April 27, 2018 at 6:58 pm #11309
I do, and as with anything, if people haven’t lived it, they don’t understand it.
I would love to be more active, tennis was my game. But, due to MS I must watch from the sidelines.
Luckily, connecting to others with MS shows me I am not alone. Hearing that others can relate to what I am going through makes all the difference!
When do you feel the most alone or left out?
May 2, 2018 at 6:06 am #11391
What I am missing the most is walking the dog…It only seemed a few years ago I was walking three of my dogs with not a care in the world…I feel alone now mostly when I see seniors on the tv who are going about their daily lives, such as visiting gardens, stately homes, craft fairs…It really hits home when I see older than myself actively out and about enjoying themselves at places I once went to and enjoyed, that I now cant do on my own pair of feet and legs…We take so much for granted, that is until we lose it…
- This reply was modified 3 years ago by Jacqueline.
May 4, 2018 at 6:15 pm #11517Cyndi BParticipant
Absolutely! Almost every day to some degree. In short, I have lost my ability to do things or go somewhere on spur of the moment. Most everything now requires more forethought and planning. I miss that spontaneity and independence…but it is helpful to know others are struggling with this as well…not that I take any pleasure in knowing others are suffering but only that it helps knowing I’m not alone in these feelings…that we’re all in this together — whether directly or via the internet : )!
May 14, 2018 at 7:29 pm #11668DebParticipant
I am so lucky to have such great gal pals! They include me often, I also get a lot of people stopping in. Sometimes I think I should put a revolving door in. I hope it doesn’t sound like I’m bragging! Honestly I love my alone time, very peaceful. Take care everyone.
May 14, 2018 at 7:47 pm #11670
That’s great Deb! You are a lucky lady!
May 15, 2018 at 1:35 am #11677
My first thought was, OK I have MS, so I shall join everything MS, such as Therapy Centres, MS Social monthly gatherings, whether right or wrong…But now I ask myself, OK Jackie, so you have MS, but it shouldn’t stop you from non MS gatherings- hobbies etc, life doesn’t need to evolve around ” our own people…”guess we can choose to either mix with our ” own kind ” or get on with life as if ” normal…” I have met two people who live on our site who have MS, and neither want to talk about MS, nor be a part of the MS ” world, guess its a personal choice, by just getting on with their lives the way they choose and living life there own way…
My mind is telling me to push MS to the back of my mind and just get on with life, on the other hand I am also needing to be amongst ” my own people ” if only for the entertainment purposes for that short while, it is something to look forwards to, just the laughter that for that short period we-I can forget that we have MS, laughter and fun is very Important…
- This reply was modified 2 years, 12 months ago by Jacqueline.
May 15, 2018 at 12:45 pm #11702
True Jackie, balance is always good. I find, talking with others with MS can be informative, fun and it is always good to be able to relate to others!
May 16, 2018 at 11:29 pm #11731CemcgeeParticipant
The people in my life have always tried not to leave me out, but given my family and my husband’s family are very active people I often feel left out because I cannot physically do the activities they engage in.
I am a marriage and family therapist, so I try to practice what I preach and become aware that I am putting the negative feelings on myself by thinking I am being left out. When I am not.
I have realized that, I have the power to choose how my feelings affect me. I hope that for everyone.
May 17, 2018 at 10:49 am #11751
Excellent advice Cemcgee!
May 17, 2018 at 11:51 am #11754CemcgeeParticipant
Thanks! Sorry did not use my name, it’s Cassie
August 8, 2018 at 1:01 pm #12736Susan BockParticipant
A big YES! I was a people person with many friends but over the years they wanted a person who could do things. I never knew there would be so much loneliness
August 8, 2018 at 3:27 pm #12737
I’m sorry Susan, I know how hard it is!
Are there any MS support or exercise groups around where you are? I have really been reluctant to try groups, due to my disability. But, since my husband’s passing in December,I need to get out more. I feel I need to push past my comfort zone and socialize. I will post how that goes! 😀
August 9, 2018 at 12:59 am #12744
…sending a big ((( hug ))) to you on your sad loss of your dear hubby…I was not aware that you had lost him, and fairly recently….
…I am saddened that your friends, your social click have shunned you through no fault of your own, just because you are ” not one of them anymore ” since you cant keep up with their Idea of their social group…Don’t any realise that MS or other disabilities could just as easy hit any one of them just the same as it hit you?…MS comes out of the blue when we are not expecting it, and there is absolutely nothing we can do to stop it….maybe it is your friends that need a harsh wake -up call to life’s realities….Susan, make yourself new friends, it is times like these we find out who are our real friends are anyway…
…you are right about ” we have, or we hold the power to how we will let our feelings affect us…”
- This reply was modified 2 years, 9 months ago by Jacqueline.
August 9, 2018 at 8:56 am #12755
Thank-you, Jackie, hugs back to you! My husband was diagnosed with stage 4 pancreatic cancer May 2017 and passed after 7 months. He had 14 chemo’s during those months, hard to imagine! He was so sweet and always helped and took care of me. It’s been a difficult time!
Susan , I agree with Jackie. “It’s times like these you find out who your real friends are!”
September 24, 2018 at 1:55 pm #13599Susan BockParticipant
I surely do. Every more friends have disappeared. I cant get out any longer so
September 24, 2018 at 3:57 pm #13601
Hi Susan, You are always welcome here, and I hope you will become a regular, we have fun discussing a range of topics! It is great to be in an MS community where everyone can relate, share, gain advice or just to laugh!
November 9, 2018 at 4:47 am #14233NayaParticipant
Absolutely. Not only do i feel left out but i leave myself out, too.
Sometimes i’ m not able to get out of home due to fatigue or being afraid i will get tired.
And i even get tired when i have visitors. Having many people around me talking, exhausts me. Though i always have a good time with friends, in the end i’ m always tired and need at least 2 days to get back to normal.
Also not being able to drive gives me a hard time. Having to depend on others to take where you want sucks. And limits my outings.
Ah! I have so much more to say but i get tired writing…
So have a nice day and thank you for the topic and the chance to talk.
I’m new here, so hello everybody and keep living!
November 9, 2018 at 8:39 am #14240Ed TobiasKeymaster
Thanks for sharing all of that. What you’re going through is similar to what a lot of us go through.
There are medications that can help your energy level. The same goes for exercise. But it’s really a balance of how much helps versus how much can you do.
But I’ve always follow the philosophy that rather than hiding from the storm it’s better to learn to dance in the rain. It’s served me well for nearly 40 years.
Please feel free to chat here anytime you like.
November 9, 2018 at 10:11 am #14242
Well said Naya! I feel the same, I leave myself out of things too and miss out. I worry to much about fatigue and everything else! It always seems to work out fine when I do go, so I just need to make myself go out more.
Thanks for joining in, it’s good to have you here!
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