Hang up my cape or remain as Superwoman?

[ladyphoenix]

It seems to me after all these years as "the healthiest and funniest sick women you will ever meet" is really starting to wear.

After 3 sticks and almost 3 hours of IV therapy and to come home with a very sore arm and tired body it seems like my "loved ones" are forgetting how much this really hurts and wears on me. It's like I have successfully removed all this "MS stuff" from there minds so we can all just keep on moving forward. I know my internal "ignore" button works pretty darn well but is it affecting the rest of my family and friends.? I do not want pitty and I do not want to see them hurt or feel bad for me but really..... I need a break sometimes. Is it a little too much to ask for?
I work more than full time and take care of my home/spouse/family and still it seems like everyone is asking for more, more, more.
I am known as the lady who stays pissed at this illness to have a target to defeat it and always has a smile or a laugh. When is enough, enough?

[cosake]

Hi ladyphoenix -

I think it is a tough balance for all of us with family and friends and how to be/act.

Part of you wants to suck it up and do the best you can and not let your symptoms show ever.

You also don't want to act all sick and tired all of the time either and drag everyone else down or make people not want to be around you.

But when you truly are tired, or sick, or not feeling well, you want everyone to understand, and they don't always. I think part of the reason is that there is no consistency in how we feel and act.

I still work full-time, but have resigned a volunteer position that I held at school.

I have slowly been giving my boys (15 and 12 and 1/2) more responsibility around the house - which I should really have done years ago. They help somewhat with laundry, dishes, vacuuming, setting and clearing the table and a few other small things.

I have also learned to say "No", or to tell someone that I just can't commit to something until the last minute as I don't know how I'll be feeling. This in turn gives me a lot less to stress and worry about because I haven't over-committed myself.

Sounds like you need to do the same with your family, but again it is a delicate balance - you want to be completely healthy but you're not. And you don't want to be acting sick all of the time and worrying everyone.

Good luck and I hope you can find some sort of middle ground.

[Jules A]

I run around like an idiot so when I fnally do snap with exhaustion and say something about the ridiculous expectations I place on myself my family looks at me as if I have lost my mind.

Of course for people who don't have MS, wish I didn't have it and are happy that I have been so lucky so far it is easy to forget or ignore the monster that forever lurkes in the back of my mind.

[oso49]

Hi, I'm Barry.

Please remain that "superwoman". I'm just starting this MS journey and don't yet have a firm DX. However, I DO have numerous symptoms. But at this point my dw doesn't understand why I don't want to take long walks (my feet "burn" terribly), looks at me funny if I fall immediately after getting off the sofa (vertigo issues) or wonders why I'm dozing off without reason (significant, routine fatigue). Maybe one day she will understand...

Hang in there, if for no other reason other than YOU! Just hang in there, please. Wishing you well.

[lydialou]

I understand completely about the "superwoman" thing that you have going on. I "suffer" from that same disability.

I retired four years ago after teaching for 31+years mainly because my husband's health was going downhill at a scary rate. I was also slap worn out. Anyway, my husband's problems have improved-his diabeties is under control (yea) and he has had both rotator cuffs repaired and most recently, he had his gall bladder out. Because he has become like the worst couch potato ever, I have become the busiest retired person ever. I do the normal housewifey things but also do the maintenance on our house and yard. I volunteer at the local hospital because that gives me my "people" fix.

So frequently I feel like I am responsible for everything. Most days it does not matter but some days I am totally ticked off that I get to be strong for everyone else (meaning my husband) and get to be responsible for everything.

The reason I am still up (1:57am Georgia time) is that I can't sleep. I am having foot surgery (again) in two weeks and it is the same week as our 45 wedding anniversary. Is that a double whammy or what? I am really worried about this surgery because the last one (a bunionectomy) did not work and not my foot is in worse shape than before. I keep thinking about what is going to happen to me when I have no one to help me out.

