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tingeling
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Hi

I been pain free for the hole week!!! A barely had the "worm". Been enjoying my pf time allot, something happened and i want to share it with you folks :)

Over the years, i felt my friends have let me down. And honestly, they did let me down. I understood why in a way, because when we let others down, we do it out from different reasons. Most times, i guess we do not know we`re doing it. My friends wasn`t experienced enough in life to know. What i did wrong, i never told them how it really was.

It has been some years now, i haven`t even talked to my "old" friends. Earlier, i always been the one who contacted them. As i got more and more debilitated, i didn`t had the strength to do what i usually did. What happened then, i guess is not unusual, but it hurts and you feel very lonely. I did at least. Because all of the sudden i was very alone, no one called me or invited me. Not a word from anyone. I let it go, and started to connect with others. But i had them in my mind. In the beginning i got angry, then sad, then i thought well well never mind, maybe i bump into them some day. no need to be angry. Past is past, we all do wrong.

A little while ago, i posted some info about Clusterbusters to my Facebook profile. Didn`t think anyone had seen it or noticed it at all, i was very wrong. All of the sudden i bumped into all of my "old" friends. They asked how i was doing and i answered fine. Well, you look good now, i looked at the CH thing awhile ago.... Everyone said the same things to me. I was overwhelmed, cause the post wasn`t about how bad i was doing, just general info about CH and fundraising. Last Sunday i was contacted by one of my friends we used to have daily contact, more or less. She apologized, they had been talking together and they felt very bad and wondered if i wanted to catch up.

And i did. We met yesterday. Sat before i went out, almost cancelled. Told myself i shouldn't`t be a coward and they had done a wonderful, very unexpected thing, and they didn`t have to. We spent hole day together, it was great :)

They said they had no idea, also they said i never told anything about my difficulties. What they could remember was that i had thought something was wrong with my teeth, something odd was going on with my fingers and arms, wondering about some numbness in my face and that was about it. I realized i hadn`t told them anything. Didn`t want to rant.

In my short life, i have been trough allot of challenges. Before finding CB, i had no faith in others, i felt i had been shown that you cannot trust or expect anything from anyone. I been shown i was wrong about that, over and over again now.

I`m so lucky, can`t understand how i can be this lucky!!

This shows that it is possible to get all the pieces together again, if we just continue to believe in life.

BUT, this would never started if it wasn`t for all of you. I am very aware of that, and i am very grateful. You all helped me more than anyone else in this world. You got me trough this.

Everything is possible :)

My best wishes in life, to all of you, big hug from me

Tingeling

"Every once in awhile, it goes the other way too".

http://www.youtube.com/watch?v=zJeGFu8JHrI

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Thats simply AWESOME Ting!!! 

I think we all may have a tendency to withdraw from life particularly while in our clusters.  I know I did... 

It's a shame many of us have to stay 'in the closet' about our treatment.  I'd love to share my life changes (how and why) like you have, with others I interact with.  Due to my job it's simply not possible.  Keeping a paycheck is pretty high on my priority list.. ha.

I'm so happy for you Ting!!

Jeff

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I think there`s something different this time. I know i said this before, but every time i got pain free, there has been a difference. This time i have a hard time explain what is going on. When being pf, i always keep my reg sched for sleep and food, that stuff, not this time. This may sound stupid, but i been chronic for so long now, i been so much worse than this, i don`t care much about getting myself in some extra attacks for a little experiment. You get used to it. So this week i had a feast that really need to stop, or i will get overweight ;D I LOVE sweets but i can never eat anything. This week i have eaten sweets every day. I baked chocolate cake(big pan), been eating burger AND fries. Usually it will start to get a bit bad again after 5 days, so i thought i would eat my favorite dinner, a spicy fish dish, before dosing. Also i had a big plate of chocolate and salty crisps.  Sat i ordered a tapas plate with spicy sausages, very mature Brie, pretty much everything i can`t eat but really love. Food, i`m a food wreck, it`s just not possible for me to live it out ;D This weekend i slept several hr over, and i`m fine!! So i didn`t dose. Now i starting to feel i crossed the trigger line for this time, cause i`m still good, so let`s not tempt it further, feast have to stop for now. But i must say, it has been a pleasure to eat and sleep :) (But starting to feel a bit like the time of decay...)

