How I manage to keep up ... things I wish I would have known at the start of all this

[jjs]

Hello! I just thought I would share how I keep up with things. I really wish I would have known this right from the start, so I thought I'd share in case it helps someone else. Also, please share what helps you; I still have a lot to learn!

MS hit me like a ton of bricks, but I think it was progressing all along and the ton of bricks was just a massive [pseudo?] flare. I continue to go downhill, but I no longer have the major [pseudo?] flares unless I do not stick to what helps (and that's what I am going to share below).

[I assume the flares are just 'pseudo' because once I learned how to manage my new life, the freakish things that were popping up stopped popping up. I just keep steadily progressing.]

So, here's what has helped. First and foremost, I am blessed with a ton of support. My friends and family recognized right away that my responsibilities needed to change fast, so they started taking over and doing what I could no longer do. This was definitely a learning process for all of us, and it has taken us all about 6 years or more of refining to get this far. Now I just do what I can, when I can, and if I cannot do "it", they do it for me. If I can do "it", they consider that a bonus.

It's such a blessing that they can look at me and know "mom is shutting down" or "mom is not thinking right" [meaning "mom needs help"]. I also have a friend that I trust who takes over in my decision making when I can no longer think for myself. From something as simple as what to eat, to the more complicated things and issues of life. I just say, "take over", and I can rest in that instead of stress out ... because STRESS is what makes everything worse for me. Which reminds me, it took me several years to realize that GOOD THINGS can be just as stressful on my body as bad things. For example, I LOVE to host families in our fellowship for supper, but I had to stop.

I separate my responsibilities in to several categories, and aim to do whatever I can get done in about 15 minutes, take a break (as long as needed), do another 15 minutes of work, take a break, do another 15 minutes, and so on. If I go much longer than 15 minutes, I need a longer break and do not get nearly as much done by the end of the day. So, pacing myself and taking plenty of breaks is absolutely key. If I can, I try to sit down while working.

Categories.
1. Things that need done daily-ish that I can usually do throughout the day.
Examples would be keeping the kitchen clean (the kitchen is used throughout the day, so I have several 15 minutes time segments for the kitchen), making my bed, keeping the living area tidy, and so on. I also have weekly jobs but aim to do one weekly job a day, that way a little something gets done daily. Weekly jobs would be cleaning the bathroom, vacuuming, dusting, gathering the recycle, laundry, and so on.

Lunch and breakfast: I try to get these things started the evening before so I'm not in the kitchen for an hour in the morning. When this happens, I get behind because I need to rest more.

I do the morning barn chores if I can. I really, really enjoy that job, so I try to keep it for myself. I love the fresh air, the breeze, the sunshine (or rain!), the animals. It's peaceful and brings me joy. My oldest son lives nearby, and he does the evening chores - they take a lot more strength and energy.

Another chore I LOVE and try to keep for myself is weeding the garden for 15 minutes a day. This is definitely saved for the morning, when it's still cool. In the heat of the summer, I do it as early as possible. I'm an early riser, and morning is my most functional time, so when it gets really hot I will weed the garden around 5 or 6 am. I have a small folding stool that I sit on while weeding, otherwise my legs give out.

I do not keep a list for weekly jobs - I just let them happen naturally. A list for weekly jobs seems to stress me out.

2. Things that need done that I can do, but they do not need done "now".
No timeline here. Just random things I see around the house and farm. I have a running list going in my bullet journal; every time I notice something that needs done, I write it on the list. Whenever I feel up to spending a 15 minute segment on this list, I go for it. Things on this list include: tidying the laundry room, sweeping the steps to the apartment above the garage (that's where I live; my youngest son lives in the main house; we share the garage and the laundry room), tidy up the feed room, cleaning out the van, consolidating the food storage buckets, organizing the pantry, and so on.

Sometimes when my daughter visits I have her help me with a '15 minute job'. We usually get a few jobs done

3. Things that can be done while resting.
Instead of watching youtube or netflix while resting, I try to do quiet things - like write in my journal, update the money, crochet, read, etc. Sometimes however all I want to do is enjoy an episode of Father Brown in which case I set a timer for half way through and see if I'm ready at that time to do another 15 minute job. It's easy to get so caught up in a show that I forget to work on my tasks and then I get behind and someone else has to do them for me.

4. Things that need done but I cannot do them.
Hoof trimming, heavy yard work, installing hooks for my hanging baskets, securing the quail pen, rearranging the chicken pens, making hay feeders for the extra goat pens, moving the cow's mineral block (that thing is heavy!), and so on. I have a running list in my bullet journal for these types of jobs. I mark the ones that are priority so they stand out above the ones that are not. Whenever my boys or my daughter and her husband have a little bit of time, they ask what's on the list. BEFORE I had the list, they used to ask and my mind would draw a blank; now I just let the list think for me.

