As the Clash says, should I stay or shou... - My MSAA Community

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As the Clash says, should I stay or should I go?

Wtfisup profile image
19 Replies

Today was that ever elusive good day, when I’m sure I can drive and be ok long enough for there and back and feel as normal as I can communicating with society. I wanted to accomplish errands on my own and maybe do something fun.

So much on how the day goes depends on my transportation, my funds, office/store hours (always check when closed for lunch), the weather, whether people are patient with me, etc..

I spent so long trying to plan it out and trying to decide should I go here or there that now I’m too tired and it’s raining anyway.

Mad at myself. Always mad at ms (refuse to capitalize disease) and it’s effing unpredictable, ever increasing, never ceasing symptoms.

OK. I feel better now purging. I know I’m heard and not judged here.

Hope today is a good day! 🫧 Go Phils! ⚾️

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Wtfisup profile image
Wtfisup
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19 Replies
carolek572 profile image
carolek572CommunityAmbassador

  Wtfisup , you had me up until the ‘Go Phil’s’ ! 😂 Just teasing!

I, like you, like to plan my outings, with as much ‘stuff’ as I can. I don’t like it when my trips are just one stop. So, I plan my haircuts around going to the grocery store, bank, doctor’s visit, hardware store, etc. I feel super accomplished that way!

Also, like you, I do not capitalize ‘ms’, and I put it in quotes to constrain it. I like that you have the same attitude as me! Don’t get mad, get even!

Keep Smiling, my friend :-D

Wtfisup profile image
Wtfisup in reply tocarolek572

I will keep smiling Friend!

I was a huge Cubs fan, then my awesome daughter and her awesome (hope to be son-in-law one day) man moved to his home state PA. Love him and his family and now love the Phils (especially Alec Bohm).

Sports is actually one of the things I truly enjoy. It’s free, exciting and I don’t need to leave wherever I’m living at the time to enjoy it.

Only problem is I really get into the game with clapping and talking/yelling at tv. Currently living with 80yr old mother and she despises that noise because “It makes no sense, they can’t hear you.”. I’ll remind her of that when she watches the news.

❤️✌🏻🌎🫧⚾️

carolek572 profile image
carolek572CommunityAmbassador in reply toWtfisup

I yell at my tv when my Bruins are playing! I even have a whistle to blow whenever I see a penalty! It’s so much fun to watch your beloved sports team! Give your mom headphones so she doesn’t have to hear you. Just saying… 😝

Greentime profile image
Greentime in reply tocarolek572

You have a whistle!!! 🤣

carolek572 profile image
carolek572CommunityAmbassador in reply toGreentime

And a striped black/white shirt, Greentime ! I kid you not! 😆

Greentime profile image
Greentime in reply tocarolek572

Oh my!! I wonder how many penalties you call that aren't caught by the refs on the ice! haha!

carolek572 profile image
carolek572CommunityAmbassador in reply toGreentime

Too many to count, Greentime ! 😂

Greentime profile image
Greentime in reply tocarolek572

🤣

twooldcrows profile image
twooldcrows

if we think too much about what we are or want to do i will end up not going for as the day goes on we will start to tire out ....if there is something i want to do ,i just have to go ...good luck with what helps you so that you still go and do what things you want to get done or just do it ...love and happiness in what makes us happy ...we are still the same person we have always been just have someone along for the ride that we didn't plan on ridding along with us ...sure wish we could just shake them off ...talking about that MONSTER THEY ALL CALL ....MS ...someone i just don't like but have along for the ride ...i am still the same ..gained weight for not working and beind as busy as i use to be but ha i'am still me ...so go forward for what it is you want ...if can't do it the same that is okay just find a way ...keep on keeping on....love and happiness is the greatest medicine to help fight the MONSTER... laughter also is great medicine...

AquaZumbaFan profile image
AquaZumbaFan in reply totwooldcrows

These are true words!! I try not to overthink it whenever I can and do like you do just go for it! I’ve lived in a rural area for 31 years and we have always had to multitask when we would go to “town“ you never just would go for one thing. I’m still in the same mindset. I feel like I’m way past the angry stage… Not to say, I don’t get frustrated, which I definitely do. Truly as a long timer with MS, you just have to be adaptable..let’s just rock on today and I will try not to get washed off the road with “hurricane Debby” today.. It got kind of ugly last night and we lost power for a bit but luckily we do have a back up generator..

Greentime profile image
Greentime in reply toAquaZumbaFan

Good luck!

AquaZumbaFan profile image
AquaZumbaFan in reply toGreentime

Thanks ! Got it all done and I am home for lunch! Whew! That was a lot!!

JSSimp profile image
JSSimp

I just try to do a group of things together with starting off with a circle of appts on days. Usually things work out well with fatigue later on. Just the other day I started with a dentist, eye appt, stretch lab and the grocery store was the last stop.

Dentist appt 20m from home, eye appt 10m, stretch lab next to eye doctor and grocery store 4min from home. Thankful I was able to complete them all.

Praying for everyone health and strength daily🙏🏾

Biggums profile image
Biggums

Everyday is a good day Wtfisup. The only bad day you can't complain. MS sucks and is always changing. That is part of being MS strong. You have to mentally be strong to keep moving. MS teaches us to be appreciative of what we can do and to improvise to do other things. Some days we can't do things we did the day before or 5 minutes ago. Faith grounds you. As long as you can move you're still in the fight. Anger may help you exacerbate and we don't want that.

Irishgirl76 profile image
Irishgirl76

What an 🦅 spirit. I live in a nursing home and now I am getting transportation * local. Just getting out is good. Electric wheelchair is next. I feel restricted in so many ways ,like you and my condition. I have bowel and bladder issues that is difficult. I found a place to swim for free and love ❤️ but accidents brings me fear 😧. Many activities I love seem hard to achieve. 🙏 thanks for your support!

mrsmike9 profile image
mrsmike9 in reply toIrishgirl76

I sure hear you on the B and B issues! I went to my Gastroenterologist yesterday as I poo around 10 times/day!

Wtfisup profile image
Wtfisup in reply toIrishgirl76

Swimming is so great for us and accidents happen, that’s why they’re called accidents. Patience is such an important factor in us and those around us. You sound like a very strong resilient person. The sunset here is beautiful tonight and it’s free out my window. Hope yours is splendid too! 🫧

PotatoLoafCats profile image
PotatoLoafCats in reply toIrishgirl76

I hate accidents too. I have to keep adult diapers next to my bed for nights where I am afraid I won't make it to the bathroom fast enough. It is embarrassing, but it happens unfortunately. You should have someone put flame decals on your electric wheelchair haha. I hope you are doing well.

PotatoLoafCats profile image
PotatoLoafCats

I completely understand. I always feel bad that I can't make plans due to my ms. I never know how I'm going to feel until the day of, and it can change drastically at any point of the day. I've lost many friends due to this. It even affects my doctor appointments sometimes. I've gotten to the point where I only leave the house for doctor visits. However, this past weekend, I forced myself to drive because my mom and sister were too busy. I went to pick up a 29 gallon fish tank. Then the next day, I went to a tropical fish store. I was so anxious driving again that I was shaking and my stomach was hurting. However, the next time I drove, I wasn't so anxious. It definitely lifted my mood to be able to go out and drive myself wherever I wanted/needed. I could only go short distances and only to one place a day, but it was still nice. So I understand completely how frustrated you are. I hope you have more good days where you can go out!

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