Feelings

[unreal]

I am 44 use a walker have wheelchair when not at home. Today we were out and I have never felt so handicapped! It wasn't anyone just ME! Not even sure of my question

[SueAB]

unreal , I am so proud of you that you do not hesitate to use your walker or wheel chair. I had an Aunt, who lived to be 95 and absolutely refused to use any assistance. Even though she had a long life, she shorted herself and her family.

[ssdw1958]

I also have a rollator and a wheelchair I was diagnosed 14 years ago and when I was 46 years old when I was diagnosed. At first I was able to walk with no problem but now it has changed. One thing to do don't worry what others think. I know its easier said than done. I know I wish I could do the things I used to do.

I am not sure if this helped you.

ssdw1958

[unreal in reply to ssdw1958]

Thanks

[jimeka]

unreal i know what you mean. I went to lunch today with my hubby which is a rare occasion, and didn't realise I had progressed so much. The last time we went I was still semi independent but today, my hubby had to carry my salad from the salad bar, fill my dish as my hands couldn't hold the dish as well as fill it, he had to walk me back to the table, ms seems to worsen over night. When I got home, I think I must have been alittle stressed but the left side of my face went numb, with pain in my gums, behind my eye, and my whole left side felt bruised. So much for a romantic lunch. I was in tears when I got back, it was pain killers and bed for me. The thing is I dislike giving in to it. Blessings Jimeka 🌈 🦋

[unreal in reply to jimeka]

My husband does that for me my shakes are so bad and I won't take the medicine (I feel like a zombie)

[Morllyn]

I kind of understand unreal . It is what it is.

Oh yea, welcome to the group!

[unreal]

Thanks! 17 years and today was unreal

[greaterexp]

Not only are our symptoms roller coasters, but our emotions and levels of acceptance. I don't think there is a clear path for any of those things. My faith helps me greatly, but I am still sometimes shocked at the changes in my outlook, and still feel surprised on days when symptoms force me to do less, ask for help, or resort to using some assistive device. I think there is too much for any of us to take in all in one bite.

[erash in reply to greaterexp]

greaterexp

So true! Symptoms and emotions and acceptance roller coaster 🎢

[ssdw1958]

Well I have to let you know my husband and I went for a ride and went to Hampton Beach in NH we found a spot where I could be wheeled down there and I could be right next to the water it was amazing that we were so close to the ocean. I love the ocean and I haven't been that close to the beach in years. Then we went to a restaurant but it wasn't handicap accessible so that I like awas out we did go to a drive up I know how you feel, I was happy to be home. I know that feeling going to a restaurant and having my husband getting my food you know what isn't good about that he sometimes doesn't get what I want lol. There is one thing he has to do for me it makes me feel like a kid and that's he has to cut my meat it's frustrating.

Good night for now.

[Nom_De_Plume in reply to ssdw1958]

@ssdw1958 Thanks so much for the info about Hampton Beach! I didn't know and I live close enough to go there. Good to know!

There must be a paved walkway or boardwalk that you were able to use??

Incidentally, if anyone is interested, Siesta Beach on Siesta Key in SW Florida (gulf side) has Beach wheelchairs for visitors to use 😀 It has been rated as the best beach in the US.

[ssdw1958 in reply to Nom_De_Plume]

The ramp is across from 18th Street there are two or three handicap parking spots and a brake in the white wall and they have a ramp on the left that goes down to a cement slab.

The only thing is if you go later in the day you're in the shade which can be good if it's hot but when I went it was a little breezy and cool so just be prepared it was so nice to be that close to the ocean.

Have fun!

[Nom_De_Plume in reply to ssdw1958]

ssdw1958 Thank you *SO* much!! 😊

[erash]

Hi! unreal . I think I know what you mean. Sometimes I think everyone's staring at me as I wobble or struggle to do something ...then I look up and see that I'm right, they are staring. So I add word bubbles above their head "what's wrong with her?" And I feel very flawed 🙁

Then I reassure myself, at least I'm trying. It will be better when it's cooler...tomorrow...

I think I talk to myself much more these days. A friend said, "no, you are probably just finally listening." 😜

Sorry --early morning ranting....

[Iona60 in reply to erash]

erash You have kitties now. No need to talk to yourself. Talking to them is perfectly acceptable. In retrospect, I think that was one of the reasons that my dog was so smart. I talked to him constantly and he understood me perfectly, like a toddler.

[erash in reply to Iona60]

I do talk to my kittens Iona60 And yesterday I spoke with the vultures and Caracaras (who remind me of Moe in the 3 Stooges). Hah! They spoke back 😊

[unreal in reply to erash]

I talk to my animals also

[Daisuki51]

Hello @unreal , I really know what you mean. I myself my symptom got worse last few years and feel in a same way you feel. I agree with ssdw1958 and I try to think in this way too. I won't worry about what other people think It has been really hard for me though but I think I can do it! Have a nice day!

[ssdw1958 in reply to Daisuki51]

You know a couple of weeks ago I got some paper in the mail and it was saying thing, they had a list of thing like if you have a problem lifting your arm high, drouble walking etc. I said to my husband I have all of all of those thing. I replied to him and said didn't want to say it "I must be handicap " he looked at me and said your just reallzing that I said yes I never wanted to say it out loud. Guess what I am handicap there I said it again Do I get a prize haha lol bye for now l

[unreal in reply to ssdw1958]

I dont like to think about it either! I try to just do! I have 3 children that are very busy and keep me busy! I think that's good but its so hard

[ssdw1958 in reply to unreal]

I use to work in the school system, preschool and kindergarten, I remember before I was diagnosed there was this one mom that had different age children which meant she had to drop her kids off at three different schools. She would drop off her preschooler last some of the people would say oh here she is again. Which I wouldn't say anything negative to her or about her, because you know why everyone has a crazy life. So one day she was really frazzled and I said to her, are you ok she said I don't know and I replied to her it's that life thing it really gets in the way sometimes and she agreed and smiled, as if to say someone gets it. So don't let life get in the way just go with it, if things get done your doing great at the end of the work day we would say we have what ever the amount of children we were suppose to have no one got hurt then that was a great day. Don't let life get in the way. Give your children a big hug 🤗 . Keep smiling keep people guessing lol

[unreal in reply to ssdw1958]

I have 17 9 and 8. Really crazy! 9 and 8 are cheer leaders and 17. Year old does guard and band just to give you insight

[ssdw1958 in reply to unreal]

I have a 20 year old who is in college just got his pilots license and a 28 year old son , his wife and our granddaughter is living with us a crazy 😜 house we have.

