About You
picture by © fairy774
In order for me to make this site as helpful as possible, please take a moment and tell me a little about yourself and your condition.
JUST COPY AND PASTE THESE QUESTIONS INTO THE COMMENT SECTION, AND FILL OUT WHAT YOU CAN. THANKS FOR YOUR HELP.
1. What is your gender (M/F)? What is your age? What are the medical conditions you suffer from?
2. How many years have you been sick? How many years were you sick before you were diagnosed?
3. To what extent does your condition affect your daily life? Are you mildly impaired, moderately impaired, severely impaired?
4. How do you feel about the medical attention you are getting? Is it poor, adequate, good, great? What could be better?
a. Do you use conventional medical treatment? Alternative? Both?
b. How do you feel about “claims” of cures? Are they just taking advantage of people in vulnerable positions?
5. As someone suffering from a chronic illness, what are your greatest challenges?
6. What have been your greatest successes?
7. What is the worst thing about your condition?
8. Has anything good come out of your hardships?
9. What is the worst part about being sick?
10. What could make the worst thing a little better?
11. What do you like about this site.
12. What could make this site better?
13. What didn’t I ask, but you would like to tell?
Catherine Morgan said
JUST COPY AND PASTE THE QUESTIONS INTO THIS COMMENT SECTION, THANKS FOR TAKING THE TIME.
1. What is your gender (M/F)? What is your age? What are the medical conditions you suffer from?
2. How many years have you been sick? How many years were you sick before you were diagnosed?
3. To what extent does your condition affect your daily life? Are you mildly impaired, moderately impaired, severely impaired?
4. How do you feel about the medical attention you are getting? Is it poor, adequate, good, great? What could be better?
a. Do you use conventional medical treatment? Alternative? Both?
b. How do you feel about “claims” of cures? Are they just taking advantage of people in vulnerable positions?
5. As someone suffering from a chronic illness, what are your greatest challenges?
6. What have been your greatest successes?
7. What is the worst thing about your condition?
8. Has anything good come out of your hardships?
9. What is the worst part about being sick?
10. What could make the worst thing a little better?
11. What do you like about this site.
12. What could make this site better?
13. What didn’t I ask, but you would like to tell?
Sharon Kiney said
1. What is your gender (M/F)? What is your age? What are the medical conditions you suffer from? F 62 Epstein Barr and CFS
2. How many years have you been sick? How many years were you sick before you were diagnosed?
I’ve been sick for over a year — was diagnosed last fall.
3. To what extent does your condition affect your daily life? Are you mildly impaired, moderately impaired, severely impaired?
I am retiring from my full-time job as a legal secretary. My energy levels are too low to continue working full-time. I have a long-arm quilting business at home and will continue to quilt for customers part-time. My physical condition has deteriorated considerably over the last year. I’ve put on 40 pounds, lost all desire to exercise, due to fatigue, and am depressed as a result. Hopefully I will be able to take daily walks and do moderate exercise once I am retired.
4. How do you feel about the medical attention you are getting? Is it poor, adequate, good, great? What could be better?
My doctor has been very good — he put me on B-12 shots right away. He has a good idea of CFS and what it requires in the way of treatment — and what it does not always respond to. We are working together well.
a. Do you use conventional medical treatment? Alternative? Both?
Both.
b. How do you feel about “claims” of cures? Are they just taking advantage of people in vulnerable positions?
I’m not a trusting person, but try to remain open to new ideas.
Don’t usually believe the first claims.
5. As someone suffering from a chronic illness, what are your greatest challenges? Mental and physical challenges — trying to explain the illness is challenging — people still think it’s “all in my head.” Physically, I am amazed at what I can’t do now that I could do a year ago.
6. What have been your greatest successes? No successes, really — except that I am able to get up each day and keep going. Early morning pain eases as the day goes on — until evening when it returns.
7. What is the worst thing about your condition? Pain and fatigue.
8. Has anything good come out of your hardships?
My husband is very supportive, now that he knows what CFS is.
9. What is the worst part about being sick?
Not being able to play and run with my grandkids.
10. What could make the worst thing a little better? less pain.
11. What do you like about this site.
It’s informative and supportive.
12. What could make this site better?
Can’t think of a thing!
13. What didn’t I ask, but you would like to tell?
You pretty much covered it all.
dancingdragon said
1. What is your gender (M/F)? What is your age? What are the medical conditions you suffer from?
F. 30. Lyme Disease, Chronic Fatigue Syndrome.
2. How many years have you been sick? How many years were you sick before you were diagnosed?
1. 1/2.
3. To what extent does your condition affect your daily life? Are you mildly impaired, moderately impaired, severely impaired?
Severely. I do not do much beyond eating and showering.
4. How do you feel about the medical attention you are getting? Is it poor, adequate, good, great? What could be better?
Inadequate. I have not yet come across a mainstream, respected doctor (and one who takes insurance) who treats CFS or complications of Lyme Disease. Actually, it is nearly impossible to find a doctor who even recognizes the illness exists, and among the few that do, they might not actually treat patients, or offer very limited options. 99% of doctors consider it to be depression, anxiety, stress, and/or psychosomatic. Even the 1% who acknowledge it exists, do not know how to treat it, or even offer anything resembling the treatment guidelines by the CDC.
Doctors do not like to be given information by patients, and just think you’re even crazier.
Chronic Lyme Disease is even less believed than Chronic Fatigue Syndrome.
a. Do you use conventional medical treatment? Alternative? Both?
Unconventional “conventional” treatment for Lyme Disease. But the rest is basically self-treatment and self-study of alternative treatments, since no doctors are helping. I do a little tai chi and take some supplements.
b. How do you feel about “claims” of cures? Are they just taking advantage of people in vulnerable positions?
Too many to be a guinea pig for them all, unless really desparate.
