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Really struggling not sure what to do

2 replies

MimiMoo33 · 14/09/2015 11:50

Tried so hard to stay positive but i just can't cope anymore and don't know what to do.
Ive been diagnosed with a rare chronic illness two years ago. I get very fatigued and have muscle weakness on my diaphragm and some of my limbs.

I have an 9 year old daughter who we think has aspergers but can't get anyone to listen to us because she does not present in the classroom so aside from putting a camera in the home its hard to get taken seriously. But whatever even if she doesn't what is clear is that she has severe anxiety that effects lots of aspects of her life and her anxiety at home is getting out of control. We've tried so hard to access support but we just get sent to a parenting class. Where actually we need real emotional support for my daughter.
She has major melt downs that can get physical. I have to sleep in her bed every night because she cannot sleep alone no matter what we do. If we try and get her to sleep without me she will just relentlessly come out of her room and have melt downs. I have to carry her into the car because she's convinced her teacher hates her and doesn't want to go to school. This leaves me exhausted and makes my condition worse.

I have a 16 year old daughter who is also struggling to cope with the stresses of life. I can no longer go out with her as she's embarrassed of my wheelchair and refuses to help me. She will actually make a huge scene about it if i ask for her help. She's struggling at school and struggling with her own mental health with so much going on at home. Every conversation i have with her is negative. Every time i try to talk to her its 'not right now mum', 'leave me alone' Every positive i give you her to try and build the relationship back up she will turn into a negative. I just feel like she hates me and i feel such a failure.

My husband thinks he's helping but he very likely has aspergers himself and really struggles to understand the emotional support I or the girls need. This just leads me to feeling frustrated and like I'm really on my own with it all. Sometimes i feel it would be just easier to cope on my own as the frustration of 'nagging' at hime will go and i can just get on with it.

I know what my daughters both need but I don't have the energy it all takes and end up failing in what I'm trying to achieve. I feel like I'm slowly dying physically sometimes and sometimes i feel like i just want to speed it up!
Then i know my children need me but sometimes i just feel broken and that they would be better of with someone to care for them that actually works. Its just am impossible situation and i don't know how to manage

OP posts:
kirstywade82 · 14/09/2015 14:20

Blimey, that all sounds very stressful, you've done well to keep it together for so long!
Your husband is probably feeling like you do, very frustrated and at a loss as to what to do to help his family.
Your 16 yo is also suffering, 16 is a difficult age, leaving school, starting work/college, discovering sexuality and herself. She needs you to be her mum, maybe she feels she's not getting that with everything else that's happening?
I think the key here is your 9yo, it is so difficult to get a diagnoses of autism/aspergers. If she is behaving at school that's obviously the environment she feels most relaxed and in control in. People with autism/aspergers don't always show their characteristics/behaviours.
I would start keeping a diary and maybe a video log and hound your doctors. Push to refer her to a psychiatrist. Ask friends/family to write statements of any behaviours they have witnessed. Once you have that diagnoses you will all get the support you need.

MimiMoo33 · 14/09/2015 18:14

Thank you for answering, just feeling at such a loss and totally overwhelmed. I just feel like theres not one aspect of my life thats going well and that I'm in control of and finding it really tough.

Im not very good at asking for help although i did break down talking to my parents today. They live miles away so its difficult for them and i don't like burdening them with my problems as i know they worry. They have offered to pay for a cleaner twice a week so at least thats one less thing to worry about for the moment and should help a little. We have decided to change my daughters school next year for the summer term as they have a really good learning support team at the school we are looking at. I'm holding off slightly as she really hates any kind of change and so i need to be mentally prepared as i know it will be really hard on all of us! I think i may need my mum down for a while whilst we settle her in. This school has a senior school attached to it so it will be one move and will be best in the long run.

If i feel better supported by the school and that they are understanding I will feel more confident about pursuing the help we need from the CAMHS. The experience i have had so far has lost my confidence. They where basically supportive and promised lots until they spoke to the school! We where them dropped like a piece of lead balloon and i lost hope. I know that girls are affected differently to boys and I don't want her to carry on struggling because of this :(

I know its so selfish but sometimes i just feel like taking something that i know will stress my disease out like alcohol, as i know it will land me in hospital and feel like that would be a break. How awful and selfish is that!

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