After writing the post about the many faces that are hidden with MS, I was speaking with an individual in the chat room and she mentioned sometimes she felt like a potted plant. After a we messaged back-and-forth a bit it really struck home that it's something I bet you a lot of us feel that have advanced disabilities.Does your family or caregivers often park you some place near a window to look out or in front of the TV to zone out and walk away and leave you there for hours. That my friend says what I'm calling the potted plants syndrome. All we need to thrive and be happy is to have a view to stare at or a tv to numb us to death. While the rest of the world, our families, our caregivers, and even our friends are busy carrying on they're normal activities without thinking we might want to join in. O sure we're often fed 1st and given something to drink so to them our basic needs are met so they don't feel guilty about leaving us. Then as the egg go have fun or drive away. You're left to scream inside again what about me.I want to go to. I want to be involved in the world around me. Not just set in this window like a potted plant too watch the world go on around me.
In fact it's happened to me again this past Monday on Memorial Day. My son had a bunch of his friends out to BBQ and play on the dock on the lake. I didn't expect to go because it was a young group and that was OK. Besides it was kind of cool and it wasn't an ideal time to be down on the dock. But then my youngest son shows up and goes down on the dock .My husband has been cleaning the seats of the pontoon and he winds up just staying down on the dock and hanging out with everybody. He comes up at lunch time and fixes me, get this, a peanut butter and jelly sandwich and checks on my drink. Then disappears back down to the dock without asking if I'd like to go with a pack of pork loin under his arm so he can go down and fix sandwiches for people down there with park loin on them. And I got peanut butter and jelly! 😬 I had the button for the cable in front of me and my faithful notebook to play games with but it wasn't quite the same as being done on the dock watching everybody have fun and laughing along with them.
I understand as I'm sure most of us with the advanced disabilities, that it takes extra effort to include us and take us along because of our disabilities. But aren't we worth it? We want to go without hearing all the complaints this is so hard or I just can't do this by myself, and on and on and on. When our disabilities become advanced the people around us simply don't understand that it takes thinking outside the box and using modifications to make going along with the group possible. I have trouble lifting my leg high enough to step onto the golf cart too. Enjoy a pretty ride around the neighborhood on a Sunny day. To modify that experience and make it possible I need to do is take a small piece of plywood and pull the golf cart up next to the steps leading out of the laundry room. Then I put the plywood on the step of the laundry room and over to the golf cart. With the help of my faithful assistant I ease along the plywood doing the I can hardly walk shuffle that many of us do and before you know it, I'm setting in the golf cart waiting on a lovely adventure around the neighborhood. The plywood acts as a small ramp and allows me to get onto the golf cart without having to step up on a ten inch step.
Just remember when you're forced to think outside the box or make modifications your safety comes first. Don't risk having an accident or getting hurt to take part in an activity because in the long run it will set you back.
This feeling of being a potted plant really compounds the feeling of loneliness, isolation, and being left behind as the world goes on around us. Find support that will help you to meet your needs. Find others in the same boat that you are in and be able to talk to them to help ease your feelings of isolation and pain. Start up a book club with people that are disabled like yourself. You can talk every 2 or 3 weeks and go over the feelings you had about the book. It's amazing how connecting on various levels help to ease the pain of being isolated. Again, we humans are gifted with an amazing power to think outside the box and get around obstacles that take away our happiness. If you need more post in this chat room dealing with various subjects simply let someone know and we will do our best to meet your needs. Please simply don't set at home and feel like your world has ended and you waiting on the final journey to ease your pain and isolation. We're here to help just let us know how we can do it this for you. Remember together we are stronger! Fancy59.
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Unfortunately some people don't have anyone to ask for help. Just think if you're all alone with no spouse and no children, your options to ask for assistance are really limited. 😟 Perhaps they could try a senior citizen center because they often have facilities that they can watch people who need total assistance but still allow them to get out and mangle with a group and have activities to participate in. They even provide transportation with the wheels van that will well allow people to access the van with wheel chairs or power chair because they have chair lifts.
My county has one that runs through the local bus service and is available to both the handicapped and anyone over 65, but you have to fill out an application first and be approved. The charges run anywhere between $4-$12 per one-way trip, you may have to share the ride with someone else, and shopping/social visits are limited to specific days of the week. They use a combination of cars and handicapped-accessible buses, depending on the need. I want to sign up for it, just in case.
