This has been so wonderful for me! To hear all of your stories and your encouragement has really helped me to understand I am not alone and I can still live a meaningful life. It is so important to me to live in service of others, to have a life of meaning that extends to the greater good, and the last few days have really shown me that I can still have that even though I have CFS!
I started this blog as a way to help myself deal with this illness and as a way to reach out to others that are struggling, coping, suffering, surviving, and living with this illness. I wanted to make a difference in someone’s life. The stories you have shared have touched me deeply and shown me that I AM reaching out to others and we CAN make a difference in each other’s lives!
One of the things that was hardest about this illness was how isolated I felt. It is a very lonely disease. There are no telethons, parades, marathons, or celebrities that make this illness visible to the public. I don’t really look sick. Most people I tell about my illness have never heard of it and the name Chronic Fatigue Syndrome really makes them go “huh?” “What kind of illness is THAT?!” “I’m tired too, do you think I have it?” I know they are well meaning and just don’t understand so I try not to get too discouraged! But it does make me feel very lonely. Like I can’t really quite get people to understand and recognize that I am sick. They think I can just sleep and feel better. First of all, I wish I could sleep, and secondly, if I could sleep I wish it would help! Sometimes, when I don’t feel like explaining my illness I just say “I have a neuroimmune disorder. It’s like MS”. Everyone knows what MS is so they nod with understanding and I don’t get anymore questions. Of course I feel guilty when I do this because I feel that I am doing a disservice to the disease and the millions of people like me that have it, but I can’t be an advocate every day. I get tired and I need to just have people understand that I am sick. I need to feel connected, if only for a moment. I don’t want pity, just validation.
This disease is isolating because people don’t understand but it is also isolating because of its limitations. Human contact is not something I have much of these days. My husband and kids are pretty much the extent of my social circle. I don’t get out of the house much anymore. The occasional grocery store visit is about the extent of my travel. This really limits the amount of human contact I have. Friends don’t call much anymore. They have lives to live too and they are just as busy as I used to be. I am not angry or bitter and I don’t blame them. I don’t know how I would act if it was the other way around. Maybe I too would have trouble finding time to visit them. I know it is hard for them to see me like this. It is a grief process for them as well. I remind them of how their lives could change at any moment. I remind them of how fragile life really is. That can be hard for anyone to take. Life is difficult, for all of us in different ways, and it is hard to be around someone that reminds you of that constantly. I know they still care. I get emails from them and when I see them in a chance meeting at the grocery store we hug and catch up and I can see the concern in their eyes and hear it in their voices. I am hopeful that someday things will change, but if they don’t I will find other ways to connect. Like this blog!
By writing in this blog I am less isolated. I can get my feelings out, share my experience, and make connections with others like me. I feel connected again. When I read the stories of others on this blog I feel intimately connected and I feel like I am doing something to make this disease have meaning in my life. And most importantly I feel like I am no longer alone.
Blog Archive
About Me
- buterflygirl
- Missouri, United States
- I am a mother of two great kids, a wife with a great husband, a college professor, and a graduate student. I am genuine and real, hard to get to know sometimes, thoughtful and kind, and I can be emotional. I am resilient and a fighter. I am an advocate and I tend to root for the underdog.
11 comments:
Consider Lyme disease, Lyme disease, Lyme disease... and related co-infections. 1) Get tested by igenex.com. 2) Check out ilads.org, and 3) Find a Lyme Literate doctor (sometimes abbreviated LLMD) from the Lyme Disease Association (http://lymediseaseassociation.org/) Don't dismiss this, regadless of whether you think you've ruled this out: there are a gazillion possible co-infections, and only an LLMD will know about this stuff. 4) For more resources, read my "Web Page Potpourri" column on Lyme (Google: "Web Page Potpourri" Lyme) You've got an infection, and you'll need help figuring out what it is to treat it successfully. 5) Finally, Buy (or harvest) and eat lots of greens... along with yellow, orange, read, and purple plants... Google "vitamix" and "soup" for some great recipes to get more of this stuff in you. Those are the best ideas I've got. Good luck!
Hi. Sorry that you have had a tough road.
I write just to pass along two names to you, specialists you likely have already sought out/ heard of/considered and rejected. One is Ritchie Shoemaker in Pokomoke, Maryland. The other is James Baraniuk at Georgetown University Hospital physicians in Washington, DC. Both are hands on clinicians and researchers, with Baraniuk being a bit more mainstream with a focus on CFS, Shoemaker perhaps more off the beaten track, but known for his work with disease following mold exposure/correlated with mold exposure. Being tested for Lyme Disease is also a path to pursue. The Western Blot test measures exposure to the lyme spirochete (borrelia burgdorferi) by measuring antibodies --IGM (early) and IGG(late). While 5 positive bands are necessary for statistical purposes by the CDC, the CDC website is clear that the 5 bands are not necessary for diagnostic purposes. Other tick borne illnesses may also be a factor--babesia, ehrlichia, bartonella, etc. Given your past penchant for outdoor activities, your potential for exposure sounds pretty high. Getting worked up on these possibilities by a competent physician would be good if you have not already done it. You may be told to seek out a Lyme Literate physician, which may be a good idea. For some people, particularly folks who are already hypersensitive/hyperreactive, the heavy duty and long term antibiotics that are advocated for Lyme can be davastating; for others they are very good. Proceed cautiously, but do cover those bases. Shoemaker could cover these options as well as the mold issues.
Blast, I just wrote a long email,then deleted it. Ah, CFIDs!
Best advice: Give yourself permission to nap. This is a different mind-set from being a wellie,when we all could go full bore for days and days, and naps were not the done thing.....nap=lazy,waste of good time,worhtless, lots of negative conotations with that three letter word.