5. As someone suffering from a chronic illness, what are your greatest challenges?
Loss of productivity and things I would like to do. Sometimes too sick to help myself or get the help I need.
6. What have been your greatest successes?
I don’t know yet.
7. What is the worst thing about your condition?
Suffering.
Doctors could be doing a lot more but they aren’t simply because they don’t understand nor acknowledge it exists. Even with the CDC Awareness Campaign and educational materials and courses, if doctors already dismiss CFS, they are not receptive to this education, and consider it bogus.
8. Has anything good come out of your hardships?
Becoming even more open-minded, and trying to find faith.
9. What is the worst part about being sick?
Unable to be productive, and giving burdens to other people.
10. What could make the worst thing a little better?
Doctors believing and learning about the illness, so that progress can be made towards finding a cure or at least restoring some functionality and lessening the symptoms.
11. What do you like about this site.
Nudges me to try seeing if my doctor would be willing to learn about CFS.
12. What could make this site better?
For readability, currently it’s hard to tell where the post titles begin and end, in the links in the sidebars. It would be nice if it were easier to browse all existing posts, and by category.
13. What didn’t I ask, but you would like to tell?
Tanya said
1. What is your gender (M/F)? What is your age? What are the medical conditions you suffer from?
I’m female, 26 and have ME.
2. How many years have you been sick? How many years were you sick before you were diagnosed?
I’ve been sick for about two and a half years, and I’d been sick for about 6 months when I was diagnosed.
3. To what extent does your condition affect your daily life? Are you mildly impaired, moderately impaired, severely impaired?
EVERYTHING changed. I left my job through lack of any other option and went back to college, which I was only able to do because of an extremely helpful and understanding disabled students advisor. I now work from home, and on most days am able to do at least something productive, even if sometimes it’s only sitting there working at my computer. I do have good days when I can do a photoshoot or go to a meeting, but only if I know I can have two or three days to recover afterwards.
4. How do you feel about the medical attention you are getting? Is it poor, adequate, good, great? What could be better?
Somewhere between poor and ‘what medical attention?!’.
a. Do you use conventional medical treatment? Alternative? Both?
Apparently there’s no conventional medical treatment available to me, apart from the dangerous graded exercise therapy, which made me worse. I was put on anti-depressants (the ‘take these and shut up’ method of treating and incurable illness) but they also made me worse. At the moment, I use herbal remedies to help reduce anxiety and to help me sleep at night (as opposed to all day), and I take painkillers when I need to but I refuse to take addictive prescription painkillers any more.
b. How do you feel about “claims” of cures? Are they just taking advantage of people in vulnerable positions?
I do believe that things can help to relieve symptoms, but I’ve yet to see a cure actually work. I’m open to accepting that one might, but only if there’s actual evidence to support this. So far, it’s all just been ‘taking advantage of people in vulnerable positions’.
5. As someone suffering from a chronic illness, what are your greatest challenges?
My greatest challenge is trying to live WITH my illness without letting it rule my life and without being in denial and wearing myself down too much.
6. What have been your greatest successes?
Getting through college and actually finding a way to work!
7. What is the worst thing about your condition?
The complete lack of understanding from the medical profession.
8. Has anything good come out of your hardships?
Absolutely. I am stronger now that I ever was before because I’ve had to be, and I’ve realised that there is ALWAYS a way to succeed, even if it’s an unconventional way.
9. What is the worst part about being sick?
Not being able to do the things I used to do to relieve anxiety or tension, like walking, running or riding my bike.
10. What could make the worst thing a little better?
I don’t know…I’ve found other ways to calm myself down.
11. What do you like about this site.
It’s full of really useful information.
12. What could make this site better?
I don’t know…I like everything I’ve seen so far.
13. What didn’t I ask, but you would like to tell?
It’s incredibly difficult to have no financial support from the government which I don’t get because even though I fit the criteria to get disability living allowance, someone ‘up there’ decided that the kind of help I needed wasn’t financial so they just aren’t going to give it to me – I did appeal, but with no success.
mjjbunny said
1. What is your gender (M/F)? What is your age? What are the medical conditions you suffer from?
I’m Female and 64 years of age. I have CFS and Fibromyalgia.
2. How many years have you been sick? How many years were you sick before you were diagnosed?
I have been sick for 19 years and took 9 months for a diagnosis.
3. To what extent does your condition affect your daily life? Are you mildly impaired, moderately impaired, severely impaired?
It’s hard to answer this. I don’t have much of a daily life, but spend most of it on the computer. I think I’d say I’m moderately impaired.
4. How do you feel about the medical attention you are getting? Is it poor, adequate, good, great? What could be better?
I was seeing a CFS specialist for several years. He listened to what I said, checked my vitals. did basic blood work and wrote prescriptions. I have since moved and started over with a new doctor. While I don’t think he is very knowledgeable about CFS, he has run me through a battery of blood tests and MRI of the brain to rule out MS. I feel that he is far more interested in my overall health, something that has been lacking from the CFS doctor.
a. Do you use conventional medical treatment? Alternative? Both?
I use both.
b. How do you feel about “claims” of cures? Are they just taking advantage of people in vulnerable positions?
I am totally repulsed by ads stating there are cures. Many in the CFS community are desperate and will cling to any hope, even a false one.
5. As someone suffering from a chronic illness, what are your greatest challenges?
My greatest challenge is accepting myself as I am now and not as I once was. Trying to educate family and friends to the seriousness of this illness is another challenge. Unless they live in our bodies, they have no way of knowing what our lives are like. Getting the respect from the medical community is certainly challenging. But so is getting funding for research. I guess the list is long.
