My daughter wrote this:

Chronic Fatigue Syndrome
May 12, 2011 in Small Bites

Today is International CFS/ME/ Fibromyalgia Awareness day and a few weeks ago this post was doing the rounds of Facebook statuses:

YOU DON’T LOOK SICK?! No, I don’t. It is so hard to explain to someone when they have no clue. It’s a daily struggle feeling sick on the inside while you look fine on the outside. Please put this as your status for at least 1 hour if you or someone you know has an invisible illness! (Anxiety, Lupus, Fibromyalgia, Chronic Fatigue, PCOS, Endometriosis, Diabetes, Crohns, Arthritis, Epilepsy, MS, IC, and/or Depression)

So I decided it was probably time to do a blog about Chronic Fatigue Syndrome and shed some light on a hard to understand illness.

It was nice to see a little awareness about “invisible illnesses” as they are difficult to explain and even more difficult to experience. I was holding off on talking about Chronic Fatigue Syndrome on my blog because I get upset when I have to explain it and lay it out in black and white. It hits me how real it is and how well I can brush it off and keep positive; having it out there in the most honest way can be a scary and confronting thing. I’m good at making jokes about it; after all sometimes there isn’t a lot else you can do to get through.

Reading the above statement made me think about a time when I did have to explain CFS to someone who really had trouble grasping the situation and understanding it logically. I had luckily read a fantastic article by a woman with Lupus (which has similar energy depletion to CFS) who explained the way her energy worked using spoons as a measurement. Unfortunately spoons didn’t quite cut it for my logical friend so we agreed to say ‘energy pills’ instead. So, I’m going to try and explain how the lack of energy for CFS sufferers works. There are more symptoms than just being tired but this is the biggest and easiest one for people to relate to.

Ok, so say we all have these “energy pills”, every day you wake up with an almost limitless amount which allows you to exercise, go to school/uni/work for the day, catch up for lunch with mates, drive down to the shops to pick up groceries, vacuum the house and so on and so forth. Now I’m going to give you an illness that depletes your energy, so as of now you have Chronic Fatigue Syndrome. The bed ridden only have about 10 energy pills, the more functional somewhere between 30-50, the ‘lucky’ ones who have got mild CFS get 50-100. I’m going to give myself 40 pills to work off. Now you have a limited supply of “energy pills”, you wake up and you only have 40. The little things that didn’t cost you anything yesterday cost you a lot more today. Washing your hair? 5 pills, getting dressed- 3 pills, making breakfast 2 pills, forcing yourself to exercise for 15 minutes- 20 pills, you have only made it to 11.30 in the morning and you only have 10 pills left. Now you have to make choices! Wash your hair or grocery shopping? Play Wii dance with your sister or make your own dinner? Get on the exercise bike or go shopping and have a coffee with mum? You have to pick and choose what is important and worth using energy on. It certainly gives you a greater understanding and respect for the energy that you do have and the things you want to spend it on.

Occasionally I do something that pushes my energy into the negative, I’ve used more than I could possibly have; that is when you start the next few days down a lot of energy pills. It is a constant battle and balancing act. It has taken me many years to learn the balance and learn my limits. This is by no means an original idea but it’s a fantastic way to show how much someone with CFS or similar illnesses has to watch what they spend their energy on. I don’t want to make it seem all doom and gloom for you all, because in all honesty I wouldn’t trade my experience for anything. I have learnt so many life lessons that take other people years to even touch on, I’ve become a better person because of it and it has definitely shaped me and changed how I will live the rest of my life. But it is also real, and scary and horrible because there are no answers and there is no time limit and that makes the future a bit hazy and can be incredibly difficult. I do my utmost to stay positive about my life but I won’t lie- I have a lot of off days where I’m utterly miserable, but I always pick myself up and keep on keeping on because that’s all you can do.