Yes in my county in Kentucky the senior citizen center offers rides with their wheels bus and it has a handicap lifted everything.They will run you on errands on Tuesday and Thursdays as long as they're close by and they charge $6 to go out with them. Then. On Monday Wednesday and Friday. You can go to the senior center and participate in activities and they feed you lunch and I think it's $5 for the day.They also have a more hands on activity center for those that need a lot of help. And people go there for the day that are disabled and they are taken total care of whether they are and they can stay from 8 AM till about 4:30.It's a good program and they're nice ladies left run it. Fancy59.
I remember when I would go to family events with my husband when I was VERY sick with my MS. He would plop my wheelchair in a corner of the room and take off to visit with all the family. I had to wait to get served food or a drink. I vowed that I would find a way to get better, and by one way or another, I have! I’m not dependent on anyone anymore. He is shocked, my neurologist is shocked, but I made up my mind to NEVER be in that situation again. It was humiliating and heartbreaking to feel like I was a burden to him. It took a long time, and I still have some issues, but I’m independent. I’m sorry for your experience, Fancy, I know it all too well. Love you.
You are so sweet to ask. My back pain is really bad, but I’m going to have back nerve ablation again on June 9. I am very excited to try again. My doctor said that he will look at my most recent MRI on my back and hopefully we will get the correct nerves done! I just try not to let it get in the way of doing things, but it is really quite excruciating! I hope you are doing well.
Kelly, Being stuck anywhere while everyone else catches up and laughs and carries off is a miserable feeling. I can understand your frustration and I have often felt it as well. I am so proud of you that you have been able to overcome the beast and become independent again. Sometime when you have time you should write a post about what you have done to improve your life and become more independent again.I'm sure everyone in the chat room would be anxious to learn more about it. I know I am. 🤗 Fancy59.
Since you posted that, I've been thinking that there seems to be a need for venting on lots of subjects and maybe we could, say about once a week, have a post like this as a general invitation to sound off on a subject that will provoke lots of people to let out the feelings that are best let out. I was thinking of Boredom as a topic, and the Potted Plant Syndrome is spot on for what I was thinking of so ...
Yes, I have had more than enough of being parked and left with nothing to do or think about. Over the last couple of years I spent a LONG time in a total of 5 hospitals and 2 care homes, after a combination of a stay in Intensive Care having been found unconscious with hypothermia, and then a broken leg just as I was due to go home. The first care home was a neurological rehab centre, in theory, though it had turned into a long-stay care home for residents with complex needs, and the second was a care home for over 65s (which I am not), mostly with dementia (which I do not have) which was the only place they could find that would take me when Hospital 5 wanted me out. Hospital 4 was a rehab unit, mostly for people who'd had strokes.
Both care homes had the habit of parking residents in front of the TV (For UK members - all hospital and care home TVs are tuned permanently to ITV. I don't know what they equivalent US TV channel would be. If you like Emmerdale, The Chase and Tipping Point that's fine.) Care Home 1 put on entertainments every so often, and residents would be wheeled down to the entrance foyer area, and parked in a semicircle to be passively entertained. Most residents were in stroke chairs - armchairs on wheels rather than wheelchairs. Actually most residents spent their lives either in bed, in a chair beside their bed, or parked in front of the TV in the day room. It was the same 10 (out of 40) who appeared at all there events. There were only myself and one other who had "Self propelling" wheelchairs and I was the only one who actually propelled myself around the building. Most times I was parked in a passive semicircle I would take myself off and wander around, as much to make a point as anything.
Care home 2 had a policy of removing footplates from wheelchairs and parking them with the residents' feet on the floor - they said because if someone with dementia forgets they are in a wheelchair and stands up on the footplates they can tip the chair over. I had to get actually nasty with them to get them to leave my feet on the footplates and let me move myself around!
Being just parked is BOOOOORRRRRRING!!!!!
Being in hospital is BOOOORRRRING!!
Being ill is BOOORRRRING!!!
Being unable to walk is BORRRRING!!
Being stuck in bed with a thigh-length plaster cast on your leg is ABSOLUTELY MIND NUMBING !!!!!