6. What have been your greatest successes?
I have started my own website to provide up-to-date news and information for others. It is something that I have felt was needed for a long time. I has also started a message board for support. While our symptoms may be somewhat different and to varying degrees, no one understands us better than someone sharing our illness. http://www.cfs-info.com
7. What is the worst thing about your condition?
My husband has taken over responsibilities that use to be mine. He doesn’t mind, but it makes me feel bad. My son will never remember me being healthy. Trying to do some things that I love always puts me in bed for days. And being sick is lonely.
8. Has anything good come out of your hardships?
I’ve learned who my real friends are. I’ve learned that my husband loves me no matter what.
9. What is the worst part about being sick?
All the years of my life have gone by while I still work to accept the situation as it is. I’m tired of being sick, I’m tired of those close to me not understanding, I’m tired of pills and pain and sleep problems. I’m tired of the government not doing more to help us.
10. What could make the worst thing a little better?
Research funding is desperately needed to we can find the cause. Getting a respectable name for this illness so it doesn’t sound like we need a nap. And training doctors to learn what to look for so it doesn’t take months or years for a diagnosis.
11. What do you like about this site.
12. What could make this site better?
I love your site. It is very inviting and informative.
13. What didn’t I ask, but you would like to tell?
I am still hearing the same stories from people today that I heard 19 years ago. We have to push hard to help those who are just starting out on this path. That’s why I feel it is so important to keep people informed. We must be proactive instead of reactive.
marzigeisha said
1. What is your gender (M/F)? What is your age? What are the medical conditions you suffer from?
Female, 30yo. CFS/Fibromyalgia
2. How many years have you been sick? How many years were you sick before you were diagnosed?
6 years sick, diagnosed in first year.
3. To what extent does your condition affect your daily life? Are you mildly impaired, moderately impaired, severely impaired?
I am now mildly impaired. I have suffered a few severe reccurrences after over-exertion, but generally I am managing okay. I was previously very severely impaired, for the first four years.
4. How do you feel about the medical attention you are getting? Is it poor, adequate, good, great? What could be better?
I am lucky to have found a Doctor who specialises in CFS and combined with other treatments, has gotten me almost back to normal. However my emergency room visits have often been met with scepticism from ignorant emergency room Doctors, I was once turned away when I was very ill with viral pneumonia and told not to come back. Luckily I ignored that Doctor and returned the next morning for my appointment with the respiratory specialist, who upon siting me immediately admitted me. I was in for week and at the end of the week asked my Mother to take me for a walk. I couldn’t walk. When I questioned a Doctor about it, he said that upon seeing me in the emergency room, they had thought I might not make it. I was lucky to have survived, and I should give my body some time to recover.
a. Do you use conventional medical treatment? Alternative? Both?
Both – I have found the combination of my GP – who gives me vitamin injections and put me on a combination of supplements, including Nilstat for Candida Albicans – and my Acupuncturist have been the answer.
b. How do you feel about “claims” of cures? Are they just taking advantage of people in vulnerable positions?
Definitely. There is no one cure for this illness. Everyone suffers differently and with different combinations of symptoms. What works for me, may not work for you. For instance a woman I worked with swore by her naturopath, but he didn’t help me at all. We all need to seek out our own answers.
5. As someone suffering from a chronic illness, what are your greatest challenges?
It used to be trying to stay happy. I still get very upset when I think of the years this illness has stolen from me. My twenties are gone.
The other thing is NOBODY believes you. Everybody thinks you are a hypochondriac. Because they don’t understand it and because some days you look okay, they don’t realise the gravity of the illness. The frustration of people not understanding, especially those closest to you, is heartbreaking.
6. What have been your greatest successes?
I am now at university (attaining great marks) and working part-time.
7. What is the worst thing about your condition?
All of it. How it makes you feel when you are so uncoordinated, tired, emotional, frustrated. That you can no longer trust your body to do the things that came naturally before. I always know I’m in serious danger when I burn myself, my body shuts down all uneccessary functions and it just doesn’t occur to me that the stove/oven is hot.
8. Has anything good come out of your hardships?
A better understanding of my body.
9. What is the worst part about being sick?
The loss of years of my life and the bitterness I carry when I think about it.
10. What could make the worst thing a little better?
More understanding and support from the community.
11. What do you like about this site.
Feeling like I am not alone.
12. What could make this site better?
I’m not sure.
13. What didn’t I ask, but you would like to tell?
That if you have got this horrible thing, don’t give up and NEVER EVER let a Doctor or anybody tell you that it’s in your head. It’s not. If you believe you are in danger with an infection, see another doctor and keep seeing them until you find one that will listen. You are not alone. Try everything you can, acupuncture, vitamins, naturopathy, change of diet, whatever works for you.
Bridget Brimer said
1. What is your gender (M/F)? What is your age? What are the medical conditions you suffer from?
F,16,Fibromyalgia, Kerotoconus, Raynauds
2. How many years have you been sick? How many years were you sick before you were diagnosed?
1,1/2
3. To what extent does your condition affect your daily life? Are you mildly impaired, moderately impaired, severely impaired?
Now I’m mildly impaired and can play violin somewhat again.
4. How do you feel about the medical attention you are getting? Is it poor, adequate, good, great? What could be better?
Good,my doctor is fantastic,but my friends and family don’t realize how living with this has been:like crap.
a. Do you use conventional medical treatment? Alternative? Both?
Just alternative.Conventional medicine does not heal well.
b. How do you feel about “claims” of cures? Are they just taking advantage of people in vulnerable positions?
Sometimes maybe. But what I am taking is making me feel more like myself again!
5. As someone suffering from a chronic illness, what are your greatest challenges? Violin: getting attention in orchestra class and being successful.
6. What have been your greatest successes?
Discovering alternative medicine and health food to heal myself.
7. What is the worst thing about your condition?
Back and neck pain still(worse in morning)and looking like a complete weirdo when I have to stretch at school.
8. Has anything good come out of your hardships?
Letting others know about alternative treatments. Learning that there is more to life than just being a master at violin.
