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Had a realization today... Not normal is the new normal?


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So this morning, I woke up feeling not so great emotionally, but forced myself to get up and get dressed and get moving! After a couple hours I realized I was feeling better and pretty much normal physically, very different than things have been recently which was awesome (much less symptomatic, especially in regards to my GI Issues) :) I then, however, realized how much strange it is that my GOOD days are what stand out to me... which is where the catch 22 comes into play. 

It's obviously awesome to feel GOOD. To not get nausea and a lot of bloating immediately after eating; to not feel like I'm going to pass out every time I change position; to not constantly just feel worn down and gross. However, I really hate that it's gotten to the point where NOT feeling normal is my new normal... I want my bad days to be the ones that are few and far between and stand out, rather than vice versa. That's not to say that I'm totally non-functional usually (I'm incredibly grateful that it has not yet gotten to that point); however, there have been lots of days recently during which my discomfort and pain levels are higher, to the point where I could easily just sit in bed all day but I just ignore it and keep on going with my life. I don't like that I'm USED to feeling bad. But at the same time, I'm grateful that I'm able to push through and I'm appreciative of the fact that I have a greater appreciation for feeling well... 

I don't know if that makes any sense at all but basically it's just a very strange way of existing for me as I'm not used to this whole chronic illness/living in the medical unknown thing. 

 

How do you all deal with the emotional instability and changes that come with the physical issues? 

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I actually learned to enjoy life this way for years. I got up, said this *****, but altered my life so much and got new hobbies, like rowing in my 50 degree basement, starting at 5 minutes. Movies, hockey games (dizzy as all ****, but got used to it), fantasy sports, walking.....

How do you all deal with the emotional instability and changes that come with the physical issues?  You just adjust...I left playing football and beach and working on my roof behind and accepted it.

 

Unitl last October, when erythromelalgia hit.:(...but the point is the new normal worked for me....for years, so much so I stopped coming her for years:)

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Oh wow... both of ya'll sound like me some 5-7 years ago. It took me a few years to get diagnosed (probably longer). But once I found :"The One"... the doctor who believed me, knew it wasn't in my head, knew it wouldn't kill me, & knew the misery I was in...THEN I was able to finally move on to acceptance. And what I realized (which you summed up so well in the OP) was that my life as I once knew it was gone. I would never be the same again & I would never have it back. Therefore, I grieved my old life. I was extremely active being a runner and gym-rat. So it was hard at first. Then I realized that regardless of how dead tired I was, I forced myself to live. Ironically, it was a Nikki Minaj song that inspired me. It's called Moment 4 LIfe & Drake raps a part that says "Cause everybody dies but not everybody lives". It was at that moment I realized I wasn't "living".  I had already died a thousand deaths in my mind with all the pain & fatigue & misery. I felt that I had no where to go but up and I wanted to live as best I could. I was very thankful that I could function as well as I could compared to some others on here. I also stopped coming here as I worked on improving myself b/c I felt I was doing so much better. I check in every so often... just to see. I refer many to this site who haven't been diagnosed yet. And most importantly, I wake up, sometimes suffering, & push-through the day because I know I'll feel better (NOT normal) if I do rather than staying in the bed. Sometimes I feel I should receive extra pay for going to work like this while others have all good days with only few bad days. But that won't happen, LOL!

My best advice: find what motivates you and use it. Get out and exercise (SLOWLY) if you can cause you will feel better from it. And know that you are not alone.

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I feel like there was truly a grieving process of my "old self" that I went through. I learned through that process to find acceptance and also to be truly grateful for what I do have. It's not easy all of the time, but, I truthfully believe that you choose happiness. It's not something that comes from outside of you, from things you have or things you do, it is an energy that eminates from inside of you if you choose to let it out.

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  • 2 weeks later...

It's funny how grieving (for your former self) can happen.  I was diagnosed with severe ulcerative colitis in my early/mid 20s.  I was so sick.  One day it suddenly hit me that (with my health) I would never be able to go on the show Survivor.  The hilarious part is...I've NEVER wanted to be on Survivor.  I don't even watch the show, because it's so not my thing.  But suddenly realizing that I couldn't do it, even if I wanted to, really bothered me.  

 

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