Friends, Family & Carers Forum

[Anx]

Hey all

I'm new here. I've cruised some of your stories and feel like this is a safe space to share (or just vent) and find a little support from people who understand what living with these condtions is like.

So here's my story. My own anxiety disorder first became apparent as a child, first self harmed at 9. My brother struggled with depression and took his own life at 19. So I'm going to put my hand up and say my own defective genes are probably the root cause of my kids problems.

Eldest son has Autism, ADHD,OCD to start with. Then when he was 21 we discovered he also has a rare genetic disorder that causes blood clots. We discovered this through a massive blood clot in his brain which caused a stroke and long term brain damage. Problem is, the first sympton of a blood clot is usually an ache or pain, but part of his autism is a very high pain threshold so he literally doesn't feel it until it's a major problem. He's on blood thinners for the rest of his life as a result. He's also the funniest kid you'll ever meet and I adore him.

Number 2 son has just been diagnosed with Schizophrenia, after battling mental illness since he was 16 (5 years now). He's done a few stints in hosptial, and will do more in the future. He's stubborn and proud and hardworking (like his mum) so he doesn't like taking his meds because they make him feel tired and dopey. But then he also doesn't like the spider that crawls up his arm and into his ear, so there's no winning this battle. He has a way to go, but I'm hoping he'll be ok. He has good mates around him that have accepted the diagnosis really well. 

Baby girl is 16 now. She was diagnosed with an anxiety disorder at just 7, and has struggled with it constantly since then. When I explained her big brothers new diagnosis to her she said, "oh, like the creepy old guy who whispers over my right shoulder sometimes. I thought he was a ghost." Damn. It's too early for a diagnosis yet, but she will be monitored by the family psychiatrist (I can't believe I have a family psychiatrist... who the hell has a family psychiatrist????). 

Right now I'm feeling like this is all somehow unfair. I didn't drink while pregnant, I was a good mum, feed them well, did everything right. How do I get all this thrown at me?? I know, life isn't meant to be fair and we all just play the cards we're dealt. But some days I wish I was playing a different game.

cheers.

[candycane]

Hi Anx CandyCane one of the moderators here. Welcome to the forums we are glad to have you here!

[greenpea]

@Anx Hi Anx welcome to Forumland. You made me laugh yes laugh because we both have a similar story so I can honestly say that I know..... and sympathise. I have a middle son with autism, epilepsy, schizophrenia and a mild intellectual disability. Been through the wringer of hospitals etc. (will never do it again with him I dont care what transpires ....) anyways .... I have a daughter with depression and Asbergers and epilepsy. 

I have bp and schizoaffective disorder and there you have it in one. Did everything right in pregnancy but there you have it .... Wish we could go and have a coffee and chat lol. The stories I am sure we could share.

I will see you around the boards hopefully. gp

[Anx]

Cheers @greenpea I have to laugh or I'd just curl up and cry, it's so ridiculous. 

I listen to other mothers at work complain about their kids issues sometimes. One has a teenager daughter who's friend just expects a lift all the time without offering to reciprocate. Wow, tragic. Another is worried about whether her son will get the grades to get into the uni course he wants. Hmmm, very concerning I'm sure. I wish I had issues like that! Other mothers just don't understand what you and I live with every day. 

[greenpea]

@AnxHaha! it is so true. I wish I had those problems. I have never had those problems with my kidults.... It has been son attacking father should I phone the police?? Hmmm .... yes I better ... for awhile we had the police on speed diall ... it has calmed down alot now thank god. 

You are right other parents dont get it and it very isolating I find. How can I have a 'normal' conversation with other parents when my son believes he is an alien species who wants to bring his alien family into this realm ....  they just say nothing and I don't blame them I wouldn't know what to say either lol.

It is great you have kept your sense of humour tho. Keeps you sane I think.  Having a good laugh at the situation is very therapeutic.

[Appleblossom]

Hi @Anx I hope you find the forum helpful. You do have a great sense of humour and I am glad your boy gives you joy inspite of all he has endured.  

My family has struggled with many mental illnesses.  It is very isolating.

... but cheers anyway.

[Queenie]

Hi @Anx, I just wanted to welcome you to the forums. In my family we have a family psychiatrist too, so you're definitely not alone there. I live with schizoaffective disorder (bipolar type) and my Mrs lives with BPD and depression. Although we share a GP also (and we book extra long appointments and head in as a family which makes me feel kind of strange like a freak), we have separate psychologists and I find this works well.

I can relate a little to what your son feels like when he doesn't want to take his meds because of the sedating effects of it. However I'd rather be tired and dopey than completely off the rails, so the key is weighing up the pros and cons of the meds. 

I bet sometimes you feel like your avatar (and this is probably why you chose that picture yes?). I hope you will feel supported here on the boards and know you are not alone.