I've been spending the better part of a week or so reading the comments to the question of how family took the news. Many great stories as well as heartbreaking, but I'm noticing a common trend with each one. Isolation, whether by others or through our own doing, unintentional or intentional, it seems to be common across the board. I'm currently experiencing this myself and it's not very helpful in the depression area, so I've decided to become a tad proactive about it by reaching out to friends and family and issuing a challenge explaining the issue of isolation. Don't isolate, self educate, along with a link to knowledge is power videos or suggested articles. It seems to be helping relieve some of the fear of awkward conversation. For me, stumbling into this great place with all of you awesome folks was the first step in learning how to see things from so many perspectives and apply that to every "next step", whatever it may be. Is this or has it been a challenge for anyone else and if so what are you doing about it?
Isolation: How are you dealing with it? - My MSAA Community
Isolation: How are you dealing with it?
By staying positive and spiritual. Knowing it's not a death sentence, it's just a bump in the road of life (A BIG BUMP😀)
It may not be a death sentence but people have died from MS and it’s symptoms. Many from being in the heat or cold too long.
After the first year I realized that I needed to get up and move on. I had no disability, or very little at that point but I had isolated myself due to the fear of "what if". I had a family to enjoy and a life to live.
GerriG This chat room is a great place to beat isolation. Someone is usually around to chat with.
Glad you found us GerriG. Welcome.. This chat room has definitely helped get me through this first year of MS, all the testing, waiting for results, then having it all done over again. Me personally, I know I've found some friends that will always be in my heart. Everyone here is kind, courteous, Knowledgeable. You can ask questions, vent your frustrations, as you feel like it, feel free to join in various chats.. Isolation is sometimes very tough, you realize who you know as acquaintances, and who your real friends are. Sometimes, you are just not able to participate in activities because you feel awkward and have limitations. I realize that I have isolated myself because I get tired of explaining why my balance is off, or my mind goes blank in the middle of a sentence. I am blessed with many good friends that have kept me in the loop of activities, and they adjust to my limitations, but encourage me to do what I can. I am blessed by the ability to spend time by myself, do many arts and crafts. I am always crocheting, sewing etc. Hope to see you on here often. Lynn
Thank you for your response! I suppose right now I'm feeling it's especially hard when the ones in your own home are isolating of sorts, through denial or what seems to be simply not caring enough to at the very least research the symptoms to get a better understanding. It's one thing to know up front that one would be dealing with these issues alone but another to feel alone with someone there. It's frustrating, but I feel like I have to now also prepare myself to go it on my own. You all definitely give me hope.
I understand that and perhaps you need to take the initiative and set up a time for one on one or a group discussion to voice your concerns, offer educational materials and ask for understanding. I only have my husband at home and he is awesome although he's not sure 🤔 he wants to learn everything about my MS. He sees how it affects me and is learning to be patient, very helpful. We are here for you.
Excellent topic, GerriG . I've found my cognitive issues and mental fatigue complicate my ability to carry on a conversation (or really listen to others), participate in Bible studies or book clubs, or attend classes where I must learn something new or share my thoughts with others.
Physically, I am 'done' by 1-2pm. I pick and choose my outings based on my fatigue levels, my bowel and bladder needs, the time of the function, and whether or not I can quietly leave if I feel myself fading away and in the need of rest. Because of this, I isolate myself.
Like others here, I have found this forum to be a blessing. I've made many friends here-friends who are always willing to listen and who understand me. We all need someone to share in our trials and our joys.
I have also made more of an effort to purposely build other relationships. Because of my deficits and all the reasons I listed anove, I schedule my get-togethers in the morning or no later than an early lunch. I also limit myself to about an hour and a half. After that, my eyes start to glaze over and my mind shuts down. But I'm happy with the effort I've made to step out of my self-imposed islolation. I pray you are able to find what works best for you. 💕
Tutu. Your encouragement and example have given me the initiative to venture forth and return to Wednesday night church. It is so much quieter and focused on a particular bible lesson versus Sunday church which overwhelms me at times. Thank you from the bottom of my heart for your input. I believe we are fellow Washingtonians. I hope the heat doesn't stop me in my tracks next week. From the fifties to the eighties in a few days. Such is life. Take care.
Where are you in WA, Vlbrown57 ? I'm afraid Karen-x is a little behind on the spreadsheet, 😂 and if you've mentioned where you are, I have forgotten. Sorry. 😐 I know a few here are dromnthe Spokane area. You?
