Philosophical Musing on a Christmas Eve Morning

[MBombardier]

I am a writer, and last night I was watching a movie and cruising through my old Facebook private messages to see if there were any gems that I wanted to record for posterity (read future use) in them. I ran across a message about http://www.deathclock.com, and out of curiosity I plugged my information in again to see if there was any change in the date I would die. To my surprise, it showed that I will be two years older when I die than I was last time I did it a couple of years ago. I will be 100 years old and a few months. This means that I have lived less than 54% of my life.

Now, obviously, this is highly inaccurate, but it made me realize that I have been overwhelmed by the CC diagnosis, and subsequently learning that all my autoimmune diseases should be seen as sort of parts of a whole rather than viewed separately. I have developed a bunker mentality, where I have been coping for today without much heartfelt hope for tomorrow, though some of the things I do will also impact tomorrow, like the gluten-free diet. It made me realize that once again I have been allowing life to live me and simply surviving, rather than living life purposefully.

I suspect that I am not the only one, especially among those who are new to the MC diagnosis, like me, especially those who are still trying to control the D moment to moment through any means possible. It’s hard to escape the bunker mentality when you can’t leave the bathroom. It’s hard to think about the future when you just want the pain, cramping, and bloating to be gone, and to be comfortable for a few minutes. When it’s hard to think about anything because of the stunning fatigue.

But I just want to encourage you, this Christmas Eve morning, to remember that this life is more than just the next few minutes, the next few hours, today. Do the things you need to do to cope today, yes, but do them not only for today but to build health and hope for tomorrow. It has been said so often that it has become trite, but today truly is the first day of the rest of your life. And barring unforeseen circumstances, we all have a lot of life left to live. May we all live it well.

[Martha]

Thanks, Marliss.

[grannyh]

Well said! A hopeful message for us all!

There were so many times, early on when I lived in the bathroom.. that I never thought I would be able to venture out of the house. Then came the time that I thought I would never leave the house without diapers on.. took what seemed forever..but I am wearing "big girl underwear" just like everyone else now and leave the house just about whenever I want to.
grannyh

[tex]

Marliss,

Thank you for those inspiring words. There was a time when I truly expected to never be able to crawl out of the pit that I was in, and I honestly didn't expect to be able to live long enough to see my "golden years". But lo and behold, I eventually made it out of there, and as you say, the world was still there, only brighter and more beautiful than I remembered it. And when I experienced that "epiphany", it really was the first day of the rest of my life. Before, I took life for granted. Now, every day is a gift, to be lived to the fullest.

Tex

[Robbie]

Great post, Marliss - thanks! And great replies, too

[wonderwoman]

EVERY DAY IS A GIFT, EVEN THOUGH IT'S NOT TIED WITH A BOW.

[Zizzle]

Great post. I needed that, just as I wallow in self pity over all the holiday food I can't eat, and all the people who just don't understand. i.e. "Well if you eat it, it's not like you'll end up in the hospital or anything." Sigh. Trying to live for tomorrow seems better than trying to live through this weekend at the in-laws!!

[MBombardier]

Dear Zizzle! I am sorry you are dealing with insensitive people right now, and I am glad that my musing encouraged you (and everyone else--you are very kind to say so. )

I snuck on here thinking I would be the only one, and lo and behold, the board is almost as active as ever!

MERRY CHRISTMAS, EVERYONE!!!

[Gabes-Apg]

Confession time
To avoid judgement by others i told white lies this christmas, each time someone asked me what I was doing as in their minds 'you cant be alone at christmas' (In my mind, i am alone most other days why is xmas any different?) I dont have family nearby so in the past i have spent xmas with friends and their families etc

I told a white lie that i had plans, when in reality i didnt,
I didnt want to watch others eat and drink what i couldnt, I didnt want to have to explain why us MC'ers have to be soo careful about what we eat, ie that there is no such thing as a little bit of gluten, or little bit of dairy. (zizzle which is the line i get, cant you just have a little bit, that cant hurt?)

It is very humid in brisbane at the moment, i am struggling with fatigue as I pack to move, i didnt have the spare energy to be jovial with others.

