XMRV Message to members

[free at last]

Just wanted to say i apolgize for being over bearing on this forum, i know i just i couldnt stop thinking about my illness, and at times it became a case of me me me, i also want to apolgize for getting angry here and there. the reason i did that, was i just kept trying to reach out to everyone to understand my life and why it happened the way it did. but some ( not all ) seemed to not be interested in anything i had to say, and ignored me. I Didnt recieve one welcome post to me on the introduce yourself thread, when others all had warm welcomes, To be ignored by the medical community is something that hurt. But to be ignored by a lot here, when i saw you all as my family, my Brothers and siters in arms. it just plain hurt.
Not sure if im ever going to post here again, as all i seem to offer is self pity and sadness. Something the illness has done to my mind over the years. I just wanted to understand what all this means, and learn and share with you all. Hope i can be forgiven for being so messed up. Hope those that may have pre judged me, really see that i am, and have always been, part of the family that this horrible illness has forced us to find kinship and understanding with each other.

I have just been crying, 16 years of confusion has just come out in tears. as ive just been informed by Judy i am XMRV + Maybe now if the XNRV discovery is proven to be a co factor. Then in some ways I Am now free at last. My health has improved dramitically over the years. by my mind is and probaly will forever remain shattered by the illness CFS/ ME

 

[maryb]

FAL - this illness has made me very selfish, I don't spend too much time on the computer as it makes me feel much worse. I skim many threads , constantly searching for anything that may help me beat this illness - this includes the intro threads - but I leave it to others to say hello and welcome. I now feel really guilty and will try to make more effort in the future. I'm glad your health has improved-you join many other XMRV+ on here hope you find some help and support.

 

[Rita]

Free at last.
You cant ignore that we all are SFc patients, we have a few energy to read all post here and we only can read for a little time.
I hope you are glad to be XMRV positive and, best of all ,that your health has improved a lot that is all we want .Some of us are the opposed.Perhaps you want to share your treatment with us.We need to know about treatments that works.

 

[free at last]

Dont feel Guilty Mary, i too do the same, especially as that happened, ive tended to stay away from that section.

But if i continue to post here, ( just dont feel like it anymore ) then i should join in, especially if some one has had no replys. just felt like i had done something wrong. i realize though a lot on here are experiancing the profound onset that i did for a long time. And i guess i should remind myself of that. I dont want anyone to feel guilty. If i continue posting here. I will certainly look for the 0 replys though. As it did confuse me. But then im too emotional for my own good a lot of the time. And i just think acknowleding some one is a basic courtesy. And ive had that a few times Mary. Those that have done it on purpose may have to search there on hearts. but those that have not ( like you ) Certainly shouldnt feel guilty.
Thank you for replying Mary

 

[L'engle]

Welcome here, since many of us missed the first intro! (personally I reply to welcome threads pretty randomly dependent on whether I'm there or not at the time)
CFS is very tough for our frame of mind. Hopefully that can heal somewhat eventually. Take care.

 

[alice1]

I'm not to sure what you're talking about but I forgive you.I hope you can forgive yourself.
Being XMRV+ will surely put in a catagory for any treatment protocols that come to fruition.
Keep us posted when you do start.

 

[free at last]

Ive tried Rita really i have, but just get ignored. im not certian just know what i was doing is all, and it took a long time to slowly improve. I know many dont have energy Rita, ( ive been were you all are, trust me on that or not ) its just i saw all other posts getting replys, only mine was not. those guys had energy Rita. ive talked about recovery, Im not doing that again. Just yet. but if you want to pm you can, But i have no magic wand. i did things that just seemed common sense at the time.

 

[free at last]

Treatment can have severe side effects, unless my condition goes down hill again ( which i dont think HOPE it wont ) the cure can be worse than the disease. Just to clarify physically i am part recoverd ( i still get symptoms occassionaly, mini crashes if you will ) However im traumatized in many ways about what happend to me.

 

[free at last]

Ty Alice for replying

 

[dannybex]

Ive tried Rita really i have, but just get ignored. im not certian just know what i was doing is all, and it took a long time to slowly improve. I know many dont have energy Rita, ( ive been were you all are, trust me on that or not ) its just i saw all other posts getting replys, only mine was not. those guys had energy Rita. ive talked about recovery, Im not doing that again. Just yet. but if you want to pm you can, But i have no magic wand. i did things that just seemed common sense at the time.

For what it's worth, I would guesstimate that my posts are ignored probably 80% of the time, in fact, I often feel like whenever I post, it usually ends the thread. Crickets chirp.

I've never found your posts to be offensive in any way, nor full of 'self pity and sadness'. Crying is a GOOD thing...holding in emotions, repressing them has actually been shown in studies to be harmful to health.

And I certainly don't want to pressure you, but keep in mind that many people don't go online very often, so they may have missed your posts where you talked about what you did to improve. If you choose to repost a summary, it may help a lot of folks, and I know that I'll look forward to reading it.