I'm happy to hear you'll give Wed night at church a try. It is so hard reinventing ourselves, isn't it?
We have Vacation Bible School in August. I've had my heart set on having our 3 grandsons spend that week with us so they could attend. I've FINALLY accepted I can't do that anymore. My heart still aches over that. I can't serve in the classrooms. I can't even make it through the 2-1/2 hours of VBS Mon-Fri. But I'm serving on the VBS prayer team! It seems God provides new opportunities. Sometimes it just takes longer (for me) to let go of what I think I should or can do, and recognize what he's offering elsewhere.
Keep cool these next few days, and let us know how Wednesday night goes! Praying it is what you need. I'm sure others there will be happy to see you. 💕
I know it’s been some time since this post started and Ms has made many changes in my life too. @Tutu I find my focus fades mid-day also, my circle of friends outside of the forum has decreased, some by their choice, a couple by my choice. My church puts each week’s sermons on the web and I can print the notes and do my Bible study at my own rate. They have finished Galatians and I’ve just started and love ❤️ them. And you!❤️💕🤗
I'm learning still, but I also find that I am enough in and of myself... I'm full, I'm complete, and I can count on myself always... 30+ years of fighting the MonSter, friends and partners have come and gone, and I'm still here.. I'm always here for me with my constant companions of pupz... It's a learning process and I try to connect to my own strength each day...
Sometimes it's all I have to get through each day and that's Ok because I know I'm always here--I can be complete...
GerriG , I personally believe that isolation can lead to depression. Take a look around and find one thing to get you out around people. It could be church, MS support group, volunteering, etc. You just to find your "Happy Place" and yes, you can still find happiness, even though you have been DX with MS.
Wholeheartedly agree. I can visit with friends by phone, email and text. I almost literally am crocheting something every day. I have a whole bag of hats to give to Salvation Army. Like someone said, we have to reinvent ourselves, try to remain positive for ourselves, then others. I have had 2 times in the last months where I questioned my faith and my future. Fortunately, I have my Pastor and good friends of many years to re-activate my faith and happiness!
I never isolated myself, but I don't talk about it much either. Some relationships have changed or ended and I have either grieved those or accepted that it was for the best for me anyway. I don't have deficits that I feel interfere with living life, but I do have to plan wisely. It would take a lot for me to feel that way. I had to give myself permission to be sick and learn what TLC my MS needed to allow me to do the things I want. Staying involved in forums, groups or meetings is a reminder that my new normal is not so strange or loathesome.
I have hope. I have right now, and I am ok right now, so I'm going to do the best I can with it. Sometimes I have to remind myself that I am ok.
I have become a hermit for the most part. I have a few friends that stop in from time to time. I am extremely grateful for those who do. Alot of the time I find that I am sometimes not wanting to sit and look at the pity in their eyes when I am in a great deal of pain. A smile will hide only so much. However, seeing as how I decided earlier today to fall down the stairs of my rv head first, it's comforting to know there is someone who will come and check on me. The stairs broke most of the fall, and I was so thankful for the grass at the bottom. Being alone defiantly has its drawbacks. I find that my times of isolation are great opportunities to take my petitions to the Lord in prayer. My faith gets me through each and every moment of every day so I see it as an opportunity to grow in my spirituality. As I venture down that path I have found that I am never alone.
I hope you are ok after your fall, Allen48 . 😬I can see how living alone can complicate a lot of things as our needs increase. I'm happy you do have friends you can call on. And like you, knowing I am never really alone, gives me hope and comfort. Praying you fully recover from your fall. 💕
I like what Can Do MS espouses. Do the most you can. Try to live life to the fullest. I know it is hard but it does work to live that way. So what if I can't walk an MS walk? I can participate by riding my electric scooter. I had plenty of company at the walk we did last month. The last two years I had walked about a third of it with my walker. This year I finished.
Yay RobertCalifornia !!!🎈👏🎉
Hi GerriG isolation can be a big problem. Do you have a support group at home? Have you looked for 1 in your neighborhood? I know that NMSA runs one.😊
Talking to others about it, isn't a problem for me. 😁 Because l have the "it is what it is" attitude. 😊 I can't change it, and on not contagious people.😕 So if they can't handle it, it's not me. It's them.
Talking to family is hard. You want them to "get it" and to understand something that, we can't understand ourselves. All you can do is be open with them, and ask them to be the same. ☺
Tell them they are more than welcome here, to read and ask questions.😁
Jes 🌠
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