Do You Ever Forget or Act Normal?

[Boxerlover]

I'm not sure if that is the way to put the question or not. What I meant to ask was if during a good spell, do you like to pretend you are "normal" or ever forget? I know as far as the pain is concerned, we can't forget, but during a good spell do you ever kind of forget before reality hits?

The reason for asking is I have been going through a good spell, my rheumy kept me on the same dose of chemo since it looked like the lymph nodes in my chest had shrunk. I have been more active and feeling well since the end of May. It has been nice since I had a pretty rough period since last Christmas. We've gone out to eat, gone to the games, my service dog is almost through training so we have been taking him more places. All seemed good.

Then I had my appointment with my pulmo and found out I am 1 percentage point from needing O2 (during activity, at rest I am perfect). He also gave me a script for a wheel chair to use when I would have to walk long distances. Wow, wasn't prepared for that at all. Talk about a reality check. I can "pretend" all I want that I am "normal", but at the end of the day I am sick. Obviously this is no surprise, but it hit harder than I expected. My pulmo really wanted me on O2, but I guess you have to be at a certain percentage in order to qualify. Believe me I am quite happy that I am not there yet!!! Just very ironic, my mom has smoked since she was 13, my dad about the same(although he quit many years ago) and both their lungs are fine and I have never smoked anything ever and bingo! I know smoking or not has nothing to do with it since it's an autoimmune disease but still. I was the one complaining of them smoking and asking them to put down a window!

Well, no matter I am going to enjoy feeling this way for as long as it lasts!!

Melissa

[Mark N]

Melissa, no matter how you word it I think I understand what you mean. For me it hits like tonight, I go to my son's game and see people walking by without chronic pain. It hits me that my life should be like that but pain totally disrupts my life. My time of having good days are over but seeing others living life without pain reminds me of what I am missing out on.

Although it is tough that you are going through this disease I am glad you are having a period of time with good days. You are right to enjoy them as much as you can and I hope they last a good long time.

[Leeaelle]

Hi Melissa ~ I'm soooo glad you're having a good spell and you can act/feel normal for awhile! :D That's wonderful! Bless your heart, you deserve it! I pray it lasts a GOOD LONG time!

I can't really say that I 'forget' about my condition cause the minute I move it reminds me. lol. Maybe if I'm just sitting still and talking to someone I may not think about it for a few minutes, but sitting very long is painful too. lol.
So like Mark, my days of having "good" days are over and it's just a matter of accepting that. :rolleyes:

Again tho, I'm so happy you're getting a reprieve and I hope & pray it continues for you!!! God bless and keep us posted! Hugs, Lee :D

[suede]

I'm with Mark, I am so happy that you have been feeling well since May that is a lot to be happy about.

As I said though as with Mark, I don't really have good days and can't really remember I have days that are better and worse but even the days that I am feeling better I know that the wrong move or even an attempt at being normal will only put me back in extreme pain.

I hope you continue to have good days and for a long time.

Linda

[Boxerlover]

Thanks so much for the well wishes, I really appreciate it. I even got a dirty look for using the handicapp parking so I must even look better!:D

Mark, your comment about looking at other people and thinking hey, that should be me I totally relate too. I often do the same when I go out. Usually when I don't feel well, I am so internally focused I barely even notice other people but when I can go out and do something fun, I often watch people with a whole different perspective.

On a good note I do have to say that the bad days definately help me appreciate the good ones!

Melissa

[gambles]

It isn't quite the same as you are referring to, but I constantly overestimate what I am capable of. Of course I can vacuum - then after pushing it 3 feet I am stuck on the ground in agony. Of Course I can pay the delivery guy if I'm home alone - then I have to call and cancel because I can barely get to the toilet. I think I live in constant denial that my life circumstances have changed permanently and constant misery of unending pain at the same time.

Suzanne

[Boxerlover]

Suzanne, that's how I am with flares. One day I can be somewhat OK, and the next I can't brush my teeth. I used to think it was almost cruel, that I would have a good day and then it began to feel like a tease. I sometimes thought it would just be easier if I was just done everyday, that way I wouldn't get disappointed. Presently I can be grateful for the good days but it is a very fine line depending.

melissa

[gambles]

Melissa,

I feel so alone that it was nice to see you put my feelings into your words. Thanks for that!

I wish I could appreciate good days, but I live in fear that it will be good minutes or hours which it actually usually is. To me, hope is a four letter word - meaning it's bad. I had true hope for a solution for one of my pain situations and when it fell through 3 days later, I was despondent. I am much better to live in denial with no hope, but most people don't understand that. It is more about acceptance, which I have definitely NOT achieved, than about depression.

Does that make sense?:)

Suzanne

[Boxerlover]

Suzanne, absolutely! I know for me when I was going through one of my worst times ever, in and out of the hospital, surgeries, bad reactions to meds, etc. Once things seemed to settle down I was unable to. I was always waiting for the shoe to drop. No matter how hard I tried to convince myself to feel differently I knew it was only a matter of time. Kind of like what just happened. I have had some of the best months since I've become this ill, we went on vacation, doing some work on the house,etc. living a "normal" life. I'm going onlong minding my own business and BAM! It's like my disease is a living entity wanting me to know who's really in charge. This one hit me really hard and took the last tiny bit of hope that maybe just maybe I could beat this thing. Denial, hope, acceptance it's all there.

Melissa

[mrsQ]

Some of my medications makes me be very umm stupid...it just like I have been drinking. I get to thinking I feel ok I can do this. Last week I thought I could pull the liner of one of those really big above ground pools out to the back a field.LOL I ended up doing nothing but slamming myself into the ground.
I use to act like I was normal or not in bad shape because I was ashamed & I did not want to cause other any more work. I can't do that anymore ...I can't go shopping & then go to the car and cry. Now I just don't go.
I think it was Mark that mentioned watching people functioning without pain. It has been so long I don't remember what it is to walk someone and be thinking about anything other than the pain or ending up on the ground. People who don't have to think about it don't realize what an amazing gift that is.

[Boxerlover]

How true, I was watching some reality show and someone got sick, and for me what was so interesting was how their personality changed. Now I'm not talking someone got a migraine and then in hours were back to normal, this person got some kind of chronic problem. For me it was like a lightbulb! See other people act the same way as me when they hurt too! They got better in a few months and talked alot about how hard it was blah blah blah, and then they got back on with their life like nothing happened.

We have to live it for a lifetime and yes it changes personalities. In a way watching that justified for me that everybody would act differently if they went through the things we go through and it is OK. I'm not sure I'm making much sense. It's like I am an alien and as I watch "normal" people I no longer have that connection with them. I'll marvel at things they can do and of course wish I could do the same. It's a very complicated process.

Melissa