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How Do You Find Your New "Normal" ?

Feb 14, 2016 4:39 PM

Life is so different from what I am use to and how it use to be. I find it hard to let go of those things I use to do and enjoy so much. My house is slowly being modified to make living manageable. Bars on the toilet seat, shower chairs, rails, new kitchen aides to help me function in the kitchen like a jar opener, etc., handicap placard for the car, application for door to door transportation. I like the flare up box which I will develop but I do not have flare ups because I have never been in remission. I see people doing things and with fond memory remember when I use to be able to do and wish so badly that I could still do. I can not let go of the desire to continue life as normal. My mind says I feel I can. My body says no I can not. I do not know how I will be from one day to the next. Each day I do know there will be pain. What level is a toss up. What other body organ will not function as it did before my illness is frustrating. I am a prisoner in this painful body. What is life suppose to look like now? How do I find my new normal?

Feb 14, 2016 6:27 PM

We welcome you to your new normal. Sorry if it is painful... Sounds like you've got a handle on making the necessary adjustments to daily living. The grieving process is monumental and paramount! Huge undertaking to say the least. It is easier to adjust cabinet heights and house hold appliances . it is much harder to grieve and be okay with , the grief process we all experience. Our grief not only affects us but everyone in our disabled pain filled life. It is hard. It is overcomeable...we triumph every time we reach out for another emotional support and do not stay miserable in our heads. Normal, the only thing I know about Normal is it is a setting on a washing machine. (Giggling) it is tooo early for me to be able to absolutely describe my new way of living. I am struggling to get my balance with it. I do know that when I open up and share with others, then its not all about me anymore! And that's a huge relief..I come from a place in other support groups ( yes, the 12 step kind) .. We are not going to get better unless we help each other. When I think about me and me alll day long, I am miserable and in pain. Believe me that's tooooo much for me and my family to handle...lololol. I am told get on with it, feel it, and finding some one else to help...and it works every single time. Even if it s texting encouraging words, or telephoning someone else.I can not become so self absorbed and think only of my pain. Yes I have it. It sucks , I learn what I need to do, what I can't do...and then I help someone else. I am forever grateful for those groups of people that showed me a better way to think about my un-normal experience of living. Love to all, and Blessings to all, Terri

Feb 14, 2016 8:14 PM

Wow Terri, Thank you so much for responding. I haven't gotten to the grieving part of this because I am focused on not letting go of what I want. What I know. What was normal. Even this is new. Typing while experiencing tremors. I do not know if it is from medication or my illness. Funny I have found when I am able to extend someone a piece of practical advice here I leave feeling whole and a bit lighter. You are correct taking the focus off of self makes life a bit lighter. This pain seems to make sure that I know that it has not left me by giving me a jolt that causes a unplanned scream or moan. I am in a helping profession and trying to hold on. I have not applied for disability although my docs don't understand why. Reading people experiences in here with the system leaves a lot to be desired.
I appreciate your direction and time. Thank you. Would love to hear from others who have been dealing with their pain long term. Showers of Blessings!

Feb 14, 2016 8:21 PM

Anytime sweetie,I was a fantastic nurse.. And it took me years to file for Disability as well. I completely get the stuff you are going through. I validate what is happening, and I hope you get to know everyone here..we help each other like no one else can. Much love and Blessings to you, look forward to getting to know my new friend! Terri

Feb 14, 2016 8:40 PM

MySistersKeeper, I'm sending you gentle hugs. Like Terri said, it's good that you are preparing your home. We made adjustments as much as we can to our home, but if I ever need a wheelchair we will have to sell & move. I've been on the path to my new normal since 2010, but only started accepting & grieving 2 years ago. I thought I was at a good place, but now I'm in counseling. I have to say that I have less mentally bad days than I use to. Physically, your guess is as good as mine on what tomorrow brings. Lol. I've been jumping from flare to flare since December, and literally just ended one two weeks ago. But tonight I'm getting symptoms of another one coming; sjogrens blisters. There's never a dull moment. Because of my health deteriorating I'm doing PT to strengthen my muscles in my legs, hips& low back. I've been trying some of the suggestions from others on here, and will start reducing my sugar intake this week. My body, health, & life isn't what & where I hoped is be at 54, but I'm out going to throw in the towel and quit. Three years ago I just might have though. Lol Really!!

You asked how do you find your new normal. I think it's a day to day road traveled, where you do grieve what once was, what was hoped for but will never be, and figuring out new ways to still find enjoyment in life. The enjoyable times may even be shorter, fewer and farther between. But we have to refuse to let our issues defeat us. And like Terri said, helping and focusing on others distracted us from our pain, even if only for a short while. Give yourself time to grieve, each and every time you realize something else in your l life has forever changed. Struggling with my fibro fog & memory loss is challenged every week, when I suddenly realized I can't mentally function like I need to. It's hard on my family too, to watch the drastic health deterioration. I have to try and find a new normal for them, so it doesn't Rob them off all of me, or Rob me from being with them. I have so many incomplete things in my house, and I've been unable to even plan what to do, being at a standstill for over a year. My counselor is working with me to plan out a calendar. Take every day as it comes, one hour at a time. Pace yourself with rest periods between every activity. And if you don't achieve everything you planned in one day or one week, just tell yourself "I've tried my best & tomorrow is a new day, another chance." You will be in my thoughts and prayers as you begin to find your new normal. It's different for everyone, and so is the time it takes to find it. Hugs, love, & prayers! πŸ™‚πŸ’•πŸ™πŸŒΌ

Feb 14, 2016 8:48 PM

Flappy not another flare already? Sweetie I am so sorry, you just got thru one...please rest and do what you need to do, and we will be here for you! Love ya, Terri

Feb 14, 2016 10:00 PM

I haven't accepted things and worked through the grieving process either. I'm sorry you're struggling too. I have no advise to offer but just wanted to say you're not alone and send some support. Do you have a diagnosis?

Feb 14, 2016 10:10 PM

My sister's keeper, I hope you find that the friends you have on here are always available and will encourage you and me on very hard days. We are with you during it all. Welcome to your new chapter or version of life...can't wait to get to know you more and we do have fun in here! I promise, there are good days too! Much love, sweet dreams and pain free rest!

Feb 15, 2016 1:00 PM

Terri, that's exactly what I said to my hubby... Not another one already! I have an appt with my PCP tomorrow and I'm going to ask him to do some tests. I'm wondering if something else is going on because I can't seem to get over anything before I'm down again. It's been this way since Christmas day, and I'm literally feeling exhausted with one activity, like showering or doing dishes, sweeping a room, etc. Any suggestions on tests? πŸ™‚πŸ’•πŸ™πŸŒΌ

Feb 15, 2016 3:19 PM

Terri, was a wonderful nurse? Try are a wonderful nurse. Anywho, my sisters keeper, welcome. When I got to the middle of last year, I was actually mid-way through the grieving process, but then a sight-threatening diagnosis last week literally turned that process into mush so I've basically had to start all over again with the process. I actually used to think that, "No, this can't be my new normal. It just can't be." Low and behold, it is and it's scary at times. I just have to, like Terri said, Take the focus off myself and find someone else to help. I know it's not a lot, but it's the best I can do with what I have.

Feb 15, 2016 4:26 PM

I know it is hard at first it the same way for me I have to relay on everyone else to help I don't know how you do it but u r inseparable to people like me it can get better over time πŸ™† have to say keep it up I hope we can talk more . Happy belated valinesdayπŸ€πŸŒΉπŸŒ·πŸŒž

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