Best regards,

Dan

 

[leaves]

hugs to freeatlast
and to Danny
and to all the other hugdeserving pwc

 

[free at last]

Now that is something that lifts my spirit thank you leaves
What a emotional day, i always knew my immune system was under attack ( so many fevers ) wessley knew it too regardless if he would admit it. you dont get temps of at least 102 ( if not occasionaly higher ) for long periods of time and its just a cold. or somatizing. I guess wessley would say the onset was real with all the fevers. but when the fevers stopped thats when i started somatizing. Weird that because most of the physical symptoms that i had when the fevers stopped were the SAME AS WHEN I HAD FEVERS erm. like the chest infections, and many more you get the point. one in the eye for dear old simon. Btw i tested positive for xmrv infection with 3 of the 4 tests, in Judys words to me no doubt. MLV infection is now being looked at from blood also
Hugs to dannybex and you too leaves. thank you both
Ill try again about the getting Better bit Danny.but not a lot to tell really, as i said common sense stuff is all i could do, as by now the NHS just keft me to get on with it, Good sleep nutrtion of the highest order lots of rest, restricted excercise magnesium pills ( soluable ) hi strength vit c 1000 mg ( I think ) cod liver oil. evening primrose oil. sometimes calcium. multi vit. Raw galic, not sure if any of that helped ? but the sleep and nutrition bit ( many many vareities ) of salad veg and raw garlic did help. it didnt stop the illness. but gave my body the ammo to fight back. i also firmly belive many raw salad veg has amazing properties that protect and heal ( over long prolonged use ) that science hasnt even begun to figure out, everyone thinks chemicals, well these chemicals over a long duration are amazing. of course it wont save your life if say your liver or kidneys fail. or whatever. but dont underestimate natures drugs for chronic ( but controllable illness )

 

[leaves]

we all need MORE hugs !
I just started a thread in the community section on how to keep the community feel in this forum alive. I think you raised a very important problem.

 

[free at last]

Good idea leaves

And i think your all changing the way i have been thinking for quite some time. especially the last week. once again thank you everyone. I agree leaves it doesnt cost a lot to show feelings towards each other. And ignoring people ( im not going to say more than that ) is just plain rude. i accept i could be wrong for thinking that has happend deliberatly. but it just seemed obviouse to me on least a couple of occassions.
Well i pity the reasons some may do that, if im not wrong. But as of now i dont care. I care more there are kind people around. and ive felt that today on here. Also CG thank you for helping me. I may stick around, Feel more like i want to today ( tonight )

 

[caledonia]

Hi Free at Last,

First off, congratulations on your XMRV+ diagnosis. It sounds like you're from the UK, so I know that is huge.

I think I remember you complaining on one other post about being ignored. But truthfully, I don't pay too much attention to who is posting what. If it's interesting to me, and I have something to intelligent to add to it, I do. Otherwise I'll just read and not comment. I do, however, tend to seek out 0 posts and reply if nobody else has.

I've had posts ignored too. I just figure, well whatever I had to say wasn't explained well enough so that people didn't "get" what I was saying, or it wasn't resonating with them or whatever.

In general, it seems like people from the UK are very sensitive about certain issues, and rightfully so. They have been treated so horribly and traumatized, worse than anywhere else.

May I suggest something which has been very helpful to me for moving past issues and traumas, which is EFT (emotional freedom technique). It's free to learn at http://www.eftuniverse.com/

 

[free at last]

Thank you caledonia ( thats a song by robin trower great player ) ill look into that link really i will. but i do wish the world would make a SAFE universal flu jab. and i could relax in the winter too.
Thanks C

 

[vdt33]

Free at last, I think that feeling ignored is more common than you know. I have seen other people express the feeling of being ignored, and I know I have felt that way many times. But I try not to take it personally. Not always successful. But I am too sick to read many posts or to reply to many posts, so I figure that most people are the same.

I am really sorry that no one replied to your new member post. We should celebrate new members because every member of any CFS forum adds to our clout as a community. That's why everyone is important.

I'm glad you here.

vdt

 

[ukxmrv]

Free at last,

If you can leave your home and come to Whitehall in London on the 1st November you will get a chance to talk to other XMRV+ patients if that would help? There is a protest at the Depart of Health at lunchtime on that day.

www.notsonice4me.co.uk

and for Facebook members http://www.facebook.com/?sk=events#!/event.php?eid=170256226322136

Sending a big hig to you and sympathy for the ordeal you have been through for so long.

XMRV+

 

[Yawn]

Hi,

I too don't post on here very much - takes all my energy reading the wide range of topics!!!

But sending you a very warm welcome indeed. x x xx

 

[usedtobeperkytina]

Reminds me of something Dr. Laura said once. (The below is a paraphrase. And I can't be sure it was her husband, but to get you the feel of the point being made...)

"One day, I came into the kitchen. I had gas pains and wasn't feeling well. My husband assumed I was mad at him. I told him I wasn't mad at him. I asked him why he would think that. He said it was the look on my face.

It is entirely possible that just because someone does not act enthusiastic and warm and friendly to you that it may not have anything to do with you. It may have something to do with them.

When someone does not get the response they expect and assume it is because of them, that says more about them than the other person."

Boy, that hit home for me. Although I do not attribute it to the disease, I think because I am the first born not only first daughter of my family and the first grand-child of extended family I was the center of attention growing up. So that gave me a power to have positive or negative influence over everyone else. As though my presence determined their behavior and their behavior was because of my presence, at least that's what I thought.

But, Dr. Laura's statement made me see, advice to myself, "It is not about you." People can have a bad day, feel bad, be bored, be distracted, be hungry, be in a bad mood and it not have anything to do with me.

There are many factors that can make us more self-absorbed:
We are isolated and so we are more likely to think about ourselves, our problems, our medicine, our doctors, etc.
Our bodies limit our life so we think about our bodies, symptoms, what to try to do to fix it, what we can't do and why, etc.
We have endocrine system abnormalities, including sex hormones, which can fluctuate giving us times of being irritable and emotional
We have guilt for what we can't do for others, family members. Again focusing our attention on ourselves.

So, just remember, just because you don't get a response from a post, it may have nothing to do with you. I don't read all the posts. So I likely missed it. Some threads I read, but don't feel I can contribute. Sometimes I don't post because what I was going to say has already been said. And sometimes my thought would be too long and complex, it would take too much for me to try to word it.

I hope that helps.

Tina