Sunday and yesterday they all worked on making me a flower bed [on the list of course!] I could have never, ever done that myself, but they whipped it out in about a half hour each day.

A few more things I'd like to share. I cannot safely drive very far, so my driving is only to church and once in a while to town (both are about 5-10 minutes from me). My good friend takes me on longer drives, and I am sure to bring along my pillow and ear plugs so I can take a nap whenever I need to. My daughter takes me shopping in the bigger town once or twice a month. I use the electric cart scooter thing for the bigger stores. I stay in the car for the smaller stops. If I have to walk, I hold on to the cart (she pushes - it's too much work for me) and walk really slow.

Also, I've had to really lower my standards and expectations of myself. I used to have everything organized, tidy, etc, all the time. I have had to learn to let things go, let things wait, ask others for help, and so on.

I used to be very active and capable, so this new life has been a huge adjustment!!! But, once I got past the initial 6 years (or so), I've found that I've been able to actually enjoy the new, slower, more peaceful pace ... as long as my mind is not all wonky. If my mind goes wonky, then scratch what I just said! There's not much peace in a mixed up, crazy brain, but I'm learning.

So, that's what I have. Like I said, it took me along time to get to this place. I am steadily progressing with MS, but as long as I stick to what helps me, I generally am able to live a pretty fulfilling life.

What helps you??

[ReverseFlash]

Salutations.
Many blessings to you - you sound like you have a very well thought out plan and it sounds like a good one.
I am trying to find my way right now.
Still working a 40 hr week (not easy but I have no choice at the moment) and it gets harder and harder to do the tasks set for me but I use a 20 min action / 10 min rest plan. It works unless I'm overwrought with clean up so I think I might try your fifteen min plan.
I couldn't imagine doing all that you did, even before I was waylaid with MS, but all of my thoughts to all working out for you and all the strength that you need to succeed.


ReverseFlash...> Zoom?

[Mamabug]

Wow, jjs; I get tired just reading your management strategies.

Here are mine:

1. Hubby and I go out to eat 2-3 times a week. We eat restaurant leftovers for frequent meals. I cook once or twice a week; my adult son cooks once a week. Hubby does all of the meal clean-up. Other meals, we just find simple things to fend for ourselves. Adult son is often gone for some meals / works in a restaurant.
2. I hire a housekeeper that comes once every two weeks. Cleans the whole house, folds my laundry. (I take care of putting it in the washer and dryer between visits.) Housekeeper empties dishwasher if full, puts dishes away. If sink is full, housekeeper loads dishwasher. Hubby takes care of all of that between visits.
3. Hubby does most of grocery shopping. Son goes with me to one sorr of "alternative" grocery store once in awhile and helps with shopping after I tire and sit down.
4. I try to keep clutter picked up between housekeeper visits and we all pick up our own stuff before housekeeper arrives, so focus can be on cleaning, not avoiding our clutter.
5. I take care of banking online mostly. I do our own taxes.

[KoKo]

jjs thanks for sharing - great post!

I use similar strategies, that allow for me to stay in my apartment, living by myself.

I am able to do my ADL's (activities of daily living) by pacing myself, and taking short rest times in between.

Also, I am very fortunate to have two sisters and brother-in-laws who live close by and help me with stuff.

My younger sister comes over and helps me with my shower (she makes sure that I get up off of my shower chair safely)and also does grocery shopping, laundry and the floors (sweeping and vacuuming).

My older sister is a good cook, and brings over healthy prepared meals a few times a month, which is a real treat. She is always willing to do any other task that I need help with.

I keep a running list of odd jobs that might come up and that I am unable to do. That way they can take care of the tasks when they are already here, and I don't have to bother them at other times. I do my best to not have to call in between the times that they come over.

Pacing my activities, short rest times in between, and asking for help are key strategies.

Take Care

[jjs]

Salutations.
Many blessings to you - you sound like you have a very well thought out plan and it sounds like a good one.
I am trying to find my way right now.
Still working a 40 hr week (not easy but I have no choice at the moment) and it gets harder and harder to do the tasks set for me but I use a 20 min action / 10 min rest plan. It works unless I'm overwrought with clean up so I think I might try your fifteen min plan.
I couldn't imagine doing all that you did, even before I was waylaid with MS, but all of my thoughts to all working out for you and all the strength that you need to succeed.


ReverseFlash...> Zoom?

