Day in and day out you can find me at home on my laptop. I admit, I do get out a lot more than most but sometimes I’m still just so restless. Often, to be quite honest with you, I’m plain old bored. I can’t believe I have the nerve to say that. I sound so ungrateful an entitled.
I don’t have the energy for most things so it becomes tricky. I don’t really like going out and rolling in my wheelchair amongst “walkers” and there is only so much daytime TV a girl can handle. Besides I don’t even like the soap operas. Dang, from reading this I sound like a real drab person. I promise you I’m not. Just bored.
My MS is just so limiting. Now, I must figure out what I can do. I just wish there was somewhere I could hang out during the weekdays. A location that is similar to an adult day care place. Well actually that’s exactly what I mean. Most centers only take ages 55 and older. Nothing I’ve come across really applies to a 37 year old vibrant young lady that happens to have MS. It’s funny because I attend a gym that is located next to an assisted living community where I do feel quite comfortable. At least when I visit there I do feel at home. The gym has mostly elderly members getting around with walkers. I feel like a star with my scooter. Now, how can I get more MSers in town to come?
But I guess if that’s my biggest problem then I must be doing pretty good. Maybe I will look into those adult day care places after all.
Hi I don’t have ms but similar limitations with my autoimm he disease. No one mentioned adult coloring books and look at them before you decide to laugh. Google adult color books and look at the ones by patty F..I got mine on amazon. Used to paint…now I enjoy the colors….used colored pencils. I read, crochet, watch TV, listen to classical, on church prayer chain to pray for others’, make earrings,send cards, chat on phone, write poetry. Still bored with the house tho. Been in it for 17 months and my disease is chronic. No known cure. Well, I am old anyhow…..Hope this helps someone.
Amber, you sound more active than me!
I am looking for events or companionship for my daughter Jodi who is 46 years old and has had MS for about 20 years. She loves to talk and be around people. Her friends have all left her and we do not have a big family. We live near worcester, ma. PLEASE HELP!!!
My main source of companionship is online. Lots of people to talk to on Facebook. A great page called Living For a Cure. I also chat with people on http://www.mymsteam.com/people I’d be happy to talk to her on Facebook too, I’m there under my own name,
Hello I would love to check in from timsto time by phone or email. Both have helped me. I asked my bible teacher at church if she knew someonewho would be a telephone friend…iI don’t go any where any more I son want to put my telephone online but perhaps our moderator will give you my email
It is so good to read something ‘honest’. I am lucky as I can still do some craft things and I joined the local scrabble club and they have been fabulous but I used to be a real outdoorsy active (manic active! LOL) person. I had 2 motorbikes and then wham. The world is turned upside down and my life style has become like I expected when maybe I was 90 or something. I am 46 and was diagnosed 5 1/2 yrs ago. Though I do have 2 grandsons who have made the journey easier. They just say the cutest things. Like ‘Nana is slow…but not as slow as a snail!” And I put them on my mobility Scooter with me and we go ‘hoon’ up to the shop. But they have now moved away and boy is it hard to get motivated sometimes. I think a adult daycare place sounds fabulous! There have been so many people I have met since diagnosed not just MS people but other disabled people and we are all in the same boat. Though the internet has been a life saver and has kept me intouch with people.
People keep saying “stay positive” and yes I agree but I believe in being real and I refuse to be a ‘false positive’ person. I try and keep busy and not to dwell too much on what I can’t do but this disease does suck and it is lonely and we do need support. That is just the reality.
Keep up the good work. Cheers Lou the NSW Ozzie
Louise, Thanks for reading. Yes the internet provides a much needed through way back into civilization!
Thank you everyone who posted. FINALLY someone can relate. It especially hit home when several of you said you lost most of your friends. I see this!! What is excellent for me is that I caught my MS really early so my prognosis is GREAT! I am not in need of a cane or a wheelchair as of this moment, but people are treating me differently and/or not speaking to me at all..does this suck YES!! But it is their loss, I am not dead and I am not going to die anytime in the near future if I can help it!! I can’t thank EACH AND EVERYONE OF YOU enough for giving me comfort in the fact that someone can really relate. Thanks again and I wish EACH and EVERYONE of you the best!! Kudos for sharing.. XOXO
Cary from Detroit
OH and I am 35 in case you all were wondering….
You always seem to hit home doll!! I agree with all the others above. Looks like there are many who feel the same way. Kinda sad actually, isn’t it? I wish there were more centers like the ones we dream of. I wouldn’t have the slightest idea how to start one. Plus I live in a very small town. We can’t even keep a support group in town. Mainly because only 2-3 show. I even contacted the Big Kahuna in charge of our chapter to find out how to start a support group here in town and they stated that no one shows up in our town. Another strike-out.