9. What is the worst part about being sick?
Hard to go places,anxiety,pain everywhere,but especially nobody understanding what it is like to be sick with such strange things.
10. What could make the worst thing a little better?
Awareness and understanding.
11. What do you like about this site.
It emphasizes how it feels to have these conditions and has info.
12. What could make this site better?
To have more info. about nutrition because pharmaceutical drugs just cover up problems, not fix them and attack it from the root cause.
13. What didn’t I ask, but you would like to tell?
I think it is strange that many people I talk to think that fibro is just for older people, not young people like me. I also hate when people worry about me just because my doctor is not an M.D.What she is doing is helping me! I am on a multi-vitamin,aloe vera powder,ultimate flora(bacteria),botanical stress relief,digest formula,vitamin D, NKO(Neptune Krill Oil),Colostrum,yeast defense,glucosamine,condroitin and MSM.I am also eating about 95% organic food and drinks including acai juice.I am getting better too. I stongly believe I will totally rid myself of this stupid and unpleasing disorder!I am on my way! I want to encourage people to go to naturopathic doctors who practice alternative medicine at once and stop this suffering!
Bridget Brimer said
Yay!
David Hall said
Hello Catherine,
Please do not post this message on your Blog. This is a private message.
Nice Blog — I love it! Really — I have visited it a number of times.
I wrote a song about that Fairy 774 picture on this page. I will send it to you if you want hear it — it is called “Pink Dress of Splendor” and is about narcolepsy – I think it is less than 10mb. — large enough to tie up your dial up for 40 minutes if you don’t have broad band — but no big deal if you don’t mind the little wait for the email attachment download. I would need your email address I think, unless you know another way to get it.
There are an estimated 200,000 people in the United States who suffer from narcolepsy.
I also recently recorded an original “Post-Modern Blues” song called “I WIll Survive” about Chronic Fatigue Syndrome
I am very ill, with at least CFS if not MS or something else progressive, male, happily married, 52 years old, amateur musician in Madison, Wisconsin. I hope you are feeling well.
The person who made that Fairy art is apparently Hebrew? Do you know the artist? I downloaded a language pack to try to read parts of his/her website.
Nicci said
1. What is your gender (M/F)?
Female.
What is your age?
25.
What are the medical conditions you suffer from?
Chronic Fatigue Syndrome, Polycystic Ovarian Syndrome & Interstitial Cystitis.
2. How many years have you been sick?
3 years, 5 years with polycystic Ovarian Syndrome.
How many years were you sick before you were diagnosed?
2 years.
3. To what extent does your condition affect your daily life? Are you mildly impaired, moderately impaired, severely impaired?
I am currently moderately impaired, I work 3 days a week (however I am not sure how much longer I will be able to keep my job) and I am a part time freelance writer which is currently on hold. I manage to go out about once per month now, but remain pretty much housebound outside of work.
4. How do you feel about the medical attention you are getting? Is it poor, adequate, good, great? What could be better?
Well, I had to change Doctors after my last Doctor told me that my missing my period for 1 year over a 2 year period was fine so long as I wasn’t in pain. Initially the attention was fabulous and I have 2 Doctors – one who specialises in CFS and one who takes care of the rest. Unfortunately the Doctor who specialises in CFS is due to retire and the Surgery cannot tell me what will happen to me from here on in. I also have a neighbour who is a Physio Therapist and specialises in CFS who is happy to see me as and when I wish to.
a. Do you use conventional medical treatment? Alternative? Both?
I take no medication other than anti-inflammatories or aspirin for pain. I also use OGO products to aid with circulation. I am currently working on diet and supplementation one by one change by change to see what I do or do not react to.
b. How do you feel about “claims” of cures? Are they just taking advantage of people in vulnerable positions?
Yes they are. If the Medical World has not established the cause or cure or even decided on the most effective treatment then anyone who claims to have a cure is lying in my opinion.
5. As someone suffering from a chronic illness, what are your greatest challenges?
The psychological impact, I used to be a very active, social and achieving person and this period of ’standing still’ has been a big adjustment to me, my lifestyle is completely different although not necessarily negative. But at times finding a break away from simply sitting with myself and my illnesses has been a challenge. Also the opinions of others, friends, family, colleagues have probably been the most detrimental experience I have been through to date and are currently the main cause of any type of worsening of my symptoms due to the stress they cause and my desire to ‘prove them wrong’.
6. What have been your greatest successes?
Still maintaining a job, relationships, laughter, my personality and not allowing my conditions to become who I am but simply what I have.
7. What is the worst thing about your condition?
The stigma and the upset it has caused friends and family and what used to be my inability to help them come to terms with it along side me – although I have been working on this to great effect.
8. Has anything good come out of your hardships?
I am very much in tune with what is important to me and finally I realise why it is so important to learn how to say NO!
9. What is the worst part about being sick?
The isolation. Even when people understand – it’s all down to you at the end of the day. I feel alone on this, not lonely, but definately alone.
10. What could make the worst thing a little better?
To have people remind me more of how capable I am.
11. What do you like about this site.
It’s honest and open.
12. What could make this site better?
I’ll let you know : )
13. What didn’t I ask, but you would like to tell?
Nothing.
Teri said
1. What is your gender (M/F)? What is your age? What are the medical conditions you suffer from?
Female 46yrs young FM/CFS/IBS/renal failure one kidney 20
% function
2. How many years have you been sick? How many years were you sick before you were diagnosed?
10 1/2 yrs
3. To what extent does your condition affect your daily life? Are you mildly impaired, moderately impaired, severely impaired?
severely impaired.I have gone from one stage to the next of FM and CFS in less than 8 months.. Lost nearly 60 pounds over 1yr and muscle structure severely impaired.
