New Here...At a Loss and Venting

Discussion in 'Fibromyalgia Main Forum' started by SleepyMama, Nov 18, 2006.

  1. SleepyMama

    SleepyMama New Member

    I'm a single mom to two boys aged 4 and 2. My four year old has a severe disability called Leigh's disease. I do get nursing respite to help me with him, maybe if I didn't have CFS it would even things out, I don't know. I just feel that my kids are suffering because of my illness and I don't know what to do. I've been through "official" diagnosis and a joke of a treatment (antidepressants). I've been referred as far as my doctor will send me, which didn't get me anywhere. I'm too tired to go see my doctor is what it comes down to! How do I find help if I can't get out of the house!? My son needs a nurse with him for me to be able to go out...and I need to be up to it when the nurse is available.
    Things are just getting worse and worse. The harder I push, the harder I fall, the worse is is to climb up again. I think I might be dealing with some sneaky virus too, dragging my immune system along, for about 2 months now, I don't know how to catch up.
    I guess I just needed to vent...I don't expect anyone to have answers for my, I'm just so tired, sick of it all!

  2. monamea

    monamea New Member

    Hello SleepyMama, first of all I am sorry to hear that you are having so many problems as a single care giver. I not sure what it is that your child has, I have never heard of it. Are you the only parent? Where is the Father? You may have been told you have CFS and no wonder but I would get another Dr. one who cares and also one who will point you in the right direction for help with your child. You must be worn out. It is very important that you get out even if it is to walk around the block, with all of the stress you are under you need to get some sunshine and fresh air. I expect that another part of your problem is depression and anger that you are not getting help. They say every person needs at least a couple hours of sunshine or at least fresh air a day. There might be people whom you can trust to watch over the children so that you can excape for a while. Also you have 2 children and your 2 year old may feel left out and need that one on one it could be something the two of you can do each day or every other day. Please call around there must be organizations who can help you, also church groups are a good place to look also. Try to do this and take care, also venting is good!!!

    Monamea
  3. Catseye

    Catseye Member

    Go to the "what works for me" board and start taking supplements that have helped other people. That will help and you can start trying to find a doctor that has actual experience with cfs. I've found when I ask doctors if they have experience with cfs, they all say "yes" but then I know more than they do.


    Dr. Cheney has treated over 5000 cfs patients. His treatment protocol is something you can read through and decide what to try on your own. Cheney's protocol is in the library, search cheney and look at Nov 8, 2002. I've managed to fix myself up alot without much help from doctors. Also Dr. Titelbaum has a good treatment program that intersects with Cheney's.

    Start with: no dairy, no wheat, don't eat anything that comes in a box. Take digestive enzymes for food and betaine hcl for meats to help make sure you break down food properly. Eat lots of vegetables; there are things in them that we need to function properly besides just vitamins. Take a good (not like centrum or one a day) vitamin supplement and a good mineral supplement; get them from a health food store. good luck! karen

    [This Message was Edited on 11/19/2006]
  4. painintheeverywhere

    painintheeverywhere New Member

    and you definately have it tougher! It is so difficult having the resposibility that you do and your an incredible person to be doing it by yourself even if others should be responsible as well.

    Where do you live? If you are in Colorado, I would absolutely be willing to help in anyway that I can.

    I understand so completely what you are facing and I am sorry. You do need help and support though...so don't let pride stand in your way of asking. You may have support groups around you for FM/CFS, Leigh's disease or even churches. Please ask for help, because you need to be able to take breaks from one or both of your children without guilt. I know it's easier said than done, but you will have more to give them if you do!

    I am not sure how far you have gotten with your Doc's, it sounds as though you have your diagnosis which is the hardest part. You do have to continue going to the Doctor though, any and all documentation can eventually help you get disability and if you get a better Doctor that Specializes in FM/CFS you will get more help. It all takes time, energy and persistance and I realize how hard it is when you don't feel good and are probably depressed -but do it anyway and reach out for help. In the end it will pay off.

    You have taken a good first step by reaching out here.

    God Bless you and your babies!

    Jane
  5. b~kay~b

    b~kay~b New Member

    hi and welc ome and i am sorry for your hard times. here is a great place to vent and get some great feedback. everyone here is friendly andhelpful and very supportive. i love coming up here it makes me feel beter. i am truely sorry for your sons illness that is ahrd and i will pray for you both its hard to hear about a child you know as a adults its difficult to go through something but for a child it just doesnt make sense so i can see if there is depression anger and its alot for one person to ahndle and then another youngin to care for. well you make sure you do it you may not feel like it but get up and get out the day you feel your worst is the best day to do it you need to take care of yourself you depend on yourself and those babies need you so dont forget you. look in the phone book, look someone up on the computer and just do it. also if you dont like the anti depressant thing because you are a single mommy research on natural remedies what is it b12 energy i forgot bad day sorry but research that area also multi vitamins plenty of water stay away from caffeine and sugar you will have the rush but then you crash hard. i dunno if that might be something you would be interested in but because you are a single mom i thought you would like things that might be nondrowsy. god bless you and your bbabies,B~Kay