Vanish Despair was created for the sufferers of fibromyalgia and chronic fatigue syndrome. As editor of the fibromyalgia site at Bella Online, I am often emailed information of a personal nature and tips that many persons have found to be helpful in battling this illness. So, I created Vanish Despair for all of the Bella Readers to voice their opinions and share tips on managing fibromyalgia and chronic fatigue syndrome.
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Thank Veronica,
I would just like to thank you for all your support for us Fibro sufferers, Bella on line was the first site l found in 1997 when l was diagnosed, Then l was being told it was all in my head, and only last month l was treated as though l was a moron and using the country for just payments from dss, uk, the doc l saw was an anaethetist, and was the gp l was referred to for the pain managemnet unit as the one l went to lriginally was kicked out from funding, she literally told me to walk my dogs 3 times a day, then to get myself out of a rut and get a job doing voluntary work, if l was well enough l would work for money which l did for 21 years before l had my injury which led to Fibromyalgia, this was last December (2006) so now l feel like l did in 1997 when l had no body to talk to, as my gp also says thats how it is now and might as well have said put up with it!!! when l told him l wanted to put in a complaint, l have never once had any tests to see if anything else is underlying, like arthritus, or chronic fatigue, which l think l have, and l havent seen a specialist since 1998 4 months after l was diagnosed, l was told then to teach myself of the internet and find books about it, all l was given was a leaflet on the illness and told to go on with my life. l wonder if anyone else has similar things happen to them and also come from the uk, as l thought in 2001 it went to parliament to say it was an illness and the doctors were going to be educated, which l haven’t seen as yet. I hope you are all getting some support out there and l am think of you all
Hello Kindred,
I was diagnosed in 2000 and fought my doctor. I thought I knew it all being a certified pharmacy Tech and having also worked in hospitals.
Tuff as nails I was, not a surgery kept me down and in fact I was a hiker, worked two jobs and raising three girls.
I had a surgery that went wrong and it was downhill from there.
You find out quickly what your family and friends think of you. It was as if they were cockroaches and once that light switch was turned on ran for the hills. That left me so alone and isolated and now I am grateful they are gone. It was then I realized that my giving nature was the cause for them to be in my life and when I needed some help, I was no longer viable.
My pride was wounded and as many of us are seen as ‘depressed’ this was not the predecessor for me. I am rather a jovial and open person. I was taught by some in the medical community it was a drug seekers ‘claim of pain’ or shear attention seeking.
I get to see both sides of this awful illness. I have heard the remarks from the medical field as my spouse works ER. He also worked a Psychiatric Unit and had a rather jaded opinion of this as his boss, a known drug user said she had this disorder.
She in fact did not and was then rather ‘outted’. This did not help with his understanding of what I felt.
On the dispensing side of the pharmacy counter , I also heard very negative things in the same vein.
I was appalled at what my doctor diagnosed. No one could have had that much pain, slurred speech, staggering gait and forgetfulness and something not show up in lab work.
Since then, I have been diagnosed by my primary, counselor, phsychiatrist, Rheumatologist and Neurologist. I am advised not to drive due to severe vertigo, have a lovely case of interstitial cystitis and ibs and Raynauds.
I have accepted that I have what I have. The symptoms were enough to warrant testing for MS, Lupus and a Stroke. Very scary.
Why my disability is still not approved is beyond me. Its been over two years, letters from people who have known me and who know me, a reccomendation from a doctor and still awaiting a hearing.
I much prefer to make money. I made a good wage, in both places I worked, one the pharmacy and the other a nutrional store and I am no fool.
Pain is not treated where I live. Concoctions of off label prescribed drugs are and some of those sent me to ER in a psychotic state. No more guinea pig.
My atty. was not filing in my behalf so I bypassed her and went to the state level, a Congressmans office. They have access to my records and clearly state that not much was filed in my behalf.
So consider that option. I went to the state level for not only help,but to raise consciousness. Fortunuately one of the Senators is an MD and clearly stated that not enough was being done and the way the laws had been written, the patients get lost in the process.
I encourage all of you to do this. Keep it factual, and as chronological as possible.
I still have retained my sense of humor and that will come out in further blogs.
Heat is my best friend. It is first on my arsenal of management of this disease.
I do know that after my surgery , I never got back to me.
I miss fishing and hiking, dancing, landscaping and my profession immensely.
I know what it is to lose friends and to have family members ridicule you and call you crazy.
For what it’s worth, do not engage in justifying your condition, keep it vague from now on. People will accept ‘I have a chronic illness’ and leave it at that. Don’t engage them as their judgements will certainly be cast upon you and while you are kicking yourself , often they are more than happy to jump in and offer a kick themselves.
No more.
That said, it is possible to learn compassion, find humorus ways of getting things done (I would not suggest standing on a coke crate with a wooden back scratcher to retrieve pears however)……I actually did that thinking mind over matter…..matter won LOL!
I am willing to bet many of us have found some very clever ways to accomplish things and many of those are funny.
I no longer feel negative about myself and in fact will get out of self to lend an ear or shoulder to others. And laughter is the best medicine.
I call fibro fog “Etch A Sketch” memory! Here, I will show you………*shakes head*……Oh hello, have we met and if so do you know where I was going?’
or……How do you tell if a fibro patient is on pain medication?…….THEY TAKE THEIR OWN TRASH TO THE CURB!
I have it in mind if I can get enough stories to actually do a show called ‘The Fibro Monologues’……=)
So chins up, for all the losses we have gained something. Mine first gift was boundaries, the second compassion and the third…….to stand for something inspite of the fact I can’t stand for long LOL!
It can be done. And again. Acceptance is the best method and once you accept what you have and find alternative ways to do things, people won’t be unaccepting. In order to be loved and accepted, you must love and accept yourself.
I bid you all a nite of comfort.
Alot of this is what I have with Fibromyalgia. It can come on strong one day and not the next. I take as little pain medication as possible as I’m not wanting a drug addiction. Even two vicodin a day and I am somewhat addicted. I need three a day and asking the dr today. Everyone tries to share natural healing remedies and alot tell me that my thoughts can cure myself lol. I guess so but it is not quiet and stress free here and since I can’t do alot of things, I have to accept that. Humor is the best medicine. And not talking much about your illness in groups other than ones like this as people start telling you about all the cures … This was a great blog. I am sorry we are in this predicament and just wonder if aliens have cures for it…if so I am looking to the skys lol. HUGS River
Selkie, really loved your writing…I can brag…take my trash to the curb! I can even take myself to the john! (usually) Toothbrush, now that’s a bit tricky. You made me laugh. Thanks.
3rdgoround