WORN OUT! Old Timers Club Forming Here!

[No2]

I have had bad PVFS for 3 yrs now. At times I thought I might be getting better. Very bad Jan. I try to put I happy face on it, but I am such a burden to my family.

If I could just push a button and disappear without hurting anyone, I would!
<em>edited by No2 on 2/1/2012</em>

[miggio]

hi,i dont post on here very often.i ve read most of the posts over the last 18 months.
i am sorry you have been ill for so long.its hard to feel like this not knowing what the future will bring,for the last 3 days up to saturday i was feeling good no aches,clear head i figured the meds i started before xmas had kicked in, i was so happy after 18 months of feeling like the" living dead".woke up with cold symptoms sunday morning now i feel like i am back at the start of this illness bed is my friend.my question to you:are your family understanding and are they helpful to you?
my doctor gave my one great bit of advice"DON'T FEEL GUILTY FOR BEING SICK" he is so right. i felt guilty for being a burden,missing work,social events, what did people think.we have to change this attitude stop feeling guilt for something we have no control over live life as best you can.i know its hard, i work in a hospital and there are people much worse off than us.talk this over with some one.talk to your family. if there are already there helping you,well they dont see you as a burden.if you are like me its hard to sit back and let others do for you.but it ok people like doing things for loved ones. my brain has stopped. please tke care and dont see yourself as a burden we all have value in this life.miggio.

[hal]

I know how you feel No2 I am in my fourth year. Tried everything nothing helps, I am having Homeopathy treatment at the moment but nothing seems to be happaning. Don’t you wish somebody could do something to help?

[No2]

Sad thing... I am usually the optimistic one; I have felt bad many times but didn't post.

<b>I have had loud screeching ear pain since this began Jan 20, 2009!</b> After that a realized that I had had other symptoms earlier that my doctor was putting down to mono for about 10 mos. I was tired but not incapacitated! Slowly I got worse. Head/ead pain got worse; fatigue got worse... sometime in Aug 2009 I just said "this is crazy I can't work.. I can't even think!" It was barely a year later (Sept 2010) out of my instance, I went to see an infectious disease specialist. He looked calmly at my records then me and said "you have post-viral fatigue syndrome." I (not knowing much, I expected to here CFS); I said "I don't have CFS?", he shook his had no and said "no, they are just depressed", "yours is different, it will just slowly get better over time and not come back". I came out of the office feeling hopeful! One month later the insurance company claimed I was not sick (before the diagnosis was chronic mono), the insurance company used the switch in diagnosis to claim "this is not an illness."

Since then, I have maintained a constant course. I have terrible brain fog most of the time. Waking-up for the first 3 hrs or so is terrible. I get asked to do the simplest things but can't think straight enough to tie my shoes at times.

I am probably one of the "lifers" I here folks talk about. I see I a lot of people pass through this place. They have bouts the last 6-8 months or a year, occasionally longer. I guess I am now "that guy" who has always been here. LOL

[No2]

Great name Hal! Lets start an "old timers" club. Gotta be a least 3 yrs to be a member! LOL
edited by No2 on 2/1/2012

There, I changed the top tittle. Let's see how many of us can join up. :-)
<em>edited by No2 on 2/1/2012</em>

[stayingstrong]

I will join your old timers club too No2 !

This all started for me in October 2008 with a bout of Glandular fever (EBV).

At the beginning of it all I really did believe that I had some sort of terminal illness, but I am still here. I have had times where I make progress, times that I slip backwards again and times where nothing changes for very long periods. Like you, I try to stay positive but I think it is normal for us to have down moments too, I sometimes have a couple of weeks where I get really depressed and have that feeling where if I could give up without it affecting those around me then I would. I always manage to pick myself back up mentally again, dust myself off and refocus.

My main frustration is that I want to be well enough to work even part time, I feel like such a loser living on benefits and relying on those around me for so much help. I have resigned myself to the fact that I may have this for the rest of my life, even if I get to 70-80 % of my former self I would be thrilled but know I am always going to have to be careful and PACE to manage my energy levels.

So from one old timer to another " Hang in there ! I totally get you ! "

Hugs,
J

[No2]

Thanks my friend!

I am 54 now (2012)! I was at least 51 (2009) when this all started, maybe even 50 in hindsight; after you get diagnosed you release (usually) the process had started before it got really bad. It is just hard to say what is a "normal" viral response & when does PVFS start. My antibody titers indicated a strong viral response still in progress (Jan 1010) a full year after my worst symptoms had peaked. (Antibody titers returned to normal range in the Spring of 2010.) So, in my case, I might have just gotten a mean nasty virus so I should expect longer recovery; who knows?

Anyway, I feel better now. I had a good end to 2011 (was slowly improving) but had a crappy Jan 2012 and backslide!

I have been lectured on this site that PVFS is classified as CFS/ME after a certain period of time; then my specialist said that was hogwash, PVFS and CFS/ME are different, prognosis for PVFS is better than that for CFS/ME (saw a study about that). I really don't know what to think anymore.

For anyone with CFS or ME out there, or whatever we call what we have, it all sucks whether it is the same or different in some way!

An old-timer is an old timer, don't care what we call it! <img src="images/smilies/smile.gif" border=0 /> I say, stand up proudly!

[stayingstrong]

I too don't care what name they care to use. ME/CFS/PVFS All I know is that I am ill and have something that falls into this category.

I have actually been on sites where fights have ensued as to whether CFS is indeed the same thing as ME, almost treating people as if they aren't as ill as others if they have had a diagnosis of CFS rather than ME. Some on there even had the attitude of "well I am sicker than you as I have been diagnosed with ME". Needless to say I didn't hang around there too long, to me sick is SICK no matter what the title.

Maybe one day there will be a little more clarification but for now I won't get involved in that whole can of worms.

[hal]

That’s dead right if you have been diagnosed with pvf, cfs, or m.e your in big trouble with little or no help, I ended up with pvf, cfs, m.e after a cold, cough then chest infection interesting thing is I caught the cold of a work college he recovered no problems I ended up with a four year nightmare makes you wonder if the initial virus sends something out of kilter (immune system or in the brain) anyway i think i qualify for the old timers club

[No2]

Heck yeah... I say, if you think you should be in... you're in! <img src="images/smilies/wink.gif" border=0 />

It's hard to know when one thing ends and another thing starts... or if that even matters! With this illness 1 yr can seem like many yrs! As I try to explain to people, it is cruel because sometimes it teases you that you are improving, then wham, you go back months or yrs; hopefully not for a long time, but it has no rules.

3 yrs ago, I was "thinking" that recovery meant "full recovery"; now I just hope for a sort of a normal life with some reasonable compromises. it sucks to be the guy who says "I don't feel like I can go" at the last minute; things come and go (mostly come) so quickly!

Hal, same thing happened to me. Everyone (in winter 2007/8) was getting this long-term chest cold. I can even remember my wife complaining "will I (she) ever get over it" after 3-4 wks; she cleared it in about 4 wks. There was another guy at my workplace who had the same thing (I think) for a number of months. I got it, it hang on good for 4-5 months but took about 10 mos to really clear, then wham, a month later it hit me! I went into this other thing. It has been 3 yrs in "the other thing"; slowly improving with many setbacks. In fact, the muscle fatigue peaked later, it is now getting better as well. Even 8-10 months ago I was still getting the occasional low grade fever and funk chest feeling (with a slight cough); weird, it would last 4-6 hrs then go away again.
edited by No2 on 2/1/2012
<em>edited by No2 on 2/1/2012</em>