Struggling

Mummaru

Hello all, I'm not surebif anyone can offer any advice or information about my current struggles or.not, but at this point, I don't know what else to do or where to turn.

I was diagnosed with Fibromyalgia in 2018 after over 20 years of dealing with pain and other symptoms which all declined year after year, I also have diagnosis of hypertension, osteoarthritis, slipped disk, asthma, migraine, Tempromandibular Jaw Disorder, reynauds, and am under Rheumatology for assessment for rheumatoid arthritis too.

In 2020, I separated from my husband after 29 years together due to domestic abuse and me finally reaching my limit of being able to accept his behaviour. We have 4 children aged 29, 22, and boy/girl twins of 15 (16 next week).

MMy eldest two have their own families and homes, and my youngest two live with me. Both are neurodivergent. My son was diagnosed with combined ADHD with complications of trauma in December 2023 after being under assessment for over 7 years (this was due to long waiting list, staffing and funding issues within my local NHS Neurodevelopmental Service), he also has a sleep disorder for which he is.prescribed Circadin, and has issues with his ears meaning they have to be syringed at the hospital every 4 months (as a very young child he had glue ear and was issued hearing aids from the age of 4 to the age of 7)

My daughter is awaiting the outcome of her ASD assessment which has also been a long time coming, but as her symptoms were not as glaringly obvious as her brother's, she masked successfully for many years. She became unable to mask as well following 2 years of being bullied at school, which finally led to friendship and social difficulties, severe anxiety, and school refusal all.alongside bereavement. This culminated in my de-registering her last year despite her being academically competent, with all expected GCSE grades within the 6-9 range.

Both children have made applications for college for September.

In September last year we lost my Dad unexpectedly and then my ex-husband's Mum also unexpectedly just 11 days later.

Both the children have struggled with these losses, and my Mum who is also experiencing a decline in her physical and mental health is also struggling with her grief too and has displayed signs of delerium at points (something that first happened in 2018 following a severe mgraine and hospitalisation). We have recently found out she has osteoporosis with kyphosis and 4 fractured vertebrae in her lower and mid spine. She is struggling with her memory and cognition more and more as time goes by, and is also now undergoing steroid injections for rheumatoid arthritis in her shoulders and breastbone, and has an ongoing autoimmune skin condition called Lichen Planus and IBS & Diverticulitis. To all intents and purposes, I am an only child as my elder brother passed away from SIDS at 5 months old.

I feel I'm coming to breaking point with everything. Trying to juggle the twins' needs and synptoms and support them through their GCSE exams, look after my Mum on a daily basis, deal with all her paperwork and arrange and take her to her medical appointments as well as try to keep my own health under some semblance of control is exhausting me mentally and physically. My symptoms are increasing, and I'm developing new ones too such as crippling cramp in my rib cage when I move a certain way (which is making cleaning kyaelf after using the loo difficult and very painful) or dare to laugh and also experiencing severe leg cramps that wake me in the night. My sleep is already poor due to the fibro symptoms and so I'm stuck in a vicious circle.

Since Christmas I've put on a stone and a half in weight due to new and additional medications prescribed for my hypertension, and this is having a further detrimental impact on my already affected mobility.

This morning has broken me. As I stated earlier, my son has a sleep disorder. He struggles to get to sleep, but once he has managed to fall asleep, is almost impossible to wake which has led to many frustrating mornings while trying to get him up and ready on time to catch the school bus. Often, when I'm.trying to wake him, he will lash out with arms and legs, and I've learned to step away after trying to rouse him to avoid being hit and kicked accidentally.

I often have call school to say he will be late, or if the morning routine or other event has sent him into overwhelm has occurred that he will be absent that day, and have on occasions videoed myself trying to wake my son to prove to school that I'm not neglecting sending him in and that he genuinely struggles.

This morning after 30 minutes of trying to wake him, I took out my phone to video the struggle, and I accidentally took a photo of the side of my son's bed. He heard the camera shutter and when into a full blown rage, leaping out of bed and hitting me with flat palm in the chest to push me backwards towards the door. This took me by surprise, and I had previously taken off his quilt which was lying on the floor behind me and I stumbled backwards over it, which has made my pain worse. My son was calling me weird and I just retreated at that point and sat at the kitchen table and cried.

My ex-husband had once pushed me backwards out of a doorway in a similar way and then slammed the door on me, giving me a bloody nose and knocking me out for a couple of minutes and this event this morning just took me straight back there and I wasn't expecting that at all.

On the positive side, my son did then get up to catch the bus, and said goodbye before he left.

This all happened an hour and a half ago and I still feel shocked and tearful about it. I dread mornings as it is and can't allow myself to let the fear I felt this morning interfere or deter me from trying to wake him in the future, but right now, I don't know how I'm.going to even step in his room on Monday morning, let alone try to rouse him.

I don't know what i did in a previous life, but I feel I must've been an utterly horrid piece of work to deserve all this life has thrown at me. I detest be negative and strive to find the positives in every situation but today all positivity has disappeared, and I'm frightend that I won't find it again.

Does anyone have any suggestions on how I can possibly support my son in his sleep disorder and the difficulties he faces with this when moving from high-school to college and work life? He's a bright, loving kid as a rule and I don't want his symptoms or our experiences to tar his future. He won't consider any counselling or other talking therapies, which i can understand even though i know he'd probably benefit from them, and by extension, so would I and his sister.

I'm sorry for the long winded post, but I just don't know how to manage anymore.

Mary_Scope

Hi @Mummaru and a warm welcome to the community from me ☺️

You are doing an incredible job and while dealing with a massive amount of challenging circumstances. Your exhaustion and overwhelm are completely valid. I just want to let you know that what happened this morning wasn’t your fault. Even though your sons reaction may not have been intentional, it is still very understandable why it triggered past trauma for you.

Have you had sleep support for your son before? This could look like non verbal wake up tools such as sunrise alarm clock,vibrating alarm clock, using alexa/smart speaker for indirect demands, creating a low-stress morning routine (calm music, warm drink, no direct waking etc).

There is also Cerebra Sleep Service which is a free sleep service for under 16 year olds who have sleep challenges and the Teen Sleep Hub which may be able to provide more sleep specific information and advice.

It sounds like you are doing an awful lot of supporting others so I am wondering if you have support for yourself?

From what you have described it sounds like you would benefit from chatting to your GP about a carer's assessments. This will hopefully open up any doors to support. And it also may be very helpful to have a conversation with them about how you’re feeling and hopefully they will be able to offer some more pain management for your conditions as well as mental health support too.

You are doing your absolute best in an incredibly stressful situation.

You're not alone and none of this is your fault. We are always here for you on the community 😊

Hope this was helpful, please reach out if you would like further support or have any questions!

Catherine21

You have been so much what an incredible lady you are I don't know how to advice about your sons sleeping issues I just wanted to say just remember your important easy to forget that when caring for everyone else sending much love