Yup, I hear ya, Jenn! I was thinking the very same thing about my part-time job today. When I started it about 6 months ago, I felt pretty good with it, except for my hateful aching back. But I could cope with the job. Now? My knees hurt so badly that I can barely get up and around. I loathe climbing stairs but have a lot of them at work. I only work 2 1/2 hours but it's starting to feel like a 10 hour day.
Grocery shopping can be a real bear too. Dragging all of those bags up 10 stairs and into my house is the culmination of a really yucky trip.
And yes again, you're right about what appears normal to others requires Herculean effort from me I briefly worked at a pet store a year ago as a cashier. I realized how badly I was doing and that something was really wrong with me when I saw women way older than me hefting up those 20 lb bags of pet food with no effort at all! I'm lucky if I can get them six inches off the floor. Yes, we are very different from others in that way. Exercise and physical exertion does a number on us.
I think you'll feel better, Jenn, once you talk to your husband. I'm sure he's envisioning sunshine and flowers for you in your time off. He needs to understand that as nice and healing as that would be, it's about as far removed from reality as him suddenly becoming the President of the US.
Hi Happy and welcome! Your post sure does say it all. I'd love to shellac that statement about our pushing ourselves to the limit and by the time we decide it's time to quit it's well past it, and stick it onto a wooden block on my desk. It's a keeper!
Welcome to our support forum. In answer to your last statement, this is a great place to come for friendship and support. Oh, and information. It helps me to feel like I'm still keeping in touch with people that I couldn't possibly be in touch with physically, even if we did live close by.
Truly, the ONLY thing that I've found to help with flare ups is plenty of rest. And of course they will come anyway but not as often as when I'm tired. I just try to do some light Internet reading during those times. Or sleep.
You're right, the aches and pains are worse when we're not working and keeping occupied. (Except now even part time work is causing me to flare.)
Personally, I think it's great that you're volunteering for charities. Fibro is so insidious that you are doing a great job by even having the energy and stamina to volunteer. I hope eventually you'll see how hard you are being on yourself. The focus you used to put on your job now needs to be placed on you and on staying as pain free as you can. And that's a big job!
I am lucky that my sister takes care of me. I would be SOL without her. So I try to always give her a nice dinner when she gets home plus I try to handle icky phone calls (like servicing the furnace, etc.) If you focus on making your husband's life a bit easier when you can, then so much the better. You can consider it a part of your new "job," as well as taking care of your own self.
hi jenn ~ it seems your husband is trying. our loved ones just do not understand especially if you look great and act pretty normal. when we are flat down in a flare, even then relatives promted me to JUST DO IT type of thing! amazing isn't it??!! i had home health coming in during that flare to help me wash my hair..and i should be out there doing something. right.
sometimes our pain is just between us and God and others here who DO understand. it sounds like your husband will understand if you explain that you are expected to be certain places at certain times for volunteer work too, and many of those times you are really hurting, exhausted, etc. is anyone else feeling exhausted all the time??. i've been warming up my bathroom for an hour...too tired to take a bath!! it is a real chore....but i will just do it....this is a normal day of pain and not a flare....hugs, annie