How Do You Do It When There's No One To Help?

Discussion in 'Fibromyalgia Main Forum' started by Marta608, May 28, 2006.

  1. Marta608

    Marta608 Member

    After responding to several posts and ending up talking about myself, I decided I need a post of my own today.

    Last month I (sloooooowly) tapered off a small dose of Celexa, such a small dose neither my doctor nor I thought it would matter. Well, let me tell you, it mattered. The fatigue was overwhelming, I never knew what depression was like before that, I had a lot of pain, I wasn't sleeping and I felt crazy on top of it all.

    To make it all worse, the doctor's nurse, obviously a non-believer in CFS, insisted I wait almost a month for "a longer" appointment in which to discuss meds, etc. and I was too sick to go anywhere else. She suggested the ER. The "brain frying" possibilities of SSRIs that Dr. Cheney discusses is one reason I wanted to stop taking one and I didn't want to go back on it. I thought, as happend with Trazadone once, I would gradually feel better as my body adjusted to not having the drug.

    That happened to a point, about 3% improvement out of 10. That is, I got so I could drive and remember where I'd gone. When I finally saw the doctor, he said I was depressed and that as long as such a small dose helped me so much (I was almost in remission), I should resume it. This guy, supposedly the best in town and affiliated with the hospital I prefer, just doesn't get CFS and I waited for eight years for him to take a few new patients!

    I reluctantly began taking a small bit of Celexa again but now I have a lot of pain, an incredible amount of post-exertional fatigue (when I can exert at all), depression, anxiety and pain - all much worse than ever before. I don't understand how the lack of 2.5 mgs. of something could impact me so much.

    As many of us who've lost friends gradually over the years, I really have no one I'm close enough to to ask for help. My local son and DIL are busy and oblivious, my other son and family live far from me. I'm finally admitting I need help. Now where do I get it?

    There must be others here like me. How do you cope? How do you manage to care for yourself and your home (and maybe one very old, very fussy cat) with no help at all? Right now I'm at the take-a-shower OR fix-food stage. I need to go to the grocery store and can't manage that tomorrow because I also must get to the eye doctor for a problem that just developed.

    I'm trying to keep my cool but I'm losing it fast.

    Please help.

    PS. What do you think of having a medical "team"? The MD I go to now is good at the usual stuff and, as I said, he's affiliated with my hospital of choice. He even supervises the residents. Another doctor, a D.O. and the doc I saw when I first got sick, is nearing retirement but loves his patients, will read articles and is a good researcher. Is it cricket to go to two doctors in the same town when neither of them is a specialist, per se?

    Marta

    [This Message was Edited on 05/29/2006]
  2. shootingstar

    shootingstar New Member

    I am in a very similar situation feeling overwhelmed by my health, home and unfortunate circumstances of a grown daughter. I'm doing what I can but not coping well. I have no medical insurance, limited income and am trying to preserve what assets I have at this time -- in my early 60's.

    I have yet to find a doctor who listened to what I was saying. I've finally decided I'll do whatever I can through minimal supplements. I currently take magnesium and calcium because those are two supplements that seem to be widely recommended and I think the combination helps to some extent with relaxation/sleep. No cure by any means. I just started taking chromium to help with blood sugar balance/sugar craving. I have successfully taken ginkgo biloba in the past to help with brain fog. I'm scheduled for dental surgery and am currently not taking it because of blood thinning properties -- will resume later. I take over the counter tylenol/advil as needed. So far that has made pain manageable -- does not eliminate it. I'm considering selenium/probiotics to help with detoxification.

    Several people here directed me to a site called Flylady.Net to help with organizing househod maintenance. It's been a godsend. I can't do everything they suggest you do and don't try to, but I try to follow that guideline and it's helped get my home looking much better which in turn has made me feel better about myself.

    I try to eat really healthy and keep things simple -- I live alone and this has been easier said than done.

    I'm having to hire some things done to the exterior of my home. I hate spending the money, but if I don't I will be in a worse situation later. Dry rot problems in a couple of areas that need to be fixed, painting. The painting was something I would have done myself at one time. Not now.

    I rely on God's help. I don't attend Church at this time. If you do your Church may have a volunteer group to help.

    It has been very difficult for me to talk about this with other people. I have told them I don't feel well, but I don't understand this inconsistent, unpredictable disease that has invaded my life, sapped me of action and strength. The symptoms sound so dumb when I attempt to explain, and it sounds, even to myself, as if I'm trying to make excuses for failure to accomplish what I would like to. That is not the case. The energy is non-existence and the pains that change and mutate are always there. It's not an excuse, it is very much reality.