4. How do you feel about the medical attention you are getting? Is it poor, adequate, good, great? What could be better?
I have had deal countless times with a broken system..ER for over 2 days and no results or referrals.
a. Do you use conventional medical treatment? Alternative? Both?
Painkillers that damaged my nerves and caused kidney failure to occur.. Alternative -some mediation.
b. How do you feel about “claims” of cures? Are they just taking advantage of people in vulnerable positions?
String them up… FALSE hope leads to further disasters…
Money not going into legitamate research.
5. As someone suffering from a chronic illness, what are your greatest challenges?
Getting to the bathroom and daily routines are all on hold … tiring to find help in time. Lose of independence and DEPRESSION.
6. What have been your greatest successes?
For over 3 years I could not hold a pencil and draw.. as an artist it was hell.. Just recently have been able to use my right hand for sketching and computer for more than 10 minutes.
7. What is the worst thing about your condition?
Absolutely filling overwelmhed…DEPRESSION
8. Has anything good come out of your hardships?
Finding who truly cares about my wellness.
9. What is the worst part about being sick?
My life is being held hostage against me.
10. What could make the worst thing a little better?
Finding a way to kill off the fatigue/pain cycles
11. What do you like about this site.
The feeling that I am not alone in the BATTLE!!!
12. What could make this site better?
13. What didn’t I ask, but you would like to tell?
Its finally a shared part of me.
Rebecca Sultana said
You have a great website. I cannot answer your questions right now since I am having a bad relapse but I will get back to you soon. You can view our support group’s website too – http://www.mesufferersmalta.org!
Love and health
Rebecca Sultana
Margaret said
1. What is your gender (M/F)? What is your age? What are the medical conditions you suffer from?
Female, 17, CFS, Lactose Intolerance, Asthma, Fibromyalgia.
2. How many years have you been sick? How many years were you sick before you were diagnosed?
Been sick since I was 8, so 9 years. I got my official diagnosis last year. So 8 years for that.
3. To what extent does your condition affect your daily life? Are you mildly impaired, moderately impaired, severely impaired?
Severly impaired. I’ve had to drop out of high school for it this year as I was sick and off school for pretty much 70% of the year. I’m now home schooled.
4. How do you feel about the medical attention you are getting? Is it poor, adequate, good, great? What could be better?
At this point I’m not getting any medical attention for it, although I was in a year long program last year which helped a lot.
a. Do you use conventional medical treatment? Alternative? Both?
Conventional and alternative. Anti-depressants, counselling and one heck load of vitamins as for the alternative acupuncture is freakin’ god send.
b. How do you feel about “claims” of cures? Are they just taking advantage of people in vulnerable positions?
Most defintely. The medical community doesn’t even have an official cause for this. How on earth can you cure something that doesn’t have a known cause. It’s just people taking advantage of people who’d do anything to get their life back, include spending 100s and 100s of dollars.
5. As someone suffering from a chronic illness, what are your greatest challenges?
Convincing people I am sick. When I was at school people had never heard of it. It was always just assumed by parents, teachers, class mates even my friends that I was bunking off from school. I had the truancy office on my back at one point even though I was seeing a doctor about my condition. It’s just so unbelievably futile to convince people of something that doesn’t show itself in an obvious way.
6. What have been your greatest successes?
Being able to hold down a part time job for the last 2 months. I have just been so amazingly pleased with myself.
7. What is the worst thing about your condition?
The lack of understanding and the loneliness.
8. Has anything good come out of your hardships?
I wish to become a pathologist in the hopes that I can study CFS and help people like myself. Since the training for that is so grueling a lot of people including my parents don’t think I can do it. I suppose it’s just made me all the more determined to live my life and do what I want to instead of being a disabled misunderstood creature.
9. What is the worst part about being sick?
I seriously don’t know if I can name one thing. It’s the total cumulation really. The actual illness and the stigma are both pretty much on equal par.
10. What could make the worst thing a little better?
A little understanding goes one helluva long way.
11. What do you like about this site.
The feeling that I’m not completely isolated in this, that there are people going through the same battles.
13. What didn’t I ask, but you would like to tell?
I cried when I saw this site. A lot of the sites out there are very much medical sites, but since you live with it, you understand the psycological trauma that comes with this illness. It does give me hope.
kelli said
1. What is your gender? What is your age? What are the medical conditions you suffer from?
F, 30, CFS and Menieres
2. How many years have you been sick? How many years were you sick before you were diagnosed?
With Menieres since a child. I suspect I became ill with CFS after the birth of my son seven years ago
3. To what extent does your condition affect your daily life? Are you mildly impaired, moderately impaired, severely impaired?
I sleep a lot, my house doesn’t get done. Because of the Menieres I have bouts of vertigo that will lay me flat for hours, sometimes days. I feel like I don’t spend enough time with my son or family and friends.
I am moderately impaired although sometimes I go through cycles where I absolutely cannot do anything and my son has to stay with my parents.
4. How do you feel about the medical attention you are getting? What could be better?
I try to stay away from the doctors as they treat me like I’m making this up. I believe my has been medical treatment inadequate.
The doctors could start by treating me like a adult instead of like a child thats faking a stomachache to get out of school.
a. Do you use conventional medical treatment?
I meditate (or rather try to, but fall asleep a lot) and walk when I have the energy.
One of the doctors put me on medicine for hypothyroidism, when in fact I don’t have it. He was trying to get my swollen lymph nodes to go down.
So I stay away from doctors. Other than that I’ve been basically told to “deal with it”.
b. How do you feel about “claims” of cures? Are they just taking advantage of people in vulnerable positions?
I feel like a lot of people are taken advantage of financially and emotionally. The quacks use hope to get to bank accounts.
5. As someone suffering from a chronic illness, what are your greatest challenges?
Daily life. It seems like that, sometimes.
6. What have been your greatest successes?
To many people this may not count for much, but I’m raising a wonderful child and if thats the only thing I ever do then so be it.
