Very Upset: I wish I could be even 1/2 as... - My MSAA Community

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Very Upset

Jj12010
Jj12010

I wish I could be even 1/2 as active as I was . Went from firefighting, vacationing, bowling, skiing, live events and several other activities to nothing. Summer a little better because I get outside for yard work but that means waking at 530 before hot out. Winter just stay inside mostly. I’m lonely, bored and just sad. I don’t know I just miss my old life

18 Replies

You're in good company here. Accepting and adapting to the changes MS forces on us is a challenge. I'm not sure when you were diagnosed, but for me, it has been nearly 2 years. Most of the time, I feel as though I've come to a place of acceptance and have learned to adapt, but it is a bit of a roller coaster in all ways.

I know lots of folks here find ways to volunteer, such as reading to kids, etc. My little quilting group keeps me quietly active and involved, for which I am very grateful. The gals there also understand my limitations and fill in the blanks when I'm having a rough day.

Do you have friends or family who are supportive? I'm afraid the burden tends to be on us for initiating any socialization.

Welcome to the group here, all of whom have been wonderful support to me. We look forward to getting to know you better. We become an extended family very quickly.

Welcome Jj, to the most awesome, supportive, loving virtual family of MS warriors. & i feel ya, i too sometimes miss my old life, i used to ride horses🐎🐎 & hike, walk around the lake, & i truly know how lonley this dreaded chronic MonSter can be. But you are welcome here, we'll be here, & leave the light on. We're in it, to win it! Strength in #'s!! Many Prayers For You & Blessings too.😻😍😁😘🙏🙏🙏💜💙💛❤💖☝---Jazzyinco

It's hard letting go. We go though the stages of grief as if we just lost someone close to us. In a sense we did...ourselves. This is a good place to come to when you are feeling down. It's a place to vent frustrations but also a place that you can get out of yourself and help others, which in turn helps us heal. You can try writing down things that you like even if its as simple as reading the newspaper with a cup of coffee with no interruptions or sitting on the sofa with your dog or cat in your lap watching TV. This helps to find the things you can do that make you happy and takes your mind off of what you can't do. Have you tried going to a gym? Most gyms have A/C and you can still get a good workout with other people at your own pace as to not set off an MS attack. There's also volunteering at hospitals or even coaching a T-Ball or little league team. They have very good cooling vests etc. for being outside in the summer. I hope you start feeling better soon!

Jj12010
Jj12010 in reply to hairbrain4

Well can’t work out . I have everything and last now 2 min on bike before legs give. I wish I could I am ex firefighter as in that was my career I was in pretty good shape. . Now just trying not to get overweight because of wheel chair and I stand as much as possible so atrophy doesn’t occur. Yes I have pool but depends on weather

hairbrain4
hairbrain4 in reply to Jj12010

I am sorry about your legs. Have you looked on mass for any videos that have exercise routines that you can do sitting? I got a yoga one from them a couple of years ago. You sit in a chair or on the floor & they are very simple but keep muscles toned. I understand the weight thing. I was also her active before MS & have had all but quit most physical activity. I also have degenerative bone disease in my back with bone spurs. The yoga video helps. Again keep posting here cuz you have moral support & if you can find something you can do that helps others, that will help get you out of missing the old you. Praying for you.

Jj12010
Jj12010 in reply to hairbrain4

I do a little yoga I will check out what you sent for site. I walked from bedroom to bath then to kitchen and made coffee this morning. That made me feel good. I like Yoga now just have to get motivated again. Sure would like to walk to yard to feed birds. That will be my goal because we have been getting lots of rain and what a mess in electric chair.

Think we all just miss our old life. I know I went from wide open to1/4 throttle over night. I was diagnosed a little more than a year ago and still have a hard time accepting the fact that I can’t do the things I used to but I’ve learned that I can still do a lot of them in moderation.

I love messing around with old cars but it just takes a lot longer to finish something that used to take a few minutes might take a few hours. But It helps take my mind off all the things I can’t do.

But you came to the right place. When your feeling lonely and down there’s always somebody to help you and offer words of encouragement.

When I was first dx this group of people helped me they some rough times learning that my life wasn’t over it was just different. So welcome and if you need us we are here.

Donnie

Jj12010
Jj12010 in reply to Doubled51

I have noticed things taking longer. Sometimes so slow I find myself trying to catch up. I’ve been waking super early to get as much done as possible before sun heats up. I so miss the sun, the beer, the tans by the water. I’m trying to slow down but feel like I’m lazy then. Dr appt 1 hr maybe he can assist me

Doubled51
Doubled51 in reply to Jj12010

Ask him about modafinil. It’s worked for many of us. For me it’s been a wonder drug. It’s geberic for provigil.

It’s the only thing that gets me up and going.

