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Old 08-16-2015, 03:32 PM
LIT LOVE LIT LOVE is offline
Magnate
 
Join Date: Mar 2010
Posts: 2,304
15 yr Member
LIT LOVE LIT LOVE is offline
Magnate
 
Join Date: Mar 2010
Posts: 2,304
15 yr Member
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I've found when I spend a week with my relatives, they are able to get a better handle on what I deal with daily.

Although you might not appreciate your brother's delivery, I suspect he's probably 1) right and 2) he's concerned about you.

Prior to starting on a combo of meds that worked for me, I had spend 3-4 years in high level pain with little to no relief and very little sleep. When I did sleep I wasn't getting enough REM sleep. It completely changed my personality and my family was constantly questioning if I was angry at them, even though I wasn't.

It also took me years to accept my limitations, to learn to adapt and to be able to accept help when needed. When you have a child in the house it does make things more difficult.

Your bf is thinking of you like you're a Stay at Home Mom, instead of someone that happens to be home because they're unable to work.

I agree working with a therapist is crucial. If you can find someone experienced with chronic pain patients, even better.

You need to sit down and figure out what you must do everyday/week, if you can do things differently so as to not exacerbate your pain, and if your bf and daughter can contribute more to help, or if you need to increase outside help.

I found I really need help twice a week when I didn't have a high quality dishwasher to keep up on the kitchen adequately when I was living alone. I've lived without one, a version where I might as well have not had one, and finally a good quality one, where a quick rinse is all I need to do. If you're going to cook, your daughter and bf should be able to rinse and load their own dishes. Your daughter is old enough to reasonably ask for help in the kitchen prepping dinner and cleaning up, and maybe she can receive an allowance in exchange. I also bought a roomba to take care of my floors, which I felt was a good investment.

I've also learned to stock up on things so that I don't have to make extra trips to the grocery store. By shopping at Costco, it saves me money in the long run... I buy things like cheese and meat and portion them up in freezer bags if needed. The same thing would cost me 4x as much at the grocery store and I don't have to make any extra trips. (Maybe plan a shopping trip once a month with your bf, so he can do the heavy lifting. It'll take an hour or two.) If you live in an area where you can get organic produce delivered weekly, that's great as well. I even use Blue Apron once a month or so.

When you have something that is particularly important to you, like watching the game and making dinner/snacks for the game, that REALLY is a day you shouldn't plan anything else major. Schedule your hair appointments when your bf is gone, your family isn't around, and your daughter is at school. Next time, even plan a nap or a few quiet hours before the game to rest up. --If you don't make these type of priorities, the adults around you will question your priorities. I understand why you wanted to have your hair colored, but it didn't to be done that day. If you were already flaring, your reaction might have been much louder and angrier than you realized. (It becomes a weird thing when family members feel they need to focus on our pain levels if we're not adequately changing our activities as we flare. They start looking for cues to anticipate emotional outbursts, anger or even wanting to control our behavior themselves because they don't want to see us in extreme pain. And that just isn't healthy for anybody, especially children... I had a friend whose mom had been chronically ill before passing when she was a teenager. She was more attuned to my pain level then I was, which made me realize I didn't want my son to turn out the same way. The best way to avoid that was to avoid flares whenever possible.)

When my son was your daughter's age and until he left home for college, whatever he needed was my priority, but I was also single, so that made my life less complicated. You need to also make your bf a priority if you want it to work. Plan a date night with him, and make sure you rest to be able to enjoy it. --This can even be dinner and a movie at home while your daughter spends the night at a friend's house.

It is not an easy or quick transition to figure out how to live a contented life with this disorder, but it is possible. Everyday you have to balance the risk/reward of every activity you do and how those things impact your life and your loved ones.
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