Below is  a copy of a post i added to the CH discussion board on FB :)


Oct/Nov 2009 - I came across this utube video of Francesco.......i cried & cried & cried.....

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After 30yrs i found out what it was - this pain...excruciating pain that i'v for so very long...

Years of antibiotics....nasal drains...eye operation...teeth pulled (gave up on medical profession in my early 20's) and now Oct 2009 after 10months of non-stop agony, in desperation i returned to my gp who said my deviated septum would sort my "infected nasal" "chronic sinusitis"

Just before that appointment to see a Otorhinolaryngologist , i did a search for "excruciating pain" in eye and francesco's utube video was one of the first things that came up. THAT was me...whereas he stood - .i sit and rock....put a t-towel over/in my mouth so no-one would hear me - another wet cold t-towel over my left eye & face/pushing it/rubbing it over - using my hands to push on it/stand up/pace/sit down again....rock backwards & forwards.

The agonising/soul retching whale of pain - teared through me like a knife - it was my pain - the pain that nothing can sooth - nothing you can do......the seconds on the clock watching, praying for it to pass....praying to pass out....praying for someone, somewhere to help you....to end this...to give me a answer.

I was truly at the end of my tether, my strength, my soul was dying. .....I know how this all sounds, barmy hey???

I can tell you a funny story if u want.....i feel abit daft but its true....i told my son Nick & my daughter Kirst & eventually my partner Russ....but it is true

Oct/Nov 2009 in agony kip 10's (as i now know) truly believed my time here was over and that what ever this thing had become, was going to finish me off....part of me actually didnt care...part of me wanted it to be over....i knew i didnt have it in me to last much longer - 10 months kip 10's, night after night after night.



In the early hours of a morning after 3hrs of hell....knew by now i had 10/15mins before it would come again and last for another 3hrs - i sat talking to my mum & dad (who had passed many years before) i'v talked to them before...in my minds eye - to let them know when good things have happened, when i'm worried about something etc what ever life may bring on occasions in the wee early hours i sit and chat....somehow i usually have a answer.

I'v sat and talked to god/Jesus/higher being/Buddha who ever you may call .....i always believed that god walks along side me, that we have a guardian who helps guide us, watches over us, though for a long time i'v chosen to forget/ignore - i'v had some pretty horrific times in my life as well has amazing...i have nothing to be sorry for & despite whatever i still consider myself blessed......

I sat speaking...crying to my guardian angel...if they was there, to please listen to me and guide me to the help i needed....that i was in sooo much pain that i didnt feel i had the strength to hold on for much longer....

I'v always plodded on, no matter what, no matter how bad - brush myself down and stand back up AGAIN & never give up....keep pushing on...keep trying..doing your best BUT NOW i truly had NOTHING left.....i hadnt felt my "guardian" near me/looking over/after me for such a long time

I cried and asked for them to give me a sign....any sign but something to let me know not to give up, that i WAS still being watched over.....

Well....the very next morning and for the next 2wks or so..... EVERY where i went - small white feathers would appear, float down in front of me....in my hair....on the ground whilst i was walking, just a single white feather come down in front of me....at work where i sat....my front door....my garden gate way...standing in a Q at the shops - u name it - a single white feather.


Such a simple thing..... such a little thing but it gave me GREAT COMFORT.....belief that in some way i was still being watched over/looked after. Now whether it was just a freak coincidence feather thing happening, who knows but that little feather helped save me.....to hang on....to keep pushing.


Now dont get me wrong - i' still had a hell of a fight on my hands with my GP & so called specialists but with the help/support from others who have CH (especially a lady named Helen williams) i now have got to where i am now.

I am putting together a information leaflet for my Gp Practice that i work at - for them to give to patients who have one of the TACS - as you know CH is quite rare and in the Practice where i work we have thousands of patients and NOT ONE has been diagnosed with CH

Well time for go watcha dvd - watching Robson Green in "wire in the blood" excellent series - Wishing everyone a PF night - bye for now x x x

Not sure yet how long i will leave this on here...feel abit of prat LOL!!! So i may take it off tomorrow morning.....feel i needed to share....not sure if there is anything in what i'v written is of interest/ help to anyone but just wanted to say - hang in there - dont give up!!! Talk to others with CH - we know - we understand x

Well i did take it off....just a hour or two later.

I read it back to myself and felt a nincompoop... so deleted it but did copy and paste and save it.....why...am not sure?

