I Feel So Isolated: It's a rough day, and... - My MSAA Community

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I Feel So Isolated

Mickle13 profile image
30 Replies

It's a rough day, and I'm feeling whiney. My MS symptoms keep me from getting out much. I can handle three days a week, but am also hampered by the fact that MS cog fog has taken from me the ability to drive, and my budget is pretty limited in terms of being able to afford alternate transportation and money to spend on activities. I've tried volunteer work and OT groups, but can't be depended upon to show up because of my symptoms. I don't have a support system to help me with any of this.

I attend a monthly MS Support group when my health allows, but often go a week without getting out of the house. My main opportunities for social interaction is when I go to doc appointments. I live alone with my two cats (yes, I'm the crazy cat lady), and they aren't much for conversation.

I realize that I am more blessed than many, and I try to accept the loneliness but am becoming less and less able to rationalize all of this away. I'm also struggling with, and am being treated for depression and anxiety. Big surprise.

Has anyone else found a way to deal with this type of situation? I'm out of ideas. I have good mobility and get out for walks, but I feel trapped by my disease. Anything advice you guys have is much appreciated.

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Mickle13 profile image
Mickle13
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30 Replies
greaterexp profile image
greaterexp

everydayhealth.com/multiple...

I'm sorry about your feelings of isolation, and the pain they cause. I'm so glad you brought this up, however. I think this is a bigger problem than we realize and one that most of us struggle with.

What has saved me from dropping out too much is my church family. I am involved there in several capacities. The best thing about those folks is their love and understanding. If I can't be there to play piano or to cook or clean or quilt on any particular day, I'm never made to feel guilty about it. They don't assume I'm just an unreliable flake, but know that I would be there if I could.

If you aren't involved in a church, do you have any interests or hobbies that could lead to meeting with people? Not all activities and hobbies involve a lot of money, and it may be a good way to meet people without too many expectations. Sometimes libraries have loads of information about local groups, and the newspaper may list things like that.

You already know that isolation can exacerbate depression, so you are wise to be looking at ways to limit it. Thank you for being open about your feelings. We are here for you.

Mickle13 profile image
Mickle13 in reply to greaterexp

Thank you so much for your support! I've researched hobby type groups at area rec centers and there isn't anything available that interests me. The availability in my community is limited, and all of them require a financial investment. I joined a writer's workshop (which didn't work out...cog fog). I tried an OT group at the VA, and the environment was too loud and disorienting for me. I tried the YMCA to get more exercise, and was unable to overcome my symptoms to continue.

A church group would be a natural setting for acceptance and understanding, but I'm Wiccan....there's nothing to be found. I do attend an "energetic" evangelical church with my daughter in law when I'm able to go, but getting further involved would mean I'd have to pretend to have beliefs that I can't agree with.

I realize that all of this sounds like whining and excuses, but I've run out of ideas. I do appreciate your suggestions, and maybe someday I'll be able to find something.

Mickle13 profile image
Mickle13 in reply to greaterexp

Hi! You may have opened a new avenue for me! I've been thinking about it, and your church suggestion just might work!!! I could explore more traditional local churches near me. I'd love to have the fellowship, and if I'm lucky I might even manage to make friends who'd be willing to offer me a ride!

You're brilliant! Thanks!!

falalalala profile image
falalalala

Getting outside for walks always lifts my moods.I take my camera with me in case I see something interesting to use for paintings or ceramics. Exercise is a big part of why I am not often in a bad state of mind and I look for the good in things for the most part-except meatloaf, that is just foul. ;)

Artwork for me has always been a solitary endeavor and I like my alone time very much.

If I need to get out to be around people I can go to any number of art shows,fairs or openings as I have connections through my work.

Pursue your interests and maybe you will meet new people/friends.

Mickle13 profile image
Mickle13 in reply to falalalala

Your suggestions are all good ones. I'll continue my search for carving out a little niche for myself.

falalalala profile image
falalalala in reply to Mickle13

I'm sure you'll find something :)

Mickle13 profile image
Mickle13 in reply to falalalala

I'm gonna keep trying!