Naps are curative,a necessity for anyone who is ill,so let yourself do it. And no guilt.
For my money,and my life, I think Dr. Paul Cheney,Vanderbilt Drive,Asheville,N.C. is the best there is. He thinks outside the box (so many doctors don't)and is always looking for new possible causes and cures. I've been with him for 10 years,and he's given me a life which is happy and mostly low-key active.
I did a study with him several years ago testing the amount of growth hormone is produced post exercise.In normal people it goes up, in us in doesn't move. Now I take small doses of human growth hormone twice a week.
He uses many herbal and other 'things', gluathione and magnesium being two he swears by.And they have sure paid off for me. CoQ10, high dose Vitamin B-12 shots (yes, you can learn to do this!) Won't bore you with the long list of prescription and non-script things he uses.
I have said in the past that if cow poop was a known cure for CFIDS, I'd be in the nearest cow pasture with a spoon.Oddly, that's a dead serious statement.
Perhaps we should start a chat group on Google,keep the loneliness at bay,make friends,trade what works and what may work.
If you are interested, post it on your blog and I'll set it up.
Bless you,dear, I've been where you are,and had masses of flash backs reading of your current problems.Tho' you feel lonely, you are not alone.
Harriet
Here is the best cfs doctor in your area. - Paula Carnes, fellow cfs patient but 80% recovered, patient advocate
http://www.drcharlescrist.com/contact.htm
Charles L. Crist, MD
1824 S. Lone Pine Ave. Suite C
Springfield, MO 65804
voice 417.886.8995
fax 417.886.8389
Here are some web sites to check... I hope you do. You don't have anything to lose.
http://www.anapsid.org/lyme/
http://www.personalconsult.com/articles/chronicfatiguesyndrome.html
http://www.chronicneurotoxins.com/
Kristina, Your insistence to reach out and connect touched me. The isolation of CFS is so difficult for a social, active person. It's physical, because your body can't get out there like it used to, and it's also emotional because nobody except other CFS suffers can really understand. And you can hardly blame them because I know I feel that way myself...how this invisible disease affects every activity and every aspect of my day.
I'm 4 years into this illness. Four years! I scoffed at the idea of being sick so long. First, I was certain I'd kick it in 2 to 6 months, then I knew I would in under two years! But of course, no matter how long it goes on, there's no way to give up!
It takes guts to go on, to learn to manage CFS, and hang on to being a productive, vital human being. So I am just cheering you on here, not giving advice. We should write a CFS cheer or something that everyone can shout at home in bed, at their computers .... rah rah rah, sis boom bah, Hey hey CFS get the hell out of my way, Today is the day, the big big day, I'll put you away!!! put you awaaaayyyy!!!
I'm so glad i found this blog. I've had CFS for 3 years. It is hard because it's lonely and people don't understand. Yes, i've also heard so many times 'well, i'm tired all the time too'. People really don't get it. They really need to change the name of this disease. And it's horribly frustrating because there isn't a cure and few good treatments. If you're interested, i can tell you what i've tried but i won't bore you with the long laundry list now. End result: i'm still sick, but a little better overall, although i don't think anything i've taken has really helped, i think i've just adjusted my life to such a low level that i can 'function' now. Reading about your sleep problems my only suggestion is: have you tried Ambien? I take that and Lorazepam every night to sleep and for my dizziness. Keep up with the blog-it's great!
I think a chat group sounds good, how do we go about making it?
Hello and blessings, my sister and fellow journeyers - Found your blog through the CFIDS newletter and am v. grateful, have been looking for this; other "chat rooms" haven't felt quite right - Maybe it's just that I'm ready to connect like this. . .Got sick in 1989 (after getting a rubella vaccination per college entry requirements) at the age of 31. Improved some in the first 5 years............Want to not tell my story just now but want to reinforce to you all - and to myself! - that we're not alone, as living with this thing (I believe it is a spiritual vehicle for me) has been harder, lonelier, than ever lately. Today felt reduced to a shallow puddle, emotionally and physically - More another time -
love and gentle hug to you,
Marthe in Oregon
I'm so horribly sorry to hear of your story -- so VERy similar to mine in many ways it made me cry. I am now going on 19 yrs with CFS/fibromyalgia. It is a very hard disease to accept, and what is much harder is others saying that it MUST be something else -- check for this...... yes I sympathize. Get the book, "Fibromyalgia for Dummies" It was recommended by my rhematologist. It really breaks the disease down completely. And the biggest thing -- like many others have said is REST -- the harder you push - the harder you fall... believe me I know... I will pray for your health.
Hello, I'm Alexandra. And you're NOT alone!! I was alone when I got crushingly sick in all the same ways you experienced. I had hiked in Yukon but couldn't lift my own limbs! I read some of these comments. Paul Cheney is outstanding, he helped me tremenously. Mostly because his regimens support one's bodily systems so well and that helps heal whatever has gone wrong. It heals over time though, and it takes a long time. I fell ill July of 1993 and considered myself "recovered" six years later! The road to recovery was long but it is real. You have to compare year-to-year...could I do "x" last year, etc. Mainly, I want you to know that you can perservere and get better, I did and I know people can. I have seen a few who have not, and what they seem to have most in common is their habit of dwelling on the illness and what they don't have and can't do. I instinctively did the opposite and think that it was pivotal to my recovery. I can now do "almost" anything, just paced. No one would ever know I have/had(?) CFS. I gave up running, hiking, aerobic swimming, tennis, skiing...and for a while felt bad about it. But guess what? There are LOTS of other things you can do instead!! But if you keep working hard with CFS specialists like Cheney or Teitelbaum or others, sticking to the protocols that support healing, you will get there!!! Good luck and enjoy your life, it sounds wonderful!!
Post a Comment