One oddity, in the night i wake up around 1 or 2, then again around 4 or 5. Usually, i just go back to sleep. I`m so used to this it doesn`t bother me. Now i wake up at 5 with no pain, but i get really woken up. It`s ok, no need to sleep longer, nice time to get up anyway. During the day i get nothing, so something changed. My head feels clear all day. When i get up at 5 i feel very good, the feeling of getting enough sleep and being healthy and ok. This gonna be very exciting. Maybe i can stop getting that chronic cycle i had for seven years now, every third hr. When i been pf i always had a weak shadow or something at the same times. Time will show :)

Thank you both and everyone, i feel as there rained some magic powder down on me, or maybe i just drank some ;)

Have a wonderful day everyone!!

PFWF me

Tingeling :)

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So i just have to write a bit more. This is very emotional to me, i feel a bit foolish now. I`m cry and i cry, i don`t know why, maybe from relieve. It just that i`m so happy. Just so everyone know, when i said painfree before, i been pf from a "chronic view", i been so satisfied with my results. But this time i`m pf for real, and  no shadows. i didn`t think this could happen.

Awhile ago i found that i don`t remember how it feels to be "totally normal" healthy. It has to be like this. Everything feels so easy. I`m aware this may not last forever, but times like this gives you someting to remember. It also give me hope that it moght be possible for a chronic to get out totally from cycle.

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Ting, That is a wonderful smile on your new picture. It's evidence that you are truly doing very well. I don't mean just with the headaches, but overall. If anyone deserves some pain free time it's you.

You've had some very positive things happen for you recently, related to talking more openly about your CH. The party, old friends, very positive feedback. And you ate some really bad for you, feel really good food! Aged brie... awesome. It sounds like you are taking a courageous new direction and it's really working well.

I'm sure most of us can relate to the friends thing. I do think you find out who your true friends really are. I have one friend who comes to see me nearly every week. No expectations. If I feel up to it, we'll go do something, if not, we'll hang out, or if I'm hurting, he'll just make some food or something. Others stop by occasionally or call to see how I'm doing, and they've done a little research on their own or at least read my website. But most, I haven't heard from at all. If I run into them, they'll say "how are your migraines" or something like that. I say "fine". I guess I've gone through sort of a sorting process.

It's very uplifting to hear the joy in your posts and to know that it may be possible to break free from this. Thank you.

-Chris

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Aged brie

What did i call it, "mature brie".LOOOL ;D

So i gonna try stay away from the crying now ;D When you decided to "be finished with it all", in a way that makes you feel better, that life get better after deciding so, then you're very suicidal i recon. I didn`t tell anyone and started to answer everyone i was ok, and i felt "ok", i felt calm. I believe when a person has reached this point, it is very hard to turn it around. To be honest, i don`t think it would have been possible for anyone. When i tried this, i did it to be polite to a person. Who could know i would end up where i am now. This placed saved my life :)

All the positive things that happened recently, it feels like i get all the pieces in my puzzle all of the sudden. Also i think it truly shows i`m on the right path in life. Life turned on me, i got lucky, and i embrace life i can tell you!! Last Mon i made moussaka and bread. My house had a wonderful smell, like you could taste it in the air. Oh how i wish i had a big garden and a long wood table with all of you there. Maybe one day it will be possible. Now i gonna start that crying again, i better log off ;D ;D (Just got rid of those puffy eyelids after 7 years ;))

"We all have our own life to pursue, our own kind of dream to be weaving. And we all have some power to make wishes come true, as long as we keep believing".

- Louisa May Alcott

Thank you so much :)

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