SnowdropSenior Contributor
I was going to try and offer support!
I was going to try and offer support to a couple of people who had posted discussions on the forum but I find I just don't have any words of encouragement.
It's hard to be positive at any stage when all you can see are years of more of the same - when despite years of different therapies and despite the odd times when you hold your breath and think 'things are going to get better' you are plunged back into a state of mental and emotional exhaustion.
It's devastating when you know that the person 'causing' you this grief alternates between being totally unaware they are causing you pain and being devastated that they are.
You know they upload on you because who else are they going to upload on? Friends are now ex friends because they don't understand, are frightened by, or just can't cope with the behaviour.
You talk - and in those odd times when things are ok they apologise because they know they are hurting you, but those odd times are few and far between and for the rest of the time you are left walking on egg shells. You wake up worried, you go to sleep worried and yet somehow you have to get through each day.
When the phone rings your heart sinks ........ but you put a positive tone in your voice in the hope that this will be one of the times that you get a positive response - if you do, for one brief moment your heart sings - but through the rest of that call you watch every word you say so you don't say anything wrong.
Not answering the phone is not an option, because then you will worry that maybe it was important to them that they talk to you and if something terrible were to happen you would blame yourself.
I don't know if having the person living with or close to you is better or worse. Maybe it is better living with someone on a day to day basis when you can actually see what is going on and maybe have more of those times when things are ok. However living away means that you are always plagued by thoughts of how they are and what is happening, and the phone ringing gives no pleasure.
Worst part - you don't see an end to it. So many years, so many arguments, so many tears, so much sorrow. So much heartbreak because you can't see that this lonely, hurt child will ever have the same joys as his siblings. You can't even see that they will come to a place where there is some level of peace.
So many therapists, medication, new symptoms, new medication, waiting for it to kick in then realising that won't work - let's try another. And suffering from sleep disorders - which is also being treated ... at the moment unsuccessfully. Not even the bliss for him of being able to sleep for even 6 hours and forget everything.
You scour newspapers, the internet, medical journals, talk to your doctor in the hope that you find something new, something not tried yet that will help your child.
You are grateful that despite all he is able to carry on a job and are pleased that he is self employed because when his days are really bad he doesn't have to work - but another problem - self employed - no work no money!
You remember that little boy, bright as a button and smile to match. You think of the years before things started to go wrong. Jokes told for the 50th time, pleasure at a little gift given - just because, fun with siblings in front of the television laughing at a favourite tv programme, the joy of a family Christmas. and you wonder if that joy will ever return. You hope so, you desperately hope so .... but you have your doubts.
I help with money for rent when necessary, even though I am a prensioner - I don't know the alternative even though I know I won't see it all back. He tries believe me and he does give me small amounts when he can. His work is the thing that keeps him going. Without that he would sink lower and have nothing.
And there is no end in sight .......... you just get through each day as best you can and hold on to the memory of that little boys smile.
I'm beginning to think that when all's said and done no-one can really help. You just put one foot in front of the other and cope as best you can!!