Why why why are caring people so unaware of the impact of boredom? Or the fact that just having legs that don't work doesn't necessarily mean that your brain is no longer there??
(In intensive care you get treated like a lump of meat with neither thoughts nor feelings - OK what happens in ICU is another story altogether and yes I have sounded off in the ICUSteps group many times. When I complained of boredom there, the staff were astounded, like the idea that anyone could be bored of lying in bed all day with nothing to do was totally weird,)
Both care homes kept trying to jolly me along into being wheeled into the dayroom, and really didn't get why I'd rather be in my own room where at least I could chose my own TV channel ... (I watched more Countdown than is good for anyone!)
WOW!! You have really experienced a lot of hospital and rehab life!! I have worked in all those areas, I have been hospitalized more than a few times and helped various family and friends get through rehab and lots of hospitalizations, and even hospice on more than a handful of occasions , .. my heart goes out to you and I feel as if you have a strong will and determination that many of us can only hope to have..
Kit, In the past year I have been in the hospital twice. Once for a very bad episode and a severe illness and the other time for knee replacement. The. 1st time I was in intensive care for a couple days but I wasn't really much more than a vegetable then and laying there was OK with me. Period by the todd however I got out of Intensive care the boredom set in as you sat.They didn't want me to leave my room because of the illness I had suffered.The caregivers came around not nearly often enough. And you would call and call to get help and no one would show up because they were so short staff.Then some people simply didn't like to work and avoid it like the plague.The 2nd time I went to the hospital. I had my knee replaced and that was for only a couple days and laying in bed. Was? OK. Because my knee hurt like you know what I went to a nicer care facility on this visit and it was much more pleasant.They actually had activities for residents every day.They played bingo twice a week. had residents play balloon volleyball usually about twice a week, showed movies, had singers come in,etc etc. They still however were extremely short staffed and you could put your button for assistance and sometimes you would have to wait for an hour or longer sometimes 2 or 3 before someone showed up to assist you with whatever you needed. I was in my room one time watching the little old lady. They called Granny fall to sleep on the edge of her bed across the hall from me. She was nodding off so hard she was in danger of falling. From the bed. No one came by to check on her for at least an hour and she was bobbing worse and worse and in serious danger of falling off. The bed. I finally had to call the front desk and tell them that Granny in room such-and-such was getting ready to fall off her bed because. She had fallen asleep on the edge of it and they needed to hurry to her room and catch her before she had an accident. That did it, at least 3 or 4 people came running down the hall to assist her and got her into bed before she fell from the bed. What a shame it comes to that before. You can get help. But that is often the case because these assisted living and rehab centers are so short staffed.
Having a weekly column to talk about things that bother us would be an excellent idea. We can allow people to vent when they have issues but by offering it up to others in the chat room, I am certain some good ideas could come of it to help alleviate whatever is being vented about, at least to some degree. Fancy59.
Good for you.I used to be a lot louder than I am now but I find the longer I become and the more I become disabled the quieter I am. There is also a continual negative comments I get from my significant other that makes me shut my mouth more than I should cause. I simply get tired of the attitude that is always fired at me. His attitude stinks and so does his care more often than not. . What happened to in sickness and in health? That is what I want to know because we both said it in our vows more than thirty five years ago it makes me sad to think of it. The really sad part is that I am basically stuck here and depend on having his care, however subpower it is because without it I couldn't go on.😮💨😬😪 Fancy59.
There's a big difference in PB&J and pork loin. Dang! Did you point that out later?
If not for my (desk) job, I would be a potted plant. My boys are grown and live in other cities. So no family gathering for Memorial Day. Monday was loooong, even with a jigsaw puzzle to work on. A book club is a good idea!
I agree totally! The sad part is he didn't even think about it and didn't offer me one because he thought pbj was good enough for me! I had to give up my superviser job about 7 years ago because I decided that work wasn't going to kill me. It was a job full of stress and the stress was made worse by having a lousy supervisor and an even lousier director. They didn't have a clue how to run an organization of almost 700 people fairly. Fancy59.
wow has anyone turned in the places that just leave you ???/ when it happened to my dad i complained alot found out the ones that were doing it all were owned by one company out of state and wow can ya believe it they were asked to change or move and then moved....no loss....can't understand people don't check on there families to see that they are taken care of ...too many sitting in wet diapers...the stench was so bad when you opened the door to go in....