Donnie

welcome to the club i have yet to find any of us who wish things were like they used to be aint going to happen I wish I was 19 and pitching for the NY Yankies but that aint going to happen either your at the right place no Dr or expert knows what its like to have MS the only one who do are right here I feel your pain but it is what it is you got it now its up to us to deal with it and live with it yea its very icky deal and we all have differant degrees of it but new things are coming on line every day please check out horseback miracles.org I went monday 6-18-18 to check it out 700 miles rt for me it works ! best I have felt in 10 yrs p.s. had colan cancer on top of ms in 2015 chemo rad surgery more chemo still no sign of it and no progress on the ms but it helped me better than anything I been told cant wait to go back money back if it doesnt work for you stress gone in one visit no scam no gimeck it just works for all our mental thinking and physical therapy I was left in shock and speechless with the results and no side effects !hang in there and stay here with us if you want the truth and what works and helps

Fancy1959
Fancy1959CommunityAmbassador in reply to timothy228

Timothy228,it's Fancy1959 and I totally understand where you are coming from. They say I've had Ms for about 20 years and until 5 years ago I had no clue this monster had invaded my body. Sometimes I think Ms and the disability it brings can be harder on those of us that were extremely active prior to this monster striking. I was an athlete who played competitive volleyball both coed and women's, I ran a horse farm which meant 10 to 12 hour days of grueling labor that I loved every moment of, I rode horses as much and as often as humanly possible spending weeks in Missouri doing nothing but riding at horse camps Etc. I backpacked with the Boy Scouts, being the only woman to ever do so, I hiked, I love to camp, and anything outdoors was exactly where I wanted to be. Nothing was too wild for me to try because I loved every minute of high adventure activities!

Fast forward to today, I can't walk without a walker in front of me or unless I'm on my electric scooter because my balance has deserted me. My hands are numb to the elbow and I have no fine dexterity left or tactile sensation left in them. My bladder has a mind of its own which is so very embarrassing. And if I'm out in the heat much at all you can write me off for the rest of the day. Is it tough, you bet it is! Sometimes it gets to me as well and I feel so very frustrated and depressed it is hard to realize it could be so much worse. But I keep in the front of my mind, and I encourage you to do the same thing, to realize how very lucky we are to have MS!

Yes you heard me right we are lucky to have MS! Let me share the story that puts it into Focus and I'm sure you have your own story you can use to put this into Focus. I had two sister-in-laws by marriage. My first sister-in-law was diagnosed with pancreatic cancer. She was a smoker. She died less than a year-and-a-half after she was diagnosed. She never got to saw her children grow up and would never got to grow old with her husband. My second sister-in-law was diagnosed with breast cancer. We lost her less than two and a half years after she was diagnosed. Her children were grown but she missed seeing her grandchildren grow up and be successful. Not to mention the fact that she left my brother with a huge hole in his life and he now has no one to grow old with.

So, think about this. Our future might not be the same that we pictured even 5 years ago but we still have a future. I get to enjoy my daughter's children who are now four and six and I look forward to watching my son's get married and being able to interact with my future grandchildren. We still go places and travel, thanks to my wonderful husband who make sure I do much more than I could by myself! I plan, and pray, and hope we get to grow old together. And with all the advances and DMTs that are hitting the market today, that the future will hold better times for me. Remember to stay positive because that will help your overall outlook on life and will keep your stress level down and help your MS. My glass is always half-full, not half-empty and I encourage you accept a similar attitude that works for you. You cannot understand how much having a half-full attitude will help your overall disease and keep yourself praying and hoping for the Cure. Please think hard about what I said and take care of yourself until we speak again. And please always remember that together we are stronger!

you got it !me in the big picture I got it made no chair yet so I can still get in p.u. and go anywhere i want at least today please check this out because of your love for horses Horseback miracles.org if I had not been there on monday i would not have ever thought it was anything but another gimick but I heard about on 710 knus radio steffen tubbs podcast people who kids had ms and tried every thing else than this place who had traveled from all over the world to get there i had never heard of it but went and if I told you I have no stress at all with one visit thats after the week before waiting on labs and mris yea 2 one for cancer and one for ms talk about stress i had more then 10 guys No More Stress for me today thru that program I am going back for more in july from what Terry told me only 30% of the horses make the cut Stress is the big deal for me no more and from what i know now i can expect improved mobility also thats from people with ms who have been there please listen to that podcast if you can the women from england with her 5 yr old with ms who went there you know more about horses than me but they are amazing at least the 30% that are used check it out and let me know if i can be of any help ps I have nothing to do with the program other than the fact I went there myself and it helped me like nothing else

Looked it up I have family in Colorado and that’s where I am from . Very promising . TY

Jj, wow! You R from Co. Me too, we live in the famous Valley of mnts. Of Larimer, County. We love it here, i couldn't handle the city any longer, too much sounds & stuff goin on, Tim where's tht miracle horse ranch? Will chk. Out the link. Thanks sooo much for tht. Blessings💖❤💜😘😍---Jazzyinco

Jj12010
Jj12010 in reply to Jazzyinco

Yes from Basalt Co. Sister is in Carbondale. Came to Michigan to be with dad then he left and went to Kentucky and now he has passed. I was just in Colorado last year for class reunion that was fun . 30 years boy have people changed. I’m not a big city person neither Brooklyn is very small we do have a NASCAR track here which twice a year at packs up around here. Other than that not much happens. Sometimes I mess up other times not so much I like a lot of green and wheremy family is it’s mostly the red rocks. However I have a sister in Phoenix Arizona and that is way worse For green. LOL

I hear you! I used to play hockey now I can’t even stand on skates

Jj12010
Jj12010 in reply to Sickboy516

Heels r out. I like watching hockey but can’t skate . Go Wings. Very humid and hot so not getting much done,maybe tonight like 2000 or 2030. I was a Firefighter worked hard to be one of three on Dept. Now Medical retired. I miss it

Jj12010
Jj12010 in reply to Jj12010

1/3 females on Dept

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