I think what we all miss the most is having friends. Someone to talk with. Human Contact! We are all just plain old lonely!
Faye, Good for you trying to reach out. But in the end I think you just may be right. A little human contact is good for anybody!
I get so bored too!! I do not know if I would get out to go to a center…but I do feel like a rock star when around the older people
Kim, Thats just like me! Well, maybe before the scooter came into the picture!
I have loved reading all these comments that have been shared, especially because it fits the theme of a blog entry I did earlier this month. It is about my Aunt and how she built her social network per-Internet days.
http://insidemystory.com/2012/07/15/connections/
Thanks for a very important conversation.
Laura, I’m glad you liked it. I had no idea I’d get so much feedback.
Bored? Hell yes, too tears! But what is there to do for someone who is completely homebound? i can;t drive, work,walk,write,cook, shower or even dress myself. I don’t even clean anymore! Adilt “day care” for those that are still somewhat mobile is an excellent idea. This computer is all thats left for me or tv & there is only so much you can watch….. yes I am so bored I drive my scooter in circles around the house. But, if it wasn’t for my computer I don’t know what i’d do & reading (something I can still do) bblogs like this to “talk” to others. Now if we could only get some more support from the medical /insurance profession not just for MS’RS but for ALL those people who are suffering in the same sort of way on a daily basis. Now that’s what i’m talking about!
Kim, Yes that would be so nice. Actually, perfect.
Kim,
In my area there are monthly telephone support groups – that might help some. Also, I think it would be a good idea in this era of Skype for a round robin of sorts to be established so that people could check on each other just to have some human contact.
These days I am feeling isolated – not necessarily bored – but isolated. I just lost my service dog. I am more grieving than bored. The heat and humidity also has me hemmed indoors – not my favorite place.
The world gets smaller and smaller – some of it is forced upon us by disease and some, in my case, is what I can take in terms of response to a woman in a scooter or ambulating short distances with a cane. I find that people will sometimes walk toward me on a path and walk off the path to put distance between myself and them. My response is to do the same. I do not suffer fools gladly. It is ignorance of course – but it is not kind.
But I buck up and try to get out so that I do not fall into a pattern of agoraphobia which I have a tendancy toward.
I have lived through some very trying events from early on which I was looking forward to leaving as an adult – then MS -shocked me terribly.
Now I am working to build my self esteem in spite of MS and other factors and just do the best I can.
If I dwell on being bored – I am dwelling too much in the present. I’d rather dwell in the future and be hopeful. Some days I succeed and some days not.
We can only keep trying…
Elaine..thank you for your post and sorry for your loss. Skype w/b wonderful, however I don’t think it would work for me. I live wat out in the boonies (VA) & we don’t have HS internet out here..hughes net which sucks. Also, I live abt 15 miles from downtown. If i could get into the 21st century in terms of the internet that would be wonderful, but living in the country has it’s plus’ & minus’. Oh well, such is life!
I don’t really have issues with how people perceive me on my scooter….really I don’t care what they think. Some people are real nice, they will even speak to me; others, well they look at me as if i’m contagious…their loss. It’s the children (small) that really bother me because they really have no idea what to think about me.
this forum & others like it are a wonderful & important way for me & others to still stay connected to the outside world even though we may not be physically within it!
I’m glad you’ve connected!
I just noticed Deb left an email in her comment. I’ll try her there.
Did it work?
I sent her an email but have not received a response yet.
I sure hope we can make this connection!
I had to really think about this one. I find myself so busy with my writing projects that I can’t think of being bored, but being bored WITH MS? You bet.
I would love to get in contact with Deb, one of your responders, who mentioned she was from Gary, Indiana. She did not provide a link so I don’t have access to her. It so happens that I grew up in East Chicago, IN which is right next door, and I would love to have contact with her. I’ll go up to her message and leave a reply, but I don’t if she will be checking.
Wishing you the best of luck!
Love all these comments…support groups help for sharing information and strategies…going back to school helped me self actualize. Auditing courses is also a very good way to participate and volunteering is great if you do not get stuck stuffing envelopes because of a certain mindset of the campaign manager. Having been a community organizer, it was a dramatic shift when my wheelchair was more recognized for its experience rather than my skills!
Nicole,
Well said. We all experience this at times especially during the times of the year when the heat drives us indoors lest we harm ourselves with its effects.
