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How can I explain this to my daughter?

Nov 07, 2016 6:50 AM

Over the weekend if had soo much pain it's unbearable so I've tried to sleep my way thro it. Unfortunately my 10 year old daughter has seen it all, the last time the pain levels were like this I was admitted to hospital (on 2 separate occasions last year for TN and 1 for really bad withdrawal after the hospital Dr's sent me home the day after stopping all my meds dead!) so she's had major separation issues this morning. SHE refused to get up, she refused to eat anything, she refused to get dressed, she just refused everything full stop.
Once I did get her up and dressed she still refused to eat which is a worry for me because she's type 1 diabetic (only diagnosed 18th August), she wouldn't even test her blood glucose levels. I had already rang the school and left a message saying that I was bringing her in but we're going to be late as she was having difficulties.
I stopped arguing about her eating and testing because she was dressed and I knew the school would help.
When we got to the school the headmistress was coming out of the office to get something from her car which worked perfectly because both Jo and myself respect her deeply, she has helped us soo much over the last year since Jo joined the school. I tried to leave jo with the headmistress but she clung on to me and wouldn't let me go so we all went into her office and she shut the door to give us privacy so we could talk to her. The whole time Jo still clung on to me not letting me go. Both myself and the hheadmistress worked out that Jo was a little worried about not completing a homework project but mainly because Jo is very worried that I am going to be admitted back to hospital.

I've tried to explain things to her that I have better medical care now and I've got a doctor's appointment this afternoon and if anything like that I would ring the school straight away. She's also seeing the diabetic psychologist who is trying to help her with this as well bit I'm lost, I hate seeing either of my babies upset like this (yes there still my babies even though they're 14y and 10y).
Is there another way to explain it? My 14 year old seems to understand but I'm not sure, he asks questions and when I explain he seems to be ok plus his dad has not long been diagnosed with fibromialga.


Sorry but I'm a little lost with this and I need a little help. I've tried to explain it a few ways to her and the psychologist seemed to be making some progress until this morning

Nov 07, 2016 8:46 AM

Sezzy - check out the thread on spoon theory by JediRay

Nov 07, 2016 9:21 AM

Ah yes Shannon, I just found that website with the original story, I will try that when I pick her up from school.
I'm will to try anything at the moment if I thought it would help.
I hope you're having a good day xx

Nov 07, 2016 3:39 PM

I have a friend with fibromyalgia that wrote a book for children explaining that pain. I wonder if it would help with any Chronic pain condition. Its called A Doll for Rayven. Am going to go look it up.

Nov 07, 2016 3:44 PM

That's the link to get book. I got the title wrong. Lol it's Rayvens Doll. It talks about invisible illness. You can click on where it says overview and it tells a little about it.

Nov 07, 2016 4:43 PM

I'm type 1 diabetic too and I was 12 when I was diagnosed, so not much older than your daughter. I was terrified. I didn't want to go to school, blood test or inject, I hated food. I just wanted to be normal. I was anxious constantly and maybe the shock of her diagnosis (3 months is not long at all) along with your illness just got too much for her. At 34, it has still taken me a year to deal with being diagnosed with fibro... diabetes is so hard to adjust to. With the love and support you're already showing her, she'll get through this scary time. Hope you're both okay. Just baby steps and adjusting to things can kick you in the bum some days. Xx

Nov 07, 2016 9:17 PM

Thank you for the link Mimikay, I've read the overview and it seems like it will help...I'll look it up on the UK amazon site in the morning to get the book here.
Thank you again Mimikay I very much appreciate you taking the time to finding the link and posting it here for me xxx

Nov 07, 2016 9:25 PM

Delphi yes I do know she's struggling with the dx probably more so now when she sees her friends who can eat whatever they want where as she has to count the carbs and workout if it's actually worth the insulin for it.
What also doesn't help is the last time she saw me this bad with the pain I was admitted to hospital altho I'm coping a little better this time because I know there's nothing the hospital can do that will help me anymore than what I'm already doing at home. Hopefully this flair will start to settle down sooner rather than later.
Thank you for taking the time to help I do very much appreciate it xx

Nov 07, 2016 9:41 PM

Did she see you when you were there last time? You could just let her know it's to make you feel better and she can come see you but you'll always come home and no one is taking you anywhere. Just a thought. Or that she will be the first to know if you decided to go there again. Geez sorry

Nov 08, 2016 3:33 AM

Heather I have tried to let her know that and even her headmistress explained that if I did go back to hospital she'd be the first to know.
We've had a rough couple of years....her dad was an alcoholic and became very angry and abusive so we've been thro the woman's refuge system but are now settled and he has no idea where we are, he also has no contact with us (altho that doesn't stop him sending messages to my family members) then she was diagnosed with type 1 diabetes a few months ago.
We've all had a lot to deal with so sometimes it gets too much and since I've been in this flair she's become very clingy again. Once I find a copy of the book Mimikay suggested I'll go thro that with her, I tried explaining the spoon theory but she couldn't really fully understand it 😕

Nov 08, 2016 5:07 PM

It sounds like there is a ton of change happening for her right now, which is always scary and anxiety provoking. Since she loves you so much and you are her only parent right now it is understandable that she is very clingy and worried about you.

I don't know if she has a cellphone (I know she is pretty young) but if she does or you want to get her one, it could help if you were able to text her throughout the day so she could "see" you were still ok. You could even stop by during lunch time (if you can) to help her get to school and be less anxious. If she knew that she would see you in half the time it might be less scary.

I always feel that honesty is typically the best way to go about it, so I wouldn't try to lie about how you feel (obviously not in a scary way for her just stating facts) but make sure that she understands that it is can be a cycle for you, it gets bad but it always gets better again. I think the easiest way to explain it to her is to use the past example of when you are really sick and in the hospital, you ended up getting better and the people there helped you.

I wouldn't expect for her to ever be 'fine' when you are in a lot of pain, but I hope that she will be able to cope a bit better.

She might also be extra upset because she is losing a bit of her 'normal' mom when your are feeling bad. I'm not saying this to make you feel guilty, trust me she wouldn't want any other mom ❤️ I just know I felt that way about my mom who suffers from chronic illness too.

I hope you and your daughter stay feeling better soon ❤️

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