Need to vent/hsndhold

[Peppermintpatty56]

I just need to vent I think and get it all out.

I have a rare neuromuscular disease. Since my diagnosis in 2021, everything totally changed- my mobility, I had to leave my job, my appearance. Because of medications, I now also have pancreatitis and type 2 diabetes amongst other delightful side effects. I haven’t received the correct treatment I needed by any stretch and am now 3 years in and a lot worse instead of better. I’m currently going through a complaints procedure against my consultant. I’ve had multiple hospital admissions - last one a few weeks ago.

I have 4 children. Two of them have ASD and my youngest also has severe ADHD. He’s only just verbal (he’s 6), he’s the most beautiful boy but he’s high needs and incredibly hard work. He’s got no danger perception at all so he has to pretty much be supervised at all times.
My eldest has type 1 diabetes and in February he was rushed into resus with complications of high blood sugars. He almost died and I honestly thought he was going to. I think I have PTSD. He’s 18 and I’m desperately trying to let him live his life but after that day, I just want to wrap him in cotton wool.

We’re also losing our house. It’s being bought to be knocked down and re built. It’s the last straw for me. Suddenly, I feel nothing. I have no excitement or enjoyment left for anything. I can keep it together at home for my dh and kids but the thought of going out or seeing anyone else fills me with dread. I used to enjoy taking pride in my appearance but my hair fell out due to medication and I don’t even care anymore. What’s left of it I’ve chopped and not dyed it in months. I’ve put on 4 stone due to steroids and I don’t recognise my own face anymore.

I don’t know how to get myself back. Or if I even want to at this point.

Hugs OP 💐

I've had similar after a long run of bad luck. I kept up with my job/parenting/caring responsibilities but it was like I was dead inside.

What helped me was speaking to a therapist (you can also go to the GP and start talking about meds etc, but honestly that didn't work for me!)

I also started prioritising things I knew would help me. Time to exercise and eat healthy (I didn't want to, and didn't really have money/time to throw at it, but I knew I needed it so told myself my family needed it too!)

And found things I found fun! Not what I was 'supposed to find fun', because those things were not fun at all. I started playing piano and baking again - hobbies from pre-DC, and those helped.

Good luck!

@FirstTimeHomeowner thank you. I'm so glad you're feeling better now. "Dead inside" is a really good description of how I feel. It's like the stress has gone to nothingness.

I think I probably do need a therapist. I'm already on anti d's so I did think about asking to raise the dose a bit.

I kind of know what I need to do.,. But it's starting it and having the physical and mental energy.

definitely reccommend therapy - not from a personal experience but several friends swear by it for various reasons, and the visible difference in them speaks volumes.

make time for you, whether thats continuing with a hobby/interest or finding something new. I have recently discovered crochet - I am no good (yet!) but I enjoy taking myself off to do it.

you'll get there, the fact you've taken the time out of your day to post here suggests to me you want to find some semblance of 'you'.

@Xmasfairy86 you're right. I do want to, Thank you for replying.
it just feels huge at the moment and I'm not sure where to start. The physical fatigue doesn't help either, two types of exhaustion together is just crippling me.
I want to make things better, but I also want to lie in bed and hide.