Last reply 2 weeks ago
Joy Holloway

I am a 73yr old youngster in the US. I was diagnosed in 1998. Could sure use someone to tlk to who understands the trials of every day living with ms. I am a positive person, but sometimes I need to vent and family thinks I am complaining. Also I need to hear some one else say they felt it too. Sorry if it sound’s as if I am on the pity pot. Don’t mean to be. No I am really not sorry. That felt rather good. Lol. Thank ya’ll for listening.

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itsmewithms
2 weeks ago

Hi Joy- I’m also in the US, in Wisconsin about an hour east of the Twin Cities. I am 54 and was diagnosed 15 years ago. Currently I get along fine but recently unemployed and looking for a job…and you’re right. Family doesn’t really get it…husband thinks I should be able to change my diet and exercise my way out of this…as he basically did with his UC and look what Terry Wahl did..right…that wasn’t all diet honey…how about estim treatment and the chemo… ;-0

And trying to explain fatigue which is a slippery beast…he says to exercise more to build up my stamina or to eat right so I don’t have it. OK, honey, I’ll go to the gym and ask them for a workout for my nervous system…huh? we work with the muscular system ;-0 but my PT actually has a phD and has studied issues with the nervous system a lot so is a good resource and comes up with good challenges for me weekly.

So- yes – they don’t really always get it. This group does 😉 vent here and ask your questions. Little magnifying glass in the upper left helps me search for previously discussed topics and icons in the upper right can help with searches on individuals and comments on previous posts or direct messages. Lots of good support on this site 😉


joy_holloway
2 weeks ago

Hi Wisconsin. I was born in Minnesota. Yah, thanx for the tips. As for the fatigue, they call it lazy. The PT just ask ” Did you do it like I showed you?” Or that doesn’t hurt does it? The family! Miss out on a lot of family fun because I’m just plain too slow for them.


itsmewithms
2 weeks ago

I was born in Minnesota too ;-0 a good place to be from as they say!

At least my PT has good neuro training and has worked with other MS patients and Parkinsons. He is scheduling long sessions, 40 minutes, because I’ve explained that what I can do in the morning is different than what I can do in the afternoon or what I can do before walking a block is different than after walking….or standing. As we work through the complete set of PT he is prescribing for the week he sees what my endurance is. Then I can ask him what I should prioritize if I can’t do it all. If I can’t do it in good form should I stop (my right knee starts to cave in when I get fatigued) so I understand when I should stop pushing.

I’ve tried to explain to my husband that all time spent upright is on the clock. If I said I could walk 10 minutes and he stands around 5 minutes first…well then I can only walk 5 minutes. He’ll ask if I can walk a couple blocks and he is catching on that I can walk as long as we get on with it…no stopping to talk, no walking slow in crowds and mincing about, etc. The way has to be flat…as in paved or concrete flat and not bumpy or grassy or soft/squishy. Now that he understands the parameters he is getting better but people unfamiliar with me and my endurance are hopeless.

I’m trying to find ways to be included and have family fun that don’t include me walking a lot or standing around. We’ve always enjoyed going to plays, watching movies, playing games, etc. I want to add bar stools to the kitchen peninsula as that is a family gathering spot where there is a tendency to stand. I think I can enjoy that just as well in a seated position 😉 I’ll also tell them to walk around the park while I take a seat on a bench and read my book. I find ways to give myself a break-


stumbler
2 weeks ago

@joy_holloway , you’ll find this forum is a good place to vent. We understand your concerns and the need to get things off your chest.

It’s best to vent here rather than create an atmosphere at home. 😉

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