Isolation is starting to get to me. - My MSAA Community

My MSAA Community

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Isolation is starting to get to me.

PSNuser profile image
21 Replies

at first i was telling myself just more time for movies, games etc. but I got in this phase thinking about old relationships. That got me on a whole spiral. Just trying to learn some coping mechanisms

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PSNuser profile image
PSNuser
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21 Replies
lbenmaor profile image
lbenmaor

Participating in our group is a great 1st step. Nice people with great suggestions!!

Leslie

donna0329 profile image
donna0329

Boy, can I relate to your post! 🤗

Social isolation has contributed greatly to my depression. Especially during the pandemic, as an immune-compromised MSer, it was really hard to cope.

Coming here to the MSAA Chat has helped me greatly. Also, I recued a kitten nearly three years ago. My kitten is now a cat. Haha. I got her from my local shelter. She really rescued me. Perhaps you can get a pet?

How about volunteering opportunities? Helping others keeps the focus off of your problems. We all have our struggles. I have good days and bad days, too. MS complicates life.

Please hang in there and come here often to connect with the others here that truly "get it." May you find peace and happiness. Blessings! 😇🙏🙂🤞😽👍

PSNuser profile image
PSNuser in reply to donna0329

I have a dog he’s cool. But the type MS I have is my synapses start flaring up with physical activity and I start stumbling around possibly falling so I don’t go anywhere. Its the fear of leaving the house but I think its justified in this case.

donna0329 profile image
donna0329 in reply to PSNuser

Perhaps it's time to get a walking aid. I have a few canes (kinda like shoes us girls can never have enough Lol) and I just inquired about getting the complimentary little walker from MSAA. They may have items to assist you, too. Hang in there!

CatsandCars profile image
CatsandCars

I'm sorry to hear that you're stuck in the house. I choose to stay home a lot because it's a lot of work to get ready and get out, but recently I heard that it's important to get out if you want to reduce brain atrophy over time, so I've been looking for ways to get out myself. I can understand that falling would make going out difficult. I don't know if physical therapy or a mobility aid might help you? It's hard to fall if you sit in a wheelchair, although it feels awkward and embarrassing at first. I can walk, but I can't walk far, so if I want to go any distance I need the chair. I'm working through the discomfort of being seen in one, but it can be better than missing out on things I want to do. I also find that home is extra sweet to come home to once I've been gone!

I'm happy that you found us. I think you'll find this to be a really nice group for a laugh, getting advice, or just to vent. I hope to see you posting again.

Helpmeup profile image
Helpmeup

Hi PSNuser, and welcome! You made a good first move by reaching out on this forum. I really understand about social isolation. I used to try to keep up with going out with friends, but, honestly, these days it just feels like too much work, and I've gotten quite good at being a homebody. I get it, it is easy to start thinking about the past and what you had and what you lost. Sitting home gives you lots of time to let negative thoughts in. You don't say how long you've been dealing with M.S., but I found talking to a therapist can be a very good tool to work through those negative emotions.

If fear of falling is keeping you home, catsandcars post had a great suggestion about using a walker or a rollator or a wheelchair. It can be hard to transition to assistive devices, but I look at using my rollator as a means to stay independent. It gives me the power to get out and about when I need to. My balance is terrible, but when I am hanging on to my rollator, it gives me a lot of confidence.

This forum has been a lifeline for me. There's only so much conversation I can have with my dog! It's a great group. We are here for you. Let us know how you're doing.🙂

carolek572 profile image
carolek572CommunityAmbassador

Welcome to the forum, PSNuser ! I understand your apprehension about getting out of the house and having your ‘ms’ flare up. I am not sure what to suggest but you can go to mymsaa.org for resources that might help you. I look forward to hearing more from you. In the meantime, Keep Smiling! :-D

Xvettech profile image
Xvettech

hi and welcome! I agree with all of the above! Yes, the wheelchair stinks. At first when I caught people looking I would say what are you looking at. But that did no good. I ended up upset. Now when I catch people staring I have fun with it. I give them a funny face then I start talking nonsense to them and making noises. Then I laugh my butt off at how fast they turn away. That leaves me laughing. And in a much better mood! ROFL! I understand feeling isolated as getting ready to go out takes away all my energy my cat helps me stay home and be a home body. I have lots of hobbies so they keep my mind off of what’s going on and why. I hope you find something to make you happy! Arts & crafts are always fun!

PSNuser profile image
PSNuser in reply to Xvettech

I completely agree too, way more fun to mock them. I sold insurance to the elderly and they’ll sometimes say ignorant and untrue things. I’ll just calmly tell them why they’re wrong and you can almost hear them feeling dumb on the phone.