I do my best and have a beautiful support network of friends and most importantly my wonderful family. CFS can be very isolating so it’s a special thing to have family and friends who do their absolute best to accommodate me and not make me feel like I’m a burden to them. And I think that is what having an awareness day is about- it’s not only the people who suffer from these illnesses but also the people who are around and care about you. I can’t thank my family enough for the things they do and the way they support me. The same goes for my friends. I went to an immunologist a few weeks ago and he asked me whether I had a good network of supportive friends, when I emphatically replied yes and that I couldn’t ask for better, more understanding people to have in my life he was surprised. Apparently I’m very lucky, as a lot of people lose friends or don’t have strong support from the ones they’ve got when they get diagnosed with a chronic illness. So I count my self very lucky for the family and friends in my life and want to say thank you because I know it’s not easy.

Headaches, sore muscles, nausea, concentration/memory difficulties and extreme fatigue are my symptoms, however CFS is not who I am. I have learnt and grown from my experiences and I can only hope that each day gets a little better until I’m up and running with the rest of you. But for now, I’m taking it day by day and staying as positive as I can. Today is better than yesterday so I’m happy for the moment!

40 Responses to “My daughter wrote this:”

  1. Becky says:

    Hi, I have just read you post and I fell so sorry for you. I know how hard it is to have an invisible illness. I have a genetic syndrome called Fragile x and it causes me to have learning difficulties and trouble with communication.

    It’s not an easy life to live when you’ve got something wrong with you, and so many people don’t understand how it effects you because they can’t see it.

    I bet you get teased alot. I know I have. When I was going to school, I was teased so much and I felt so angry and upset because I knew that I was different from the other students and I bet you have had a similar experence.

    Now I’m studying art at Tafe and I don’t really get teased anymore, which is great.

    I just hope that there’s a cure for your illness because there isn’t one for mine.

    Keep smiling and don’t let anyone make you feel bad because they are the one’s who will end up becoming the looser in the end.

  2. Paul says:

    Becky – My daughter has chronic fatigue not me – she wrote the post for her website and I posted it here so as to promote International CFS/ME/ Fibromyalgia Awareness day.

    She has had chronic fatigue for 6 years and is a very brave women, fearless in her fight with it but as she says at times it gets to her! It is avery hard journey as you understand having your own health issues to deal with. It sounds like you are also a fighter and a winner so keep going!!

    cheers

  3. Cat Winterfox says:

    Thanks, E., for a wonderful, informative post.

  4. Grandma Mil says:

    Dear E,

    You are indeed inspiring by talking about your condition; no one really knows how many people have CFS, but your talking about it and sharing your experiences will help others…many people do not know about this CFS. Maybe more people have to be educated about it.

    One of our twin daughters, age 52, came down with multiple sclerosis 2 years ago. It came with no warning, just numb legs. She fights it with exercise and medication, and so far is doing well, for her attitude is so admirable, just like yours.

    Yes, it came as a shock to all of us, but no sad songs for her. She travels to see her children in college with the help of a service dog. She drives, has a lovely apartment, and comes down to Florida by plane to visit us.

    She now has a purpose dear to her heart. She is an advocate for people who need service dogs, like wounded veterans and people like herself. She spoke to state representatives about passing laws allowing service dogs to do their job without discrimination.

    Her dog, Linus, a Golden Retriever, is trained to know 100 commands..we call him our granddog! He goes all over with our daughter…on car trips, plane trips, department stores, restaurants, and yes, even a Broadway show. There are days, we know, when she feels tired and must rest but she manages to do what she has to do to take care of herself.

    I was debating if I should send this, but you, like our daughter, are an inspiration, so here is her story. Perhaps in some small way her experience will help others too.

    Shalom (best wishes) and love,

    Mildred Levine (Grandma Mil)

  5. Liz says:

    Thank you for writing about this very real yet hidden experience. I reread it many times and it struck me on many levels. The fact that you choose what you use your energy on I see leads to a more mindful life and you said that CFS is not you, it does not define who you are, but rather you deal with it and create a life with it and despite it. Really gave me a lot to think about. You said the condition depletes energy and along with it you have found in you an inner limitless strength.

