Surprisingly good outcomes for people who get ME/CFS after Mononucleosis (Glandular Fever)
Sometimes ME/CFS emerges after mononucleosis, or glandular fever. Simon McGrath shares results from a long-term follow-up study from Haukeland University Hospital in Norway...
Discuss the article on the Forums.

Need Encouragement--Lots of Pain, Lots of Crying

Discussion in 'Pain and Inflammation' started by me2, Jan 30, 2012.

  1. me2

    me2

    Messages:
    24
    Likes:
    4
    I have noticed that past crashes were frequently accompanied by a lot of crying - heavy crying. Well, the last couple of days, I have been very teary and today by evening, I was just plain sobbing. I dreamed last night that I was well and that I lived on my own and had friends over. There was just this feeling of joy in the dream. My 3 nearly grown daughters were in it and they lived nearby. We actually went shopping together in the dream! Then, I woke up. I dragged myself out to the couch where I now live my life. Suffice it to say, I am in pain. My husband is a very negative person and started complaining immediately about how burdened he is with housework. Half of what he feels must be done is actually not a necessity, in my opinion. I just hate to hear his complaining. My eldest daughter is a senior in high school - homeschooled - and terribly sick with ME, also. She needs help washing her hair and brushing her teeth. Apparently, she and I are burdens - BIG burdens. He denies it, but I think it is pretty clear. The other 2 daughters are 13 and 16 and are also homeschooled. The 16 yr old has been diagnosed with ADD and anxiety disorder. She is very behind on schoolwork and doesn't seem to care. She lays in bed nearly all day and says she feels weak and has no appetite. She is 5'6" and about 90 lbs. Her recent physical showed low Vitamin D but that was all. I am starting to wonder if she has ME, too, but her immune system was strong as an ox when she was a kid whereas her big sister's was weak like mine. She does have joint pain, however. She says she can't wait until she is old enough to be out on her own and is not open to a close relationship with me - which is a grief to me. We are facing some significant financial challenges later this year, too. I can't decide if I am just overwhelmed the same as a well person would be or if the stress is causing a crash. I definitely cannot think straight and don't know what actions to take about any of these issues. Anyone willing to help with suggestions or just a little encouragement? Thanks, in advance.
     
  2. Francelle

    Francelle Senior Member

    Messages:
    444
    Likes:
    15
    Victoria, Australia
    Sorry to hear how tough things are for! Just a bit puzzled though - who homeschools your daughters if you are so sick? I couldn't imagine having the huge amount of creative energy needed to homeschool with M.E. Hats off to you is all I can say! Phew!
     
  3. me2

    me2

    Messages:
    24
    Likes:
    4
    Thanks, Francelle. Actually, in Florida homeschooling is wonderful. The books and teachers are all provided free online and the "parent/teacher" meetings are by phone. So, no more going to the school for PTA or fundraisers. The teachers are all very helpful and really willing to help my ADD daughter. No worries about being late or absent - it really is a great relief. Hope that helps to explain the situation - because you are sooo right about the lack of energy - creative or otherwise!
     
  4. Ocean

    Ocean Senior Member

    Messages:
    1,176
    Likes:
    254
    U.S.
    Your situation sounds very stressful. As for the crying, could it possibly by any medication you're taking? I noticed some of the meds I've taken cause excessive emotional reaction and make me very prone to crying in a way I would not be normally. Things sounds like they are really hard for your whole family. I'm thinking of you and wishing you some relief.
     
    ggingues likes this.
  5. hurtingallthetimet

    hurtingallthetimet Senior Member

    Messages:
    612
    Likes:
    115
    hope that you and your daughter are feeling much better...i cry almost daily also..some days much worse than others...the good dreams are sometimes very emotional ive dreamed of being healhty and with friends again also..just to wake up exhuasted and stiff wiht pain it is depressing..

    im sorry your husband is negative and that it makes you feel like a burden. i hope that he comes around and understands how ill you and your daugther are...it is very hard to live with these illness..people just dont seem to understand we look healhty, we have to go about life and do what we have to for ourselves and our familys but that doesnt mean that we arent constatnly in pain and fatigue...so hopefully he will be more understanding..

    i understand how you feel though and just wanted to let you know your not alone..i also feel like a burden...my husband sounds a little more understanding though he helps out alot and so do kids..but i feel guilty for burdening them with things and i hate it..its hard whne you go from being independent finacally and physcically to being so ill your on medications to just make it through day and night..

    hope that you doing better take care
     
  6. taniaaust1

    taniaaust1

    Messages:
    8,520
    Likes:
    5,472
    Sth Australia
    Hi. One of my daughters used to be home schooled in that manner (correspondance school and contact with her teachers by phone).

