Family not understanding!

Hi everyone,

I hope you have had a lovely Christmas, as good as it can be anyhow! I had a good one, until I spoke to my daughter at her sisters party. She wants me to babysit her 2 young daughters, my granddaughters, one of whom is only just a year old, and wakes regularly still. It is on new years eve, until at least 2 in the morning.

I have tried to explain that I have to take my pramipexole, at about 8 pm, in order to stop the worst symptoms, and once I do, I literally do pass out with in about an hour and a half. My husband says I can be in the middle of a sentence, and I am gone, and he cannot wake me at all it is more as if I am unconscious. If I am lucky I can sometimes sleep for about 6 hours, but more normally around 4 hours. If I don't take them by 10 at the latest, I get the full blown RLS, and also the involuntary movements asleep. I am in terrible pain, it seems to make my back problems worse too, I end up just writhing on the floor.

She is now not talking to me, and I am desperately upset, and also a bit angry at her nasty attitude towards me. How on earth do we explain this horrible illness to people, when they don't take it seriously, or even think it is funny!

I am also under investigation for cardiac problems, and have been told that I probably have an autoimmune immune desease in the Crest spectrum of disorders. My ECG, is much worse, and I have been told to not get too stressed and rest frequently until they know what is going on with my heart. She has been told all this, but just does not accept it all as being a problem.

Sorry about the moaning, I hope you all have a great New year,

Hugs Cazx

12 Replies

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  • You can show her my video, it is me a night without medicin/drug.

    Tell her that this is how you have it without your pramipexole, and with it you're sleeping, Maybe she'll understand a little bit more? I do hope it'll help you.

    kerstinth.se/KerstinTh/Film...

  • Thank you swedish, when she decides to talk to me again I will try. Hope you had a great new year,

    Cazx

  • Oh cazbaz, that is really upsetting for you. I have a daughter and a son, both adults. My daughter lives just ten mins from me. She understands completely when i say i cant babysit at night. Her eldest is 6 years old, and she stays over sometimes, with me, that is not a problem as she looks after herself more or less, the youngest one is 2 years and i wont look after her yet over night because once i take my pramipexole, i am not in a fit state to look after a little one who might wake in the night. You can show your daughter my comment if you want to, she will realise i am sure, how unfair she is being. Has she got a mother in law who can do the babysitting, thats who my daughter asks when she wants a night out with her hubby.

  • She just does not believe me, and refuses to look, it is making me feel so ill, the doctor thinks I have a heart condition and I am awaiting an MRI of my heart, this is making worse, I can't stop thinking about it, I know I should, my youngest says I should just suck it up and get on with it, she doesn't really get it either, never mind. Thank you for the response,

    Cazx

  • Hi Cazx. Maybe it would help if you get your daughter to look at this forum. She would then see how many of us from all over the world are suffering from this afflication and perhaps give her a better understanding about what you are going through! Because we don't show physical symptoms it is hard for people to understand the severity of what we suffer.

  • You are so right, she only sees me in the day, and because my back has been a bit better recently, she thinks I am pretending. I feel like giving up.

    Cazx

  • I have exact same problem.i have 2 grandsons, 1 aged 5 the other aged5 months. I don't sleep most nights because of myRLS until eventually I fall over through sheer exhaustion sometimes not until 6-8am

    My problem is my daughter wants me to keep both my grandsons tonight for New Year's Eve. I have been stressing about this for days. My oldest grandson is no bother to have overnight because he can amuse himself for a couple of hours in the morning until I can finally lift my head from the pillow, but if I have my youngest grandson it means that when I finally fall asleep I will have to get back up with him early in the morning, and then I will have them until late afternoon before they get picked up, which means I can't go for a sleep during the day, which will make my symptoms worse during tomorrow night.

    My daughter just doesn't understand how bad things are for me. And I feel awful about my youngest grandson because I can't take him overnight the way I do with the oldest grandson, I think she feels I make a difference with the boys when this absolutely isn't the case. It's just that when my oldest grandson was a baby my RLS wasn't as bad as it is now and I had no problem keeping him overnight but it's just so. Much worse now and I'm simply not fit for a baby now. I wish my daughter understood more, she says she does, but if she did she wouldn't be asking me to keep the baby overnight and making me feel bad if I refuse

  • Same thing, except I am literally unconscious, for about3 4 hours, so do not feel safe to have them on my own at night.

    Cazx

  • Not nice Cazbaz, but i dont see that you have any need to apologise to your daughter, it's her being selfish not you, if a night out is more important than her mum's health, then she's the one thats selfish not you, happy new year to you x

  • Thank you, it does hurt, she couldn't be bothered to see me at Christmas either.

    Cazx

  • Well, I hate to say it, but you are not alone when it comes to families not "getting it". It is maddening. I knew one woman who's husband who used to gather up all her meds and dole them out to her when HE thought she needed them! They are now not together, sadly, just because of RLS and no understanding. In my humble opinion, and with your husband backing you up about the meds and how they affect you, it is plain disrespectful of your daughter to not speak to you because she wnats to go out and have fun. I hope she has calmed down since New Year's. My 85 yr old mother lives with me, and she does not have RLS, but she totally understands that when I get up that I need a couple of hours before I can tackle anything at all. even if the do NOT understand, they should respect your illness and support you. So sorry that this happened to you! I have been havin computer problems, but I am back now. ;) here's to a productive new year in RLS research. (fingers crossed)

  • Unfortunately I have now found out from my youngest daughter that this is some sort of punishment for leaving her father and having a breakdown when she was about 12, she knows how he treated me, but thinks I owe her, and should everything she says, it appears the babysitting thing is just a way to hurt me, as well as she truly does not accept that I am ill.

    Cazx

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