CalfeeChick profile image
CalfeeChickCommunityAmbassador

I hope you will spend some time with us and get to know us. We're a very nice group. You can choose to make posts, comments or ask questions. I did allot of reading, crafts, library computer classes. A little genealogy work too. I have found that my group of 70-80 close friends has dwindled to under 20. I accept that and am grateful to know who my true friends are really are. The MSAA site has a world of information available to us. Do you draw or paint in any medium? Every fall, you can enter up to 3 of your works to be considered for artist of the month. Check that area out here: mymsaa.org/artshowcase Keep on coming back here, we are here for you!

Mickle13 profile image
Mickle13 in reply to CalfeeChick

Thanks for your insights and kind welcome. It's great to know you're there for us!

Wizardsmom profile image
Wizardsmom

I too, feel isolated. I have a family but have found MS to be an isolating disease. I also have depression and anxiety which also tend to make a person feel isolated.

I will be interested to see what other people say helps them.

rjoneslaw profile image
rjoneslaw

have tried 2 get a care taker? that could help u a lot

Mickle13 profile image
Mickle13 in reply to rjoneslaw

Thanks!

goatgal profile image
goatgal

You call yourself a crazy cat lady. Sometimes rescue groups find feral kittens who need fostering to overcome their fear of humans. The kittens need interaction and care...something you could do at home.

Mickle13 profile image
Mickle13 in reply to goatgal

That's a great idea! Thanks!

Timeflies5 profile image
Timeflies5 in reply to goatgal

That is a very good idea, goatgal. To @Mickle13, I would imagine that joining a rescue group with your passion for cats can only open opportunities for socialization with like-minded people, too. If I may... I’d like to add a story that made an impression on me when I was feeling quite isolated being on disability back in 2016 when I was first diagnosed...

It is a true story of a well-known psychologist, Robert Ellis and written in Times magazine. At 19, Ellis was painfully shy and eager to change his behavior. In one exercise he staked out a bench in a park near his home, determined to talk to every woman who sat there alone. In one month, he said, he approached 130 women.

“Thirty walked away immediately,” he said in the Times article. “I talked with the other 100, for the first time in my life, no matter how anxious I was. Nobody vomited and ran away. Nobody called the cops.”

Though he got only one date as a result, his shyness disappeared, he said. He similarly overcame a fear of speaking in public by making himself do just that, over and over. He became an accomplished public speaker.

So point taken, I was determined to overcome my concern of becoming isolated...now that I was not working on the outside...by just reminding myself that it was up to me to just say “hi” to the next person...and let life unfold from there. Hope this helps along with all the other insightful posts here...blessings 🦋🌺

Mickle13 profile image
Mickle13 in reply to Timeflies5

I love the idea of fostering cats...it would be a huge help. Unfortunately, my apartment complex wouldn't permit it. I enjoy being with people.... I was a psychiatric nurse for many years and like to think I can relate to just about anyone. I've tried several things, but haven't yet found anything I can do because of my symptoms. Maybe someone out there has an idea that would work out, and I truly appreciate any suggestions!

Timeflies5 profile image
Timeflies5 in reply to Mickle13

We are birds of a feather when it comes to psychiatric skilled nursing...Have you tried photography? It’s a lot of fun and one can join groups with other enthusiasts.

Maybe you can have people who share your same faith visit you for movie night or fellowship being that transportation is an obstacle. I read that others make tray gifts for a local children’s hospital.

My older sister has MS with depression and anxiety...she likes to make little rag dolls for foster care children and local moms with kids shelter. Hope you have a good day...thanks for bringing this topic to much needed attention. 🦋

Mickle13 profile image
Mickle13 in reply to Timeflies5

Thanks for your ideas. Maybe doing some volunteer work at home would be the ticket. I'll look into it:)

Linda3579 profile image
Linda3579

Hi Mickle13,

I understand how you feel. I have felt so lonely and isolated many times. I found an adaptive P.E. class a few years ago which has really helped. Everyone there has some kind of disability. Many days I don’t feel well enough to go, but everyone there understands and we all support each other. If there isnt anything like that in your area maybe you could talk to your recreation dept to start one. I know It’s a constant struggle to get out and stay happy. Sometimes we just need to whine a little. I’m wishing you better days.

Linda

Mickle13 profile image
Mickle13 in reply to Linda3579

Thanks so very much!

