my independence....I have a prescription at the Dr's office office I need to get as I am out of pain meds and I have no way to go get it....so here I am lying in bed, the least painful position waiting for an appointment Wednesday so I can at least get the script....then I have to wait for my trucker husband to get home to pay for it...
Not good talons girl i am in a wheelchair and don’t get out much but that’s more because of the cold weather or that’s what I tell myself but I do have my care workers coming in 3 times a day to help me if I want to go out and my cards if I want to do any shopping online or in the store I also now buy CBD oil on line it’s a god send I wish I had taken it years ago I live in the uk 🇬🇧 where the rest of my perceptions are delivered but being in a wheelchair should not mean you have no independence at all hope you find a way to at least get your meds as with ms we all know you need them so much good luck 🍀🍀🍀🍀
I know what you mean. I went from 90mph to 0 overnight. Except this guy isn’t a college guy. Unless it has some sort of motor, I’m out! I never should have graduated high school!
Allen said it so eloquently! I was thinking about this just this morning. It occurred to me that some victories may seem minuscule, but they’re victories, nonetheless. Success breeds success. Allen’s harmonica has been so good for him, and have you heard him play? Wow!
My tiny quilt group gets together once a week. We make quilts for a shelter for girls who have escaped sex trafficking and for hospice patients. I call it my “quilt therapy.” It’s amazing how motivated I am to get there each week and stay organized, but I know those gals depend on me. Having that purpose and feeling that joy in being with others who enjoy something as much as I do keeps me going. I think it keeps me from becoming depressed, too.
I pray you find an interest that gets you around other people, if possible, but at least one that keeps you motivated.
I know just how you feel I think it’s best if you save things till you have a good day not that there’s many of them but about once a fortnight I would get a day when my head did not feel like a giant cabbage and my body like a limp lettuce then I would get a bit done but those days are to few and far between.
I think its tough being limited but I really like learning. there are these things called MOOCS (massive open online courses). If you just google it they offer a few programs. Its a chance to think about things other than how much things are hurting and you can do it on your own time. I opt for the non certificate paths as they are free. just in case a new focus might help
I think Ms-Indestructible hit the nail on the head (which, I realize for many of us is a difficult task any more - hitting a nail anywhere near the head...lol). Anyway, the way I pull myself out of my "I'm totally worthless funk" is to take the focus off of me and focus on someone/something else. The days I have granddaughter duty I find I have so much more energy and incentive to get up and do. Or something as simple as going to a movie with a friend will give me something to think about and look forward to for days.
thank you for your post, Texandyroe , I do believe that it is good to have a pet to help shift our focus. Many times I don't realize I focus so much on myself. Movies or tv shows get tiresome after a while. I really believe in checking out rescue pets since they have had a hard life and can be very sympathetic to our needs. ~terry
RLH, I have that lazy retirement bug. My sister, who is dying of cirrhosis, lives with me and my brother, who is a head case, lives with me, too. I use them to keep myself from being so lazy. My sister can't do anything at all anymore. She gets confused walking from the bathroom to her bedroom. Sometimes she gets lost and the rooms are right next to each other. My brother is the dictionary definition of lazy. He works 5 days a month as a LPN taking care of a comatose woman. Perfect job for the lazy man. Since I can't send you my brother and sister, try this. Get a dog. They are good for the blood pressure, they keep all your secrets, they like to walk with you, they love you no matter what, and a nice dog will get us lazies up off our butts to do something. Fight the laziness. Exercise, cook, do whatever you need to do to keep from keeping that recliner warm. Do you paint? Try some paint-by-numbers. It will beautify your walls, and it will give you something to do. I wish you all the luck in the world. By the way, I have MS, Lupus, and Rheumatoid Arthritis. My dogs have helped me keep that under great control. Bless you. MsGelfling
rlh1974 I try to take a page from my 80 year old mothers play book. She says if I do just one thing each day I feel like I am doing good. It doesn't matter how small. It may just be getting out of bed or taking a shower ( which some days is a big achievement). I try to do small things. Some days it is throwing a load of laundry in the washer then I can rest while it washes. Throw it in the dryer and rest. If I don't feel like folding it I do the towels and underwear then they can sit in the dryer until the next day. Sometimes they sit in the basket for several days. I will fold a few things each day until they are done. That is something. I also meet with friends every Monday for brunch. They also have chronic illness. It gets me and them out of the house. Just make a list of things that need done and pick one for each day. If you can't finish that day there is always another day to finish. Well that is my method.
