h2g2 The Hitchhiker's Guide to the Galaxy: Earth Edition

this is not a statistic. i'm just that person lost my husband not to another woman but to this debilitating condition. doctors don't tell you every thing. protecting the system? they do'nt tell you that your central nervous system has taken a hard hit and that sometimes
you are going to behave like a 2 year old with a bad temper tantrum.
they don't tell you about how your own family is going to isolate you as if you had an infectious disease. how you have to spend months in bed but not able to sleep. and than comes a time when you can sleep but can't wake up properly. you have to pretend to everyone
including your doctor that you are ok because you are a proud person and you don't want anyones pitty. when you realise you must ask and than insist for your husband's help he realises this is it. she is never going to get better the lively fun loving person i met 23 years ago has gone. i must save my self so he runs... not to another woman but from the woman he once professed undying love to. in sickness...and in health...

Hello -lilith-
I don't know anything about your condition but I'm here if you want to have a and chat, alright?



Annie aka Galaxy Babe U128652

Hello Lilith. So sorry to hear of your problems. You might like to take a look at a space we created on here called "De Myelin Nation", click on this link A889194

It's for those of us who have problems involving the nervous system, or are involved with those who do. There's a lot of support around from people who understand the issues involved, we even have a thread where you can go on & quite frankly moan, rant, scream & about how much of a struggle it is sometimes.

meanwhile, here's some & a big Welcome to Hootoo!

*waves to GB...you can have some too!*

zdt (zendevilTetti)

? Did someone say ?

I just want to say - I this place - thank you ladies

See, lilith, I told you what a great place this is

Hi lilith.. I don't suffer from fibromyalgia but by battling cancer I got a good dose of what it must be like. As you've already noticed there are lots of people here who care and are willing to listen. I'm sure you'll find some very good people here to help you feel like you're not alone in this. If you would like, feel free to stop by my space and chat with me. As I said it's not the same but I do understand feeling isolated and losing yourself to your illness.

Greetings Lilith. Not much help I know, but I just wanted to add my voice to the chorus here letting you know you are not entirely alone. I also have fibromyalgia (for 15 years). It hasn't caused me to lose anyone other than my self. I can still manage to give sympathy though and I certainly sympathise with you.

Ooops, just noticed i signed as "ZendevilTetti" not Terri!

Hmm; other folks have "bad hair" days, i have "bad finger days!"

*Waves to everyone & hands out some ....i wonder when Lil will be along with her famous tin?

zdt

Hi thanks for your comments. I looked up your thread and seen that ME was included. Unfotunately my daughter has been diagnosed with ME Hope you are ok. Are you suffering from De-Myelination?
keep well.

lillith

sounds lovely.sorry it took a long time to respond.I forgot about h2g2. How are you coping at the moment?I was very sorry to hear about your father Did you get bereavment councelling?
Hope your life will sweeten again soon.

lillith

Hi
could you be just what the Dr. ordered?
should I to you or away from you?
want to know more about the meet.
lillith

Thanks. your wrong it does help at the moment I am in the greatest battle for saving whatever is left of my self. cross your fingers for me.
Are you like me dreading the aproaching winter?
Hope your okat the moment.
Thanks again for the sympathy hope we will never lose the ability to sympathise.
lillith

Hi
I wish you didn't know what it must be like because it means that you are suffering greately.
unfortnately I am isolated and constantly in battle for keeping something of my self. I am not religious however hope is universal
I am not an alcoholic either but, one day at the time works for me too.
lilith

I crossed my fingers for you but then found it hard to type so I've crossed my ankles instead. That's interesting about dreading the winter. Apart from the short day length, I prefer the winter. The heat makes my pain worse. I keep ice packs (wet frozen dusters in polythene bags) ready in the freezer to calm it down as necessary. Do you find your pain is worse with the cold then?

I'm not too bad just now. Up and down like the proverbial fiddler's elbow day to day, but today was okay. May I recommend wine and pain killers (something like co-codamol or dihydrocodeine) as an agreeable way of achieving a useful amount of sleep at night - being careful not to over do it of course

In the meantime, if you feel like a rant or a grumble about what a curse life is, drop by my user space and make free

thanks for being kind in previous messages. here we are 2014 now 7 years later. some things have changed others improved then worsened again. im still here. surprised myself and others. didn't think i would last this long. Myalgic Encephalomyelitis and Fibromyalgia continue to baffle society around the globe. some researches making some progress, but deniers are in every corner of the globe. this illness more than any so far has managed to gain a lot of resentment for some reason.
from being attacked by second rate journalists in the tabloids, to government appointed critics.
the M>E secret files still refused to be opened (data protection act 2000) and have now got further restricted until 2017.
http://www.investinme.org/Article-358%20The%20MRC%20and%20Secret%20Files%20on%20ME%20Archives.htm
what are they so scared of and what are they hiding ? is it the POLIO connection from the 50's? the immunisation system and side effects ?
why would any one in the government wish to extend the length of time these files are locked for to 73 years. denying doctors , researchers and patients access to vital information. (i think the longest they can normally keep a file hidden from the public is 30)if any one knows for certain please let me know. im on a bad cycle again in the last year i have been mostly bed/ house bound. ;living like a bat. hope you are all doing well ME patients, Fibromites and all h2g2 out there.