    I really liked your video with your dad. If I were a show producer, I will tap you as a creative talent and perfomer and even have your own show. Talent scouts out there see the video!!! Maybe even a unique father/daughter cooking show–the energy of that clip was really good. Also you inspired me to try the butter cookie recipe (mine turned out to be flat cookies as I cannot find corn flour–is that corn starch?). I am rambling.

    Thanks again for writing about your experience.

  6. Becky says:

    Thanks Paul for the reply. I know you don’t have any health issues. I was only talking to your daughter and sharing my depest sympathy to her as a person. I would like to know what her web site is so that I can chat with her about her illness a little more if she feels comfortable.

    It’s good that she’s a strong woman and she’s able to fight through life’s ups and downs.

    Keep smiling

    Becky

  7. Melody says:

    Thank you for sharing your daughter’s wonderul post–it is so true that we cannot understand easily what we don’t see. I cannot fully imagine having to think out your day and activities based on what energy you may and may not have.

    I cheer her determination to not let CFS define her–my thoughts and wishes go with all of you.

  8. Paul says:

    oops! Sorry Becky – my bad!

    Her site is linked on here in fact both my daughters sites are linked here: Books Baguttes and Ballet Slippers is Emily’s site and Ramblingsonaplate is Elise’s site. They both write beautifully and I am very proud of how they write, why they write and what they write.

  9. Wow,

    How wonderfully written. It wasn’t until this last Friday, one week ago, when I was in the ER, Tom realized just how painful have Fybromyalsia really is. I have had Fybro for about 6-7 years, well diagnosed 6-7 years ago, but he never ackknowledged it as an ailment until that night in ER. Yes, I had many other illnesses and was severley dehydrated, but it was the pain and screamimg every time someone touched me that hit home with him. My daughter would gently tell them I had fybro and that shewould move me as she knows where my trigger points are. Fybro is a silient sickness. Those that hug you don’t know you are in so much pain by their love. That pat on the shoulder when yu say smething funny, is worse than flling down stairs. People just know . They just don’t know. The feeling of being beaten from head to toe with a baseball bat but only having just gotten out of bed after a nightrest. You cant help but think Why me? But you don’t have time to think that. You are too busy raising a family, raising a husband (men are children) taking care of animals then takeing care of you at the end. Energy? What energy? I know how you feel sweetheart!!!
    That fact that you do not dwell on it makes you the wonderful person that you are. It makes you strong and it makes you tough. It enables YOU to help others. You helped ME today to feel stronger. I have been so weak for over a month with sicknss and fybro flareups every other day. This really lifted my spirts. I thank you. I knoe my husband, MR. Haggard, sure has done a complete turnaround as far as my fybro goes. He used to think I was laaazy I didnt want to bend over or end my spine in any way. (I lay on my stomache alot of the time) and now he goes out of his way to pick something up off the floor if I drop i so I don’t have to bend myself. I have been with this man 26 years and he saw mefull of energy and wild like the wind. He saw it drop almost overnight 7 years ago, but it took my first visit to ER for him to acknowledge it and understand it.

    It’s articles like this that will make people feel that they are not alone. They are in a unique family, of people they may never meet, but know so well. We are not alone.

    You keep up the fight and you keep that huge smile on your face. You will overcome and those days that bring you down as you know they are not permanant. They will not last forever. Enjoy the good days and try to enjoy the “punishment” days when you know you just had too much fun the day before. (but aren’t those days so worth the bad one after?)

    Stand strong sweetheart, you have everything you need in life to be succeesful and brilliant.
    Run with it!!!!!!! You have all my love and again thanks for making ME feel recognized today, I really needed the pick me up. KISS KISS and PUG HUGS.

    SLIP YOUR dAD A PUG HUG AND KISS, HE LOVES THEM!!!!!!

    All my love,

    Kelly Haggard

  10. Paul says:

    Wow Kelly – wonderfully written and a terrific insight into your trials and tribulations. I had no idea that Fybromyalsiawas so awful and that you had it so bad. I think you are even more amazing doing everything you have done since you came here – family, husband, life, study , work!!!! I am glad Elise’s thoughts gave you something and I have no doubt that you have recipricated the gift to her in telling your story – thank you.