I hope everyone survived the day without too much unsettlement. Events like christmas are full on for anyone, nevermind us MC'ers.

[Gabes-Apg]

PS

cable tv here in Oz had 'the simpsons' on ALL day which kept me entertained as I packed boxes.


WOO HOO!!!

[MBombardier]

Dear Gabes You need hugs, too. Our plans are really no one else's business unless we choose to divulge them. My mother taught me to be careful of others' privacy by asking, "Do you have plans tonight? I was wondering if you'd like to..." That way, the person could decide if they had plans or if they wanted to participate in what I was inviting them to do. Or, "Do you have plans for the holiday?" means the person can say "Yes," even when those plans are to sit around in jammies all day, eating chocolate, drinking wine, and watching TV.

The holidays can be very difficult. Even those with storybook lives struggle with unmet expectations, and others can have worse trouble. I contacted the pastor of a friend of mine a few days ago because I was worried about how seriously depressed he was.

I hope that your fatigue passes off, and your packing progresses apace. I have moved more times than I remember, and I hate it more every time. Take care of yourself.

[Polly]

I love this thread. Marliss, thanks for musing out loud to us. And all of the responses are terrific, too. Ah, yes, family dramas at holiday times! I dread them but figure we all have them, from the relatives who drink too much to the ones who hold old grudges to the insensitive/critical ones. The older I get, the more I appreciate FRIENDS because I can choose them. Like all of you!

Gabes, good luck with the move. I hope you are replacing fluids/electrolytes even more than you think you need to. Won't it be wonderful to be settled in your new environment? I hate moving, like Marliss, but in this case, it sounds as if the end result will be worth any and all hassles.

Good luck!

Love,

Polly

[Joefnh]

Gabes moving is always a trying time, its great that you were able to 'skip' the festivities... Of course as you mentioned its hard for us with MC to feel festive watching others eat what we cannot.

Like you I chose a quiet day as well and avoided the relatives and all the drama that was sure to play out this year.

Catching up on the Simpson's sounds like a great way to pass the time while you pack.

Best of wishes for your packing and the move.

Take Care

--Joe

[Gloria]

As I ate my turkey sandwich while others were indulging in the holiday fare, it occurred to me that I'm able to tolerate it because of everyone here. Subconsciously I feel the bond of this board - it's a family in the sense that we all share a common inconvenience that no one else understands. I don't expect them to understand, and I don't need them to understand because I have all of you.

I did something different for Christmas this year. I invited a single man from our local genealogical society to join DH and me for Christmas dinner. DH was able to have all of his fixin's and someone else who would have spent Christmas alone was able to share the holiday with us. I substituted ham for my usual lamb and didn't miss a beat. I had to resist with all of my might when I put away the olives after dinner tonight, though.

I have one more holiday get-together next week with my brothers at DD#1's house. They usually don't bug me about what I eat, so I think it will be fine. Except they love deviled eggs, and I think I'll have to make them. Maybe I can talk DH into making them.

Gloria

[Linda in BC]

Well, I survived the Christmas festivities, despite doing a lot of baking of regular stuff like pumpkin pie, tortierre, mincemeat tarts , shortbread, etc. for everyone else. Had a houseful of company (relatives) all day and just kept feeding them! I am OK because I have this wonderful Gf fruitcake I made ( even tho it falls apart) , gf shortbread and my blissballs. I forgot that I had made regular gravy (with the intention of not having any myself) but I did put a bit on my turkey and rice dressing, and so had some discomfort and gas last night but nothing major. Other than that it went ok. Have one more day to get through and then my DD and her fiance leave and life can get back to normal, sort of. Still have a big birthday party for my sister to get through on the 29th.

Thinking of everyone and hoping no one ingests anything that will cause them suffering, and that you can find some joy, or at least Peace, in the season. Thank you Marliss and everyone for your inspiring thoughts. Good luck with the move, Gabes. Packing is yucky but unpacking ad arranging a new house I always have found fun. Like you, Marliss and Gabes, I have moved probably 50 times in my life and have it down to a fine art.

Love linda