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Chronic Fatigue Syndrome
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Posted 7/18/2013 8:35 PM (GMT 0)
i am oh so sorry to hear of young people becoming so ill. my trigger was late stage lyme disease. the antibiotics triggered epstien barr[usually dormant in people] at age 35 i was bedridden for 2 years[ i was an ICU R>N>} and housebound another 5. i have never been able to regain much physical health. i have run the whole parade, fibrimyalgia causes heart problems, ibs, inner ear disturbance, i have copd, never smoked, all sorts of auto immune disorders.used all my money on manhattan docs for I.V> drips of high dose vitc, chelation, vit b shots,herbs, you name it. i have lost all my friends and family to being so chronically ill so long. the most i have truly gained is a spiritual life i may not have had i not become ill. i lived thru ;;sandy'' last year ,lost evrything i had but my service dog and wound up in viriginia beach, still mostly housebound. i really limit my stress, even good stress, am gratefull i have no real physical pain at this time, am sleeping o.k. i still'crash'' when i over do, which is impossible to predict.i am 57 now. trying to find an m.d. who simply believes me and is willing to actually be a doctor is a challenge but i will keep trying. i don't feel it is fair to ask anyone to love me as i then involve them in my chronic ilness. i do think if i ''crash'' badly for a long period i may choose to go home. i am not depressed,angry or blaming. i always was pro active in helping my patients make their own informed choices.
i do wish there was something more i could do to help the people just becoming sick with lymes, cfids, fibro etc. unfortunately medicine has not learned much in 25 years. it breaks my heart children are becomin sick with cfids.will say prayers for all. please keep me in yours. thanks
Posted 7/18/2013 9:47 PM (GMT 0)
Hi 'eye', wow. I really hope things change soon in terms of how science views these conditions so that I don't have to go through all of that for so long. Of course, I've already put up with it for 2.5 years so far since that fateful day when I thought I was getting the flu but I was actually getting some unknown virus that triggered FMS/CFS. Gosh, I need prayer, thanks. I'm trying so hard to do part-time uni and it's just so difficult with poor health. I will pray for you too.
Posted 7/19/2013 7:20 AM (GMT 0)
'eye', welcome to the forum, I am sorry you have had to deal with this illness & others for so long. I have had Fibro & CFS since 2004, that is when I remember getting so sick. I did not have anything like Lyme or EBV but think it was due to the stress that we, as a family, were under. My grandson is a heart patient & he had to undergo 6 surgeries & we almost lost him many times. This took about 2 years under this stress & I became ill & have not recovered. It is interesting how people come down with this, I wish they could at least figure out how we get it. Lol! My grandson is doing well & is pretty healthy.

I live a very quiet life with my daughter, Misty & her two children. The rest of my friends & family have moved on, occasionally they will show up again to see if I am now well. I do have one good friend who loves me dispite my illness & we touch base every so often & catch up, not like we used to but as I can. This was so sad at first & I had to mourn my old life but I have found new ways to deal with & live within my limitations.

I know what you mean about the young ones who are getting these illnesses, I have always felt blessed that I got them when I was older, 52. Even that seems young now, lol. But I hope they find a cure in the research they are doing so thsoe who are young don't have to live their whole lives so ill. That & my faith are what keeps me going.