Xvettech profile image
Xvettech in reply to PSNuser

😂

irhunter profile image
irhunter

Welcome PSNuser! There’s a lot to unpack in your post and replies. I’m 18 months into my diagnosis and in that time have learned to cope by absorbing as much knowledge about MS as possible. Hopefully you have a good MS Neuro. Get referrals from him/her for further specialized care. If you don’t ask, then they won’t know. A good PT specializing in Neuro/MS can help with your mobility. I use Trek Poles to assist with balance. I also get nerve fiber fatigue, everyday starts strong then declines as I work. Orthodics, Neuro stimulators, proper sleep and diet can help there. Heat sensitivity! Tons to say there! I cut 4 acres of hay yesterday in 85f sunshine. I have to drench myself with fresh water, head to toe. I use a cooling vest. If I get hot, I can barely walk and did pass out once, before my diagnosis. So there’s three examples of ‘hacks’ to help keep you active.

Undoubtedly the hardest part is staying positive and not dwell on MS. I view my MS as a daily battle. I’m at war against it. I’m taking online singing lessons just to express my feelings, get them out in the open! Of course it’s almost a half mile to my neighbor!

I’d love to write more but I need to get out and feed the sheep and pigs… and I think this morning they will get French drinking songs!

Wtfisup profile image
Wtfisup

Greetings! Agree with sage advice from others in group.

Old relationships can still make me spiral. Was married 22yrs (he left because he couldn’t handle my physical decline) now divorced for 17yrs. Decided to get therapy and it has helped a bit. Was prescribed Lyrica for pain. Didn’t touch the pain but noticed my mood was better. Isolation sucks. So does getting ready, stairs, transportation, room temperature, noise, etc., etc... Another one of the challenges is this disease makes me undependable. With help I can usually overcome those things. My old relationships, family or friends, gets me every time. Feel free to vent here, I certainly have. Theses are really good people in this group that I trust.

Keeping you in my positive thoughts and prayers. Hope today is a good day! 🫧✌🏻🌎

PSNuser profile image
PSNuser

i have had MS for decades and I’m beyond medication and wheelchairs at this point. I also have no interest in going out, I already alienated everyone I knew anyway. I really have no choice but to give up and it sucks, almost brought my neuro to tears telling him that but he understood. I have definitely ACCEPTED that but still sucks.

agate profile image
agate

I've been disabled by MS since 1980 and have led an increasingly isolated life. Getting to places when you use the local lift-equiped paratransit system isn't the easiest thing, and so in the last 10 years or more I've gone out only to essential appointments. Visitors are only my son and grandson every 4-6 weeks or so, and that might taper off soon, now that the grandson is old enough to find more interesting things he wants to do.

You could sign up for an arrangement where a "friendly caller" will call you from time to time. Many communities have these programs--the Red Cross sometimes offers it, for instance. But some of the callers think of their commitment as just checking in on you once a month to make sure you're still alive, not to chat. Others will become long-term friends.

I don't much mind the isolation any more but I enjoy reading and listen to recorded books. I rent movies on DVDs from a local library program. The Internet is very very important to me but for the first 17 years or so with MS I didn't have a computer or Internet. In those years I did a lot of needlework and crocheting, many jigsaw puzzles, and read a lot of books. I taught myself to play the recorder. I tried for years to do some quilting. I usually had a cat to keep me company.

I've puttered with plants in an amateur way too.

PSNuser profile image
PSNuser in reply to agate

Oh my god that sounds scary, I don’t know what I’d do without streaming videos all day.

That red cross program sounds incredible actually. I have similar family issues to you, I don’t want to burden them so I try minimal contact for their sake, just rather let them live their lives at least.

Tazmanian profile image
Tazmanian

Welcome to the group noone wants to belong to

Girafflover profile image
Girafflover

I know how you feel. I have my bad days and good days to, but I miss the old me the me without MS. I have to be careful because depression is not a good thing.

Mollyabigail profile image
Mollyabigail

Oh, boy, I can relate, PSNuser. It gets lonely! Lots of good suggestions here. A pet is good company. My Shih Tzu should have been named Velcro. She follows me EVERYWHERE.

This forum helps me feel more connected. Noone understands like this group. Check in regularly!

Going out is hard! I make myself get ready every Sunday & hobble to church. Everyone is real sweet. They come by & visit me before & after the service, while I 'sit' and give them the biggest smile I have! Use the handicap parking.

I shop online. But just getting out & driving to the store to have my order brought out helps. The countryside is full of life right now. I try to appreciate nature, the farmers in the fields, strangers waving on a country highway, & just being out of that dang house!

AquaZumbafan goes camping! And does water zumba. She has shown me that I do need to get out, even if it's just a drive. Go get ice cream or something!

We hope you will be back here. It does help. You have friends right here!! 😎

Misty2024 profile image
Misty2024

Hello! I looked at everything that was said to your message and realized that I do so much of what was suggested. I am 71 years old so I have been around the block for a long while! Hang in there! Try some of the things mentioned one by one.

Neworleanslady profile image
Neworleanslady

volunteer at the humane society

1yoyo profile image
1yoyo

Me too!!!1

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