Oh my ... there's no way I could work!!! Everything I do is optional; I have help when I need it, and I use that help quite often. I just do the best I can each day, and sometimes my best is only managing to make a green smoothie for breakfast and do the morning barn chores. The morning chores are light - the hardest part is walking in the uneven pasture, and a walking stick helps with that. I just go slow and enjoy the scenery and animals. It wipes me out for several hours, but as long as I'm able to do it, I want to do it because I enjoy it so much. I used to do all of the chores outside, but now I cannot even carry a water bucket to the goat and chicken pens that are further away from the barn. Thankfully my sons take care of all the waters in the afternoon, as well as the other evening chores. I just get the fun/easy stuff. I foolishly thought I could tidy up the feed room, but my oldest son did that for me the other day. So thankful!! I wanted to, but it was just too much, especially since we somehow managed to skip spring and go right into the summer heat.

After I rest from the morning barn chores, I try to do my first "15 minute job", rest as long as I need to, try to do another "15 minute job", rest as long as I need to, and so on. My rests are usually at least a half hour, but often times longer if the job I just did was a little more difficult for me.

Good for you for still managing a regular job! That's something to be proud of and thankful for. I pray you are able to keep that up for a while yet. I'm sure it's hard, but what a blessing. And when you are no longer able to work, still do all you can. There is some truth in that saying "if you don't use it you lose it" although I know for many of us even if we use it we still eventually lose it, so I say use it while you can, the best you can!! I hope the 15 minute thing helps you <3

[jjs]

Wow, jjs; I get tired just reading your management strategies.

Here are mine:

1. Hubby and I go out to eat 2-3 times a week. We eat restaurant leftovers for frequent meals. I cook once or twice a week; my adult son cooks once a week. Hubby does all of the meal clean-up. Other meals, we just find simple things to fend for ourselves. Adult son is often gone for some meals / works in a restaurant.
2. I hire a housekeeper that comes once every two weeks. Cleans the whole house, folds my laundry. (I take care of putting it in the washer and dryer between visits.) Housekeeper empties dishwasher if full, puts dishes away. If sink is full, housekeeper loads dishwasher. Hubby takes care of all of that between visits.
3. Hubby does most of grocery shopping. Son goes with me to one sorr of "alternative" grocery store once in awhile and helps with shopping after I tire and sit down.
4. I try to keep clutter picked up between housekeeper visits and we all pick up our own stuff before housekeeper arrives, so focus can be on cleaning, not avoiding our clutter.
5. I take care of banking online mostly. I do our own taxes.

I was just thinking about a housekeeper the other day. I was thinking how I could have one of my friends or my daughter do it (they'd be happy to), however it almost seems like it would be nicer to hire someone so it's more of a working relationship. Do you know what I mean?
Do you have any thoughts on that? I actually used to have a few cleaning jobs on the side. I got in to a routine with the customers and it worked out well. Small chit chat and niceties of course, but mostly it was a job. I don't think I want to "hire" a friend or my daughter to do a job ... I just want them to be my friends and my daughter.

Meal times have really changed for me. One of my passions used to be cooking and baking. I'd make meals every night for several adults, and bake things to give away as gifts to the elderly and whoever was in need at the time. When I first started having problems it was so hard for me to stop the meal thing. It was just in my mind that I had to make supper. I was all in to whole foods cooking, nothing boxed. At first my friend suggested I cut down to three days a week - M, W, F - that way I could have a day in between each to rest. The changes evolved from there, and now I make supper once or maybe twice a week for only a few people, and I take plenty of shortcuts, including making very simple meals. Gone are the days of making exotic meals from scratch!! No more homemade tamales, papusas, momos, lasagna, and so on. Now I just put some rice and frozen veg in the rice cooker, and add hamburger or a can of chicken (or meat in the crockpot).

It sounds like your husband and son are very great support for you! I'm sure you really appreciate that!!

[jjs]

jjs thanks for sharing - great post!

I use similar strategies, that allow for me to stay in my apartment, living by myself.

I am able to do my ADL's (activities of daily living) by pacing myself, and taking short rest times in between.

Also, I am very fortunate to have two sisters and brother-in-laws who live close by and help me with stuff.

My younger sister comes over and helps me with my shower (she makes sure that I get up off of my shower chair safely)and also does grocery shopping, laundry and the floors (sweeping and vacuuming).

My older sister is a good cook, and brings over healthy prepared meals a few times a month, which is a real treat. She is always willing to do any other task that I need help with.

I keep a running list of odd jobs that might come up and that I am unable to do. That way they can take care of the tasks when they are already here, and I don't have to bother them at other times. I do my best to not have to call in between the times that they come over.