    I know your reluctance to approach your son and daughter-in-law, but that is something I think might help. They might not know you need help. I was a live-in caregiver for my Dad the last year and a half of his life. It was a time I would not give up for anything. It gave me a chance to know him as an adult, and whatever I may have done to help him has come back to me hundred-fold in the memories and rewards of knowing my remarkable father in a new way. It's hard for me to ask for help too, but it may be one of those things that look horrible in anticipation but bring blessings to all in the end.

    I try to pace myself.

    Sometimes changing antidepressants can help. Some people seem to build up a tolerance to one over time.

    It's not easy to reach out. I hope your situation improves.
  3. suzette1954

    suzette1954 New Member

    the hardest thing about this disease is the feeling of being alone. Im not alone so I cant tell you how you are feeling.

    1. I think you need to find a new dr. Sometimes, even a caring PCdr. is better than an uncaring specialist.

    2. Im home alone all day and I do not get much done. My FM is very severe. Somedays I can only fix sandwiches for supper for my husband and me. He puts his dirty clothes on top of the washer(in the basement)and when he has a load, I carefully go down and wash a load. He takes them out of the dryer and brings them up for me to fold or hang up.

    3. I iron sitting down. If you put your ironing board on the lowest setting ( your clothes are always wrinkled because of #2.I then sit on the sofa and iron hubbys clothes each morning.

    4. Pray alot. For months all I could pray for was everyone else. Im now seeing a psycologist for that. Pray for relief and for the joy of being able to get out of bed.

    5. Remember,you are never alone when you have us. You can vent, fuss, complain, whatever will make you feel better and one of us will always listen. We are a caring bunch and you couldnt ask for better friends. We understand.

    Suzette
  4. Marta608

    Marta608 Member

    Thank you for replying. Even having someone "listen" helps.

    I'll give more thought to advertising for a helper - and to asking my son and DIL, although they know of my circumstances, they just choose to ignore them. That sounds bitter and perhaps I am. If so, I need to work on that too. I probably wasn't the most thoughtful person when I was 35 either. Young children, hard work, a MIL who needs help (her mother, not me).... it's hard too. No one really realizes how important good health is until they lose it.

    Oh, and I'll check out the website you recommended too, shootingstar. I used to be the Queen of Efficiency but you can't be efficient when you have little energy. It's like trying to drive with no car. I don't attend church but I do pray without ceasing.

    Thanks, dncnfngrs, for continuing to ponder my problem - and for all of your compassion.

    Marta


    [This Message was Edited on 05/29/2006]
  5. Empower

    Empower New Member

    How about calling a local church?

    They can maybe post an ad in their bulletin that woman needs some assistance???

    I hear you sister....I go throught he same thing. Things are just not getting done

  6. Adl123

    Adl123 New Member

    Dear Marta,
    My heart goes out to you. I understand what you are going through.

    A couple of days ago, when I fell in the driveway, I realized that there was no way for me to get help, and no one to call. Sometmes I think I was crazy to move into the mountains, and then I remember that it was the only place I could afford to live. I feel that I should sell my house and downsize, but I don't have the srength - and there isn't anything much smaller, anyway.

    The way I get things done, is very slowly. I have cut out all groups and classes and responsibilities. I try to go to two places when I go to the Dr., and I do a little bit of housework at a time (and I mean little).Sometmes I clean an room and then close it off so it will stay clean (I have 3 pets).

    Even so, I find myself returning home with my shopping list only half completed. I have eleminated things I used to consider necessary. When I cook I make more than I need and freeze it in one cup containers, so all I have to do is microwave the single serving. I use paper plates and plastic forks and spoons, as much as I can, so that I don't have to wash as many dishes, something I do only once a day.

    I think it is legitimate to go to as many doctors as you need, as long as you dont get the same meds. from each, and they are all aware of eachother. I go to an internist- family Dr., an Acupuncturist - Cihnese Dr., as well as a Chiropractor.

    I've given up on the neurologists and the Rheumys.( There are only 2 Rheumies within 80 miles, and they work together, and are both patronizing ,ego-maniacal, and do not listen to their patients).

    I hope this helps. At least you know that you ae not alone.
    Big hugs,
    Terry
  7. vickiw

    vickiw Member

    Marta,

    Here's my two cents, based on my own recent experience. Go with the doctor who cares and is willing to do research.

    As you probably know, there is no medical specialty for CFS. At present there is no known treatment that is effective for everyone, and definitely no cure.

