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Aunt Diana
Member
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Posted: Mon Jun 15th, 2009 03:00 |
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You are not boring at all, Marion. In fact you are quite the opposite. You are embarking on the most "cutting edge" treatment that medicine has to offer. It's unfortunate that most people are simply oblivious to this.
When I read about your heart breaking situation with your husband I just want to cry.
Maybe there is an asset to being older while going through all this...because the hormones aren't raging as they were while one is in in the twenties and thirties.
I am confident that as you progress through the Mp and conquer your illness you will be transported back to your proper age and stage and will be able to resume normal activities for your age.
Most people are self centered. Until they experience something beyond their own ability to overcome they believe they are invincible. I know I used to think that way. My poor mother had a Th1 illness (only now do I realize this) and as much as I loved her, living with her constant laments seemed an impossible road, no amount of caring or love could change the reality of what she endured, and yet, we all blamed her for being a "hypochondriac".
We are living in an interesting time because for the first time in history these illnesses are starting to be understood.
I guess what I am trying to say is "forgive" your husband his lack of understanding....he is only human. You will survive and be able to build a new life when you are through this. Whether it is with him or not will remain to be seen.
Life can be very cruel and very sad. But it is better today than it would have been before the MP. At least you have a chance now to pick up the pieces and rebuild your life once you are rid of these pathogens that are slowly klling you.
In another few years you will be dancing and laughing and enjoying the life that has been stolen from you. This horrible nightmare will be history and you will be a much better person for having gone though this.
I do empathize with you...finding supportive people while on this road is quite difficult.
Keep in mind, if this is the "fountain of youth" you may be dancing long after all these unsupportive people are long gone.
Last edited on Mon Jun 15th, 2009 03:01 by Aunt Diana
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Lyme 1987, neuro cardio fatigue achiness brain fog depression, anxiety. Pacemaker, D.1,25 32; D <5; 12/07 <6, hydrocodone, lorazapam, , benedryl, zantac, colase, Noirs, cover-up or avoid sun, house <30lux
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Scarlett
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| Joined: | Mon Mar 3rd, 2008 |
| Location: | Ohio USA |
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Posted: Mon Jun 15th, 2009 12:46 |
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Aunt Diana:
What a beautiful, heartfelt reply to Marion!!! I can so relate to what Marion is saying about being boring. All around me are people talking about their adventures and I have nothing to add except, "I rested all weekend". Your response has given me hope and I believe it will do the same for Marion and many others. Bless you and happy healing.
Scarlett
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Sarcoidosis, gastric paresis, osteopenia, hypotension, migraines, dry eye,insomnia, transient global amnesia, initial (2/08) 125D48, 25D58, 4/18/08 25D37, MP-3/3/08, PhaseII-3/28/08 Ambien, NoIRS, low lux home & work, lt exp r/t commute
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eClaire
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| Joined: | Mon Sep 25th, 2006 |
| Location: | Virginia USA |
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Posted: Mon Jun 15th, 2009 13:50 |
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Yes, it is difficult to feel "not boring" or "interesting" when your adventures have to do with whether or not you slept last night or had diarrhea yesterday!
All of us know this trip we are on is anything but boring. It is quite exciting actually. If others were as open to us about our adventures and our lives as we are about theirs, we'd be quite the fountain of information and inspiring stories, but people are afraid of illness and have been taught that to talk about it is taboo. Unless of course people are sharing the new vitamin they are trying and the affect it is having on ther hair, their skin, etc. We love the cosmetic!
And Marion rest assured that even in your illness, your vivaciousness and vitality for living come across in your posts. Even in your posts you are not boring.
We see you and know what is in your heart, but more importantly you know your heart and your spirit and your spirit wants to soar. Soon enough you will have a body that will help you do that.
In the meantime, I want to share that at times I also feel terribly uninteresting and am bored to tears with myself, and whether it is IP or not, it helps me to think of it that way. I do that because there is no changing folk out there, no making most people see that our journeys are every bit as valid and deserve to be honored, and that our journeys are perhaps even more heroic than their own.
So I know I am not alone when I say you do not "read" boring.
Hugs to you dear Marion, Claire
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42mo on MP; CFS FMS MCS COPD hypermob IBS/GERD osteopor; 125D48 25D<4;
NoIRs during most daylight outings; Ph1.Dec06 * ModPh2.Jun07 * AbxBrk.Mar-May08
* Ph2.Oct-Nov08 * Ph1.Jan09 * Olm.alone.Jun10
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Deb Grabetz
Moderator
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Posted: Mon Jun 15th, 2009 15:41 |
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One thing I find the most difficult is that I had a full calendar "years ago"...now I basically rest to be able to do my work. It is hard to never know if next week I will feel up to something. Unfortunately, I push myself too much to do things that I want to do. I am still trying to recover from our trip and although wonderful, it really took a lot out of me. I'm still learning to know when enough is enough.