7. What is the worst thing about your condition?
The guilt, loss of self-esteem, the loneliness and lack of productivity.I also hate the dependency involved in getting even the smallest things done, like showering or being driven to get groceries.
8. Has anything good come out of your hardships?
My son has become very understanding towards others with visible and unseen disabilities.
9. What is the worst part about being sick?
The sense of loss, the guilt. I have family and friends around me and I still feel like I’ve lost everything.
Then that leads to feeling ungrateful for what I have and the cycle continues.
10. What could make the worst thing a little better?
I honestly don’t know. I know it’s not possible to make my feelings of guilt to go away without the illness going away.
11. What do you like about this site.
Everything,seriously.
12. What could make this site better?
There is so much information on chronic illnesses that I have not seen elsewhere. Just keep up the good work.
13. What didn’t I ask, but you would like to tell?
I also am a single mom and cried when I first found this site. It may sound odd but it’s wonderful to know that they are other ill people trying to raise their kids while being sick at the same time.
Gracie said
1. What is your gender (M/F)? Female
What is your age? 43
What are the medical conditions you suffer from? CFS, FMS, secondary depression, degenerating discs in neck, body doesn’t forget injuries.
2. How many years have you been sick? 10 years now
How many years were you sick before you were diagnosed? I was diagnosed very quick, before the 6 month requirement due to having a good relationship with my doctor.
3. To what extent does your condition affect your daily life? I have also accepted my illness. Before that I was extremely disabled. But now, I consider my self more of an undependable person, but can balance being at home. I quit worrying about getting back to normal and finding a treatment that would get me back to work and learned to accept that I will have ups and downs. I am currently trying other avenues for my future, painting and writing.
Are you mildly impaired, moderately impaired, severely impaired? I would place myself at moderately impaired to severely impaired.
4. How do you feel about the medical attention you are getting? Is it poor, adequate, good, great? What could be better?
My care was excellent in Orlando, Florida. But I have moved to NC where the medical community refuses to give me opiates for my pain. I was on a regimine(sp) of Paxil 20mg daily, Lyrica 50mg 3 times a day, Rozerem for sleep, Hydrocodone/Apap 5/325 2-3 times a day, and muscle relaxers as needed.
Since moving, it took a year for anyone to figure out that humana needed me to change from 50mg 3x a day to 75 mg 2x day to cover the Lyrica, Humana will not cover rozerem, and doctors won’t treat chronic pain with opiates, unless I go to an expensive pain doctor and even the one I did try refused to use opiates for me “due to studies on fms”. Well, I am an exception to the rule and none of them will help me. Even though I have tried everything else and the therapy I was on was helping me so very much. I am very frustrated here. Wishing I had never moved away from Orlando.
a. Do you use conventional medical treatment? Alternative? Both? none at the moment. I don’t even take the anti-depressants any more, they weren’t helping much any way. I find very little difference other than the severe mood swings once a month. Something I never had until a year after getting sick. I will take Ibuprofen when the pain is so bad I can’t move. IT at least takes a small edge off the top.
b. How do you feel about “claims” of cures? Are they just taking advantage of people in vulnerable positions?
When we first get sick, we will do anything to get our life back, it took me 7 years and even now, I find myself every once in a while wanting to try something that someone says helped their friend get better. But my husband keeps me level when that happens, reminding me of all the time and money I have wasted on these so called cures.
They take advantage of the vulnerable in my opinion.
5. As someone suffering from a chronic illness, what are your greatest challenges?
Keeping any type of schedule.
6. What have been your greatest successes? Acceptance of the illness. Learning to paint. Learning to say no, that was a hard one.
7. What is the worst thing about your condition? Having anyone tell me that I need to get out more. If I could I would!!
8. Has anything good come out of your hardships? I have gained so much Empathy for others.
9. What is the worst part about being sick? Social Security Reviews every 3 years with new doctors each time. Not having a doctor like the one I had in Florida who didn’t have any problems with my knowledge on this illness.
10. What could make the worst thing a little better? For Social Security to have the doctors contact them when they think you are no longer disabled instead of Social Security having to find new doctors for independent medical exams and worrying that these doctors may not believe in your illnesses and how badly they affect you.
11. What do you like about this site.
You have lots of good stuff on CFS.
12. What could make this site better?
I don’t know, it is your site.
13. What didn’t I ask, but you would like to tell?
How hard has this been on your family?
My son came down with OCD when we lost our home from not getting Long Term Disability from my insurance carrier through work,leaving us destitute. Then having to wait 2 and a half years for SSD to accept the doctors proof that I was too sick to work. The loss of intimacy from being so sick has affected my marriage so much that we are more like room mates than spouses and the threats from my husband that he is tired of it and the unpredictability and how he wants to leave and start a new family. URGH!!!
This illness is just as hard on our family as it is on us. I just wish they could accept it as I have. Maybe some day. Maybe not. I can live with whatever they decide.
Indy said
1. What is your gender (M/F)? What is your age? What are the medical conditions you suffer from? F.14.C.F.S
2. How many years have you been sick? How many years were you sick before you were diagnosed? 2yr.s 1 and an half not really diagnosed.
3. To what extent does your condition affect your daily life? Are you mildly impaired, moderately impaired, severely impaired? I can’t go to school. I’m a freshman me and my friend were really excited about our first year at high school.
4. How do you feel about the medical attention you are getting? Is it poor, adequate, good, great? What could be better? Frankly it’s aggravating. It started at as mono when I went to the doctor they said I didn’t have it that I was just lazy I should suck it up and go to school. Kinda funny when I think back on it. A week later they said I had mono. Later it developed into c.f.s.
a. Do you use conventional medical treatment? Alternative? Both? Vitamins.
b. How do you feel about “claims” of cures? Are they just taking advantage of people in vulnerable positions? Don’t believe it.
