trying to keep my cool: hello community... - My MSAA Community

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trying to keep my cool

redman44 profile image
21 Replies

hello community. do anyone have people in their lives that expect more out of you than you can give? I was having problems for years before I found out what was wrong. now that I know its like I get tired quicker and my temper is shorter. I was the supergirl of my family. sometimes they still think I am. my husband say don't bite off more than I can chew. but others wont let me. say they don't wont me to give up on myself. I'm never giving up I be SO TIRED. sometimes I just cant do anything. if I get hot I really get in a bad way. I don't want to burden them with how I feel I already feel bad because I'm sick. and the thought of going on disability really makes me tired. but I'm gonna keep praying. I thought the meds would help me keep working but its not. thought about going to school but my sight is bad some days. guess ill get use to being lazy and enjoy my grandbaby

21 Replies
Juleigh21 profile image

I was just having a very similar conversation this morning. I'm not working anymore b/c of the MS. I have friends and family say to me now- since you're not working could you...and whatever they need done. I want to respond... Sure I'll do that for you- that's why I get disability retirement. Or how about this... have you read the Spoon Theory that I've asked you repeatly to read? I'm pretty good in the morning but after lunch- I'm done. If I'm to make dinner and participate in the evening, I need the afternoon to gather more spoons. I know they can't see my fatigue, but Oh Is It There. I wish I could go back to being super woman and fall into bed each night knowing I was everything to everyone that day. 😢

redman44 profile image
redman44 in reply to Juleigh21

I hate you all is sick but I thought I was going crazy until I came to this website. I'm so thankful to God you all is here others that can relate to me. if you don't have MS you don't understand.

CalfeeChick profile image

My oldest daughter still thinks that I'm Wonder Woman.. She's coming for a 3 weeks visit soon and wanted me to make a bunch of reservations, rent camping gear, have all in readiness. I had AAA send her on the info and suggested she get on the internet. That was months ago. She wants me to go on a houseboat for a couple of days. Like I need to take my compromised balance on a boat. It wouldn't be so irritating, but she's a nurse and should have at least a basic knowledge of my limitations..

jackiesj profile image
jackiesj in reply to CalfeeChick

Oh CalfeeChick....I My son is in the medical field and always finds 1)a way to make me feel useful 2)rest or exercise suggestions..think they just want to fix us?Hard for them to accept that if it can happen to mom it can happen to them? dunno....not alone there for sure....

Bamfan1442 profile image

Hello redman44 ! Sounds like your husband is supportive, so that is a good thing! My bf isn't, and expects waaay too much from me. Thinks I am just being lazy and don't want to work. I have no one else to turn to and no support except on here. These folks are amazing and they help me get through my day, at least by helping me feel a sense of compassion and self-worth. That is what we all need when we can't get it from anyone else on a daily basis, positive thoughts. Not just criticism, high expectations and rude attitudes!! Stay strong and have peace in knowing that you have people here who can truly relate and sympathize with you and your situation, because we've all been there at one time or another. :-)

greaterexp profile image

redman44 , MS is really tough in that we have not only to learn to adapt to decreases in our abilities, physically and mentally, but we have to figure out how to help others learn how to adjust to the changes, too.

My sweet husband has always thought I was Wonder Woman, too. I've had to talk with him and explain how strange MS is, what symptoms I have, and explain that some symptoms aren't there all the time. It's still hard for him to switch gears sometimes in changing his expectations, but I thank God that he does try. I think it can be hard to communicate these things, but if we explain with love and understanding for their position, too, our families and support people will usually try to understand.

It's simply being wise to be realistic about our abilities as best we can. If you can't work, spending time and your limited energy on grandkids is surely not being lazy!

I'll be praying that your family can truly hear you and understand your needs.

WAshingtongirl profile image

You've received excellent responses here, redman44 . All I can add is that I am my own worst enemy. I so much want to be that woman I once was or think I could still be if I just pushed myself a little harder, that I often don't say 'no' even when I know I should. I know others have high expectations of me, but I'm afraid mine are even higher. 😕

Enjoy those grandkids! 💕

redman44 profile image
redman44 in reply to WAshingtongirl

I feel just like you do. I want to still be superwoman. I was the one everybody depended on to handle things. but each day I'm learning my body. I do what I can and the reset waits.

erash profile image


I vascilate b/w feeling invincible and feeling impaired...and I find others perceive me in that way too.

With those fluctuations, It's difficult for me to have realistic self expectation, and if I verbalized a deficit one day, others perceive it as a permanent deficit rather than something that may come and go.

It can be frustrating but then I'm grateful that my symptoms do fluctuate and very grateful for the days I feel invincible.

The challenge is whether to confide or hide my deficits. Lately, I've been doing more hiding. I hate the pity others express "oh, I'm so sorry you have MS" well me too but we all have burdens right?