    I wasnt so sure what you meant when you said Tom thought you were lazy because you wouldnt bend over……..?? and as for men being children – ha how offensive I am going to tell my mommy on you! ;)

    You and Elise have that positive strength and I am so proud of you both!

  11. Evelyn says:

    I just now got to read her post and as I read it, the only thing I thought: “wow she is so strong! This is fantastic!!!” and when she wrote that “CFS is not who I am” but merely a part of her life that has shaped her, this made me pause and reflect on why I allow certain things in my life to dominate me and in a way become me when they clearly shouldn’t or at least don’t need to and shouldn’t pull me down. Lots of things to ponder … but first, I’m going to the conference dance :)

  12. Kelly Haggard says:

    Paul,

    Bending over, (for ANY) reason has always been extreamly painful for me, but I deal with it. Bending my spine is painful, but I deal with it. If I drop something on the floor one of my kids would bend over and get it automatically cause it takes me a bit of time to get it. I do a ballet bend while keeping my back straight and my leg extended so I take up a bit of room when I bend over. Now if I have some Vicotin in my I can just bend over and it’s tolierable. I can still bend without pain killers but it just hurts. Big deal, If I have to I have too, no biggy. BUT…. I hate to load or unload the dishwasher as the bottom part is too low. too many bends up and too many bends down so i dont use the dishwasher so Tom always says I’m lazy to bend. Thats what I meant. He doesn’t say that anymore as he knows now the level of pain I may be feeling. I think my ER visit did our relaqtionship alot of good. As for men being children….. hahahaha I can;t help it! I think the tolerance of pain are far more wearker in men, SORRY! I think men are more whiney when sick SORRY! And lets face it, I have said it before, a great man ALMOST ALWAYS has an even greater woman behind them. I have said that about Andrea for years! I know it’s true for Tom and I. But then he too, makes me better at times so it’s a trade off, just as I am sure you lift Andrea up for all to see as well.

    My exoeriences woth Fybromyalsia do not hold me back very often and under NO circumstances should I be looked at as a victim. that would upset me. I cope with what I have and I am blessed I don’t have it worse. Plus, lets be honest, If I lost 100 pounds my body would take such a beating so lets put blame where it belongs…… with me.

    Paul, you have told me before I am good writer and I love that. It makes me feel great, my professors tell me the same. I can’t help but wonder if my writing would be any good if I wrote about things that did not pertain to me? I think my writing appeals to some because I write from my heart and my soul. I am just sharing, not creating visions. I am so greatful for this outlet with all my PC friends that I have shared my soul with all these years. You are all family, and well. Paul, you are BIG BROTHER! I love you and your family, and the family here, in ways you guys will never understand. I feel I have family oversees and across America! Well, lets not get “stalker” and all that no need to worry!!!!! At any rate, I feel I am a better person because all of the lovey people I call family here at the corner.

    Paul, you will never truely understand how strong Elise is in dealing with her ailments, no one truely can unless they themsleves have gone through it themselves. All you can do is love her and tel her how proud you are of her every day that is rough and every day that is great. It helps just to have someone show how much we mean to them, and it makes alot of the discomfort go away, and it makes it much more tolerant. People that suffer, feel guilty they are bringing down, or causing incomvienence to those around us. That is part of the guilt. I never want to bother anyone with my problems. I am sure Elise is the same. Just be there for her when SHE NEEDS YOU, and she will be stronger and stronger as the years go by.
    You raised a great, strong woman, but then your wife is a great, strong woman so she knew how to raise em right!! Men need to step back and be in awe of the strength of the woman they live with. they could learn alot about companssion. But somthing tells me you’re pretty compassionate already! Alright I’m done. No more winded paragraphes.