One important thing I've learned though is that I never knew how to say "no". Now, I'm never concerned with what someone will think if I have to stay home and take care of myself. What matters most is me!
Marion you are far from boring...your posts are always full of life, (even though we know you aren't feeling well) and good advice for the rest of us. You have made a difference on this site, so take each day one at a time and know you have a special place here!
Hugs all the way from Michigan to you in Mexico!
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Sarcoidosis/lungs, lymph,liver, GI, neuro, D12542, Ph17/07, MPh2 9/07, B12, cover up, NoIRs,return to work after 2 years off- 4/07D2511
5/09 D25<4
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Juanita
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| Joined: | Thu May 3rd, 2007 |
| Location: | Alberta Canada |
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Posted: Thu Jun 18th, 2009 22:01 |
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Oh, Marion! Lamb! No. You are not boring. You are sick.
Often, healthy people can have a very difficult time understanding what being sick is like. People who love you will try to the best of their ability, but not everyone is skilled with empathy.
You are NOT boring. You are sick. And getting well through the MP, which is a challenging treatment. This is hard work and it is not for those who like quick palliatives.
I think that the most difficult part of the MP is how neurological IPs can make you feel something that isn't true. I've seen your photo on your posts and you are gorgeous. Your words show your spirit and you are beautiful there also.
Not being able to see that right now.... that's a part of the journey we go through in our goal to heal. It's usually a sure sign that you are killing bacteria. And dead bacteria eventually means health. You are investing in your future so when you are actually old, you will still be well and still be beautiful in body and soul.
You are so brave to participate here and I'm so glad that you do. It must be very challenging at times to have brain fog or exhaustion and then think in Spanish, but type in English. Here, you are in la banda. 
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MCS, CFS, FM, CS, DH, stroke neuro, seizures, skin ca, IBS, eczema, irregular heartbeat| NoIR avoid light and D/ On MP 27 months
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Sarah Jane
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| Joined: | Fri Jun 15th, 2007 |
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| Posts: | 155 |
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Posted: Tue Jun 23rd, 2009 20:59 |
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Marion, BIG HUGS for you. I don't think you're boring at all. Even ill and with compromised brains, we all have our own individual spark to contribute to the world. Some people are able to go out and do it by signing on Broadway, and some do it by posting here in the Lifestyles forum. Sure Broadway sounds more grand, but every spark every where is important.
Before the MP, I never really questioned my self-worth much. I had been raised to have good self-esteem, and I felt good about myself. I knew I wasn't perfect (or was I.....? *wink*), but I didn't doubt that I was likable- at least by those willing to embrace my particular brand of fabulous.
Then, a few months ago I had an IP that completely removed all of my self-worth and I spent days and days pondering why on earth anyone at all liked me? I was so bland and boring and pale, there was nothing exciting or interesting about me. Why did people online continue to write to me? Why did my sister and mother want to spend time with me?
It was a completely bizarre and very startling "realization" that I came to. And if felt SO real. I couldn't even remember why I had ever felt differently. Why I had ever felt likable. In my case, it was a passing IP, and after a week or two it kind of vanished and I was back to my regular self, knowing that not everyone would like me but also knowing that I'm worth liking.
So I hope for you that your feelings of being boring will pass for you, too. And I hope they pass soon.
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MCS, CFS, Celiac, affected neuro, skin rashes | avoiding light and D | May7/07 25D=31.2ng/ml 1,25D=64.17pg/ml | OTC pain and allergy meds prn | Naproxen | Quercetin | Ph1- Aug 02/07 | Ph2- Mar 16/08 | Mod Ph2- Jun 8/09 |
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Juanita
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| Joined: | Thu May 3rd, 2007 |
| Location: | Alberta Canada |
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Posted: Thu Jul 16th, 2009 18:28 |
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As your mother, I can say for sure that you are likable and I certainly enjoy and appreciate your company.
But for $50 and a clean bill of health, I'd dump your butt in a New York minute and be racing out into the world to play!!!
(kidding, I'm only kidding)
Or.... am I????
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MCS, CFS, FM, CS, DH, stroke neuro, seizures, skin ca, IBS, eczema, irregular heartbeat| NoIR avoid light and D/ On MP 27 months
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eClaire
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| Joined: | Mon Sep 25th, 2006 |
| Location: | Virginia USA |
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Posted: Thu Jul 16th, 2009 21:33 |
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| You are in rare form today Juanita!!!
