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Newbie feeling blue - Carers UK Forum

Newbie feeling blue

Tell us a bit about yourself here.
Hi, I'm Linda,I care for my 21 year old son who has severe autism,learning difficulties and behavior problems, not sure what to write other than I'm so very very tired,usually I just dust myself off and get on with it but today i don't feel like painting a big smile on my face and pretending to the world that "everything's fine". Today I want to feel sorry for myself,today I want to be selfish and think about me....but then I'll start to feel guilty, anyway thought I'd say Hi....
Hello linda
Welcome to the forum. I can empathise with you, my son is 25, Down's syndrome, autistic and ADHD and can be such hard work but we love him so much. Caring for someone day in, day out, for many years certainly takes it's toll. It's not just the physical caring but it's emotionally draining, socially isolating and so very tiring.
Becoming a member of this forum has made me realise that I am one of many thousands of carers and it brings comfort knowing that I am not alone.
Take care and keep posting.
Lesley
Nothing at all wrong with having a down day/duvet day or whatever kind of day it feels like. Personally I feel that constantly plastering a smile on your face doesn't do anyone any good. Some days are bad, there's nothing wrong with that being the case and letting it show. That said, I do hope you feel better soon because I know feeling like that isn't nice! But don't give yourself a hard time about it, if there's anything you can do to feel like a treat then go for it (some days we just go for a drive or get fish and chips or something, it's just something a bit out of the ordinary and it breaks the day up a bit when I'm struggling with it). But hope things pick up a bit soon.
Linda, I don't see at all why you shouldn't feel 'down'. I'm not saying this to sound smug (I most sincerely sincerely hope not) but my own son is 21 and, thankfully (so far) (because one can take nothing for granted in this world), in good health, and I know how grateful I am for that, how easy it makes both his life, and mine, and how much harder and more worrisome it would be were he to have to cope with what your son is facing day in day out. I do wish you all the very best possible, and it is utterly understandable that there are times when it all seems just too much for you - I don't see why you should have to 'put on a smiley face' all the time at all.

I think, in general, that after winter our energies, mental and physical, are a low ebb, and so I do hope that the brighter weather can bring a lift of your spirits, and renewed energy.

This forum is excellent for a feeling of 'I'm not alone' with our various 'challenges' in our lives (mine is my 91 year old MIL, and living without my husband who died of cancer five years ago), and I hope you find the mix of emotional support, sympathy, good cheer and very often helpful practical advice and encouragement, something that both cheers and re-energises you.

All the best possible to you, Jenny
Welcome to the forum. It's fine to feel blue at times, after all, whilst our friends with children the same age are often now free as a bird to do whatever they want, we can't. My son with SLD now lives in a flat with carer support, after my health failed. Even so, I seem to be endlessly sorting out problems for him at the moment, because his care staff are incompetent. Are you getting enough support, regular time off from caring? There seems to be a huge variation in the amount of support people with learning difficulties get. My son only has a generous care package because at the time he left residential college one of our parents had died, two others were dying of cancer and the fourth was severely disabled. I told the case conference that coming home was simply not an option, and several key people agreed. However, one of my son's friends, same authority, same LD team, gets very little.
LINDA_15022 wrote:Hi, I'm Linda,I care for my 21 year old son who has severe autism,learning difficulties and behavior problems, not sure what to write other than I'm so very very tired,usually I just dust myself off and get on with it but today i don't feel like painting a big smile on my face and pretending to the world that "everything's fine". Today I want to feel sorry for myself,today I want to be selfish and think about me....but then I'll start to feel guilty, anyway thought I'd say Hi....
Hello Linda & welcome to the forum.

Yes, caring's not easy & putting on a brave face 24/7 is even less easy to do but I find that it's what society requires of us, otherwise we'd disrupt the nice fluffy world of the non-carers as they already have enough stress having to plan their next holiday etc. without seeing us ever look miserable.

I chose to be a carer & even I have the odd 'down day', not because I feel sorry for myself for doing the caring but because I see how my wife's life is being affected by her condition.

Caring's a bit like the London street cleaners who work through the night to ensure that the City workers only ever see nice streets whilst us carers ensure that other people only ever see a nicely ordered society with everything in it's proper place.

If anyone ever asks you how you are then you need to remember that, with the exception of us forum members, they don't really want to know, they expect to smile & say "I'm fine, thank you".

Am I cynical or just realistic?

Lol !!