    Lots of love to ALL that grace The Corner.
    Kelly Haggard

  13. Kelly Haggard says:

    Evelyn, here you are in Kalamazoo and I forgot to call you yesterday! God I am so sorry!!! Why didnt you call me???? I tried to do a bit of erronds yesterday but only lasted a couple hours out of the house. I even when to Barnes and Noble. why didn’t I think of you !!!!!! Now you are on your way home and I am an idiot and have to wait till next year again to see you. maybe I can take a trip up to your house this summer?

    Mom and I are doing alterations on Paiges prom dress right now and that is sucking all my energy right now. ahhhhhh, I am so sorry.

    I love you !!!!
    Kelly

  14. Paul says:

    Kelly if you put your posts together in this thread you would have made the longest post list of all time!!! Oh well have to stay runner up to Evelyn for now….

    I do ask god to make Elise better but she seems to be ignoring me!! I will keep asking and hope that eventually and soon she answers my prayers and heals Elise totally.

  15. Evelyn says:

    Kelly, because I was super busy at this conference (as odd as this may seem to most people, I love this part of my job and it is actual work!, but exhausting, very long days 9 am to midnight non stop) along with not feeling well (allergies, splitting head aches, sinus infection coming back, lack of sleep…) and on Saturday, since you said you may be at a memorial service, I didn’t want to disturb that and call at a bad moment and was hoping you’d call me when you the time was good! Too bad we missed getting together :(

    Paul, don’t tempt her and esp. not me :) There is always that 50 page single spaced academic publication I could post …. (or maybe not?) or book one that’s being reviewed by an academic press right now and book two that I’m starting on researching and writing these days.

    I do hope that Elise finds relief and complete healing and I will add this to my prayers as well. The more the merrier or perhaps the more will make it better known to god. and for you too, Kelly!

  16. Liz says:

    Word count: Paul with Good Friday Rambling 1423 words
    Kelly with 2 posts combined: 1466 words
    Evelyn: can’t find your longest post; what month and year was it?

  17. Evelyn says:

    I have no idea, it’s several years ago, but it was long! Don’t egg me on to shoot for more than 1466 words in a single post. I so can do it :D
    Current highly likely topic for rambling: the stupidity, arrogance and disrespect of a “graduating” senior who blew off his senior thesis, failed the first draft, didn’t take the oral exam seriously and thus also failed it and could have salvaged the situation by taking the final revised version of his BA thesis seriously, he submitted nothing. He wanted this thesis to be his legacy! It will be just not the one he wanted it to be. How can you be so stupid to sabotage your entire education like that? He was such a great student for most of his 4 years here, but arrogance, an over inflated sense of self and pride did him in in the end. It really is quite sad and I have no idea how to even begin to describe my disappointment. And I wonder how long it will take him before he is coming screaming, angry, threatening and bullying to my and my colleague’s office and the blackmailing that he will attempt to do.

  18. Elise says:

    Hi all!
    I just wanted to thank you all for your beautiful words of support, encouragement and love in regards to my post! I really didn’t expect to get such wonderful feedback from people all over the world. Thank you for sharing your personal stories because I know that it isn’t always easy to explain chronic illness- or any illness for that matter!
    I don’t know what else to say but thank you so so much for giving me a bit of a boost when I was feeling low and that I wish all of you health and happiness. :)

    Elise :)
    ps. Kelly: I don’t think dad would be impressed if I somehow managed to bring a pug home for him to get kisses from!! Erin on the other hand- she would be very happy!!

  19. Becky says:

    Hi Paul,
    it’s ok that you made a mistake. I forgive you. Thanks for telling me about you daughters web sites. I will be glad to explore them and have some good chats with both your girls.

    Have you been watching the latest series of DWTS (Australian version) lately? Do you like the new judge?
    I’m a little bit unsure about him. He gives good comments, but I think that I like Mark wilson better. You are also great and it’s sad that your not on there any more.

    Todd McKenney has become so nice. It’s weired, he used to be so mean. May be now that he has a kid of his own that it;s softened him up. Kids tend to do that.

    Dance is such a powerful thing and I just love ballroom. It’s so spunky and I just love the way that so many guys seem to enjoy doing knee slides when they dance. May they’ve been watching you in Strictly ballroom when you did the slide.

