Discussions
CFS AND M.E illness
Posted by muscles68 • 5/14/08 • Subscribe to this Discussion [RSS] • Report This Topic
Tags: General, health, illness
Hi all i am an M.E sufferer. & i was just wondering if there are any other people with the same condition as im thinking of starting a blog all about this illness.
i have suffered it for over 12yrs now, in the begining i couldnt walk. i now work against my docs orders & to be honest im suffering both physically & mentally. just love to hear from others with the same maybee we can blog together,right daily daiarys on how we feel etc.
i have posted this again as my first title was not very clear sorry.
blogorious.blogspot.com/
User Comments
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Hi muscles,
We've already got something going. check out this link here on blogcatalog:
www.blogcatalog.com/discuss/entry/mental-health-blogs-lets-link-up-
The lack of interest in our post proves we live in an uncaring world.
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i care!! i have CFS. (finally) diagnosed 2007. lost my career. now trying to rediscover a sense of purpose.
i'm sorry you've had to put up with this condition for so long.
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Hi thanks im making a new blog at mo i would like peeoples stories and advice. It is horrible to go through. im having a bad relapse at the mo but im just managing to work.
heres the link to my new blog theres not much content yet as im just starting.
sleepingagain.blogspot.com/ -
I found this to be a helpful article - www.cfidsselfhelp.org/artcl_envelope_part1.htm
Check out other articles on this site too. Good value.-
Thank you
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Muscles, I'm sorry you're going through a difficult time and I'm sure that affects your outlook, but I disagree that it proves that we live in an uncaring world. It's not the worlds fault that those with MH disorders don't have many blogs. It's not surprising. In addition, I still think there's a tremendous amount of ignorance out there, not hate.
Trying to alleviate some of the ignorance is much of what my blog is about.-
You have a good point. but i would like you to write about how doctors themselves put you down or right you off.as well as other issues. i look forward to your blog and i hope we could work together some how.
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I wouldn't have much to say about bad doctors. I only experienced one bad doctor. He didn't put me down, he was just generally a nasty person. I only stayed with him a month. Fortunately all my experiences since then have been great. I know I'm lucky because I hear a lot of horror stories out there.
The goal of my blog is to show others who are suffering from mental illness a place to relate and hopefully educate others to the challenges.
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Muscles,
You are not alone, here is one of the oldest forum on similar issues sunshine35446.yuku.com/
I have just started a blog on pain relief. And today added a forum. You are welcome to post on the blog as a guest author or post a bit of your story on the forum. You do not have to register to post on the forum at this time
blog www.painrelief101.com
forum www.painrelief101.com/forum/-
Sorry I notice a couple of people tried to access the forum link I left and the url to the forum had changed to www.painrelief101.com/sf-forum.
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If you are interested in doing a full post register on the site and email me at admin@painrelief101com and I will set your account to author status
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i will do this also would you post on my blog in return. i think you may be of great help.
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I did try to go there got 404.
i have found it thanks and registered
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Hi Muscles,
I'm 35 and have had CFS since I was 15. Lucky me, huh?
I've also had some fun problems with mental illness as a result, such as depression and anxiety, although CFS itself is classified as a neurological illness.
I've never had a career, only one full~time job (4mths), and the longest I've worked part~time was just on a year.
Aaagh! What a pity~fest!
Anyway, blogging about CFS is something I've thought of doing myself, but didn't have the energy to run two blogs by myself.
So drop me a line, I'd be really interested in setting up a blog on CFS with others.-
JANYCATTE
I will do that i am willing to make anyone an author on my new blog like ive said ive just started it. I want people to understand how it effects us.also i want other sufferers to be able to come to an honest approach blog on this subject.
I personaly will be posting about how if feel each day if poss. it will be very personal. but i want others to experience what im going through.
Please email me if you would like to post on hear when you can xxx. -
Hi Janey,
I was suprised when i saw your little greeting in my shout box this morning! i'm really sorry you've had this condition for so long. it must have been hard as a young person. fortunately for me (if the word fortunately can ever apply to CFS!) i've had it a short while, since early 2005 i was 34 then and now 37.
The biggest battle is trying to figure out what my purpose in life is. this illness has changed my life. i feel sad and empty most of the time. i guess it's part of the greiving process, and i'll eventually work my way through it!
Anyway it's really great to have met you and the others here! Let's try to stay in touch.
~Kelleigh -
@Muscles
~ Sounds great, I'll do that. And I have plenty of stories about doctors who wrote me off.
Because I was only 15, my mother was there to stand up for me though. I probably wouldn't be here today if it she hadn't been so supportive from day one.