It is nice to meet you, I hope you come back & let us know how you are doing. I try to support the people who come here because I know how much that support is needed. If I am really sick, it may take me a few days to get back to post but this is one of the first places I check when I have the energy. Take care of yourself. Hugs, Denise
Posted 7/19/2013 4:02 PM (GMT 0)
hello,denise thanks for such a nice reply.yes, i agree stress plays a key role in when people become ill with cfids. many different ways. i am glad you have your daughter and your grandson is doing well.i raised my stepdaughter but my becoming so ill was too much on so many in the life i had before becoming ill. only one friend actually told me she was leaving our friendship'' i don't want to be sad anymore, you are half the person you were''.after hearing this, i am a person who comes from love, i told her i understood. i ''let'' alot of people go as i do not wish to bring grief to anyone. same thing with my husband. he did know i was sicjk when we met and i did my best to be sure he understtod, but after my father died[ we were very close] i relapsed horricaly for 5 years and it proved too much for my ex-husbnd. i wanted him to go live in peace with his kids and find joy again.
i am alone two years now. in a new place, doing really well for me. no real physical pain, sleeping o.k. on very few meds. it is summer here and very hot. i never do well in the heat so i am stuck inside for weeks on end. my service dog and his cat bring me such joy. i am 57, i agree still young. i am at a loss as to how to proceed now. i don't want to be alone, yet asking someone to love me seems unfair. i got my heart broken with my ex=husband even though i can understand . even to make new friends knowing if i make plans i may need to cancel and they become frustrated. maybe i am still recovering from the divorce. i truly wish i could find a way to be of some real help to others. i miss nursing so much. i did go to the local lymes meeting and so many young people getting sick was diheartening.i offered what i could. again i very much appreciate your taking the trouble to write. will keep you in my prayers.stay safe and well eye
Posted 7/20/2013 5:32 PM (GMT 0)
jasmine, my dear i am so sorry to hear how sick you are. the first thing that comes to mind for me, especially having been a critical care nurse for 21 years, is how young you are. this is on your side for healing. i worked with some excellent docs in my day, some wonderfull minds. so often when a young person[below 30] would come in with serious issues, wether it be a car accident, organ tranplant etc. we all knew youth was on theri side they would often[ their bodies] do what we called 'bounce''. it may take time but i encourage you to go afer a full return of your health. with such advances in alternative care [ and i know it is costly] developing an intution with the divine and yourself i believe you will be guided. everything IS porposefull. everything. i will keep you in my prayers. stay in touch eye
Posted 7/20/2013 10:36 PM (GMT 0)
Thank you so much for offering me a glimpse of hope! I am slowly, one by one, trying different non-medicine remedies (e.g. diet modifications, supplements, homeopathy, trigger point therapy, neuromuscular techniques, CBT, meditation and more) to trial each one individually and keep those that help me. Yes, money is an issue - i already live below the poverty line but luckily I am very good at budgeting and pinching my pennies so that i can spend money on healthcare, though not as much as I'd like to spend. I am better than I used to be, but every day is a struggle. I say to myself every day, "I am getting a little better, every day."
Posted 7/21/2013 12:52 AM (GMT 0)
eye, I know what you mean, I have "let" a lot of people go too. When we become ill, our whole lives change & then we are left to deal with it while being so sick & so tired & so depressed. My husband had a hard time dealing with it, he was very supportive but he was frustrated, living with someone who is chronically ill is hard for others & I know this & it is so sad. My husband died 3 & 1/2 years ago of a heart attack & that threw me into a major downward spiral, I was so sick & fatigued, I lived in bed. I, also, have always dealt with depression & I went into a very black place for a long time. It is only recently that I have felt like I have come through the major part of my mourning & am now feeling better. I have no doubt you are going through the same, mourning is mourning & no matter what, we have to go through it. I am so sorry your husband left you, it feels like such an abandonment but I hope you can get on with your life & maybe meet someone who "can" deal with it. I believe there are people who can, I think after my husband went through his mourning over our old lives, he would have stuck with me & would have been happy. It is only with my faith that I have made it to the acceptance that I have found. Nothing gets better by dwelling on the bad but look at the good we still have.

I miss my work so much, I loved my job working in a pharmacy. I hung on as long as I could but just couldn't do it anymore. I am much better not having to try to get up & work 8 to 10 hours a day. I am on Social Security disability, quite a blessing to get it. I would love to be able to do some kind of work but I have to be happy with just helping to take care of my grandchildren, a job I love.

It is wonderful that you are feeling so well physically. Don't overdo it though, keep on pacing yourself. I am my own worst enemy when it comes to that, I feel better so I use more energy then I have & then deal with it for days, lol. It is hard to not do all I want when I seem to be feeling so good, sad thing is, so good for me is sick for someone else. I have a tendency to forget that.