    I’ve watch that scene so many times and I’ve come to love the Paso Doble. It’s such a powerful dance and it inspires me.

    You are an inspiring person and I hope that you keep on dancing through life and you feel free and happy.

    Keep smiling
    Becky.

  20. Elise, I worked on your Dad for like a YEAR to get him to love a pug. I gave Erin all this amunition to use on y our Dad. I even sent a photo of Rocky (older male pug) whit a note in front of him to Erin thinking she would post a photo on the family computer thereby forcing your Dad into guilt and switching to the pug team. Nothing worked. You got a “normal” looking dog. Who is quite beautiful not that we have seen a recent photo (hint hint) To no avail, oh well, the ship has sailed and no pugs were on it!

    It is a beautiful thing when we are able to lift each other up on a bad day. Cronic pain knows no boundries anit doesn’t discriminate age, either. I love that you and can comfort one another but yet you are young and beautiful and I’m old, 43 and beautiful. :) Anytime you eant to vent, sweetie, you have my Facebook to message me and my email is KellyHaggard9@yahoo.com. Just between us girls. US TOUGH GIRLS. Yo stay strong and know that while not every day will be great, there will be GREAT DAYS!!!!! They are what you make of them. Why not reach out to those in your age bracket and write a book, or even a childrens story about your experiences and bank some savings for those times work is impossible. You are a thoughtful and insightful writer. I would love to read more of your work. You are beautiful, couragious, and a tought headstrong woman. MAKE THE BEST OF IT!!! Fly like I know you can. :) Kiss from oversees. Pug kisses and snorts.

    Paul, are you feeling jealous yet??????????????? Sorry I didnt forget you , don’t go running for the Ale just yet. I certainly could break Evelyns record but out of respect to her, I cuceed to her. (spelled wrong I know). I certainly don’t want to encourage her to try harder !!! Love ya EV!!!!

    Speaking of publications????? When is this BEER COOKBOOK gonna be out? I expect a signed poster and book just as before. Nothing less, Nothing more. I want what I want. I just wanna see the book! When will it be ready for a peek?

    Well its late here and this is the latest Ive been up without continuall napping in a month. Docto put me on Predizone (steroid) today, Im get this bug dead if I have to take a million perscriptions.

    Love to all,

    Kelly

  21. Evelyn says:

    My deepest appreciation, Kelly, for not taking my crown away from me! ;-)

  22. Ev,

    I wouldn’t dream of it. You would only purposly break my record and it would take me 2 days to read your new record breaking toast and quite frankly since being sick, I don’t think I have the stamina. :)Just kidding. LOVE YA GIRL

    Kelly

  23. *post, not toast. I am quite sure you have probobly had some reacord breaking toasts, as well.

  24. Evelyn says:

    Kelly, toasts as in the slices of bread one eats or the speeches in honor of a special person? Re. the latter I have not given many and there I really do try to be witty, short and to the point (Yes, I can actually do that! :) ). I’ll leave the record-breaking toasts to you and I keep the record breaking post. How’s that for a fair compromise and sharing?
    Hope you feel better soon! this has dragged on way too long!
    Love you right back! <3 Evelyn

  25. Becky says:

    Hi Paul,
    I’m just wondering if you can help me with something. Is there an American version of Strictly ballroom?
    Did you hear about the guy who play Barry Fife in Strictly ballroom? Poor guy. I didn’t really like his character in that movie, but he played it really well.

    There is another thing, do you have a recipe for cheese sauce. I tried to find one a few weeks ago, but failed. Could you help?

    For all of you wonderful people who love Paul like I do I’m just wondering if any of you can tell me what Las Vagas is like. I’ve been wanting to visit for years but have been unsure of what to expect. Could you guys help?

    Keep smiling
    Becky.

  26. Melody says:

    I love that picture with Paul and the oranges! Congrats, Paul, on your on going success with MM!