The 2nd place that I stayed in for my knee replacement yet was rated extremely high yet they didn't have the staff to support all the patients they had. No one wants to work anymore because they can get as much or more sitting at home on their butts collecting their governmeant support. I did complain to the management because my room hadn't been swept in a week and I hadn't had a bath in 8 days. I told them that was ridiculous and I wondered what the State would have to say about that. Well as you can guess my room was swept that same day and I had a bath that evening and then got on the bathing schedule of twice a week which was ok, but not the best.My family would come to visit and my husband would be incensed about some of the care I received and he swore he was going up to complain to the management but I don't really think he ever did. He talks a good talk but then sometimes especially when it's for me, he doesn't follow through. Fancy59.
Fancy59 you’re a prolific writer. Have you ever thought about putting your writing into a book? A compendium of insights into the world of people with MS …
Yes, I had 10 chapters complete in my notebook on a book I called "An Insiders Guide to MS". One day my notebook fell off my Jazzy and I accidentally ran over it. The files I had my book chapters in were completely destroyed in the accident. I took it to a computer repair store and they spent weeks looking through it but they couldn't find any trace of my book chapters.😒 I've started to redo it again but it seems my heart's just not in it this time and it's harder for me to focus and complete it like it was 2 years ago. Fancy59.
You are way too nice. I hope you told your husband what you shared with us. For instance tonight my friend who supposedly is to “help” said she’d empty the dishwasher & clean- up the kitchen, My Sig.Other (been together 29yrs) continued to watch TV. I’m saying in my sweetest but loud enuf so there was no question as to what I was saying., (That are 2 of us in our home & one of them is having major problems here.) No comment, he continues watching TV. Well, standing/walking is difficult for me;he knows that. And, when we first got together I told him two things. & was very specific: 1. I am B NOT domesticated & 2. If you like to eat I hope you can cook because ai won’t! (I didn’t tell him I kept my home clean & expected the same of him! He found out real quick about tha!) Well. I have a load of laundry in the dry. I meant what I said earlier - hope he likes to pair his socks to match & his underwear just thrown in his drawer , not folded ! He can’t help me now - what’s going to happen when I can’t stand at all!
I stopped doing my husband's laundry since it was really the only household chore he would have to do if I didn't. Otherwise, he wouldn't care how many dirty dishes stack in the sink or how dirty the rest of the house is. He doesn't fold or put them away. The clean clothes are just put back in the laundry basket and back in the closet. He has a few things hanging in the closet that he rarely wears.
Because I am so disabled, most of what I used to do in the daily household chores falls to my husband. He cooks dinner, he cleans up the kitchen, cleans up the bathroom, occasionally throw a load of laundry in, gets me up in the morning and puts me to bed. So he pulls his share but he simply doesn't want to take care of me and as a result his attitude toward me is usually either discuss or anger. And either he simply doesn't realize his own strength or his touch is often about as gentle as a jackhammer. And the final kicker is he has no patience. He's always in a hurry and as we all know, those of us with advanced MS, it's hard to be in a hurry. I'm stuck because I'm dependent upon someone to help me and take care of me. And unfortunately he is what I have. As we all understand though, Karma can be a powerful thing, and someday I fear he will find out exactly what it is to be dependent upon others who really don't give a s**t. Fancy59.
I feel sad reading these posts . My mother had MS and was in a wheelchair at least the last 20 years of her life or more. She definitely would be planted by a window to watch whatever was going on or to watch TV. She acted like she was content. I don’t know that any of us asked her if she was bored. We’d ask if she’s ok and has what she wants. She put on a good face. I know she was very aware of burdening my dad.
I guess as good a communication as possible on both sides is helpful.
No doubt about it. It brings tears to my eyes to think about your mom sitting by the window for 20 years. I understand she didn't want to burden your dad but what about her life as well. After raising a family and being a wife for many years sitting by a window, looking out side, had to be an empty shell of existence.The more we learn about this disease the more we understand how it works and how our body responses to it. Fancy59.