5. As someone suffering from a chronic illness, what are your greatest challenges?
Seeing your family members worried about you.
6. What have been your greatest successes?
Uh…graduing middle school.
7. What is the worst thing about your condition?
Having several people ask you every single time they see you, “how are you?” then saying “fine” I don’t like to lie
8. Has anything good come out of your hardships? Learning not to stress what will come will come you can’t rewind. Not worrying about the future or past think of now.
9. What is the worst part about being sick? Doctors. Doctors who sugar coat, doctors who take advantage, doctors who don’t care or try, doctors who have no idea what they are talking about and won’t admit it.
10. What could make the worst thing a little better? Be able to actually wake up when I’m awake.
11. What do you like about this site. Letting it express yourself.
12. What could make this site better? It’s fine.
13. What didn’t I ask, but you would like to tell? Being a teen is tough enough. I like to view this as a lesson not a syndrome, I’m just someone with a challenge to overcome.
Pennny said
1. What is your gender (M/F)? What is your age? What are the medical conditions you suffer from?
Female
2. How many years have you been sick? How many years were you sick before you were diagnosed?
13 yrs / 3 months
3. To what extent does your condition affect your daily life? Are you mildly impaired, moderately impaired, severely impaired?
Varies from moderate to severe
4. How do you feel about the medical attention you are getting? Is it poor, adequate, good, great? What could be better?
think my dr. is doing all he can
a. Do you use conventional medical treatment? Alternative? Both?
Conventional and supplements
b. How do you feel about “claims” of cures? Are they just taking advantage of people in vulnerable positions?
I don’t believe them
5. As someone suffering from a chronic illness, what are your greatest challenges?
Isolation/grocery shopping
6. What have been your greatest successes?
I have cycles when I’m better and I do volunteer work at that time.
7. What is the worst thing about your condition?
Depression/pain
8. Has anything good come out of your hardships? Two good friends with the same illnesses
9. What is the worst part about being sick? lonliness
10. What could make the worst thing a little better? I got a dog.
11. What do you like about this site. It’s inclusive
12. What could make this site better?
13. What didn’t I ask, but you would like to tell? I’m 49 and my grown daughter has suffered from my suffering…I haven’t handled it very well…I haven’t been the “strong” mom she needs.
She no longer wants to be around me.
Laurie said
1. What is your gender (M/F)? What is your age? What are the medical conditions you suffer from?
F, 38, Chronic fatigue Syndrome & Fibromyalgia
2. How many years have you been sick? How many years were you sick before you were diagnosed?
11 years, I was sick over a year before diagnosis
3. To what extent does your condition affect your daily life? Are you mildly impaired, moderately impaired, severely impaired?
Severely impaired, can not work or go to school, it takes all my energy to manage my illnesses.
4. How do you feel about the medical attention you are getting? Is it poor, adequate, good, great? What could be better?
It is almost non-existent. Anytime I try anything it makes me more sick.
a. Do you use conventional medical treatment? Alternative? Both?
Both. Deep tissue massage helps a lot as well as eating very healthily and gentle exercise regularly.
b. How do you feel about “claims” of cures? Are they just taking advantage of people in vulnerable positions?
Yes.
5. As someone suffering from a chronic illness, what are your greatest challenges?
Staying positive. Trying to explain the situation to others. Dealing with living so much alone and isolated.
6. What have been your greatest successes?
Moving to Florida. Accepting how sick I really am. Physical Therapy & massage. Using the internet. Learing other interests that I can do such as cooking, knitting and reading more.
7. What is the worst thing about your condition?
Having to give up all the activities I love. Having to depend on my family.
8. Has anything good come out of your hardships?
I learned a lot about so many things, such as how badly our society is structured and functions, how much diet affects health & society, how many people are not supportive or understanding when you really need them. I learned about how many others are sick and suffering every day.
9. What is the worst part about being sick?
10. What could make the worst thing a little better?
11. What do you like about this site.
12. What could make this site better?
13. What didn’t I ask, but you would like to tell?
Naomi said
1. What is your gender (M/F)? What is your age? What are the medical conditions you suffer from?
I’m Female, 21 years old, and i have CFS and high blood pressure
2. How many years have you been sick? How many years were you sick before you were diagnosed?
I have only just been diagnosed with CFS but have been dealing with the symptoms for 2 years since i had glandular fever.
3. To what extent does your condition affect your daily life? Are you mildly impaired, moderately impaired, severely impaired?
i am only mildly/moderately impared by CFS, but to me that is severe. I was working as an environmental education teacher before being diagnosed, and it has been very difficult the whole time i was teaching to build up the energy to get up for work. After 9 months of working it has all got too much and CFS has finally taken over. My doctor has told me to leave work, and i am now trying to work out what i can do to keep my mind focused on something..anything!
4. How do you feel about the medical attention you are getting? Is it poor, adequate, good, great? What could be better?
I am, luckily, recieving private medical care – i live in the UK and the NHS were just not working for me. My father gets private medical care, and i am included in the cover. The doctors seem to understand my condition completely.
a. Do you use conventional medical treatment? Alternative? Both?
As i have just been diagnosed they are curently trying to find out a bit more about me generally. the doctor has been talking about sending me to a clinical psychologist, and he says there are a number of different things we can try to see if anything will help me.
b. How do you feel about “claims” of cures? Are they just taking advantage of people in vulnerable positions?
I’m not sure what to think about it really.
5. As someone suffering from a chronic illness, what are your greatest challenges?
Just generally getting up in the morning is my main challenge at the moment. Telling my friends and family is quite hard – and telling work will be the hardest thing i will do i think – i love my job.
6. What have been your greatest successes?
none as of yet.
7. What is the worst thing about your condition?
Not being able to have as ‘healthy’ a relationship as i would like with my boyfriend.. if you know what i mean..