[unreal in reply to ssdw1958]

Yeh thats awesome though!

[Nom_De_Plume in reply to ssdw1958]

@ssdw yes, it's hard to say. *sigh*

You get to swap out one badge of courage for a bigger one. 😊

[Juleigh21]

unreal Saturday and Sunday, I tried to do what a person my age can normally do w/o MS. Saturday went wedding dress shopping with my daughter and her bridesmaids and yesterday was church and we hosted a picnic in our new home for my family. I feel absolutely awful right now. I just want to cry, I'm so fatigued. When will I learn! Never, Ever 2 days of activities in a row! I think accepting our limitations each and every day with this dreaded disease is the most humbling of all!! Maybe that's why we get down in a funk sometimes.

[unreal in reply to Juleigh21]

You did it though and thats what matters!

[Doubled51 in reply to Juleigh21]

That's my biggest problem. Accepting that I can't do the things I did before ms. Trying to clean up e years of neglected shrubs and flowers. I could go hours before now it 1p mind and rest 20 or crawl to a resting place. But I'm learning the hard way. God bless.

Donnie.

[ssdw1958]

I agree with you but you know you will do it again.

Rest for now.

[ssdw1958]

Now I know what your first question was it's called life and it does get in the way some times. But it does keep us going.

[greaterexp]

Remember that"resilience" article that came out recently? That's us - most days.

[unreal in reply to greaterexp]

I didnt see the article but I agree about resilience! We technically have no choice

[JRootes]

I am also 44 years old and use a cane to help keep my balance and have a Bioness300+ to help my foot-drop and muscle spasticity in my leg. I do use a wheel chair if I'm expected to be going out for extended times that are far from my vehicle. My mobility in the hot humid summer weather is bad, but I have to get outside and try to help my wife with maintaining our home. Just plan on things taking three or four x's the time the task used to take.

[unreal in reply to JRootes]

When I walk I have foot drop really bad. I think that is why I fall so much. I have checked out Bioness do you like it? Told my doctor I wanted to learn to walk again

[jennie62]

unreal Thanks to your post about having a walker and a wheelchair I've decided that I should bring my walker that has a seat instead of just my cane when my daughter (23 , son-in-law 25? and granddaughter-almost 2) want me to go with them when they go out and about. They know I just sit at home most of the time because I'm afraid of aches and pains that night and following day(s) ,but they want me to get out and see the world.

Everyone here has some really great ideas I'm going to use!

Jennie

[unreal in reply to jennie62]

I won't leave house without my husband because iam scared. I can be totally careful and things just happen

[jennie62 in reply to unreal]

Same here unreal ! Before I had a dx I couldn't understand why I kept falling up the stairs. Well now I know why and do you think they'd stop? Nah.

You have a great husband! Sounds like he really cares.

Jennie

P.S. I AM DISABLED! I've never admitted that before. Hmmmm, guess I am.

[Nom_De_Plume in reply to jennie62]

@jennie62 they make a rollator that doubles as a transport chair. I like mine. I can sit when I need to rest, and, if it's too far to walk, my family can wheel me after adding the foot rests. FYI! 😊

[jennie62 in reply to Nom_De_Plume]

Nom_De_Plume Thank you for telling me about yours'! I have to get one!

I have a walker/rollator that has a seat on it, but sadly it isn't a transport chair. Hmmm, that could work though. If the store doesn't have an electric (chair-aaah!) cart-can't remember what you really call them-haha?) I can at least sit down when my legs decide to hurt too much to keep going.

Jennie

P.S. I'm going to "re"look at my walker/rollator to make sure I can't use it as a transport chair. I'm more than curious now.

[jennie62 in reply to jennie62]

YAY! My rollator does double as a transport chair!

[Amore55]

unreal I had 8 children in 10 years (they are grown now). But when they were very young I had symptoms of ms, spent six months in bed one time, couldn't walk or even feed myself. No doctor ever tested me for ms. I could have been diagnosed I believe 15 years earlier if they had. I homeschooled my kids and sewed my girls dresses, I am exhausted thinking about it now! 🤣 As my ms is progressing so fast all of a sudden, I have had to re-evaluate what really matters. You are doing great it sounds like with all you are facing. You have found a great support group who will always be here for you. Kelly

[unreal in reply to Amore55]

Thank You! You did have it rough! 10 kids. An d homschooled WOW

[ssdw1958 in reply to Amore55]

That is so wrong when these doctors just won't that extra step to find out what Is going on with your body. My doctor was the same way from 2001 I New something was wrong and I googled it and checked a reader digest book and figured I either had ms or Lyme disease I had ask how do I find out they said don't jump to conclusions what a bunch of Idiots.

You are a very strong woman too do all that you do 😊

[ssdw1958]

Nom_de_plum

I have a question we're did you get the foot rests? I have a rollator that also but I don't have foot rests

[agapepilgrim]

unreal

[agapepilgrim]

@unreal maybe because you are depressed? That's the way it happens with me.