Pistol profile image
Pistol

I can relate ! Thankful for the pets they are my best friends also. I have tried volunteering and sounds like the same as you it usually just wipes me out , then I can’t do anything else,and like you I can’t be sure how I’m going to feel one hour to the next. If my sight goes blurry or I get dizzy or fatigued beyond I have no say. So I better be close to a safe comfortable place to lay down!

I guess my only suggestion is what I try to do, enjoy everything around you,your cats or walking. Whatever it is you 💕 love .

Low key projects keep me busy . New things I have started are gardening, sewing coloring reading ( then my sight messed up) And a lot of Netflix.of course things around the house are easier if you feel sick you can give in for the day and it will be there the next.

Try something that you like where you can sit and enjoy it. It sounds like your in a peaceful place 🙂 I’m interested in reading the other suggestions

Mickle13 profile image
Mickle13 in reply to Pistol

Thanks for your insight. I appreciate knowing that someone else is dealing with the same thing. I'm a Netflix addict, too! It's a lifesaver!

Iona60 profile image
Iona60

I have found many groups that I have joined since I had to stop working. Some are church related and many I've just found through the local community newspaper or library. All are nearby and I don't join anything that requires my attendance or to do anything specific other than just show up. It's fun to just get out and be with people. Today I went to a knitting group. Tomorrow I'm going to a craft group at the garden club. On Friday I'm going to a luncheon at church. Just start looking around and maybe you'll find a few groups that interest you.

Mickle13 profile image
Mickle13 in reply to Iona60

Thank you so much for your reply and ideas. I've done quite a bit of looking around, and my community has little to offer. I'm severely limited because of my fatigue and difficulty with transportation, but perhaps there is some little gem out there waiting for me.

falalalala profile image
falalalala in reply to Mickle13

Maybe taking an online course might interest you?

Mickle13 profile image
Mickle13 in reply to falalalala

Thanks! That's a good idea!

Iona60 profile image
Iona60 in reply to Mickle13

Fatigue it's one reason that I don't make any commitments. Does your community have transportation for people with disabilities? Once you attend a group a few times, someone may offer to pick you up. If your community is too small, maybe the can find some ways to connect with people by phone or video chatting. You can start by thinking of anyone that you already know that would appreciate a phone call, like an older Aunt or a shut in.

Mickle13 profile image
Mickle13 in reply to Iona60

Thanks for your suggestions! I may find some solutions:)

TracyBelle profile image
TracyBelle

I am stuck alone in my house unless I have a Dr appointment or an event at my son’s school. I always go straight there and then back. The isolation seems to accelerate my loss of conversation skills. I have trouble reading people’s expressions and don’t trust myself to not say something inappropriate. I don’t go outside for weeks sometimes. There is no where for me to go, even if I had a vehicle. My hobbies before MS were snow skiing, rollerblading, wakeboarding and 45 minutes on the stair master. I don’t have any talent for art or crafts. The only thing that I am good at is feeling sorry for myself. I feel like I have wasted my life waiting to feel well enough to do anything. 🤯

Mickle13 profile image
Mickle13 in reply to TracyBelle

Oh, your post really hit home with me! I've been unable to drive since 2005 because of my cognitive deficits. NO ONE wants me behind the wheel! I have access to our area's handicapped transit bus, but besides doc appointments and my monthly grocery trips, my fatigue and budgetary issues preclude my traveling much. I, too, can feel my ability to interact socially slowly slipping away.

I try so hard to count my blessings...I still have a roof over my head and food to eat, but some days I am overwhelmed with loneliness and don't have much to look forward to. I've tried to get out and get involved in activities, but my symptoms always blow my best intentions to smithereens. I can't tolerate being out of my apartment more than a couple of times a week, and my doc appointments often put me at my limit. No solitary hobbies interest me.

I have a son who lives nearby, and a sister and friend who live a thousand miles away, but don't confide in them because I'm an expert at whining, and who wants to hear that?? Even my posting here is a huge whine-fest!

I try to hold out, hoping that a solution is out there, but nothing I've tried has worked out. Is this morbid, or what? Maybe there is something out there for us. I just hope we can find it. Hold on...just hold on. And keep looking.

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