Many gentle hugs, Denise
Posted 7/21/2013 2:15 AM (GMT 0)
thanks denise ffor your thoughtfull response. amazing how much conecting with others in the same situation helps. i often forgget this being isolated so long. i do much better in every way when i am in touch with others who have lived through years of chronic illnes, like me.

please accept my sincere apologies for the loss of your husband. three years is not very long, loss is just so difficult ...and when one is so sensitive to stress, oh my god. my father passed, of old age in my home only three months before i married. i was so afraid to grieve that i ended up in major relapse physically for the next 5 years. my marriage didn't make it. it is only now i find i can cry to my dad, read his letters and allow some grief. i am blessed i do not have depression as a secondary isssue. have you found the meds helpfull?

what kind of work did you do in pharmacy? my first job at 16 was in rite aid in the pharmacy. sometimes i let myself day dream i may actually return to nursing some day. on the other side of the stretcher! i have been a patient 21 years to long. last year i went in for pneumonia and a voluteer was helping me. as i watched her i realized the nurses were asking her things etc. i said to her ''what did you do?"" retire?? she said yep, went home for 2 weeks and came right back as a volunter..she was 71, er nurse....

i am blessed with great faith also, in fact i think it is the best thing to come from all this. i had been devoping my faith 10 years before i got sick and then when it hit i realized it was time to walk my talk. my faith is of great comfort..truly.
i often think i would be so good at foster care, if i have only 6 months of doing well i will go to the classes and see if i can't be of some help. i have an empty bedroom and can always hire people to cook and clean. i have a great heart and wisdom and know my god will use me for service. we shall see. your grandchildren are very blessed[ as is your daughter] to have you so involved in their lives. i don't see anything wrong with kids being around life's challenges. i think it grows good people. too many kids have so little real time with adults in their lives. love them up for me! how old are they? and your daughter? do you see much of your oter children?

i do think i will meet somone who can deal with me being the way i need to live. i want to. i do think in maybe another 6 motnhs or a year. the manner in which my ex chose to leave did hurt my trust. it is taking time for me to heal. but i do hope to make one more run at love!


i did 10 minutes on the treadmill today. i had to stop as i crashed only two weeks ago. it is such a fine line we walk. i know exercise is necessary and i sleep and feel better when i can do it but when i hit the line.i pay....it is during these times 'crashing'' i think about pushing the re-set button on life. but they pass. i have a wonderfull service dog, a german shepherd. he is 9. he has a cat....yes, his cat, he is an alpha dog. he is such joy for me. he is starting to show some signs of aging and i pray i will have him 4-5more years. after the last two years with my divorce and then loosing everything i had in''sandy'' i need a break! have you any pets my dear?
i shall say prayers for you and yours . i am gratfull we have connected. stay safe and well eye
Posted 7/23/2013 2:42 AM (GMT 0)
Hi eye, I am trying to stay cool it has been so warm out for so long. I am waiting for it to rain so my yard will not die on me. I have been watering it but have to watch how much because of my limited income. I do like the summer better then the winters. I live in Montana & we can get a lot of snow. So, I try not to complain.

My daughter is Misty, & her to children are Deylan, 15 & Emily, 11. I do enjoy living with them. After my husband died it was just too quiet here so since I have a 4 bedroom house, they moved in. Took some adjusting but we all live together peacefully. I would have had a hard time living on my own due to my depression but this has been a blessing for me. We all have illnesses, Deylan: heart patient, Emily: epilepsy & food allergies (milk & wheat), Misty: Mixed Connective Tissue Disease (Lupus, Sclerederma, myocytis & RA) & Fibro & then me. We spend a lot of time at Dr offices.

The other member of our family is Muffin, she is a Pekenese & we all love her. She started out as my dog but since we all are so sick & Emily wanted a dog really bad, I gave her half ownership of Muffin. We tried getting a second dog but it took too much out of us to care for another dog. I used to have a german shepherd, Chelsea, she was a wonderful dog, she died of old age 10 years ago. They are good dogs & really smart. Too much for me now since I got sick.

I have found that everything I do is dependent on how much energy I have to expend. Sometimes, I just have to push myself anyway to keep up with things. It is hard to judge somedays how much I can use & then the next day I am in bed.

Hope you are having a good day, nice talking to you, hugs, Denise
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