One doctor in particular told my mother to "smack her on the bum and send her back to school". ~I loved school, was a straight A/A+ student; I didn't want to be missing it! -
Kelleigh,
I would love to stay in touch with such a nice person.
I totally agree on the difficulty of finding a purpose in life. At the moment, my kids are the reason, and I'm developing hobbies such as blogging, drawing and other craft.
Funnily enough, before I got sick (and even after, it took me a long time to stop fighting it), I thought art and craft was a soft option. The only thing that counted for me was academia, getting a good job and being independent.
Not what I got at all...lol And it has taken me a long time to come to terms with that grieving. I know what you're going through, so hang in there.
My motto is now: "You've got to laugh, or you'll cry"
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OK everyone ive started on my blog please visit see what you think .ive added your links. thanks all.
sleepingagain.blogspot.com/-
I like it, Scott. I only had a quick look as I have to pick up Wren from school in a minute. ~ Love the url!
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Just had a longer look at the blog. It's a good start.
I've already got half a dozen ideas for posts. ~Getting them completed is another story.
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"The only thing that counted for me was academia, getting
a good job and being independent".
Me too! (i've stopped counting the coincidences now ;). Some people think driven & achiever-type personalities are more susceptible to CFS. I'm not sure. It can probably strike anyone. Thank you for your sweet words of encouragement. I love your motto! It's a good one!-
In a nutshell as a kid i had loads of energy but very nervous energy. i also had that spaced out feeling. so its poss to burn out i spose.
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JANEYCATTE
I will contact you this weekend so i can make you an authr of my site. then you can post when you feel upto it. -
Hi Muscles,
I would have to agree too that mental illness is stil a semi-taboo subject, although most would disagree. I have found that if you bring it up with someone in person, the subject will be changed as quickly as possible. It makes people uncomfortable, I've watced the look in their eyes as they wondered if I had an ax is my purse.
I was finally diagnosed with Bi-Polar at 40 years old. Just imagine how much of my past that explained! (Ya know...the whole ax in the purse thing, just kidding:)) anyway, even now people think that Bi-P is just mood swings and everyone thinks they have it if you talk about it, like it's a cold or something. But it is really more than that. On top of that I have fibro-myalgia, so some of my symptoms double up. But I can deal with that!
About doctors, well, being under their care all my life trying to explain it to them and not being correctly diagnosed until 40.....enough said.
I worked in healthcare all my life, I guess I could relate to people and what they had to deal with. But it was extremely difficult and sometimes I really thought I was just loosing my mind and wanted it all to end.
Now I have a great doctor, who listened, and prescribed two little pills. These 2 pills gave me back person I always knew I really was if all the craziness had been taken away. I still look back and can't believe the hell I lived in for all those years.
I guess what I really want to say is, there is always hope and there are really good people...
you just have to find the right ones.
Leeanne-
Leeanne
Thats a fantastic post. im so happy you were sorted out.
As you know ive just started my new blog.id like very much if i could post what you have just writen or if you'd like to wright something more, as im going to have a readers post catagory.
thanks
sleepingagain.blogspot.com/ -
That's why I started my blog, to educate people on what living with bipolar is like. I see many here looking to educate others for their needs also. I'm new to the blogosphere, but am finding its a wonderful thing.
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I apologize. I can't find it in this thread or the other one, but I misunderstood thought M.H. referred to Mental Health. I doubt it came across as offensive, but it probably made my comment confusing.
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Sorry bradley dont understand your post.
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I was saying that I thought when you were writing M.E. I though you were referring to mental illness in the posts all this time. I don't know why because it's M.E. and not M.I. but I guess my brain just hasn't been connecting properly lately.
I hope that makes sense. -
lol...well a lot of people with ME end up with MI, or MH problems anyway!
It's partly the way the medical establishment (not all but quite a few members) treated us.
~and partly because when you're exhausted for the rest of the day after putting the trash out, it gets a little hard to deal with after a while (try 20 years).
So no problem, Bradley!
~I saw that comment and thought you were having an ME moment or something, anyway. So we had no idea what was going on!
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Muscles,
I had never heard of ME and I find it very interesting. I got a "mystery" illness about 7 years ago. I had flu like symptoms at first, bad pain at the back of my neck and then the fever got out of control, I was running 103 and 4's...that's brain frying. Anyway, they tested me for everything, blood, scans, everything. They couldn't find a reason....so they just sent me home. I languored in bed for three months, and didn't know my own family.
Since then I have had this fatigue thing but the doctors couldn't decide if it was do to the bi-P or fibro-myalgia. Now I'm wondering if it was that sickness 7 years ago that set the whole thing off as far as fatigue goes. You've given me something to think about.