    I went to a doctor from April 2005 to February 2006 who is Harvard educated and has 25 years of experience with CFS patients. He teaches integrative medicine at a local university, he keeps up on the latest research and he's willing to experiment with new treatments.

    On my last visit, he said he had tried everything he knew about and then he gave me the phone number of a lawyer experienced in getting disability for CFS patients. In other words, Buh-bye! I appreciated his honesty, but it was devastating to know he was giving up on me.

    So the point is that all a doctor can really do is look for concurrent treatable symptoms, so go with the one you feel will look at all angles. For example, my doctor found that I have postural orthostatic tachycardia, which I'm now being treated for and it helps a tiny bit. Other than that, I'm doing all the nutritional and pacing things that I've read about. Nothing has helped much.

    Best of luck with the other suggestions for finding help.
    Vicki


  8. Marta608

    Marta608 Member

    You all have good suggestions, I guess I need to get my chin back up.

    Terry, I don't know how you do it. I also fell this winter and even though I dealt with the torn tendon in my finger it scrambled my sense of security and I live in a condo community. (When I fell there was a part of me who wanted help and another that hoped no one saw me. How silly is that?)

    Yes, Vicki, another doctor might be in order, darn it. I waited soooo long to get in with this guy but I guess that's the least of my problems. I read about some on here who seem to have angels for doctors and others who are just doing the best they can by themselves. Seems to me the ones slugging it out alone are improving at about the same rate as the ones with the angel-doctors. It's good to have someone in your corner, though.

    Thanks for your encouragement - and for being my angels.

    Marta

  9. Lalania1970

    Lalania1970 New Member

    Marta,
    You are not alone as far as hearts being with you. We are all here for each other thru good times & bad. I personally suggest finding either a local support group or local church.
    If you can make one local support group they should have a list of people in the group that you can call to vent when having bad day or questions. Some can help others will refer you to someone who can.
    As far as the church there are wonderful congregations out there, I have been a member of a church since 97 and I will admit I might make it a couple times a year but if I needed help with anything they will find someone among them to help weither it is meals once in awhile or help around the house. I had a hysterectomy and they brought my son & I food for 2 weeks and found a members daughter to come help take care of my son thru the day (he was 10 months) church is a wonderful place to meet freinds and people you can reach out to when in need.

    PRAYER is the #1 thing that keeps me going most days.

    As far as the Dr issue I have recentely changed due to my DR was no longer listening to me. I went to every clinic in the area till I found a DR that was knowledgeable in fibro and he has been a God sent. So they are out there.
    If it comes to changing DR dont feel guilty about doing it sometimes it is needed.

    God Bless & Prayers are with you!
    Lani
  10. Marta608

    Marta608 Member

    I guess I need to make a decision about doctors, don't I?

    Meanwhile, I think I have a torn retina and will have to deal with it ASAP tomorrow.

    Stay tuned. It can only get better, right?

    Marta

  11. lenasvn

    lenasvn New Member

    When I taper off SSRI's there will be a period when I feel awful, and it can persist for quite some time, I think it lasted almost 2 months last time, or at least one month.

    I was very moody, low and in a terrible shape mentally and physically.

    It eventually went away, and I felt like myself again. Tapering off can accually be worse than starting. It can be worth it if your gutt tells you this is what is best in your case.


    The others have given advice on how to get help with things while your're where you are now. I just wanted to let you know how the tapering off was for me, it might be the same for you.

    All I can say is that I am glad I did stop taking them. Whatever little "issues" I have I can handle in other ways. When it comes to pain management, they never did anything for the pain, and there sure are other options for pain management.
  12. Marta608

    Marta608 Member

    I appreciate knowing that. I was so confused about it, unable to think clearly, and went back on only because my life was getting so much more difficult without it. The fatigue was intense but even more scary was the total depression I was in. And then I didn't know if that we me without the drug or if that was just a phase. That was my biggest question and, unfortunately, he doctor couldn't seem to answer it.

    I think that. eventually, I will taper off again, this time even more slowly and when I get to an especially rough patch, I'll hold still for a bit. At least that seems to make sense right this minute.

    Marta
  13. PVLady

    PVLady New Member

    I understand you don't want to seem like a bother to your son, but I would consider having him stop by and have a "heart to heart" talk.
    You might Be surprised how they come through for you.
    It is easy for kids to be in denial about parents needs.
    At this time you really need him if possible.
    The other thing is join a church (your energy permitting) and make some new friends in your own age group.
    Now, something I considered was eharmony.com to find a friend/companion,if I was ever alone.
    I have heard so many good things about them.
    I am not talking some heavy romance, just new friends who would understand your limitations.
    We are alwqys here online but it is not the same.
    You are a very interesting person and I would love to be your friend if we lived
    closer.
    Take care....
  14. sues1

    sues1 New Member

    Look for senior citizen organizations in phone book. They can lead you to help in many ways and according to what you can pay, if you can pay.