As you may have read, I just lost my service dog to a nasty cancer. I did all I could for him for 9 months with the cancer and for nearly 5 years as a teammate.
I am feeling, not bored but imprisoned by my own disdain for the shunning looks I sometimes experience when I am in the scooter. My service dog mitigated that and disallowed my, if not frank agoraphobia, something approaching it.
I have suffered a lot of abuse in my life – even before MS – and it has had its effect on my participation in life. I strive to overcome it – though I failed yesterday – and get out and about for even a little time. The cool early mornings are a good time.
At times I can be a bit arrogant in my overcompensation – life is just a learning process. I couldn’t know the latter without realizing the extent of the abuse – which only beget more abuse. As a woman with a disability I am more vulnerable and I am in the process of breaking free for good.
My service dog taught me about love as well as individuals who never gave up on me – no matter how I acted out or failed to live up to their expectations.
Getting out takes courage though it is also important. Women with disabilities must be seen. Don’t you just love the PUSH girls! I am sure they have their bad days too. But if we do not get out their and show wheelchairs, scooters, canes, crutches, etc. in the mainstream – those that come after us will also suffer. I am all about taking care of the next generation – even though I do not have children myself. I advocate for them, for us and I hope it makes just a small difference.
Elaine,
Sorry for your loss. I’ve never had a pet, but know they can be effective. Thanks for reading my humble little words. That’s a a few good suggestion about auditing a class. That seems right up my alley. I’ll keep in mine.
I love the discussion here, so many experiences I can relate to.
I’ve had MS for more than 30 years but it has started to progress a lot in the last year or two, so I’m in the middle of figuring out who I am now, what I can do and what I can’t. Right now the hardest thing for me is figuring out how to enjoy myself. I can walk a little but not too far; I get tired easily … I tried going to a few art shows (with my partner) but mostly it was too exhausting. Chores (medical appointments, laundry) need to be done, but they are just not enough. Like so many of you have said, I need something else that I can sink my (mental) teeth into. I know I’ll keep trying to figure this out, but it’s good to hear from others who are struggling with different pieces of this.
Rachael.
Thanks for reading, I’m sorry to hear you are progressing. During those times, I like to say I’m in transition. But needless to say this conversation has kept me busy!
Hi Nicole, I’m a writer, advocate, like to try to educate and spread awareness about MS around me, I like to try to reach out to ppl with MS and chronic illness in general and encourage them and give them hope, although I’m more full of hope on some days than others; as I’m sure we all are. I hope to, by my writing inspire people.
I always like to meet others who do the same. the good side of MS, if there is, is that it’s brought out the writer in me. I think I’ve had to trurn to that as a way of coping with the loss of a career that I’ve loved and lost.
My greatest frustration is probably my body! It seems pretty common, but it seems like everytime I turn around it’s something else. Praying about and trying to understand and learn how to fit in with all the friends I’ve always had; Most of us experience a change in that it seems, I have in the way that people don’t understand why you can or can’t do something.
I’ve never talked about it much with frieinds I’ve had, am just starting to a little and it seems people don’t want to hear it.
People, generally, as well as many doctors just don’t get it. what are some of your ideas for addressing that?
I’d love to set up a blog like thie, keep meaning too.
Just started a page if you’d like to check it out- http://www.facebook.com/mswantsyoutoknow.
Good to meet you,
Bess
Bess, First, thanks for reading. Secondly, I told people first on a need to know basis. I found you’ll really figure out who’s on your side. Because when its all said and done people who love you will see you and not your disease.
You are truly preaching to the choir on this topic! Just like you, I’m in my mid-thirties and am no longer able to do many of the things I once could. My main source of “excitement” comes in the form of my very active (and intelligent I must say) 2 year old daughter. Sadly, I no longer work and I feel that I was robbed of my career aspirations. I in no way am knocking those who choose to be homemakers, but this is not what I had in mind for myself. I’m grateful that in my daughter’s young insight, she understands there are some things that are hard for me to do. I am also blessed that I have a husband and family that have rallied around me in this fight against MS. Since I am home during the day, I have figured out what works best for my daughter and I. Naptime is wonderful in that it gives me time to read, surf the internet or scrapbook when my hands aren’t too shaky. I’m definitely not “Suzy Homemaker” but I try my best within my limits. Now if I could just get my mother-in-law to understand that all of this isn’t laziness, it just is what it is! Sigh…that’s a topic/rant for another day : )
Erica, I caught that sly tidbit at the end! Sorry you have to defend yourself like that. But on the other hand thanks so much for reading.
