Help! Trying to be a parent with fibromyalgia and ME?

Hi There, I've been ill for many years with fibromyalgia and ME. I'm going through a particularly bad patch and can barely get out of bed with pain and exhaustion. My daughter who's 12 has been behaving really badly, refusing to help out around the house, or do as she is told. I need help to prepare food and keep the house habitable but she seems to think that she shouldn't have to help out and is generally making it very clear that she doesn't give a toss about me. The inevitable conflict is very stressful and is making me even more ill. I have always tried to shield her from the effects of my illness, but it's just not possible anymore. What have other parents with these conditions experiences been?

13 Replies

  • Have you discussed the difficulties of caring/ living with chronic illness with a social worker there could be more support available which would help ease the stresses of the relationship with your daughter.

    As you will know already added stress makes the conditions deteriorate so for the sake of your health if nothing more then more support is necessary.

  • Hi Ian123

    Thank you for replying to my question, it definitely is something worth looking into - for the sake of all the family.

  • As many things are financially driven hopefully the wisdom of supporting the family care for you will not escape them and coping with your health will become easier.

  • Perhaps they should call it the terrible twelves instead of the terrible twos.

    Sounds like a battle of wills is developing and that can be a very negative thing, for both of you.

    She may not understand just how bad you are at the moment,, it could also be that she is feeling your incapacity as an infringement on her time.

    We are creatures of habit and resist change on our routines, this goes for kids as well.

    I think if you can somehow get her to do something small for you and reward her with a big hug and tell her just how much you love her and appreciate her and apologise for being so ill and dependant on her, it might start to turn things around for both of you.

    Try to pick a time when she is receptive or at least not resistant and defensive.

    I think you should avoid trying to bribe her with money or material things which is so rife today.

    It is so difficult to see into our own situations at times and usually because we are so busy reacting that we can't.

    Please don't see this as advise on parenting, it is just my thoughts on the possibilities from my observations of life.

    On a level apart from your difficulty with your daughter at present the thing that will be irritating your condition is the stress.

    At the end of the day I say if you can manage to let go, don't worry about the house work it is not the house falling apart that will cause your pain to increase but your internal frustration and feelings at or about the chaos that will do the damage.

    It is difficult to explain but fighting our situation causes our pain to increase, and I had to work for years on changing how I react to my world and the stressors in it.

    I wish you peace and contentment and hope that my thoughts may be of use.

    Best Wishes, Ray

  • Hi Ray

    Thank you for taking the time to write such an insightful reply. I think she has great difficulty coming to terms with my illness and in some way hopes if she ignores all signs of it, it might not be real.

    The stress of the strained relationship has a very negative effect on my health, and then it just gets worse and worse.

    I just realised this morning that I was probably so upset with my daughter when she ignored my request for help because I was treated very badly by my employer of 28 years - the NHS - when I asked them for help when I was ill. They responded by taking away my flexible working which triggered a major relapse from which I never recovered and forced me to retire from the job I loved. That hurt me a lot as I believed that my managers, with whom I had worked with all that time, and had given my all to, were my 'friends' and would actually honour all those lovely disability equality policies that they won prizes for. No chance!

  • S&T girl,

    It is a sad reflection of the world we live in the way you were treated by your employer.

    Today the words on paper are not often backed with any sustanance.

    I think it is a bit like interviews today, people feel that they are expected to talk about teamwork and S61T like that. It is like many of the forms people are made to complete today, full of waffle and confusing bureaucratic nothingness if you think about them!

    I rang to get an electric card for a new house I just bought and the person at the other end had the audacity to ask who my employer was,, I said,,, That is NOT relevant to the matter at hand!

    She swiftly moved along,,, proving my point!

    Oh Dear, I am wandering with my waffle,, again.

    I am glad you seen relevance in my reply to you.

    I think you are right when you said: "I think she has great difficulty coming to terms with my illness and in some way hopes if she ignores all signs of it, it might not be real."

    Part of that has to be fear.

    Best wishes, Ray

  • Thanks again Ray.

  • Afraid I have a lot of sympathy for your daughter. She is going through a lot herself, why is that they want to help when they are 2 but not 12.

    You may need to change what you think is the right level of maintenance in the home. Has just started senior school?

    Who else can help you? How can you help her?

    My mother was very demanding but not able to see that if she put some of her things away it would be easier to dust. Not every thing needed to be ironed.

  • Hi Betty 67

    You're right of course to look at the other perspective - it's so hard to do that when taking your next breath seems like a challenge too far and your brain's on fire :(

    Fibro and ME are cruel diseases for everyone - the ill and their families.

  • Hi there, i was in similar situation a while ago. Due to absolute exhaustion a nd pain i ended up in tears and told my ex husband what was happening. He spoke to my daughter, as did her gran and she then came to me to talk. She apologised fir being so selfish and said she didnt realise how bad i was feeling and how upset i had been by her attitude. But i also agree with betty67, i had to let go of my expectations of cleanliness and learn to accept how it is now. Also, when my daughter has a lot on at school the house is ignored, it is a balancing act and my daughter is NOT my carer. Good luck,

  • Hi Shazzy

    That's why this forum is so useful - you get replies from folk who actually do know what it's like.

    Her gran is going to have a word with her and try and show her that sometimes Mum does need a little help. I'm not particularly house proud but we do need to eat and wear clothes and not get food-poisoning from the kitchen.

    I was always very independent before I became ill and I absolutely hate having to ask anyone for help - I do it when I'm desperate and have no other options.

    Good Luck in your parenting journey.

  • Hi, I can sympathise with how you are both feeling. I have fibro and other health/mobility problems and seem to be mostly in bed these days. I have a 7 year old daughter and she is playing up a lot at the moment. I have read that if a parent is ill a child can have attention seeking behaviour if they don't know how to cope. Even though she is only little I expect her to tidy up after herself most of the time. I try to look at it as making sure she does the things I would be asking her to do anyway if I weren't ill. Anything other than that I really stop and think before asking her (just fetching things) and if I do have to I always explain why after she said I'm always asking her to fetch and carry. I don't want her to 'look after me'. I want her to have as normal a childhood as possible.

    If it's household stuff you are struggling with how about a cleaner if you can afford it, I'm sure the money would be worth it to help with your relationship. Batch cooking is good and I learnt a while ago not to worry as much about the state of the house. We are having a major de-clutter at the moment to make life easier. I am very lucky to have a great partner who cooks and washes up.

    Try to spend some time with her and tell her how much you appreciate what she does. I imagine 12 is a difficult age anyway with hormones etc xx

  • Hi sickandtiredgirl

    I am so sorry to read this and I genuinely hope that you can find some resolution and relief to this issue. I was wondering if you have tried sitting her down and telling her exactly how she is making you feel? As quite often youngsters do not comprehend the effects of their actions?

    I sincerely hope that you can find the answers that you are looking for.

    All my hopes and dreams for you


You may also like...