I spent 25years researching my infected sinus's/pain in face/eye etc LOL!!

All my research evolved around the "nose"....i went to collage to study Aromatherapy &
Physiology...trained in T'chi/Shotokan Karate/Yoga/Meditation - spent a few years studying different religions...including spiritualism/Buddhism ect - took the bits from each that worked for me, left the rest behind...

I'v always exercised hard....running (used to run marathons but too old for it now lol) free weight training/swimming etc. I still train now...running/free weights/yoga my fav at the moment!!!

I discovered Melatonin about 5yrs ago now....only used to take 3mg every six weeks or so for just 3/4 nights to try to have a better sleep ...didnt want to risk getting used to taking it or getting addicted to it but now i know its not additive...12mg of this each night as kicked the "beast" well and truly away!!!

I have never slept well....i would wake up 5/6 a night (not good when you dont go to bed till gone midnight and then get up at 6.15) and i would have these "infections" keep me up for 5months out the year .....

Lol lol lol - i laugh now but not at the time....its took nearly 30yrs to find out that i have CH and if it didnt change from episodic to Chronic in January 2009 i dont think i would have know to this day

Wishing you all a PF day & night x x x   ::)

Please don't delete your post. It's a well written version of what so many on this board have had to go through. And that Helen....we're kind of fond of that one. ;)

Joe

This is a good read, please do not take it down again I am sure other will want to read it and it helped me get back on track.

Matt

Thank you both.....i feel humbled that you'v taken the time to read it (i know i can be long winded) :)

It hasnt made me a bitter person, if anything i have more empathy....more understanding...more patience

Time for me to go and cook dinner.....chilli & rice mmmm sounds good to me (and quick & easy) LOL x

Welcome Steph.  Don't delete it.  It's good for those of us who think they have the beast "under control" to be reminded about the early days, the search, the hopelessness.  I'm only a supporter, not a sufferer, but I remember those days well. 

Reminders of those days keeps us vigilant and ready to help those like yourself who are just now coming into all the wonderful information and people here.  It keeps us from getting complacent. 

Best of luck on your journey to successful abortives and treatment.

Thanks, Steph. Your post is humbling and way, way too close to home. You said:


Quote:

i always believed that god walks along side me, that we have a guardian who helps guide us, watches over us, though for a long time i'v chosen to forget/ignore - i'v had some pretty horrific times in my life as well has amazing...i have nothing to be sorry for & despite whatever i still consider myself blessed......

I, too, believe this. And I also believe my faith has made it possible to survive the long, agonizing days and nights. Despite it all I also feel blessed. May God continue to bless you and I will pray for your relief, and the relief of everyone who is here, and who will have to come here. blessings, lance [smiley=thumbsup.gif]

steph45 wrote on Jun 23^rd, 2010 at 3:00pm:

It hasnt made me a bitter person, if anything i have more empathy....more understanding...more patience

WONDERFUL opening post Steph! I have many of the same thoughts, without being able to state them in such a compelling way.

The quote above was particularly poignant....with all that ch entails, I truly believe what you said. The beast may take from me more than I can (or wish to) detail...but IT can't have my soul. If there is good to be had...you expressed it.

Best,

Jon

Good post Steph....I'm glad that you didn't delete it.

Quote:

Such a simple thing..... such a little thing but it gave me GREAT COMFORT.....belief that in some way i was still being watched over/looked after. Now whether it was just a freak coincidence feather thing happening, who knows but that little feather helped save me.....to hang on....to keep pushing.

There is no such thing as coincidences, every thing happens for a reason and you asked for a sign and God gave you exactly what you needed .

all thoe I'm still in year one of having CH stories like yours always make me sad . to think so many people go through this for years with out any proper help.

Thoughts and prayers

Nigel

Thank you all for your kind replies.....:)

This is what i now use for my CH ;

O2/Melatonin 12mg/Kudz/Magnesium/taurine drinks & Imigran injection (most of the time i  "extend" the injection and use 2mg each time)  lessoned the side effects - not completely but not any where near as severe ... ::)

I had the O2 & injections now for 6wks....and what a massive difference the o2 has made .....have used the injections in the last couple of weeks and all but once - they completely got rid of a kip 8  [smiley=clap2.gif] 

i came across this link today.....have any of you seen this one before?

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wishing you all a PF day & night  [smiley=vrolijk_26.gif] x x x

Great post Steph, and the link is very imformative to, glad you didn't permanently delete lol

Hope your soon pf

Paula