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42mo on MP; CFS FMS MCS COPD hypermob IBS/GERD osteopor; 125D48 25D<4;
NoIRs during most daylight outings; Ph1.Dec06 * ModPh2.Jun07 * AbxBrk.Mar-May08
* Ph2.Oct-Nov08 * Ph1.Jan09 * Olm.alone.Jun10
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Joyful
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Posted: Thu Jul 16th, 2009 21:37 |
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*rare form* ... is this a reference to the beef she's declining to cook today?
Juanita, I miss you when you are *away* ... but you sure are distracting! 
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MP Stories | Bacteriality | MP Search | MP Knowledge Base
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eClaire
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Posted: Thu Jul 16th, 2009 21:47 |
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| It is now!
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42mo on MP; CFS FMS MCS COPD hypermob IBS/GERD osteopor; 125D48 25D<4;
NoIRs during most daylight outings; Ph1.Dec06 * ModPh2.Jun07 * AbxBrk.Mar-May08
* Ph2.Oct-Nov08 * Ph1.Jan09 * Olm.alone.Jun10
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Juanita
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Posted: Sun Aug 16th, 2009 22:13 |
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From Sarah Jane's MCS improvements, it looks like she's going to be leaving me in a New York minute sooner than I will be leaving her. And I'm not even jealous. I'm just so wildly happy that she's here, never mind that she's also seeing less reaction to chemicals. When she's ready to fly to some distant land, I'll buy her the tickets out of sheer joy that she's free.
I made rare hamburgers last night off the barbecue and everybody complained. I should have told them to come here and see that my rare form is appreciated somewhere. *grin*
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MCS, CFS, FM, CS, DH, stroke neuro, seizures, skin ca, IBS, eczema, irregular heartbeat| NoIR avoid light and D/ On MP 27 months
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Sallie Q
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| Joined: | Fri Aug 28th, 2009 |
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Posted: Sat Aug 29th, 2009 03:00 |
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marion villa wrote: it hurts a lot to know that he sees other women which are healthy and flexible and quick and I am like a little old lady.....may be not ugly, but I feel ugly, you know what I mean???  disabled=disadvantaged
Hola Marion
I may not be little, but I am certainly an old lady so let me tell you I am insulted
Serious now, I remember a workshop I attended, first time I ever talked with wheel chair occupants and I learned a lot from those people, believe me.
I remember one of them if ever I have to stand for a long time and have a sore back as well as feet, that is when I think of the advantage he has in his situation.
A younger one I remember because.... well, dancing is jiggling around to music, right ? and she certainly though of herself as able to dance.
I may be overly influenced by a little book called Learning to Dance Inside by George Fowler (Harcourt Brace &Co)
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Sjogrens; b.cancer; postviral fatigue| D25was13.2ng/ml@ph1-Sept08 |Nov08mod.ph2 /Feb09ph2/ May09ph3| D25 7ng/ml@Jun10 NoIRs essential; testing for stage4, July 2010 Olmetec & Mino only
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eClaire
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Posted: Fri Sep 4th, 2009 16:56 |
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I thought this might be something worth sharing with significant others. (I knew when my partner left because of my disability that she was giving up a great opportunity for growth and for a richer more meaningful life... but try telling that to someone who thinks life ought to be easy if you are just charming enough.)
Make life great
There are endless ways to become more efficient, yet there is no way to shortcut this fundamental fact. You cannot possibly get more from life than what you put into it.
You can be very clever and think up all sorts of ways to cheat. What you end up doing, though, is cheating yourself most of all.
If you run or hide from the challenges, life's greatest rewards will never find you. When you avoid the difficulties, you also miss out on the fulfillment.
For it is in making a difference that you make a life. It is by working through the challenges that you build real and meaningful value.
Your success is up to you. Think about that, and you'll see that you really wouldn't want it any other way.
Accept that life can be difficult at times. It is through that acceptance that you are truly able to make life great.
-- Ralph Marston
From http://www.greatday.com/Last edited on Fri Sep 4th, 2009 16:57 by eClaire
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42mo on MP; CFS FMS MCS COPD hypermob IBS/GERD osteopor; 125D48 25D<4;
NoIRs during most daylight outings; Ph1.Dec06 * ModPh2.Jun07 * AbxBrk.Mar-May08
* Ph2.Oct-Nov08 * Ph1.Jan09 * Olm.alone.Jun10
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