i have a rare illness called CVS - Page 2

dilli-theclaw · 06-03-2008, 13:14

Nevermind, Can we please return to the topic now.

---------- Post added at 12:14 ---------- Previous post was at 12:12 ----------

The way I cope with my disability is by focusing on my Son and keeping him happy.

Then I try to adapt (which I think I've done well) to not let what I couldn't do before affect my life.

Someone comes out to speak to me once a fortnight for an hour from the local sight concern charity so that I can sound off / rant to someone not connected to my family.

Most of all though, I try my best to remember that while things may be considered bad, there are always people who are worse off and they are the people who need help really, not me.

peanut · 06-03-2008, 13:27

Quote:

Originally Posted by keriene

You may be wondering why i am telling you this but the reason is i want to know what you would do if you was Diagnosed with this illness and how you would deal with it!

Quote:

Originally Posted by Jefferson T

Most of all though, I try my best to remember that while things may be considered bad, there are always people who are worse off and they are the people who need help really, not me.

And on that note to answer your question, if I had your illness instead of mine, I'd be over the moon, I'd be able to live a pretty much normal life as that illness is pretty much mostly in remission.

I would not complain, I'd be happy as Larry. So what do you have to complain about. Think yourself lucky.

If you can put yourself in other people's situations as you say you can (including your friend who had terminal cancer), then you should be now have come to the conclusion that your condition is pretty much trivial in comparison. So you should be counting yourself lucky that you don't have anything worse.

You asked.

This reply isn't spiteful etc, just honest and I'm being true to my own word.

(Post was intended for keriene and NOT for Jefferson T).

keriene · 10-03-2008, 03:37

peanutKp.
Let me tell you now, if you had my illness you would not be 'as happy as larry'
you would have no real life! probibaly wouldnt even need a home because you will live in hospital among all the nurses that just sit there and take the ****, dont bother taking how you feel into consideration.
and what out of the whole of last year i was in hospital for every holiday! - Easter, good friday, everyones i knows birthday, halloween, christmas,new years eve and new years and to make it worce i have just come out of hospital a couple of hours ago.
i was in a coma from how bad my illness had got extremely bad and just to think there are people out there who are wishing they had the same illness i have!
Im trying to find a escape when there are people like you who are basically wishing they had the same illness!

peanut · 10-03-2008, 07:09

Quote:

Originally Posted by keriene

peanutKp.
Let me tell you now, if you had my illness you would not be 'as happy as larry'
you would have no real life! probibaly wouldnt even need a home because you will live in hospital among all the nurses that just sit there and take the ****, dont bother taking how you feel into consideration.
and what out of the whole of last year i was in hospital for every holiday! - Easter, good friday, everyones i knows birthday, halloween, christmas,new years eve and new years and to make it worce i have just come out of hospital a couple of hours ago.
i was in a coma from how bad my illness had got extremely bad and just to think there are people out there who are wishing they had the same illness i have!
Im trying to find a escape when there are people like you who are basically wishing they had the same illness!

Well you asked a question and I tried to answer it the best I can. If you don't like my answer then it goes to show that I don't or can't obviously understand what your condition is like unless I have it as well.

As stated before, no one would wish an illness on anyone and I wished you didn't have the condition but you have unfortuantely, and the main thing is how YOU deal with it. You'll only get frustrated and annoyed if you ask questions to people they can not answer. You'll be better off telling us how you deal with it than asking us, as it would be much more informative and inspirational. (Or just go to a support group)

I think you've misunderstood the part where you think I said I wished I had your illness, I stated 'if I had yours instead of mine' (and I never even said I wished so I don't know where you get that from), so that makes all the difference don't you think. Why would I want to wish I have what you have? I'm only going on my own case/conditions, what did you expect me to say in fairness? Don't you think it's obvious that no one would want any illness in their lives.

Also can you elaborate more about where you say nurses sit there and take the wotsit, as that part I don't really understand, nurses don't or won't understand how you feel, but then again it's not their job to. Just what are you expecting, special treatment or something over everyone else?

keriene · 14-03-2008, 23:05

[QUOTE=peanutkp;34501305] if I had your illness instead of mine, I'd be over the moon, I'd be able to live a pretty much normal life as that illness is pretty much mostly in remission.

I would not complain, I'd be happy as Larry. So what do you have to complain about. Think yourself lucky.

Thats what you was basically saying!
For a Nurse on a childrens ward it is their Job to make the patient feel better etc.

what i dont understand is like you have already stated, you cant answer my question, so why do you keep replying to this post?

with one thing i notice with others on here is if they "CANT" answer a question on a post they just wouldnt reply to it!

smicer07 · 14-03-2008, 23:18

Just seen this thread, really feel for you keriene, best wishes.

21-06-2011, 06:50

My husband also has this rare illness and it is very hard to deal with. He has a very serious case of CVS. Last year was this scariest time in my life.... he wrote a WILL in secret and I,at 27 years, a mother of an eight year old and a wife for 7 years , was starting planning for the end....which just ate me alive... I have this contiunious fear of losing my soulmate, my best friend. It was the first time we had an encounter the illness and it was life threathening. As he body started to shut down, which he was sick over 7 weeks in the hospital, lost of 30 lbs and the list just goes on, there was a doctor that was new to the area that gave him a medicine ( I sure its spelled wrong but...thorazine) shot form, and THE only Med to work ...... I am sorry to hear that you are also sick with this unforgiving illness... best wishes and praying for all those who suffer from this sickness.

21-06-2011, 22:06

...and this thread is over 3 years old.....

Jimmy-J · 21-06-2011, 22:16

Quote:

Originally Posted by Sandstrom

My husband also has this rare illness and it is very hard to deal with. He has a very serious case of CVS. Last year was this scariest time in my life.... he wrote a WILL in secret and I,at 27 years, a mother of an eight year old and a wife for 7 years , was starting planning for the end....which just ate me alive... I have this contiunious fear of losing my soulmate, my best friend. It was the first time we had an encounter the illness and it was life threathening. As he body started to shut down, which he was sick over 7 weeks in the hospital, lost of 30 lbs and the list just goes on, there was a doctor that was new to the area that gave him a medicine ( I sure its spelled wrong but...thorazine) shot form, and THE only Med to work ...... I am sorry to hear that you are also sick with this unforgiving illness... best wishes and praying for all those who suffer from this sickness.

Sorry to hear that... Welcome to the forum.

**Maggy** · 21-06-2011, 23:52

Quote:

Originally Posted by LSainsbury

...and this thread is over 3 years old.....

It must be comforting to find anyone with the condition even in a thread this old..

TheDaddy · 22-06-2011, 00:42

Hope this is of some help to anyone else with it

http://digestive.niddk.nih.gov/ddiseases/pubs/cvs/

DOC Chiro · 25-06-2011, 00:39

Hi, why not try acupuncture or chiropractic to try and stimulate or work on your nervous system that governs your digestive system. Cannot hurt to give it a try, should find a Chiropractor and/or Acupuncturist with experience.

Tinky · 25-06-2011, 09:22

Sorry to hear about your very debilitating illness Keriene. Doc's suggestions sounds good, if you've not already tried these treatments, anything would be worth a go.

scrotnig · 25-06-2011, 09:43

Quote:

Originally Posted by Tinky

Sorry to hear about your very debilitating illness Keriene. Doc's suggestions sounds good, if you've not already tried these treatments, anything would be worth a go.

"Last Activity: 18-04-2008 22:47"

Most unlikely she'll see it.