    As a child. I never caught anything till I got mono at 15? years old and then I was extremely sick (whole term of school bedridden). I was never off school sick before that even when things were going around, I never caught them. One thing about ME/CFS is that many say our patient group are TH2 dominant. (Dr Cheney and others have written about this)

    Depending on what illness we have, our immune systems fight illness in either Th1 or Th2. While in a Th2 state, many never get things such as colds. There are many with ME/CFS who never get colds which is said to be due to this reason, being in this side of the immune system thou makes us more susceptable to certain viruses eg mono.

    I strongly believe I have been in a Th2 state which those who have ME in, all my life and that may be why I was such an "abnormally healthy" child who never got sick with the things going around school.

    Our specialists are still trying to work out what happens first.. does ME cause the Th2 dominance of our immune system or does the Th2 dominance make us more susceptable to the ME. I personally think based on my own experience of my abnormally healthy health during childhood that it is Th2 dominance may happen first in many of us. So dont rule out the possibility of your other daughter having this illness just cause she was very healthy before.

    Low vitamin D can cause pain in the body and some other symptoms, so make sure your daughter gets her levels up and retested to make sure it isnt just that. If she dont care about the fact she isnt getting her school work done, she may have depression too (or just be feeling too unwell to bother careing about it).

    If you are just crying when you crash. You may not have depression as such but may be just overwhelmed with the whole situation of everything. (I suspect something hormonal also happens when we crash). You have a situation there which anyone would get overwhelmed at (counsellor may be helpful if you get a good one)

    Do you have a ME/CFS specialist who could have a little chat to your hubbie if that hasnt been done already? His attitude cant be helping you emotionally.

    ME/CFS can run quite strongly in some families. We seem to be having a lot of trouble with it in mine with 2 of my sisters looking like they may be prone to this also or already have it. (I have two affected cousins too, its hitting some of us while very young still).

    Im sorry that my post isnt encouraging.
     
  7. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

    Messages:
    4,138
    Likes:
    991
    Concord, NH
    Welcome to the forum. Sounds like your hands are very full!

    GG
     
  8. caledonia

    caledonia

    Messages:
    3,079
    Likes:
    1,757
    Cincinnati, OH, USA
    I grew up with a mother with ME/CFS although we didn't know what she had, just that she had no energy and couldn't do things like a regular mother. She taught us children to be independent and do things for ourselves. We all had chores to do around the house. My job was to set the table for supper, then clear the plates and load them in the dishwasher. My dad worked full time and he would also help with whatever housework my mom couldn't do (cleaning and lawncare). My dad, however, unlike your husband, was a cheerful uncomplaining type who accepted this arrangement as part of "for better or for worse". My mom handled laundry and cooking supper. We all made our own breakfasts and lunches by the time we were in school. A few times a year we would hire a cleaning lady to help (prior to have friends over for a party).

    If you haven't already, you should apply for Social Security disability for you and your disabled child. This will help with finances. There is an eligibility quiz on the ssa.gov site to see if you are eligible.

    The children who are healthy should also help with housework and/or meals. I don't know if hiring in some cleaning help is possible or not.

    The pain issues need to be addressed better with meds, supplements, or other modalities. This will help with quality of life.

    In general, I think the family could use some counseling on how to handle severe chronic illness of family members. When one person is sick, the whole family is affected, and you have two sick...you guys need to get some fun back in your life, it can't be all about the sickness.

    Maybe the 16 year old would do better at a regular school so she could at least get out of the house for several hours a day.
     

See more popular forum discussions.

Share This Page