    Ours has cleaning, home care, meals delivered,transportion to Drs., grocery and such/ They have van with lifts and such so they can take wheel chairs and such.

    I have not used any of these services but I have heard of them and know some that use it.

    Make all the calls you can......squeeky wheel gets the oil......so they say.... Susan
  15. Marta608

    Marta608 Member

    Oh, thank you all for your responses. It's such a comfort to know that we're not alone.

    I have had a talk with my son and he rallies for awhile, then zilch. I've decided I'm causing more stress for myself by trying to change the situation than if I just let it go.

    Mable, I'm delighted you found someone to love and to love you. What a joy that must be in your heart. You do inspire me.

    Janet, dear, I feel so much anger in your post at your husband. Not that I wouldn't be angry too because I would be, but somehow you must resolve it in your own mind because it's no doubt making you sicker. There's a game going on between you and hubby and it's not a healthy game. Forgive me for being so frank but you need to see it. If you absolutely can't sleep and it's not really a matter of getting away from hubby, is there anyway you could prepare meals for the next day during the night when you're up anyway instead of spending that time online? Can you somehow make a deal with him: more meals for more help?

    Susan: good idea about the Sr. Citizens center. While we don't have one in my town, there is one in the neighboring town. Now. I just have to admit to being a Senior Citizen and needing help. lol

    Mishque: I love your "test": Will I die? I do something similar but I take it even farther and say "Will anybody die?"! Sometimes I think I made the mistake of asking for patience about 11 years ago.... sigh

    Marta
  16. Marta608

    Marta608 Member

    As an update to when that post was first written at the end of May, I'm doing a bit better. I'm still tapering off Celexa; it may take me a year!

    My chiro, a new doctor, a new way of eating, vitamin D supplements and magnesium with malic acid have me out of the hole most of the time. My pain is a lot less and that makes anything - almost anything - possible.

    Thank you all for your compassion.

    Marta
  17. NyroFan

    NyroFan New Member

    Marta:
    My doctor, also affiliated to a hospital, asked me once if it was O.K. to bring some doctors 'on rounds' with him.
    I said yes and alhough it was uncomfortable to sit there with Dr. explaining my case to them: they were polite and asked no questions.

    Marta, you seem like you are doing many things and maybe you are stetching too far. I would get a good rheumatologist who understands FM/CFS...I had to go to three doctors before I found the right one---the one who believed in trigger points and new how to diagnose me.

    It can not hurt to try the two doctors in your town and then space the prospects out further from your area.
    My locals did me no good. Sometimes you have to travel
    far enough to get the care you need.

    Rest up, Marta. It seems like you need to put the brakes on. Just my little suggestion.

    hugs,
    nyrofan
  18. Marta608

    Marta608 Member

    Gigi!!!! How scrumptious that dessert sounds and, yes, I would love to come for dinner - lunch, breakfast or just a snack! My youngest son is in California, Pasadena area, so who knows in this crazy life we live?

    Nyrofan: Darlin', if I put on the brakes any more than I am, I'd be scrap. But I do thank you for your comment because, like you, sometimes I sense a situation in writing that may be closer to reality than if I was distracted by a face-to-face conversation. I do feel better than when I wrote the original post (I was half nuts then) but I will truly step back and take another look. Thank you for reminding me that I can be human.

    As for having a team looking at us like a specimen, ugh. I wonder what the doc would have said if you had refused?

    Fight: I love how sucinctly you put the reality of our life.

    Marta
  19. Marta608

    Marta608 Member

    Lick that good egg off your face and don't think a thing about it. I didn't even notice any disparity. That's the good thing about this board; we're often too out of it to be critical. Then again........

    I loved the post and I wish you'd left it on.

    Sorry to hear you're not feeling so hot. The cycles with this can make a person batty. Food person that you are, have you ever done a food diary? The more I eat basic meats, veggies and fruits and feel better, the more I believe food sensitivites/additives play a major part in our illness.

    Hugs,
    Marta
  20. Marta608

    Marta608 Member

    Yep, we have to do what we can do on our own most of the time. I believe that we are the true survivors in this world.

    You sound extremely angry. I'm sorry.

    Hugs,
    Marta