Beware the numbing of the mind. I see too many people retire from work to whither away because there is so little they want to do which they can do to fill their days. Know there is so much you can do to help others. Letters to military over seas help. Volunteer to be a sounding board/mentor. Talk to some in a retirement home to keep them connected with the world.
I’ve often wondered if there are skype “rooms” where people with chronic conditions can go and just virtually hang out together. Heck, even skyping while playing a game on yahoo or watching TV together would ease the lonely monatomy of dealing with chronic conditions.
During my couple weeks in the hospital, I would have killed for my computer if only to get on-line and do something. Anything! I was bored with not being so sick, but still too sick to leave…
Well Lived, That’s an idea I never thought of. Very creative and it’ll help us both out!
Wow I thought I was the only one who felt this way but could never say it out loud for the fear of the evil glares & coments from those that are so fortunate to go to work and be out in the world giving something of themselves. I use a walker around the house up until about two months ago I was able to drive so I could at least feel somewhat normal, now I can’t feel my feet half the time so I had to quit driving so here I sit. I do get some housework done but afterwords I feel like I have been hit by a bus, lol. I long for something to contribute to there are times I don’t leave the house for weeks. I feel well a little worthless really, I don’t have many friends anymore they have all pretty much given up on me, My family is out of state so really I just have my husband who just burries his head in the sand. So yea a place where others like me could meet up would be just awesome!! MS just plain SUCKS!
Louise, I’m happy you reached out. Please look through some of the comments here. It certainly sounds like you are having a rough time.
Remember you can always contact me for company through the website. I wish you the best.
Reading this article I see so many similarities in our daily living with MS. I know everyone with MS is different with symptoms but have this disease as a commonality. After reading your writing and going to my support meeting I decided to try some of my “used to be normal” things I hadn’t been able to do in years and I can do some of them. I started back sewing with my husband putting more light in the area so I can see home to thread the needles and see the stitching. I actually did 1 load of laundry yesterday which my husband doesn’t want me to. Even though my mobility is limited on one side I was able slowly walk up and down 2 flights of steps twice. I felt great afterwards and went to sleep with no problem last night for the first time in over a year.
It seems I am finding my new normal and doing whatever I can.
Thank you Nicole because you have helped me out so much.
Denise, I’m so happy for you!
The definition of “normal” is what you are capable of doing that particular day in your life. Everybody’s “normal” is different even if you don’t have an illness. Talk about thinking differently to make adjustments as I go along. I depend on God to show me what I can do on a daily basis. It wasn’t easy getting there after working for over 40 years but I think I am getting where I need to be, so I will keep pressing on.
For some reason we were dealt this disease but it doesn’t mean our lives have to stop.
Denise, That’s how I think most of the time. Thanks for reminding me!
When I was forced to stop working after 30 years, I went through a lot of mental adjustments. One thing that has helped, has kept me from getting bored, is writing books. I’m nearing the end of my third novel. I secretly crave alone time – time when the kids are at school – so I can get back to my writing. When I’m too tired to write any more, or I get writer’s block, or just need to elevate my feet, I read. I think of reading as research for my writing.
Nicole, maybe you should think about writing a novel. You’re good with words and people relate to the things you talk about. You’ll never be bored again, and once you’re a published author, people will look past the wheel chair and see a celebrity.
Laurie, I’ve thought about the book thing before. It doesn’t sound like me though. I appreciate the idea though. I’ll be back on track after I finish reading all these comments! Yayyy for that!
hi Nicole! i hope you’re doing well…. I understand how you feel; I, too, get bored on SSD. Be careful what you wish for, huh? I keep as busy as I can with the gym, writing, and internet. maybe we should collaborate on something for/with other MSers…
Michelle, Count me in!
And here I thought that I was the only one feeling bored… well I see that I am not alone now. There are no places here on island to which I feel that I can “fit in” either… the senior center is for seniors… the gym is full of persons who have absolutely no mobility issues , even though I am still walking most days I have very little energy to do half of what I would like to do. The local center for Independent Living does not offer what I thought it would, a place to go and meet with others who like myself have a disability. The folks there just want to talk, about abstract things that do not hold my attention.. and I feel awful that I do not find it satisfying enough for me, but its just a fact. I would like to volunteer somewhere, but with the summer heat I know that is not something that I should even consider.. so yes.. I am bored. And unfortunately my computer and on line friends are the only real source of companionship I have during the day… I guess it just is what it is…Ella
Ella, I guess so…unfortunately. Maybe you can volunteer inside somewhere?