    BEcky, I also read this morning that the actor that played Barry Fife has passed on. The photo they used in our papers didn’t really look like him (or should I say “Barry”)–after reading part of the obit and seeing he was in SB, I looked again. It later read that he was “a meddling dance judge in SB”. Here are the obits from Chicago’s newspapers:

    http://legacy.suntimes.com/obituaries/chicagosuntimes/obituary.aspx?n=bill-hunter&pid=151182051

    http://www.legacy.com/obituaries/chicagotribune/obituary.aspx?n=bill-hunter&pid=151182051

  27. Liz says:

    Thanks Melody for the Bill Hunter article. No new steps Barry Fife. I saw him in Priscilla. They say the lead was a role reserved for Paul but I think Paul would not be a good fit as the drag queen character had to look grotesque and dance semi-badly so Paul would not have been a good fit for the role.

    Here’s more Paul news; hard to keep up:

    http://www.gladstoneobserver.com.au/story/2011/05/23/spotlight-to-focus-on-local-wine-and-food/

  28. Melody says:

    Liz–thankfully you are keeping up and we can see these great postings! Another great photo of Paul!

    I don’t know how Paul would have felt about that role, but you’d be surprised how well a great dancer can spoof “bad” dancing! LOL

  29. Becky says:

    Thanks Melody for the links. I’ll have a look at them sometime. I have been so busy studying that I only a get a few moments to jump on this site and chat with you guys.

    By the way, I ‘m studying A Bachelor of Visual Arts and Design at Adelaide college of the arts. It’s in the southern part of Australia for all of you who don’t life here.

    I often wonder how many of the actors who stared in SB are still alive today. We all know that Pauls still here. Todd McKenny who played Nathan Starky, he’s still here. He has a daughter now. Sonia Kruger who played Tina Sparkle is still here. She’s got a partner.

    Todd is a judge on the Australian version of DWTS and Sonia is co host.
    I do hope that they make a second version of the movie. It would be great to see how things may have turned out.

    May Barry Fifie R.I.P and may we remember him as the bad tempered character that he was.

    Keep smiling
    Becky.

  30. maureen driscoll says:

    Becky–I wanted to share my experience with you—in hopes that it can help you…I was very close to a diagnosis of CFS/fibromaylagia, etc.–actually no one knew what was wrong with me! I was quickly becoming crippled throughout my body, but through prayer, Jesus led me to information about yeast infection. It seems that one’s body can become infected with yeast. There is a cure, but it takes several months of probiotics–little bugs that destroy the yeast. You must adhere to a strict diet of no sugar, no alcohol, no white bread, and no fruit high in sugar for a LONG TIME–and then you will regain use of your body! Here is the address of the people who will supply the “bugs.” The product is called “ThreeLac” and it comes from Japan. It will entirely kill the yeast if you follow the regimen. There phone number is 1-800-305 5710. I had been in physical therapy because my arms had ceased to work, but after the ThreeLac, I visited them and they didn’t recognize me!

    I will keep you in my thoughts and prayers.

    MDriscoll

  31. maureen driscoll says:

    Becky–I meant “their” phone number! I really don’t like grammatical erros–it is the teacher in me!

  32. maureen driscoll says:

    “errors!” Yikes, it is too late here, I am going to bed!

  33. Becky says:

    Thanks Maureen. I know what you ment. It’s so sad that you came close to being crippled. Thank God you had Jesus to help you through those tough times. He really is a great person.

    Don’t worry about making erros. I think we all tend to make a few mistakes in our life time.
    Thank you fro the thoughts and prayers. I will keep you in my thoughts and prayers too.

    You are very lucky that there is a cure for your illness. There isn’t one for mine and so I have to live with my syndrome for the rest of my life.

    Stay strong and keep on fighting.
    Keep smiling
    Becky.

  34. Bravo Girl! Thank you for sharing. So many suffer from this illness and so few know about it.

    I am in the US and have a boyfriend in Norway who suffers from ME/CFS. It has kept us apart for a decade due to his inability to work now and dependency on the socialist system there, as well as the fact that I am here with my children. It’s a rather long sad story that I will spare you. I just wanted to share some things that have helped him cope.