All of your comments and observations really make me sad. I can still walk (but I have a point when I'm Done. But sometimes feel like a plant because when non family members are around me (like church) not many people talk to me. I can sit in a crowded room and have nobody say anything to me. It seems they are all college grads and all professionals and I am not. I feel quite stupid around them. So just keep that in mind that it's not "just" disabled people who are forgotten. Newish people to a place can be ignored as well.
The 1st thing you need to understand is that you are not stupid. They choose not to try to relate to you or speak to you because you are a different from them. They see your disabilities and mistake it for lack of mental facilities. I have read many of your Post and your intellect rates higher than most professionals I have met. Real life experiences, thinking outsìde the box which we must do daily in order to survive, is worth thousands of books full of knowledge. Then there's the fact that many of us have degrees that surpass theirs but we choose not to be petty and look down our noses at them. Well, actually, many of us would have to look up our noses at them! LOL! 🤣😂😁 Fancy59.
They don't see disabilities with me. Most of the time I'm doing pretty good! Since I am not spoken to much, I don't have to word find to talk to them. I hang on tightly to stair rails to go up/down any stairs. I rarely use my cane! They already have their groups of friends and that's who they speak to. I am adding more things to get involved with. I suppose that may eventually "help me" to show my disabilities!
This post spoke volumes to me. I have an absolutely wonderful husband but occasionally I get parked. Sometimes it’s with my back to whatever is going on. I walk at home but if we go out I’m wheelchair bound. My disability was fast I went from a normal functioning employed person to disabled in 18 months but that’s another story. I can’t do anything really. My husband does it all. Laundry, cooking, cleaning, etc. It’s really hard because there are many things not done to my specifications but I bite my tongue because he’s trying. The thing I can’t get passed is I’m treated as if because my legs don’t work, my brain mustn’t either. He and our sons frequently do not listen to me. I tell them something and it goes in one ear and out the other. It’s really, really hard for someone who was basically in charge of the house and many other things to be reduced to a spectator. I’ve gotten very quiet because I don’t want to cause too many waves but I do occasionally say “I told you so… oh wait, you didn’t listen so that’s what you get”.
I love the idea of a book club!! I have always been a reader and now I’m voracious. Thank heavens for online libraries!! I was in a book club with some friends but Covid and one of them moving out of the area ended that.
I’m gratified to know that I’m not the only one dealing with some of these issues. My life changed so dramatically in such a short period of time that my head sometimes feels like it’s metaphorically spinning in addition to the constant spinning feeling MS has gifted me with.
You ladies give me such a positive feeling because I realize I’m not alone. Thank You!!
We are survivors in this chat room and that makes us all amazing! Most people that would have too deal with on a daily basis, the challenges and changes in our bodies that we deal with, would simply wither up and die. But we are made tougher stuff and must stick together to support each other and to take care of each other . Remember together we are stronger. Fancy59.
KipAngCan, Welcome to our family. I have not heard from you in any post that I can remember. I was t rying to look you up just now and it said that user did not exist. Make sure you go through the log in process and get your user name registered so we can talk back-and-forth without issues. l I am glad you have found us. Through sharing of common experiences there is much we can learn from each other.y I look forward to talking to you soon and remember to take care. Together we are stronger! Fancy59.
Hi!! I’ve been on here for more than a year and read the posts everyday but I don’t often comment. When I looked at my profile it only gives a logout option. I thought I’ve been logged in all along. 🤷🏻♀️
I enjoy being on here because you all are positive and I don’t feel so alone. I was on a page elsewhere that was good for the first 2 days then it turned so negative that I left. I was newly diagnosed and in the hospital and didn’t need or want to read about their lousy husbands and friends and family. I’ll look at my profile and make sure it’s up to date and accessible. 😊
You're good to go now. I just hit your log in and it worked just fine. I hope to be speaking to you more over the next few days and weeks. Take care. And remember together we are stronger! Fancy59.
Thank-you-ma'am. Sometimes, it helps me tremendously to write down my feelings and thoughts and share them with others because then I get feedback from other people and like everyone else, I don't feel so alone. Fancy59.
I also read a lot of the posts & rarely comment. I got on TikTok to keep up with my grands but now they are rarely on there BUT I’ve found several people on there that have MS. If you log on and search #mstok or even #ms you will find all sorts. I still kind of just lurk there as well. Just not comfortable being on camera. Plus My typing skills aren’t up to par. Can’t text with My thumbs.
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