I have now had 5 chocolate kisses and gotten to whine. I feel a little better now. I will put my cape back on!

lydialou

[kif8skip]

The Spoon Theory

This analogy has helped my man explain to people about how he has to "hand out his energy spoons" -

You may have read this before , but always good to share

http://butyoudontlooksick.com/naviga...poonTheory.pdf

Peace ~~

[cosake]

I love the spoon theory ! Thanks for the PDF link because I had only seen it in a blog.

[Sammie]

We all want to be superwoman & when you have a family you are. We happen to be the glue that holds it all together. But there comes a time when we need to just put the cape on the coat rack for a little while.

I had to sit my family down & let them know that I couldn't do it all by myself any more. Course I did this all to myself, I was trying to prove that I was "normal". I really thought my family would fall apart if I didn't do everything. Guess what? It didn't fall apart & they were willing to help when I just wasn't able to. I just wasn't giving them a chance. I thought I was the only one that could do it.

I found out that it wasn't always the way I liked it or the way I would have done it. But it was getting done & I just had to learn to let it go.

When I started putting my MS first I didn't have as many flare ups & get as fatigued as I always was before. It wasn't easy but I forced myself.

I may have an advantage, my children always knew I had MS. I was diagnosed before they were born so they grew up with it. In fact we used to go to schools & talk about it.

Life gave me lemons so I decided instead of living a sour life I would make lemon pies with it. Be open & honest with your family & hang up the superwoman cape at least once a week & do something for yourself. You deserve it.

Blessings to you
Sammie

[cosake]

Bilateral kidney stone blockages and five surgeries/procedures over the winter forced me to accept that I can't do everything. I could hardly move, let alone cook and clean, etc.

Sammie says it well. I knew that I couldn't do everything, and that everything wouldn't be done the way I wanted it to be. But, that isn't going to hurt anyone. The clothes had a few more wrinkles, the dishwasher didn't get filled precisely full or the way I would do it, but everything worked out OK. No one suffered from it, and my boys are learning good skills to take care of themselves.

[futurmil2b]

It seems to me after all these years as "the healthiest and funniest sick women you will ever meet" is really starting to wear.

After 3 sticks and almost 3 hours of IV therapy and to come home with a very sore arm and tired body it seems like my "loved ones" are forgetting how much this really hurts and wears on me. It's like I have successfully removed all this "MS stuff" from there minds so we can all just keep on moving forward. I know my internal "ignore" button works pretty darn well but is it affecting the rest of my family and friends.? I do not want pitty and I do not want to see them hurt or feel bad for me but really..... I need a break sometimes. Is it a little too much to ask for?
I work more than full time and take care of my home/spouse/family and still it seems like everyone is asking for more, more, more.
I am known as the lady who stays pissed at this illness to have a target to defeat it and always has a smile or a laugh. When is enough, enough?

OMG... so glad to see this post... I can sooooo relate. Some days it is very hard to doing things around the house. My poor body stays tensed up a lot which has caused muscle tightness and some stiffness...especially in my neck/shoulders.

I have tension knots in my neck - one of them is hard and tight - it feels horrible. I try to massage it out. I also get massages every once in a while. I also try to stretch to help loosen my tight body.

My husband understands to a certain degree but still see me as superwoman. He does cook and wash clothes thank goodness.. I just wished he cleaned :-) I do not have small kids so my house don't stay messy. I do have a 19 year old daughter and she understands but to a certain degree as well.

I try hard not to act sick or anything... but I am grateful to have the option to lay on the couch and watch TV and not be bothered. I still work full time which I do like because it gets me up and out the house. But I can't wait to get home - turn on the TV, lay on the couch and just chill out.. it does help a little.

On the weekend I am in the house most of the time.. not unless I have to run errands... which is not often. I do take a small dose Ativan to help me relax. I hear a lot about Baclofen.. thinking about giving it a try but not sure yet.

It gets a bit rough and some days are a little better than others. When I need my low dose Ativan I take it (in the morning).. if I want a glass of Champagne after work I drink it.. both of these things help a wee bit.

I guess its a good thing if we can continue to work and take care of our family the best way we know how. But we also need to rest our bodies as well. Which I am glad to have that option. I cannot imagine having a small child to take care of.. I am also going through peri-menopause which is no picnic either..

Ms. Jay