    Have a sleep analysis done. Most don’t realize they don’t sleep well and a CPAP machine does help increase daily oxygen which helps improve sleep which helps get rid of some of the pain at least.

    Eating lots of garlic and putting chili pepper spice in foods helps. (Tasty in hot cocoa – adds a little zing)

    Eliminate or at least reduce sugar and bread intake.

    Avoid alcohol, especially beer since loaded with yeast, which may be heavily involved at the source of the problem.

    Maybe avoid cheese (our jury is still out on that)

    Oil pulling with organic garlic oil in the mix. Before brushing your teeth in the morning, put 1 Tbsp or so of olive oil in your mouth and pull it between your teeth while you wash your face, take a shower, or other bathroom related things for 5-10 minutes. Sounds nuts, I know, but it helps. If nothing else it’s great for the skin and helps maintain hydration. – some folks use coconut oil (will melt in the mouth), or sunflower oil, or Sesame Oil.

    Don’t give up. There are a lot of us working hard out here to find more about the source of the problem to help those we love. I’m researching my arse off over here, mostly through Harvard University in Boston, but everywhere and anywhere else as well. I refuse to give up.

    If I get any more ideas or something worthwhile in my research, I’ll let you know. Organic solutions are better over meds much of the time, so you won’t hear me recommending pills unless I see something highly compelling to justify it.

    Speaking of which, be extremely careful if meds for sleep and pain are prescribed. Trust your intuition. The meds are the most dangerous thing about having this illness. Too many docs are educated by the pharmaceutical companies rather than research. So again, listen to your intuition.

    You are never a burden. You are loved. Remember, if the situation were reversed between you and any other family member, you would not feel any burden at all, would you. That’s the power of love.

    All the best wishes,

    Kirsten

  35. geri says:

    I just read the blog you post on CFs and I think your daughter expllained the effects of CFS great and I will recommend my friends and family to read this article so maybe they will understand much better and now those who haVE CFS go through everyday. have some family and friends with CFS but they also dont let it control their lives, again thank you for helping us all understand CFS

  36. Geoff says:

    Hi Paul

    I have only just read your daughter’s entry on ME/CFS. I am a researcher into ME/CFS. I also have ME/CFS.

    Have you ever thought of becoming a parton for the ME/CFS Society? You have a very brave, inspirational young lady there and what she is experiencing with no doubt teach you a great deal about what it is to face adversity with dignity. What’s more is she is voicing the reality of ME/CFS and I applaud you for allowing her that forum to do so.

    I have a 3 year old daughter and I don’t ever want her to endure the things that I face on a daily basis. I can only imagine how heart-breaking and frustratingly helpless you would feel for her when she is having a bad relapse.

    If your daughter would like to contact me, I’d love to chat to her about my research (you have my Email).

    Best Wishes

    Geoff

  37. Mel says:

    This just popped up for me doing a search on Fibromyalgia awareness day coming up and I was quite chuffed. a) because I’m a bit of a foodie and was a tad excited when I saw where I ended up and b) because I have fibromyalgia and can completely relate to a lot of what has been mentioned here.

    I have had the illness for about 16 years. I was diagnosed when I was about 22 so it’s been with me for a fair amount of what should have been a vibrant, active, successful life. On reflection I have had a vibrant, active and successful life but this thing I carry always makes me feel as though I am falling short of my full potential. I have had to make a lot of decisions I wouldn’t normally have made as a result of being unwell and as your daughter said, probably learned a lot more than most in a much shorter time due to having to adapt to the changes in life the illness brings. It has it’s positives and it’s negatives most definitely. I still yearn inside my heart for a day in my life where I might be pain free and free to plan and jump and run and skip through the day like a bird quivering with the energy of days sitting in the rain.

    In reality I feel more like a sloth, tentatively making it’s way from one tree to another at minimal speed. haha.

    We need more research into this condition as it is unseen and yet so utterly debilitating.

    I hope your daughter has many many good days and few bad ones. :)

    Cheers

    Mel

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