Ok I'm rambling...sorry, it's early 🙂

redman44 profile image
redman44 in reply to erash

I don't like the pity looks. at first I was limping I would stay at home. now I don't care about limping. I'm gonna do what I can while I can. your not rambling your helping me and others. thank you

Doubled51 profile image

I'm glad to hear others have the same problems with their families and understanding the effects of ms. To me my worst problem has been fatigue. I was the wide open one. Now ive gone from 100 mph to 10 many days. Nobody can understand how you can be so great one day and totally worn out the next day. On the bad days it's an effort to go to the bathroom. My wife sometimes thinks it's an excuse to do nothing but nothing has ever been further from the truth. Sometime I get the look of yeah right when I talk about the "symptoms of the day". It is hard for them to understand that today I can walk straight and tomorrow I might need a cane. My wife has suffered with type 2 diabetes for many years and is one tough woman but she doesn't understand how it feels to all of a sudden to be drunk from one day to the next. We have a contract on our house and it's gonna be interesting finding a new one packing and moving in this new world of fatigue. But ive vented my frustrations long enough. Good luck and good health to all. God bless.

Doubled51 profile image
Doubled51 in reply to Doubled51

I must explain that my wife has been great most of the time. While I was in the hospital she left very rarely for 5 days. Was a mother gen after I Was released. But now that I've been diagnosed she soesnt understand the every day uncertainty of ms. But before I was stricken with it neither did I. We've been together for 46 1/2 years so we're gonna make it whatever happens. Not understanding does not mean not caring I know. I had to clear that up because I would never doubt our love or caring for one another

WAshingtongirl profile image
WAshingtongirl in reply to Doubled51

I hope all goes well with the sale of your home, Doubled51 , and I pray you take care during the move out and the move in when the time comes. 💕

GerriG profile image

Last night I was told by my gf that she thought i was exaggerating my symptoms because they got worse after the dx. She refuses to educate herself on Ms because she doesn't believe that that is the problem regardless of MRIs and what doctors have said and hundreds of blood test. Let alone that Ms neurologist has confirmed my first attack 15 years ago. So now she's telling me I should see a therapist because she thinks it's depression that's causing everything. It's bad enough to feel trapped in your own body without feeling trapped in your own home.

Bamfan1442 profile image
Bamfan1442 in reply to GerriG

Yes GerriG I'm in the same boat as you. Your home should be a place of peace, comfort and security not a place where you feel constant stress, anxiety and fear about what is going to happen on a daily basis. I am trying to find the courage to figure out a way to find another place to live. It is getting bad and I know it's only going to get worse :-(

Transistional housing is the best option for me right now since I have no income and waiting for Dx and SSI approval. But at least I won't have to deal with the constant stress of knowing I am unworthy and unappreciated to someone, and not being able to relax or do anything that helps me cope, like going to a support group or making new friends (in person) who are having similar issues. Isn't it a shame and so frustrating when loved ones (or so I thought) won't bother with taking the time to educate themselves about this illness, or even try to at least understand what you're going through and dealing with? Sending good wishes and compassion your way, and hope you feel better soon! :-)

redman44 profile image
redman44 in reply to GerriG

I hate you have to feel that way.pray it gets better for you you already have enough to deal with

kdali profile image

It's not laziness, it's owning your disease. Yes, I am a giant "crank-face" also when MS overwhelms me, and I hate that so much, but most of the time it's my own fault for thinking my abilities are what they use to be and pushing myself too hard. I am still a super girl and always will be. I juggle so much more now than I use to, even if it looks like I accomplish half as much. I bet the same is true for you! It took some time, permission from myself, and loving support for me to change my perspective and realize that I still wear a cape...even if I'm having a forced rest day. Your husband is right!

Doubled51 profile image
Doubled51 in reply to kdali

I was blessed and I know it sounds crazy but I was awarded Ssii disability in 2008 after 2 disabling back surgeries so when I was diagnosed in April I didn't have to fight that battle. I still new enough that I'm still learning and accepting that there are days that I can't do anything. That's my hardest part is sitting feeling sorry for myself. Again I was blessed to not get this far down until I was older so I didn't have to suffer this disease for along time. But it's not easier to accept. When my wife is able to retire I'm sure being with me more that she will see that I'm not exaggerating things. At least that's my hope and prayer. By the time our house is sold and we are moving she will see how fatigue is affecting my everyday life. When I have to rest so often when there is so much to do. When she has to take up the slack or wait for me to rest and finish what I started. Lol. God bless and good luck to all.

jackiesj profile image

I am so sorry.At first I stopped answering the phone, I couldn't take one more..WHY aren't you doing this, why cant you commit to an hour a day etc.Even in volunteering they usually have to know if you are going to make it.I admit, Ive gooten tuff, hard and defensive at times.I shouldn't have to stay in a room just because that day is lucky and I don't need people to assume I'm healed...Assume the word, break it down..Assuming means,: Making an ASS out of U and ME.I apologize for the swear analogy but when my sister assumed on the cuff Id take my dear 88 yr old mom into my home....I gave up.Sometimes turning the question back on the person is great.

How about doing this that day trn it and say back, that is a great thing for YOU to do.Repeat it in your mind over and over before it happens and they get tired and get lost.I now let others know IF I show up....I'm retired, I do as I need to do that keeps me healthy, got a problem with that?arrrrr.

redman44 profile image


jackiesj profile image

It is not lazy to just be you and be with your grandbaby..we all have paid into the system and disability is there for that reason!Work often defines us in ways and it is even hard for a person to retire naturally...I think you are still able to work a certain amount of hours(maybe from home?) even on disability....I am trying to find paperwork for Soc Sec...right what YOU need to do!

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