Anyway, sure I'll write for your page, just let me know what you want.
Leeanne-
leeanne
I have been told that fibro-myalgia,CFS & various other names are the same as M.E. IE they use theses names for the same condition.obviously each person suffers different symptoms.
As for wrighting stuff for the blog,its your choice. im going to be wrighting about my personal experiences, as well as posting useful info too. -
Leeanne,
I had the same thing before the onset of my illness.
It took over a year to be diagnosed as having had Glandular Fever (also called Mono in the US), and I had more than one false~negative result to the same test.
I was lucky to be referred to a diagnostician who insisted on re~running all of the tests. He then looked at my health following the Glandular Fever and diagnosed CFS.
Maybe you should ask your doctor to re~run those tests, or refer you to a diagnostician?
I have a list of symptoms on my blog, which will hopefully help you to rule this out. (I'll be adding something similar to Scott's blog soon)
kidzarama.com/cfs-symptoms-summary/
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Hey Muscles, go for it. The best mind therapy can be written therapy. I keep a blog about my back condition, and it's a fairly creative blog. It makes me think back and understand my past. -
Bradley its ok m8. people who suffer from M.E CFS etc, have mental health problems too, its part of the illness.So please discuss about what you feel.im doing a section on readers posts maybe you would like to send me one.
thanks scott-
Scott, I finally published something I've been working on for a while.
~You're my inspiration...lol
The link's in the message I posted to Leanne, a bit above this one. ~I didn't want to be accused of link spamming!
It's a bit here & there & too long right now, but I'll clean it up and put it up on sleeping again as soon as you set me up with a username
Hope today's a good day for you...
Cheers,
Jane
Oh, here's a good link, by the way. www.cfsdiscovery.com.au/
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Muscles & Janey,
Okay, I thought fibro- myalgia was a correct diagnosis but after researching CFS-ME I can see it has my name all over it. ME, I didn't know about but it couldn't be more accurate. I will be going to a neurologist to discuss this with him.
By the way, if you want to hear something funny...I once even had this diagnosed as equine encephalitis which is any of three forms of encephalitis that attack chiefly equines and humans in various parts of North and South America and are caused by three togaviruses (species Eastern equine encephalitis virus, Venezuelan equine encephalitis virus, and Western equine encephalitis virus of the genus Alphavirus) I cut and pasted that haha!
My reply to the Dr. was great, not even a normal disease...a horse disease!
Leeanne-
lol...well some of us just *have* to be different.
Sounds weird, though. Couldn't they give it a better name? I can imagine the intrusive questions about how it's passed on...
Seriously though, I'm sorry the symptoms fit for you, Leeanne. I was really hoping they wouldn't.
Make sure you do your research and you see one who knows a bit about CFS.
And keep in touch and let me know how you go with the specialist, okay?
I'm bushed & am off to bed now, but I'll check in tomorrow.
Take care,
Jane
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Thanks Jane, have a good sleep.....again....and again....and again
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Muscles,
Good morning, hope you are well. I just wrote an article, do you have an email for your approval?
Leeanne-
ive sent you pm leeane
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ok
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Jane i sent you a pm with my email
i need an email addy to set you please send me on thaks
scott -
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am I stupid or what...don't you dare answer that
anyway (Here goes) where is the pm?
Leeanne -
forget it, brain just chugged in gear and figured it out!
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maybee im doing it wrong but im pm leeane and jayne in your shout boxes
scott -
Any way peeps ive posted my first major post on the blog about me and how M.E effects me.
sleepingagain.blogspot.com/-
Hey Scott,
I just sent you an email & a pm with my addy in case you miss the email.
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Scott, did you get my email with the article?
Leeanne-
not yet babe ive pm you again x
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Just to say thank you everyone for all the help with this disscution and with my new blog lets hope we can all chip together and make people aware of M.E CFS & MENTAL HEALTH problems. & thank you for all being so kind.
im atempting to take the kids out for the day today, so ill reply to you all later.
THANK YOU THANK YOU THANK YOU
scott
sleepingagain.blogspot.com/-
Hi Scott,
Hope the day with the kids was fun!
Received your invite for the blog.
I'll have a go in the next couple of days at putting something together.
Take care,
Jane
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Ok JANE THANK YOU. AND YES DAY OUT WAS FUN BUT WINDY
SCOTT-
Hey Scott. Did you get my email about the posts I wrote?
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Just saw you've added your own post on symptoms to the blog, so I deleted the one I wrote. Don't want to double up.
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