I am the same way. I read alot of books and surf the web, but it gets boring really fast. it is so frustrating when in your mind you want to go do something but your body won’t let you.
Courtney, That’s one of the most frustrating things to me. I’ve started meditating recently. I think it’s calming. We’ll see.
Hi again, Nicole, I think I found you on Facebook and I am glad I did. I get a notifcation that you have posted a message. This is the 1st one I got at my e-mail = [email protected]. I loved my first 12 years growing up in Gary, Indiana. Maybe the northerly Midwest location is why I got MS. Who knows? I have a flat house and have been sitting more and more for the last 4 years. I have a scooter to move around in, but try to get up often(ya, right) to avoid pressure sores on my bottom (no on warning me about this). I had 2 CCSVI treatments in Calif. and I was able to stand and walk(still with walker)p MUCH BETTER. my Handwiritng was NORMAL again, my bowel and bladder were not so WEIRD/Leaky, and my MIND felt so CLEAR. But sadly, most of these only lasted a few weeks. I begged and begged, but Docs will not do this same venogram on me again as multiple times damages the veins. But I am So GLad I saw that there are MS symptoms that Can Be Fixed without Drugs–!!! I’ll bore you again Soon with more Rants…please be my friend and say Anything you want…Yes, I get Bored Also–! The House Cleaners are coming so I have to go.
Deb,
Thanks for reading. How does your house look now? I welcome your rants. Gezz you can catch mine every Tuesday right here!
Can you volunteer at the Center? That might be an option because we all have a need to contribute. Entitled? Shoot yeah you are entitled to want more in your life. 24/7 hanging out at home would make anyone bored.
Laura, Thanks for the idea. Good thing is all these comments are keeping me pretty busy now!
Thanks, Nicole for your thoughts–even if you only say a few words, it helps me link to other pwMS. I AM SO GLAD SOMEONE IS OUT THERE BESIDE ME-! I just QUIT the local MS SUpport group – I would send an e-mail to about 40 MSers about the monthly meeting and only 4-6 would show up–where is everyone? A lady from the Nation MS Society in Phoneix joined our group here in Prescott to try to Improve things, so I decided it was time for me to Quit. Takes So Lomg to get ready to go OUT that I was exhausted and No Where Fun to Go after the (boring) meeting…yeesh! Even tho I am 58 I want to be young at heart-ha! I have been on disability retirement from work for 10 years–I worked in Calif. and retired with hubby Ray to Arizona because it’s cheaper to live here. No kids, one little white maltese dog, Ben who sits with me but runs away when I get mad and start spewing 4-letter words…take care.
Deb,Thanks for reading. I don’t frequent my local meetings either. It seems I always have something going on. BUT I still yell about being bored! Go figure?
Maybe we need to start our own centers! Have a section for TV watchers, an exercise area, a conference room for groups to meet, a kitchen, and a quiet space for reading or computers or puzzles. Gosh, that DOES sound like my mother’s nursing home!
Peace,
Muff
PS. I get bored, too!
Muff,
LOL!
I can so relate!! Even the things I can do, I don’t seem to have the energy to get myself going to do!! It’s just easier to sit around and do nothing sometimes. I work full-time, so I can use the excuse that I deserve to veg on the weekend, but I used to be so active and it is hard to watch life pass me by. I hate MS…I am thankful most of the time, but it gets to me… I want my old life back!!
I hear ya! I am alone all day. I don’t watch tv, so a lot of my time is spent on the computer. I can’t go outside in the summer, it’s too hot, I can’t go outside in the winter, it’s too cold. I feel like a recluse. It’s lonely and BORING. Age is just a number, if you get along with the “seniors” why not join in. And if they have restrictions on age, you could always be a volunteer.
Nicole, I am very isolated. I live in the hills, the closest market is over a mile away and I don’t drive. My friends work or are always busy. Most friends I lost years ago when I was first diagnosed. I too am alone during the days, I don’t get out much.
I don’t know how I would feel going to a senior center as a thirty seven year old. I am fifty six and it would be hard for me to go.
If you feel comfortable there get those dominos out and listen to their stories. I am sure it would be interesting.
I listen to music all day and do crossword puzzles. I am an online activist and sign many petitions everyday. I read many newspapers and try to get up late so the day isn’t so long. I do stay up late on my computer.
Hope this gives you some ideas although it isn’t very exciting. MS changes everything.
have you contacted your local chapter of the ms society? usually, the have info on ms support groups. also, a great web chat room—not always very active in the daytime–but worth checking out anytime is: people with ms. just type that into search engine.