8. Has anything good come out of your hardships?
i’m glad that i have been diagnosed now so that i can begin working out how to manage my condition instead of fighting against it.
9. What is the worst part about being sick?
having to leave work and move back in with my parents. also having to move back to living in london.
10. What could make the worst thing a little better?
i’m not sure at the moment
11. What do you like about this site.
i’ve just come across it! i will let you know soon! lol
12. What could make this site better?
too soon to pass judgement
13. What didn’t I ask, but you would like to tell?
i’d like to say that i hope you all have good support systems – i think it’ll make a difference
Kurt said
1. What is your gender (M/F)? What is your age? What are the medical conditions you suffer from?
Male, 51, CFS/Lyme
2. How many years have you been sick? How many years were you sick before you were diagnosed?
12 years, about 6 years before full diagnosis with CFS & Lyme
3. To what extent does your condition affect your daily life? Are you mildly impaired, moderately impaired, severely impaired?
Totally disabled, for purposes of career/job
4. How do you feel about the medical attention you are getting? Is it poor, adequate, good, great? What could be better?
ROFLOL… Medicare will not cover the cost of CFS treatments by the only CFS/FM clinic in my area. So I get nothing, self-care is the only option, but have no funds for much.
a. Do you use conventional medical treatment? Alternative? Both?
Have used both, and then some.
b. How do you feel about “claims” of cures? Are they just taking advantage of people in vulnerable positions?
No, they are not taking advantage, some claims are true. I know multiple people who have recovered from CFS, it is possible for some subsets. There are many subsets of CFS, that is part of the problem with treatment. But most claims are inflated because people with CFS lose so much self-awareness that some say they are more recovered than they really are, but the doctors/practitioners do not track them longitudinally. I recovered partially once, and went back to work full-time, but have never recovered from the relapse. Trying to recover totally was part of the problem, so I overspent my recovered energy. In my experience, being realistic about recovery is hard for a type-A personality, which most people with CFS have been at some point.
5. As someone suffering from a chronic illness, what are your greatest challenges?
Family denial because they can’t see the disability, financial and family stress are the hardest. But also a great challenge is from my own inability to make much of a contribution to the world.
6. What have been your greatest successes?
-Relocating, that was quite an accomplishment, took weeks to move me across the country.
-I have had time to start up some old enjoyable hobbies again
7. What is the worst thing about your condition?
Inability to be a productive member of society, and also loss of mobility, I loved to travel before.
8. Has anything good come out of your hardships?
Empathy for others, realization about how broken our social systems really are.
A new understanding of the inherent flaws in the old political/economic systems including Capitalism. We need to design something new. I would never have realized that.
9. What is the worst part about being sick?
Damage to family relationships, learning how shallow most people really are, and I was too.
10. What could make the worst thing a little better?
Better PR about CFS. More research funding. AIDS gets 1000x times the funding of CFS on a per-patient basis, for example. We need to make a LOT of noise about that because CFS causes as much pain and suffering (maybe more), and costs society a lot.
11. What do you like about this site.
NA, just found it.
12. What could make this site better?
13. What didn’t I ask, but you would like to tell?
What gives me hope…. the human spirit is still basically good, I have seen that in the few people who have helped me through this. I believe that eventually CFS will take its rightful place in society and get the attention it deserves. And that will probably benefit everyone as all of society is getting sicker for some reasons that need better disclosure.
Jeanie Bostian said
. What is your gender (M/F)? F What is your age? 50 What are the medical conditions you suffer from? CFS
2. How many years have you been sick? 20 How many years were you sick before you were diagnosed? several?
3. To what extent does your condition affect your daily life? Are you mildly impaired, moderately impaired, severely impaired?
(severely impaired)
4. How do you feel about the medical attention you are getting? Is it poor, adequate, good, great?( Is it poor) What could be better? A doctor who will take an active interest to try to find out underlining cause?
a. Do you use conventional medical treatment? Alternative? Both?
(Both?)
b. How do you feel about “claims” of cures? Are they just taking advantage of people in vulnerable positions? (Yes!)
5. As someone suffering from a chronic illness, what are your greatest challenges? Just the every day-day after day extreme burn out.
6. What have been your greatest successes? A great marriage
7. What is the worst thing about your condition? Not having many functional hours a day
8. Has anything good come out of your hardships? (More compassion for others suffering)
9. What is the worst part about being sick? (Not being able to live a very productive life)
10. What could make the worst thing a little better?
(A few more hours a day were I am not exhausted)
11. What do you like about this site.
Just that its here
12. What could make this site better?
Don’t know yet?
13. What didn’t I ask, but you would like to tell?
Theres not enough space and I am too dang tired to type it out
neil ziefflie said
1. What is your gender (M/F)? What is your age? What are the medical conditions you suffer from? male 47 cfids
2. How many years have you been sick? How many years were you sick before you were diagnosed?13 years and 3 years
3. To what extent does your condition affect your daily life? Are you mildly impaired, moderately impaired, severely impaired? moderately impared if i dont over do it
4. How do you feel about the medical attention you are getting? Is it poor, adequate, good, great? What could be better? poor
a. Do you use conventional medical treatment? Alternative? Both? i use both
b. How do you feel about “claims” of cures? Are they just taking advantage of people in vulnerable positions? yup ive tryed a lot of things
5. As someone suffering from a chronic illness, what are your greatest challenges? trying to find a partner that is the same as me
6. What have been your greatest successes? my acreage of peace and seranity that i built
7. What is the worst thing about your condition? lonleyness
8. Has anything good come out of your hardships? just my acreage
9. What is the worst part about being sick? had to sell my buissnes
10. What could make the worst thing a little better? finding happiness
11. What do you like about this site.ive realized that there are many more like me
12. What could make this site better?i cant think of nuttin
13. What didn’t I ask, but you would like to tell? keep up the good work