Pacing my activities, short rest times in between, and asking for help are key strategies.

Take Care

We sound very similar - I'm sure I could learn a lot from you. I think we could be friends if we lived closer! And how wonderful for all the help you have from your family. I am so sad for people who do not have the kind of support and help we have.

You are able to shower but you just need someone there to make sure you get in and out ok? Do you have a bar on the wall or anything? I get worried about that. I usually only shower once a week because it takes so much energy. I text my friend when I'm going to shower, so he knows "just in case" he doesn't hear from me after that.

My family and I also get worried about me being home alone and walking down my apartment stairs. I have a hard time with it and actually sprained my good ankle at the end of december. Thankfully my youngest son was there and carried me back up to my apartment (I went to the doctor the next day to confirm the sprain and got a nifty boot that helped a lot). My brain just slips communicating to my legs when I walk down steps or on uneven surfaces. Now we have set a rule for me to not carry anything down the stairs. I must focus all of my attention on simply walking; it cannot be divided between walking and carrying anything. It was really hard to hurt my good ankle ... it put so much more stress on my right side. Now my left ankle that was sprained will often ache and swell because I have so much trouble with my right. Blah!

My system works well for me, but I still struggle with life in general. Sometimes I think I am ok to do a little only to find out that I was wrong. I had a physical last monday - and oh my I have really gotten so much worse. I cannot believe I used to be so in shape and muscular. Now I cannot even walk on my heals. My right foot especially just flops down to the ground with each step. The first thing he asked me to do was crouch down and stand back up again. I'm telling you the truth here - I just stood there and stared at him blankly, trying to figure out how I was going to accomplish that. He did it himself to show me what he meant, because I was just standing there baffled. All sorts of things were going through my mind. I realized there was absolutely no way I could do what he asked me to do, but that used to be part of my normal exercise routine! I used to squat down with my bum almost to the floor and stand back up again over and over, no problem. I couldn't even stand on the doctor's scale without holding on to the wall and I had to be caught a few times to stop me from falling over ... so dizzy and off balance. This is me!! And I had to be caught a few times while trying to stand on one foot. I used to really be in to yoga and had absolutely no problem with balance and coordination, but now I cannot even stand on one foot without having a spotter to catch me when I start falling over.

That physical totally wore me out and I'm still recovering 5 days later. He said, "how long can you stand up?" I said, "What do you mean stand up? Like, leaning on a wall or something?" Because that's how I stand up now - I cannot just stand there unsupported. I did not realize this until quite recently. He said, "If I asked you to stand outside, unsupported, and shake hands with everyone who came to the door, how long would you be able to do that?" My friend answered for me - 5 minutes, maybe. I cannot just stand in one spot. I have to keep moving. If I just stand there I fall - my legs give out from under me. But if I move around a little, I might make it a half hour ... but be totally worn out for a day or more afterwards.

Anyway, just getting this all off my chest I guess. I have really had to face reality this year. It's been a few years since I've seen a neuro and I need to find one I like and just STICK WITH IT until we get a diagnosis, no matter what it takes. I have an appointment with my GP this coming tuesday. I am going to get a handicap thing to hang in the vehicle, and I am going to ask him for a referral to an MS specialist in St. Louis. I have a few in mind. My good friend has already agreed to cart me around and do whatever it takes to see it through.

Thanks for listening!

[KoKo]

You are able to shower but you just need someone there to make sure you get in and out ok? Do you have a bar on the wall or anything? I get worried about that.

jjs

Taking a shower eventually became very risky and stressful for me. I had a shower bench in the tub, but couldn't manage to slide my body and get my legs over the side of the tub. When my sister tried to help, my legs would get spastic and resist.

But then I found the most fantastic shower chair that enables me to shower safely, all by myself! The shower chair swivels, and glides over to the center of the tub.

This chair also has a padded seat, back, and armrests which is wonderful.

I'll tell you how easy this is. With the shower chair on the outside of the tub, I back up to it with my walker and sit down. It has a seat belt, which I fasten, so I don't slide off the chair.

Then I push a knob to swivel the seat. I am able to lift each leg over the tub, using my good hand/arm. Then I push another knob to glide the chair over to the center of the tub. Very little effort is needed.

The faucet knobs are within my reach, as is the shower wand (sprayer) and soap. I can lean over some without worry because of the seat belt.

When finished, I push the knob to glide the chair over, lift each leg out, and swivel the seat, facing my walker again. Then I stand, and grab my walker. Done!