Hi rob I am in retirement here I am 59 years old I can tell you what goes on in the world 🌎 news and any kind of news do you want to know about the weather oh year we are going to have another nor’easter but I have power and haven’t been flooded out. I love when people call me and ask what I have been doing. Let’s see how can I say this NOTHING
Was that too strong sorry.
What I can’t stand is people you thought were your friends but now you don’t hear from them at all
Sorry for the attitude.
It’s been that kind of week I should have all my tax papers together almost but don’t my husband has been working a lot of hours he is one of those tree guy that are called out when trees come down that’s my life these days you know this MS MONSTER came into my life and I didn’t invite it not that any of us did. I wanted to do so much at this time of my life. But that’s not happening. Well I’ve got that off my chest. I hope you find something to do in the a.m. I think 🤔 I will get those tax papers together I do almost have them together.
I hope you have a better day, I really mean that. 😉🙃😀😆😎
ssdw1958 I live in MN - my husband works for the County. What a winter! If he’s not plowing/salting the roads all day & night - he starts @ 4 am to remove snow on the bridges b4 for the next storm (the OT helps). If the weather is actually nice - he runs the tree crew. There’s been zero time this winter to patch potholes! Our best friends/neighbors bought a different house almost a year ago - haven’t invited us over once. Kris
Rob and everyone else I just was reading a few of the posts I guess I have been to angry with my self. Maybe I shouldn’t be but you know when you have a bad day I just get frustrated and I shouldn’t bring it out but I do. Sorry about that but it is frustrating because my walking has gotten so bad lately. I mean just trying to get up to go to the bathroom is a challenge and it happens at night. Which frustrates me even more.
Don’t worry I think most of us have days like that and it does get so frustrating when are legs refuse to do as they are told hope you’re days get better 🎉🎁🎊
30 years and I am still not over it and I bet if we asked 100 MS sufferers if they had or even got used to it not many would say yes and it’s not because we’re soft or like to make complaints it’s just that we get used to having several things like dropping every thing like really bad spasms like legs doing the shakes like cutting into are fingers then some will go only to be replaced it will then effect your eyes 👀 then your body will become numb the list is endless and all the time you get so tired 💤 and just want to sleep 🛏 the fight is endless so sometimes I think we need to forget about the things we cannot do and remember most of us have the biggest fight of are lives (so what if now and then we get frustrated and complain )it’s that or this 🤪🤪🤪hahaha
@ssdw1958 I don't think we ever get over this monster within us. I have just learned to shift my focus. But it is okay to be angry. this monster is not fare and has take so much from our former selves. I don't believe I'll ever "get over" or "be okay" and that is okay. This monster has taken some much from us. Be good to yourself. Do other things or learn how to do things differently. I used to dance and I had to learn how to continue to dance with walking sticks. Life will change on way or another, we are here for you. ~terry
That is my point exactly! It is so freaking frustrating! Especially when all you want to do is go out for coffee. Or go out with a buddy! Oh right, can’t drive.🤬
I have pets that keep me sane, too. Three Chihuahuas, a pit bull names J, and my cat I call Rug because he is always under my feet no matter where I am.
rlh1974 Rob - I’ve been in this type of funk the last couple weeks. I had been working full time - had 3 girls playing traveling fastpitch (in 3 different divisions), all 3 girls bowling leagues and I was the neighborhood supermom who would invite all the neighborhood kids over for dinner (in the 15 mins I had b4 having to leave again). Then came housework. I would sprint thru the skyways and run down the escalators to get to work. Everything was in fast forward motion. 1 1/2 years after my symptoms started I was no longer able to drive and restricted to working part time from home. I got my 1st handicap parking pass on my 40th bday (which I thought was funny at the time - not so funny anymore). 9 months later I was taken off work permanently. BUT I get up early every morning to talk with my girls and kiss them b4 they leave for school & am here to open the door for them when they get home & ask about their day (and they ask about my day).I would have never been able to do have that without this dumb disease.
I could have sat here and wondering how in the heck I opened the dishwasher and forgot how to unload or where to put the dishes - or how I went into the bathroom to take a shower & blanked on how to do it - but I didn’t. I prepared myself all day to be ready to get up and open the door for them when they got home. Going up and down 5 stairs (holding the walls) to use the bathroom at least 15 times was enough. It’s the little things we forget to notice. It could always be worse.
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