Because I am sometimes weak after the shower, my sister is there, just in case I need help standing up. But so far I'm able to do it myself.

I put the url of the youtube video of this chair, and also the chair's website in my profile, if you would like to see it.

Take Care

[jjs]

jjs
I put the url of the youtube video of this chair, and also the chair's website in my profile, if you would like to see it.

I cannot seem to see any link on your profile ... I thought it might be because I was on my phone, however now I'm on a laptop and I still cannot figure it out!!! But, the seat sounds wonderful! I am not that bad yet, but it is good to know for the future. I am getting handles installed in various places - that should help a lot. It's crazy how many ways we adapt without even realizing it. For instance, I never noticed that I hold on to the walls when I shower until recently. Handles would be ... handy!

[Mamabug]

I was just thinking about a housekeeper the other day. I was thinking how I could have one of my friends or my daughter do it (they'd be happy to), however it almost seems like it would be nicer to hire someone so it's more of a working relationship. Do you know what I mean?
Do you have any thoughts on that? I actually used to have a few cleaning jobs on the side. I got in to a routine with the customers and it worked out well. Small chit chat and niceties of course, but mostly it was a job. I don't think I want to "hire" a friend or my daughter to do a job ... I just want them to be my friends and my daughter.

Yes; I hire someone. His fee is more than reasonable; I've hired others in the past who charged more. I agree with you about wanting friends and daughter to just be that. When I hire someone, I don't feel badly about having expectations, and it might feel awkward if it wasn't just a business relationship.

Over the past 10 years, I've had a number of different housekeepers (4). Some lasted a year or so. The one I have now has been probably 4 years or more. They are all different. Some have a list of things they do and things they don't, however long it takes. Some look at it as their business and kind of call the shots. Others look at it as they are working for me, so they are more than willing to let me call the shots. Some are much more flexible and have a set amount of time they spend and try to get everything done. They might charge extra if they have to stay longer.

I found one of them at a local college by advertising in their career place. Was a good part time job for a college student with flexible hours. But, then I had to find an alternative plan during the summer because they were gone. I found another on Craig's list. I found one by calling the phone number on their van, which I noticed at Wal-Mart. And, another advertised by placing business cards at a local diner.

We've always been friendly, too. Chit chat, like you say. One or two even became facebook friends. But, still, it's mostly business.

My daughter often helps out when she visits. She has sometimes helped with de-cluttering kinds of tasks; or re-arranging, rather than just "cleaning", since I have someone to do that. She helps with things that a "daughter" can help with and a "housekeeper" can't. She has less time to help with those things now, as she had a baby and a toddler. But, she used to request "projects" to help with every time she came.

Meal times have really changed for me. One of my passions used to be cooking and baking. I'd make meals every night for several adults, and bake things to give away as gifts to the elderly and whoever was in need at the time. When I first started having problems it was so hard for me to stop the meal thing. It was just in my mind that I had to make supper. I was all in to whole foods cooking, nothing boxed. At first my friend suggested I cut down to three days a week - M, W, F - that way I could have a day in between each to rest. The changes evolved from there, and now I make supper once or maybe twice a week for only a few people, and I take plenty of shortcuts, including making very simple meals. Gone are the days of making exotic meals from scratch!! No more homemade tamales, papusas, momos, lasagna, and so on. Now I just put some rice and frozen veg in the rice cooker, and add hamburger or a can of chicken (or meat in the crockpot).

It sounds like your husband and son are very great support for you! I'm sure you really appreciate that!!

My husband and son are very supportive and helpful. I've been living with this illness for 16 years. That's almost 1/2 of my marriage (we'll be married 34 years in October). And it's more than 1/2 of my son's life. He was 11 then and is 27 now. Having a mom with a disability has been most of his life.

My daughter is also awesome, but she lives 900 miles away. I feel blessed that, in spite of that, we've been able to see each other frequently. We go there to visit and they come here; she's always made visits "home" a priority. She's a big help when she's around, and expects very little from me in return when I'm there.

I can do all my ADL's.

[KoKo]

I cannot seem to see any link on your profile ... I thought it might be because I was on my phone, however now I'm on a laptop and I still cannot figure it out!!! But, the seat sounds wonderful! I am not that bad yet, but it is good to know for the future. I am getting handles installed in various places - that should help a lot. It's crazy how many ways we adapt without even realizing it. For instance, I never noticed that I hold on to the walls when I shower until recently. Handles would be ... handy!

jjs

When you click on my user name, then click profile, then you'll see two choices - Activity and About Me.

The urls should be visible when you click on About Me.

In any case, glad that you are able to stand for your shower!

Take Care